Summary

One of the major problems that African Americans have is not having access to care or not being able to afford the care that they're given, that [is] actually needed. So, a lot of times, African Americans cannot afford the care. … And then African American females are at higher risk of having cervical cancer. Why? Because a lot of them are not actually going for regular checkups. They can't afford it, they can't get there. So that's one of the main issues.

—Mia R. (pseudonym), Washington County, February 14, 2024

Cervical cancer is a highly preventable and treatable disease that typically develops over several years, providing ample time to detect and treat abnormal changes in cervical cells that could eventually lead to cancer. With access to comprehensive reproductive health care, including information, preventive services, and adequate gynecological care, almost all cases of cervical cancer can be prevented or treated at an early stage. Yet, in the United States, the American Cancer Society (ACS) estimates that approximately 4,360 women will die from cervical cancer in 2024.

There are persistent and glaring racial disparities in rates of cervical cancer deaths in the US. Black women die of the disease at a disproportionately high rate. According to the ACS, the mortality rate for Black women is around 65 percent higher than for white women.

Black women are more likely to be diagnosed with cervical cancer at a later stage and face a lower five-year survival rate (that is, the percentage of people who are alive five years after their diagnosis). Mississippi is the state with the highest rate of cervical cancer deaths in the United States. Black women in Mississippi are almost 1.5 times as likely to die of the disease as white women living in the state, despite Black and white women having nearly identical incidence rates.

Mississippi also has the highest percentage of Black residents in the United States; about 38 percent of the population in Mississippi is Black. Black Mississippi residents are over twice as likely to live in poverty compared to white residents in the state (32 percent versus 13 percent) and Black women in Mississippi are over four times as likely to die of pregnancy-related complications than white women.

In the Mississippi Delta, a rural region with some of the worst health indicators and highest rates of poverty in Mississippi and in the entire United States, racial disparities are even starker, and Black women have an even greater risk of dying from cervical cancer. From 2017 to 2021, Black women living in the Delta were about 1.4 times more likely to die of the disease compared to white women living in the same region.

Structural racism, discrimination, poverty, and inequality contribute to preventable deaths from cervical cancer. Human Rights Watch research in Alabama in 2018 and joint research with the Southern Rural Black Women’s Initiative for Economic and Social Justice (SRBWI) in Georgia in 2022 documented unequal access to cervical cancer prevention and care and differences in cervical cancer outcomes for Black women living in rural communities. Such disparities stem from social exclusion and structural barriers to accessing health care, including the inadequate availability and accessibility of information and services needed to prevent and treat cervical cancer. These preventable deaths from cervical cancer represent the failure of federal, state, and local governments to realize human rights for all people, namely the right to the highest attainable standard of health and to comprehensive, affordable, and accessible reproductive healthcare services and information.

Between May 2023 and November 2024, SRBWI and Human Rights Watch partnered with 10 community-based researchers and a research associate based in the Delta to document factors contributing to the disproportionate rate of cervical cancer deaths for Black women in the Mississippi Delta. Between September 2023 and April 2024, the community-based researchers and research associate interviewed 159 Black women ages 19 to 81 in Bolivar, Humphreys, and Washington counties. In addition, SRBWI and Human Rights Watch spoke with community members, academics, medical providers, public officials, and members of nongovernmental health, reproductive rights, and justice groups in Mississippi.

Access to Cervical Cancer Prevention and Care in the Mississippi Delta is Inadequate and Worsened by State Policies

Our research found that women in the Mississippi Delta lack adequate access to cervical cancer prevention and care, and that the state, local, and federal governments have not done enough to ensure such access. Instead of ensuring access to comprehensive and affordable health care for all residents, Mississippi state policies—including its failure to expand Medicaid, the US public health insurance program for people with low-incomes, and its near total ban on access to abortion with extremely limited exceptions—have created additional barriers to accessing health care. Mississippi has one of the highest rates of uninsured individuals in the United States. As of 2022, an estimated 10.8 percent of the state’s population did not have health insurance. As of January 2023, almost 18 percent of women of reproductive age (18 to 44) were uninsured, and rates were even higher for women of color.

The Mississippi state government’s actions helped create this dire situation. Mississippi is one of the 10 states in the United States that have not expanded Medicaid through the Affordable Care Act (ACA), which would have extended healthcare coverage to more low-income individuals. Instead, Mississippi has seen a significant drop in Medicaid enrollment since March 2023, when the continuous coverage provision of the Families First Coronavirus Response Act (FFCRA), enacted at the start of the Covid-19 pandemic in 2020, ended. From then to June 2024, Medicaid enrollment in Mississippi decreased by 26 percent.

Mississippi’s failure to expand Medicaid, which has also contributed to rural hospital closures, has also helped fuel a shortage of obstetrician-gynecologists (ob-gyns) in the state. The problem of hospital closures—and a resulting healthcare crisis in the state—continues to worsen. A December 2024 report from the Center for Healthcare Quality and Payment Reform found that more than half of rural inpatient hospitals in Mississippi were at risk of closing, with 25 at risk of immediate closure, making Mississippi the state, along with New York, with the second highest percentage of rural hospitals at risk of immediate closure.

These hospital closures have reduced the number of health facilities and medical personnel available to help prevent and treat cervical cancer. This decline is made worse by a shortage of gynecologists and inadequate public transportation, which can make Freaching existing services difficult if not impossible for many underserved women requiring care, especially in extremely rural areas like the Delta. Currently, Mississippi has a severe shortage of ob-gyns. More than half of its 86 counties, including 8 of the 18 counties in the Mississippi Delta, are considered “maternity care deserts,” without hospitals or birth centers providing obstetric care, ob-gyns, or certified nurse midwives or midwives. Only seven counties in the Mississippi Delta have any licensed ob-gyns.

The state of Mississippi’s hostility toward reproductive rights and its restrictive law on abortion access has also harmed access to gynecological care. Mississippi banned abortion in June 2022 following the Dobbs v. Jackson’s Women Health Organization decision, in which the US Supreme Court overturned Roe v. Wade and eliminated the constitutional right to abortion access. After Roe v. Wade was overturned, medical students reported that restrictive laws on abortion access have deterred them from practicing in states where abortion is banned. States with abortion bans have fewer ob-gyns and maternity care providers, more “maternity care deserts,” and higher rates of maternal mortality and infant death, especially among women of color. Research in states with abortion bans has shown that people seeking a broad range of pregnancy-related health care experience life-threatening delays and denials of care.

Because Mississippi does not provide comprehensive and affordable healthcare coverage, low-income and uninsured women, especially those who do not qualify for Medicaid under the state’s restrictive enrollment requirements, must rely on a patchwork of various state and federal programs to access reproductive healthcare services. Each of these programs have different eligibility criteria and often limit coverage to only certain services. This creates fluctuating access to healthcare services, gaps in cervical cancer prevention and care, and a system that can be very difficult for people in need of health care to navigate.

Without health insurance that makes care affordable, low-income and uninsured women in Mississippi—who are disproportionately Black—face significant barriers to obtaining comprehensive reproductive health care, including routine cervical cancer screenings and follow-up care after abnormal test results. Women we interviewed told us that at times they go without or delay important medical appointments because of cost, including cervical cancer screenings and follow-up care, forgoing lifesaving opportunities to prevent and treat the disease. 

In addition to state laws and policies that make it harder for people to access comprehensive reproductive health care, Mississippi has also failed to provide adequate, accessible, and affordable public transportation throughout the state, including in rural areas like the Mississippi Delta. In the Delta, an extremely rural region where healthcare facilities are sparse and spread out, adequate and affordable transportation has always been essential to accessing health care. Given a lack of ob-gyns and adequate access to comprehensive reproductive health care in many parts of the Delta, inadequate transportation options that cannot meet demand have made accessing cervical cancer care, including follow-up care requiring a specialist, impossible for some. Many of the women interviewed for this report described needing to travel over an hour to access gynecological care and facing significant practical and financial obstacles to doing so, due to a lack of affordable transportation options, public or private.

Distrust of Medical Providers, Racism, and Racial Discrimination Negatively Impact Cervical Cancer Prevention and Care

Reported distrust of medical providers and the healthcare system—often arising from demeaning experiences, concerns around quality of care, health insurance status, and a lack of confidentiality—impacts some women’s willingness to seek reproductive and gynecological care. These negative experiences can and have led to distrust of medical providers, including gynecologists, and can cause some women to avoid getting necessary cervical cancer prevention and care. Our research found that structural racism and discrimination within the healthcare field impacts the quality of care many Black women receive, their level of trust and confidence in medical providers, and, for some, even their willingness to engage with the healthcare system. In addition, racism and discrimination leads to unequal gynecological care and differences in treatment for Black women, with studies showing that Black women are less likely to receive recommended cervical cancer treatment, including surgery at an early stage.

Inadequate Efforts to Ensure Access to Information on Sexual and Reproductive Health and Encourage HPV Vaccine Uptake

Women and girls in Mississippi do not have adequate access to the information they need to make informed decisions to prevent and treat cervical cancer, including information on the human papillomavirus (HPV), the HPV vaccine, and its role in preventing cancer. State policies have failed to ensure that all young people receive comprehensive, inclusive, rights-based, and scientifically accurate information on sexual and reproductive health. Consequently, many people in Mississippi lack lifesaving information, including about the HPV vaccine, and many women and girls do not fully understand the steps they can take to prevent cervical cancer and stay healthy and safe throughout their lifetime.

Mississippi has both high rates of HPV-related cancers and low HPV vaccination rates. By 2023, approximately 38 percent of adolescent children ages 13 to 17 in the state had received all recommended doses of the HPV vaccine, and Mississippi ranked last in the United States for HPV vaccination rates. A lack of knowledge of the HPV vaccine has contributed to low vaccination rates not only in Mississippi, but also across the United States. Fewer than half of the women SRBWI and Human Rights Watch interviewed reported being knowledgeable about the HPV vaccine and its role in preventing cancer, including several parents of adolescents ages 10 to 19 living at home who had not received the vaccine. This lack of information on sexual and reproductive health also fuels misinformation, fear, and stigma and prevents many women from openly discussing their health concerns or seeking care.

To address the urgent situation in Mississippi, where women of reproductive age currently face the worst outcomes for women’s health in the country, state and federal agencies should do much more to eliminate the barriers women and girls face to accessing lifesaving health care.

Everyone has the human right to the highest attainable standard of physical and mental health. Under international human rights law, the United States—and each of its 50 states—is obligated to respect, protect, and fulfill the rights to health, information, equality, and nondiscrimination, all of which are relevant to its obligation to protect and promote the rights of women and girls in Mississippi. The state should take concrete steps to reduce racial disparities in cervical cancer outcomes and ensure the health and rights of all women and girls by: expanding Medicaid to increase access to affordable health care for Mississippi residents; ensuring comprehensive sexual and reproductive health information and services, including cervical cancer prevention and care, are available and accessible in all areas of the state, including in the Mississippi Delta; and passing legislation to raise awareness of the human papillomavirus (HPV) vaccine and increase HPV vaccination rates in Mississippi.

Building on a Legacy of Community-Based Health Care

The Mississippi Delta is a region of rich, fertile soil, renowned for its contributions to civil rights activism, blues, art, and storytelling. Home to both the plantation economy and the civil rights movement, the region is one of contrasts—of subjugation and achievement, of structural poverty and inequality, and of resilience and community innovation. Here, trailblazers like Medgar Evers, Fannie Lou Hamer, and Unita Blackwell planted seeds of change and advancement that continue to flourish today.

Among the Delta’s trailblazers, Dr. Robert Smith transcended the barriers of racism through a life dedicated to civil rights and medical activism. From Tougaloo College to Howard University College of Medicine, to his return to the Delta, Dr. Smith’s career helped to lay the foundation for community-based health care in the Delta, highlighting the critical role of grassroots activism and collective care in transforming health outcomes. He was one of the first Black physicians to confront racist policies in the American Medical Association and in Delta hospitals, challenging restrictions that denied Black doctors and patients access to care. Alongside the Children’s Defense Fund founder and President Emerita, Marian Wright Edelman, he spotlighted the medical neglect of Mississippi’s children. In 1962, he co-founded the Medical Committee for Human Rights, providing care to civil rights activists, and later spearheaded the establishment of the first federally qualified health center (FQHC), Delta Health Center, in Mound Bayou, Bolivar County. Currently, Delta Health Center serves about 15,000 patients each year, fostering access to health care and addressing social determinants of health impacting the well-being of historically underserved communities in Mississippi. Its 20-acre farm in Mound Bayou provides fresh fruits and vegetables for the community— something many people in the Delta struggle to obtain. Today, FQHCs are one of the main providers of health care for people without means in the United States, and this model Dr. Smith helped initiate has saved countless lives and has had a lasting impact in Mississippi and across the entire US.

Yet, despite the progress made, the Delta’s landscape still reflects historical disparities where Black women and families often bear the brunt of systemic inequities. This research, inspired by the legacy of Dr. Smith and other trailblazers, seeks to illuminate persistent gaps in access to quality health care and health inequalities through the lived experiences of those most impacted. Through this report, we aim to foster a future that honors the lives and well-being of all Delta residents, bridging these gaps and building a healthcare system rooted in equity, access, and justice for all.

Recommendations

To the Mississippi State Government

To the Governor

• Support the expansion of Medicaid under the Affordable Care Act (ACA) to increase access to health care, including cervical cancer care, for Mississippi residents.
• Develop and implement a comprehensive, rights-respecting plan to eliminate cervical cancer deaths as well as racial disparities in health outcomes in Mississippi, and ensure consistent and adequate funding of this plan from the state legislature.

To the State Legislature

• Pass legislation to expand Medicaid under the ACA to increase access to health care, including cervical cancer care, for Mississippi residents.
• Repeal the ban on access to abortion and ensure everyone has equal access to the full spectrum of reproductive health care, including abortion care.
• Increase funding for the Mississippi State Department of Health to ensure comprehensive, affordable, and accessible healthcare services are available to low-income and uninsured Mississippians at all 86 county health departments, including greater access to cervical cancer screenings and follow-up care.
• Pass legislation to raise awareness of the human papillomavirus (HPV) vaccine and increase HPV vaccination rates in Mississippi that mandates:
  • dissemination of information on the adolescent vaccines recommended by the Advisory Committee on Immunization Practices (ACIP) to the parents or guardians of all students in Mississippi entering the sixth grade;
  • education on HPV and the prevention of HPV-related cancers for all students starting in sixth grade; and
  • allocation of state funding to community-based organizations for public awareness and outreach campaigns around HPV, the HPV vaccine, and HPV-related cancers and their prevention, including the dissemination of information on the risk of cervical cancer for women ages 65 and older.
• Pass legislation to require all Mississippi schools to provide comprehensive sexual health education that is age-appropriate, rights-based, scientifically accurate, inclusive, and responsive to all young people’s needs.
• Appropriate funds to support the implementation of comprehensive sexual health education in all Mississippi schools.
• Pass legislation establishing a formal community health worker certification program in Mississippi to support community health outreach programs.
• Institute and expand incentives for obstetrician-gynecologists and other healthcare providers to practice in the Mississippi Delta and other rural, underserved areas in Mississippi.
• Increase funding and support programs and scholarships that assist minority and underrepresented communities in pursuing a career in health care to increase diversity within Mississippi’s healthcare workforce.
• In collaboration with communities and community-based development and advocacy organizations and agencies, support, develop, and fund initiatives and programs to increase the availability of accessible public transportation in the Mississippi Delta for the purposes of accessing healthcare services.
• Adopt measures to expand available, accessible, and affordable high-quality telehealth services in rural areas to increase access to healthcare services.

To State Agencies, including the Department of Health and the Department of Education

• Ensure reproductive health and cervical cancer services are available and accessible in the Mississippi Delta and other rural areas, including through the use of mobile health clinics.
• In collaboration with communities, conduct public awareness and outreach campaigns to inform Mississippians of:
  • healthcare services, including cervical cancer care, offered by federal and state programs, including the MS-BCCP, and county health departments;
  • cervical cancer prevention and care, including the HPV vaccine, screenings, and follow-up care.
• Support and fund community-based initiatives to increase awareness of and uptake of the HPV vaccine, including through vaccination clinics at schools, public health fairs, and other community events.
• Develop and implement programs to ensure available, accessible, and affordable cervical cancer follow-up care, including colposcopies, in all communities with a focus on rural and underserved communities.
• Support community health workers and community-based approaches to reproductive health care that address healthcare access and social determinants of health.
• Partner with local communities, groups, and organizations to implement community-based initiatives to educate young people, including those who are out of school, on healthy sexual behaviors and address stigma around sexual health.
• Disseminate information on HPV, the HPV vaccine, and the prevention of HPV-related cancers to parents or guardians of all students in Mississippi entering the sixth grade and ensure education on HPV and prevention of HPV-related cancers for all students starting in sixth grade.
• Increase targeted outreach, awareness-raising, and trainings for healthcare providers to ensure they make strong recommendations for the HPV vaccine as an effective cancer prevention tool.
• Ensure any updated versions of the Mississippi State Cancer Control Plan include clear goals, objectives, and indicators focused on increasing awareness of the HPV vaccine as well as HPV vaccination rates in Mississippi.
• Ensure medical providers and all women, including those over 65, have access to information on the importance of cervical cancer screenings and the need for continued screening after age 65 for women at high-risk or with irregular or undetermined screening histories.
• Require and provide cultural competency, implicit bias, and anti-racism trainings to healthcare providers to address how structural racism manifests within the healthcare field and impacts patients’ treatment and quality of care.

• Widely disseminate information on the complaint mechanism for patients who use public health departments, including information on how to access it, aggregate data on complaints received, and remedies implemented.

• Ensure affordable and accessible transportation services for visits to the nearest county health department providing services and for follow-up care as needed is available to all Mississippians, especially in counties whose health departments have reduced hours and limited the availability of services.

To the United States Government

To the President

• Urge all US states that have not done so to adopt full Medicaid expansion.
• Establish a national coordinating mechanism to monitor implementation and compliance with the International Convention on the Elimination of All Forms of Racial Discrimination.
• Work with Congress to pass the Women’s Health Protection Act or similar legislation creating legal protection for the right to provide and access abortion care throughout the US.

To Congress

• Pass the Jeanette Acosta Invest in Women’s Health Act or similar legislation aimed at addressing high rates of preventable cervical cancer deaths, including racial disparities in mortality rates.
• Support Medicaid expansion in all 50 states as an important measure for addressing preventable gynecological cancer deaths.
• Create a federal Medicaid-style program to expand affordable healthcare coverage to low-income individuals in the 10 states that have not expanded Medicaid until they have done so.
• Fund a study and demonstration project on barriers to transportation impacting the ability of low-income individuals, particularly women of color, in rural areas to travel to appointments for cervical cancer screenings and follow-up care.
• Stop funding abstinence-only education grants and health education programs that are scientifically inaccurate, discriminatory, or unresponsive to the needs of all students.
• Ensure adequate funding for scientifically accurate, comprehensive sexual health education programs.
• Enact the Real Education for Healthy Youth Act or similar legislation to support comprehensive sexual health education.
• Pass the Women’s Health Protection Act or similar legislation creating legal protection for the right to provide and access abortion care throughout the US.
• Integrate into domestic law and policy the requirements of the Convention on the Elimination of All Forms of Racial Discrimination and the CERD Committee’s August 2024 guidelines outlining steps governments should take to address racial discrimination in health care.

To the US Department of Health and Human Services

• Recommend to the Health Resources and Services Administration (HRSA) that colposcopy, a diagnostic test for cervical cancer and precancerous lesions, and early interventions like ablative treatments, are included as preventive care under the ACA’s essential health benefits mandate.
• Review and adjust the current methodology for cervical cancer data analysis to ensure that it reflects the true rates of cervical cancer incidence and mortality. The review should consider whether including women with hysterectomies in the at-risk population artificially lowers reporting on racial disparities in cervical cancer rates.

To the American Cancer Society and the American College of Obstetricians and Gynecologists

• Review current cervical cancer screening guidelines to ensure that they do not miss opportunities to prevent cervical cancer or lead to inequitable health outcomes on the basis of age or race.

Methodology

The Southern Rural Black Women’s Initiative for Economic and Social Justice (SRBWI) and Human Rights Watch jointly conducted the research for this report from September 2023 through November 2024. Ten community-based researchers—whom the partners recruited, onboarded, and trained—and a research associate based in the Mississippi Delta conducted qualitative interviews. Staff from Human Rights Watch and SRBWI jointly developed the research design, facilitated training for the community-based researchers, and conducted additional interviews and research analysis.

Individual interviews were conducted with 159 Black women in Bolivar, Humphreys, and Washington counties in the Mississippi Delta between September 2023 and April 2024. SRBWI and Human Rights Watch selected the Mississippi Delta because they sought to document the specific barriers that Black women living in predominantly rural and Black communities in the state face in accessing reproductive healthcare information and services. Bolivar, Humphreys, and Washington counties were specifically chosen because SRBWI has Human Rights Commissions in those counties headed by human rights commissioners who are actively engaged in local and regional advocacy and community-based initiatives.

Community-based researchers identified interviewees primarily through their established connections within their communities. However, outreach strategies, including the use of social media and flyers, were also used to help ensure diverse representation of women beyond these existing networks. Interviewees who disclosed their age were between the ages of 19 and 81 at the time that they were interviewed; three interviewees declined to disclose their age. Interviews were conducted in person at various locations in the counties convenient to the interviewees.

SRBWI and Human Rights Watch facilitated virtual and in-person training sessions for the community-based researchers on conducting ethical research to protect the safety and confidentiality of interviewees. They provided ongoing project supervision and research support through one-on-one check-ins as well as bimonthly group trainings and meetings.

SRBWI and Human Rights Watch also consulted or interviewed a total of 49 academics, medical providers, public officials, and members of nongovernmental health, reproductive rights, and justice groups in Mississippi.

SRBWI and Human Rights Watch conducted background research and analyzed quantitative data, including data compiled through publicly available sources and aggregate data about cervical cancer statistics in Mississippi.

Prior to the start of the project, three external advisors, including a community member from the Mississippi Delta, provided an independent research design review with the goal of ensuring that all appropriate steps had been taken to protect the rights of all participants involved in the research project. They reviewed project design and research materials—including informed consent protocols—and provided feedback, which SRBWI and Human Rights Watch worked to incorporate into final materials and design.

All interviews were conducted in English. All interviewees were informed of the purpose of the interview, its voluntary nature, and the ways that their information would be collected and used. They were also told that they could end the interview at any time or decline to answer any questions without negative consequences.

Community-based researchers adhered to specific protocols to ensure that the women they interviewed had consented to participate in the research in a fully informed manner. Prior to the start of interviews, women interviewed by community-based researchers received a written consent form, either through an electronic or hard copy. This document included a detailed explanation of: the purpose of the interview; its voluntary nature; the ways that information would be collected, securely stored, and used; any foreseeable risks associated with participating in the interview; and the contact information for project leads from SRBWI and Human Rights Watch. At the start of each interview, community-based researchers reviewed the full content of the consent form with the potential participant and proceeded with the interview only if the interviewee felt comfortable doing so.

For interviewees who wished to remain anonymous, this report uses a pseudonym, indicated in the footnote. For all others, we only use their first names and the initial of their last name to protect their privacy.

Community-based researchers received compensation for their time. In keeping with Human Rights Watch’s standard practice, interviewees did not receive any compensation. Light refreshments such as snacks and water were offered during a few interviews. Interviews lasted from 20 minutes to one hour.

A Note on Terminology

This report uses the term “woman” in reference to those who are at risk of cervical cancer because the interviewees identified themselves as such. However, SRBWI and Human Rights Watch recognize that cervical cancer can impact anyone who has a cervix: women and people who do not identify as women, namely gender non-conforming people and some trans men. People who are at risk of cervical cancer who do not identify as women face unique challenges in accessing necessary sexual and reproductive health care, including cervical cancer care. This report does not include a focus on those unique challenges.

This report uses “people of color” when describing individuals and communities who may identify as: Black or African American; Hispanic, Latina, or Latinx of any race; Asian or Pacific Islander; North African or Middle Eastern; Indigenous; or multiracial. We use the term “Black” in reference to individuals of African descent or those who identify as such.

In this report, the term “child” refers to anyone under the age of 18, consistent with usage in international law. The report uses the term “adolescent” to refer to children and young adults ages 10 to 19, consistent with the World Health Organization’s definition.

Finally, this report sometimes refers to distances to services as being “minutes away.” This reflects the interviewee’s approximation of how long a patient would expect to travel by car to reach a facility providing care. 

Overview of Cervical Cancer Prevention and Treatment

Cervical cancer is both highly preventable and highly treatable. The disease typically progresses slowly, providing time to detect and treat the early changes in cervical cells that could eventually lead to cancer. Almost all cases of cervical cancer are caused by a persistent infection with high-risk strains of a virus called the human papillomavirus (HPV),^[1] which is the most common sexually transmitted infection in the United States.^[2] Although most HPV infections typically clear up on their own within a few years, persistent infection with certain high-risk strains of HPV can cause changes in cervical cells that can lead to cancer.^[3]

Cervical cancer deaths can largely be prevented through four key interventions:

1. Prevention, including access to information and the HPV Vaccine. The HPV vaccine is a safe and effective cancer prevention tool. It helps prevent six types of cancer, including cervical cancer. The Centers for Disease Control and Prevention (CDC) recommends two doses of the vaccine for all adolescent children ages 11 and 12 years, although the vaccine can be given as early as 9 years old and as late as 45.^[4]
2. Routine cervical cancer screenings to detect abnormal changes in cervical cells at an early and treatable stage. Screening tests include: Pap tests (or Pap smears) which detect precancerous changes in cervical cells; and HPV tests which check for high-risk strains of HPV that can cause these changes in cervical cells.^[5]
3. Timely follow-up after abnormal test results. If screening test results are abnormal, timely follow-up with a medical provider is necessary. Depending on the results, further testing and treatment options differ, with some individuals requiring only monitoring and repeated testing. Others may need a colposcopy, a procedure that uses a colposcope—a magnifying device—to allow a healthcare provider to look closely at the cervix.^[6] A colposcopy usually includes a biopsy, a procedure which removes a piece of tissue from the cervix for closer examination under a microscope.^[7]
4. Early and appropriate treatment. For some individuals, it may be necessary to treat and remove precancerous cervical lesions found during screenings and diagnostic tests. There are several procedures used to do so including: conization, often called a cone biopsy, which removes a cone-shaped piece of tissue from the cervix, including abnormal tissue; loop electrosurgical excision procedure (LEEP), which uses an electrical wire loop to remove abnormal tissue; laser ablation, which destroys abnormal tissue using a laser beam; and cryotherapy, a procedure that freezes and destroys abnormal cells.^[8]

Background

Overview of Mississippi, the Mississippi Delta, and Counties Covered in the Report

Mississippi

Located in the southeastern United States, the state of Mississippi consists of 82 counties, 65 of which are considered rural areas by the US Census Bureau.^[9] Mississippi is the state with the highest percentage of Black residents in the United States; about 38 percent of the population in Mississippi is Black.^[10] Mississippi also has high rates of poverty, and almost 20 percent of Mississippians live below the federal poverty line—which is about $15,000 for a single-person household or $31,200 for a family of four in 2024—compared to approximately 12 percent nationwide in the United States.^[11]

Mississippi is persistently ranked the worst in the country for many health indicators; in 2023, it was ranked last in the country for overall health in a report by the Commonwealth Fund.^[12] Mississippi has high rates of obesity-related illnesses, heart disease, and other chronic illnesses.^[13] As of 2018, Mississippi had the highest rate of amputations, almost triple the national average,^[14] reflecting both high rates and poor treatment of diabetes.[15] Mississippi has the highest infant mortality rate and one of the worst maternal mortality rates in the country.^[16]

There are significant disparities in health outcomes between Black and white people in Mississippi.[17] Black people are less likely to be insured and are over twice as likely to live in poverty compared to white people in the state (32 percent versus 13 percent).[18] Racial disparities in maternal mortality rates are especially glaring, with Black women over four times as likely to die of pregnancy-related complications than white women in the state.^[19]

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The Mississippi Delta

The Mississippi Delta is an alluvial floodplain in the lower Mississippi River Valley in the northwestern part of the state. It consists of 18 counties, including: Bolivar, Carroll, Coahoma, DeSoto, Holmes, Humphreys, Issaquena, Leflore, Panola, Quitman, Sharkey, Sunflower, Tallahatchie, Tate, Tunica, Warren, Washington, and Yazoo.

The Delta is one of the poorest regions in the entire United States, and about 60 percent of its residents live in poverty.^[20] This, in addition to centuries of racial oppression, underinvestment, and entrenched inequality have created deep and persistent forms of social, economic, and political exclusion for people living in the Delta. Its residents, the majority of them Black, face some of the worst health indicators and outcomes in the country, including high rates of cardiovascular disease and obesity, and the Delta has the highest rate of strokes in the state.^[21] Health infrastructure in this rural region is inadequate, so residents struggle with the lack of accessible and available medical care, which contributes to poor health outcomes.^[22] All 18 counties in the region are designated as medically underserved areas.^[23] The area’s legacy of slavery, segregation, and racial oppression continues to impact the health and well-being of Black Mississippians in the Delta, yet the region is also defined by a legacy of Black resistance, community organizing, resilience, and cultural evolution.

Bolivar County

Bolivar County is on the western edge of the Delta. The population is about 30,000 people and approximately 64 percent of residents are Black.^[24] According to a 2022 report by the University of Wisconsin Population Health Institute looking at overall health in each county in the state, Bolivar County ranks 67^th in Health Outcomes and 59^th in Health Factors among the state’s 82 counties.[25] The county continues to face stark racial and economic disparities. About 29 percent of residents live below the federal poverty line,^[26] and this burden falls disproportionately on the Black population.

Bolivar County’s healthcare infrastructure grew out of a long history of civil rights activism and self-sufficiency initiatives including the establishment of the North Bolivar County Farm Cooperative and its partnership with the Tufts-Delta Medical Center in 1967 focused on responding to food insecurity and malnutrition among Black residents.[27]  The center later became the Delta Health Center, the first rural community health center, also known as federally qualified health centers (FQHCs), in the US.[28] Bolivar County was also home to Taborian Hospital, the second oldest medical facility for Black Mississippians, which operated from 1942 until 1983.[29] Despite the availability of health care in the county, many residents face barriers related to insurance and income. Bolivar County’s history is marked by the ongoing strength and perseverance of its Black community in the face of entrenched inequality.

Humphreys County

Humphreys County lies in the heart of the Mississippi Delta and is known as the “Farm-Raised Catfish Capital of the World.” Its population as of 2023 was around 7,200 people, and almost 77 percent of county residents are Black.^[30] About 32 percent of residents live in poverty.[31] Humphreys County ranks 80^th in Health Outcomes and 79^th in Health Factors among the state’s 82 counties according to a 2022 report by the University of Wisconsin Population Health Institute.[32]

The county’s economic and healthcare challenges are severe. It has lacked a hospital since 2013, creating major gaps in access to essential health care, including maternal care.[33] The story of Harmony Ball-Stribling, a Black woman who died in Humphreys County in 2021 from pregnancy-related complications due to inadequate medical resources, underscores how rural healthcare deserts and systemic inequalities continue to harm the region’s Black women and families.[34]

Humphreys County has a powerful history of Black resilience. In the 1950s, the county seat, Belzoni, was a center of civil rights activity. Reverend George Lee, a civil rights leader and vice president of the Regional Council of Negro Leadership, co-founded the Belzoni branch of the National Association for the Advancement of Colored People (NAACP). He was assassinated in 1955 after advocating for voter registration,[35] and his death remains a stark reminder of the violence Black activists faced in this community and across the US.

Washington County

Washington County, which sits in the heart of the Mississippi Delta, has a population of 42,000, almost 74 percent of whom are Black. ^[36] Many of its residents have roots in the agricultural labor dominating the region’s economy. Approximately 27 percent of residents live in poverty.[37] According to a 2022 report by the University of Wisconsin Population Health Institute, the county ranks 77^th in Health Outcomes and 69^th in Health Factors among the state’s 82 counties.[38]

Washington County also has a legacy of Black resilience, exemplified by significant civil rights activism in the 1960s. In Washington County in 1966, landless Black farmers occupied Greenville Airforce Base demanding not just food and jobs, but also land and the opportunity to build a future for their families and communities.[39] These protests reflected the Black community's recognition of how food sovereignty and land ownership were integral to health and well-being. These movements symbolized the community’s agency and their vision for social and economic advancement.

Cervical Cancer Incidence and Mortality Rates among Black Women in the United States

Cervical cancer is highly preventable and treatable. It is a disease that almost no one should die from. Yet every year, Black women across the United States, including in Mississippi, die from cervical cancer at disproportionately high rates. The American Cancer Society estimates that approximately 4,360 women will die from cervical cancer in 2024, including 60 women in Mississippi.[40]

Across the United States, cervical cancer incidence and mortality rates have decreased by more than half since the mid-1970s due to advances in prevention and screening, but they have leveled off in the past decade.[41] Racial disparities in cervical cancer persist and Black women continue to die of the disease at much higher rates than white women. According to the American Cancer Society, the mortality rate for Black women is around 65 percent higher than for white women[42]; the disparity is even higher when the data excludes women who cannot develop cervical cancer due to having undergone a hysterectomy.[43]

Black women are more likely than white women to be diagnosed with cervical cancer at a later stage and face a lower five-year survival rate (that is, the percentage of women who are alive five years after their diagnosis) even when cervical cancer is caught early.[44] They are also more likely to die at every stage of cervical cancer.[45] Research has shown that  differences in access to quality health care and adequate treatment for cervical cancer contribute to Black women’s lower survival rates.[46]

Black Women in Mississippi and the Delta Die from Cervical Cancer at Disproportionate Rates

In Mississippi, the cervical cancer incidence rate is above the national average, and the state has the highest cervical cancer mortality rate in the United States.[47] In 2021, despite Black and white women having almost identical cervical cancer incidence rates in the state, Black women’s mortality rate was almost 1.5 times higher than that of white women.[48]

Black women living in the Mississippi Delta face an even greater risk of dying from cervical cancer.[49] Mortality rates for Black women living in the Delta are higher than those for Black women outside the Delta and for white women in the Delta. [50] From 2017 to 2021, Black women in the Delta were about 1.4 times more likely to die of the disease compared to white women living in the same region.[51]

The alarming disparities in cervical cancer deaths in Mississippi mirror the racial disparities in health that leave Black women at a higher risk overall for poor health outcomes across the US, and especially in Mississippi. Women in Mississippi currently face some of the worst health indicators and outcomes in the United States. A recent study ranked the state as the worst in the US for women’s health and reproductive care.[52]

For Black women in Mississippi, structural racism, discrimination, and inequality compound barriers to adequate sexual and reproductive health, increasing their risk of poor health outcomes, including from a highly preventable and treatable disease such as cervical cancer. Human Rights Watch’s research in Alabama in 2018 and joint research with SRBWI in Georgia in 2022 documented unequal access to cervical cancer prevention and care and differences in cervical cancer outcomes for Black women in rural communities. Such disparities stem from exclusion from the healthcare system and unequal access to the information, interventions, and services needed to prevent and treat cervical cancer.

Inadequate Access to Cervical Cancer Prevention and Care in the Mississippi Delta

Our poverty levels are higher than the national average and higher compared to other states in this country. So you combine [that] with lack of access to care because maybe you don’t have insurance, you don’t have money, out-of-pocket money to pay for it, you’re in a poor state. You’re going to have higher rates [of cervical cancer] just because most of the factors that you need in order to keep yourself healthy, you don’t have access to.

—Dr. Sandra Carr Melvin, CEO of the Institute for the Advancement of Minority Health, August 7, 2024

Most cases of cervical cancer can be prevented with access to routine and comprehensive gynecological care. However, Black women living in the Mississippi Delta—many of whom are low-income and uninsured—face significant obstacles to obtaining the lifesaving services and care needed to prevent and treat cervical cancer.

Despite having high cervical cancer screening rates, Mississippi has the highest cervical cancer death rate in the United States.^[53] Racial disparities in mortality rates are glaring, and Black women continue to die of the disease at higher rates. The federal and Mississippi state governments have made decisions that undermine the ability of many Black women to have access to comprehensive, affordable, and quality cervical cancer prevention and care throughout their lifetime. Instead, Black women in Mississippi continue to face exclusion from the healthcare system and significant barriers to accessing comprehensive cervical cancer care, including essential follow-up care.

“People are getting Pap smears, but we’re still having high rates of cervical cancer diagnosed,” said Dr. Christen Haygood, a gynecologic oncologist in Mississippi and the HPV Vaccine Committee Chair for District VII of ACOG. “That tells me they’re not having treatment or appropriate follow-up for those [abnormal] Pap smears. We got to have access to treatment for those pre-invasive lesions before they become a cancer.”^[54]

Gaps in access to essential follow-up care was recently documented by research from STudying Risk to Improve DisparitiES in Cervical Cancer in Mississippi (STRIDES), a collaborative research team consisting of the National Cancer Institute (NCI) and the University of Mississippi Medical Center examining comprehensive cervical cancer prevention and control throughout the state. STRIDES found a high prevalence of abnormal cervical cancer screening results in Mississippi as well as high rates of HPV among individuals 30 and older, including high rates of HPV in the Mississippi Delta.[55]  It also found that despite high cervical cancer screening rates, almost 40 percent of people with abnormal screening results requiring a follow-up colposcopy did not receive one.^[56] In the neighboring state of Alabama, research found that over half of all women did not receive timely follow-up and necessary treatment after abnormal cervical cancer screening tests, with Black women having the lowest rates of follow-up.^[57]

Women in the Mississippi Delta face a dire lack of access to comprehensive, affordable, and accessible cervical cancer prevention and care. Barriers to access have been exacerbated by state laws and policies, namely Mississippi’s failure to expand Medicaid and near total ban on access to abortion. While multiple federal- and state-funded programs and resources provide health care to select low-income and uninsured women in Mississippi, they are inadequate and fail to ensure consistent and comprehensive health care. Additionally, the lack of accessible and affordable transportation options, especially in a rural region like the Delta where healthcare providers and facilities are limited and spread out, creates further challenges for women seeking gynecological care. These obstacles to reproductive health and cervical cancer care have disproportionately impacted the health, lives, and rights of Black women and girls and have left many struggling without access to essential health care.

Women’s Financial Challenges and Choices Regarding Cervical Cancer Care

If you don't have money, if you can't afford to get to a doctor, if you can't take off work to get to a doctor, if you don’t know what screenings you’re supposed to get and when, you're not going to automatically think, “Okay, every three years I need to go in for a Pap smear.” You’re not going to make that appointment and you may not have a regular provider to be reminding you or helping you find coverage. And that's a really big problem.

—Dr. Caroline Weinberg, CEO and founder of Plan A Health, October 28, 2024

SRBWI and Human Rights Watch interviewed women who described their struggles to afford routine cervical cancer screenings and necessary follow-up care.

Uninsured Women Avoid Medical Appointments and Cancer Screenings

Some women’s inability to afford reproductive healthcare services caused them to often avoid medical appointments and skip cancer screenings altogether.

Annette S., 48, was previously diagnosed with ovarian cancer. She was uninsured for about 14 years because she could not afford health insurance, although she is currently on Medicaid. She described how challenging it was to go to the doctor when she was uninsured due to financial constraints. She said that when she struggled to pay for medical expenses related to reproductive health, she would cancel her appointments.^[58]

Rachel A., 37, has been uninsured for about one year because she is in the so-called Medicaid coverage gap, which means that she would be eligible for public health insurance under Medicaid because of her income if she lived in one of the 40 states that have adopted the Medicaid expansion provisions of the ACA. Across the US, about 1.5 million people fall into the same coverage gap as Rachel, including about 74,000 of whom live in Mississippi.[59]

She described how being uninsured has been an obstacle to accessing reproductive health care: “Sometimes [I] don’t go, like don’t go to the doctor. … We do have other clinics that you might go [to], like I have went to get my medicines because they take people that don’t have insurance and stuff, but sometimes [I] just go without.”^[60] Nia E., 53, is currently insured but was previously uninsured because she worked part-time and could not afford insurance. She said she last received a Pap test several years ago because she “couldn’t afford it.”^[61]

Joyce K., 50, is currently insured but was previously uninsured for about two years. Although she was working, like many of the women we interviewed, she could not afford health insurance. “They charge for it. How you going pay it if you don’t have no money to pay it with?” she said. She added that it had been a while since she went to a gynecologist: “I didn’t have money to pay. It was unaffordable.”^[62]

Women said their health choices and ability to seek reproductive care shifted with their insurance status, leaving periods when they were unable to access preventive screenings and follow-up care. Noami M., 58, was uninsured for a time after her husband died. She said that during that time, “I just didn’t go to the doctor. ... [U]ntil I found health insurance, … I just didn’t go.”^[63]

Mia R., 53, is currently insured but struggled to pay for medical expenses for a year when she was uninsured between jobs. She said, “The average person, even myself, if a person cannot afford [medical care], they will not go.”^[64] Sonya S., 53, is currently insured but recalled a time before she had insurance. “Before I had insurance, I just did old remedies to keep myself,” she said. “And prayed to God to keep me in my right mind and my health and my strength.”^[65]

Uninsured Women Forced to Choose Between Reproductive Health Care and Other Essential Expenses

Some women described being forced to make difficult choices when they could not afford reproductive health care. Mia R., who struggled to afford reproductive health care while she was uninsured, said:

[I was] worried about trying to make a decision between health care and taking care of a home or what have you. Put the food on the table, medications, or what have you. So you have to weigh your options, see which one is going to be best for you.^[66]

Renee N. is in her 60s and has had several abnormal Pap tests as well as a complete hysterectomy. At the time we spoke with her, she was insured, but still owed money to a women’s clinic for debts she accrued during about five years of being uninsured. She said she makes difficult financial choices at times that undermine other rights, like food, to be able to pay for expenses related to reproductive health care: “Sometimes what I’ll do is, as far as the light bill or whatever, I just pay some of it to try to pay over here, or I neglect. Sometimes I won’t buy as much grocery or food.”^[67]

Dr. Caroline Weinberg, CEO and founder of Plan A Health, which operates a mobile clinic providing healthcare services, including cervical cancer screenings, in seven counties in the Delta, has seen how women in the Delta put off care because they cannot afford it. “If you have to choose between food on the table and going to get a Pap smear, or you have to choose between asthma medication for your kid and going to get a Pap smear … that's not difficult math for a lot of people. You just have your priorities,” she said. “And one of the priorities that often falls by the wayside if you don't have any money is fundamental healthcare screenings because it's just not feasible to get them consistently.” She said she sees that often women delay cervical cancer screenings and only seek out care when problems arise, and by then it may be too late.^[68]

Even Insured Women Sometimes Struggle to Afford Out-of-Pocket Expenses and Follow-Up Care 

Some of the women we interviewed described struggling to pay for reproductive health care even though they had insurance or other means of obtaining low-cost services. For many women, even paying for services on a sliding scale or insurance co-payments were a financial burden that sometimes made reproductive health care unaffordable. Although cervical cancer screenings may be available at affordable rates or fully covered by insurance, follow-up care for many women is not. For example, under the ACA, all insurance plans must cover mammograms and cervical cancer screenings without copayments, but they are not required to cover follow-up care or diagnostic testing, like colposcopies.^[69] The costs associated with follow-up testing or for specialist care by a gynecologist can be especially challenging for many women to pay. Research from the University of Michigan, published in 2023, found that eliminating out-of-pocket costs increased the likelihood that patients received recommended follow-up diagnostic and treatment services after cancer screenings.^[70]

Erica S., 33, has endometriosis, a chronic disease in which tissue similar to uterine tissue grows outside of the uterus.[71] Although she is currently insured, she said she still struggles to afford co-payments to see her doctor. She said that when she cannot afford medical expenses, she does not go to the doctor.^[72] Janelle T., 37, has consistently had insurance, but she said she has still experienced times when co-payments created unexpected financial burdens. “If my insurance [doesn’t cover a service], then I have to come out of pocket, just in case if they run a test or something that’s not covered,” she said. She also sometimes struggles to pay for medical care when doctors are outside her insurance network:

Recently when I couldn’t pay, I either ask them, do they take payment plans? And some do take payment plans. And I guess if they don’t offer the payment plan, then I have to find somebody in my network. I have to put it off until I can find somebody in my network.^[73]

Jackie Hawkins, CEO and founder of Delta Community Solutions, LLC, an organization focused on improving health outcomes in rural underserved communities in Mississippi, described a friend who was diagnosed with cervical cancer and who is insured but nonetheless struggles to pay her cancer treatment’s co-payments:

She has insurance, and she’s getting her treatments. With that, she’s having to pay, out of pocket, $134, which may not seem a lot of money to a lot of people, but to her, it’s a lot of money. Having to not go to your treatment because you don’t have the $134, and they will not see her because if she couldn’t pay that, and that has happened to her several times … that’s something that no one should have to go through.^[74]

Impact on Prevention, Late-Stage Diagnosis, and Deaths from Cervical Cancer

The barriers to health insurance that ensures affordable access to health care can detrimentally impact women’s ability to prevent or treat cervical cancer at an early stage. They also contribute to late-stage diagnoses in women who forgo necessary appointments because they cannot afford routine screenings and the cost of follow-up care. “Women fall out of coverage and then they have no coverage, and so they don’t go get screenings,” said Dr. Christen Haygood. “Then, we’re diagnosing things later than we should have had they gotten screened, but they didn’t have funds.”^[75]

Freddie White-Johnson, President and CEO of the Fannie Lou Hamer Cancer Foundation, which works to eradicate cancer in the Mississippi Delta, believes fears about the cost of cancer treatment deter some women from getting screened in the first place:

Some of it’s just fear. “If I got cancer, then how do I pay for it?” ... [T]he health care system in the Delta is terrible. You know, it’s very few resources…. And people find out they got cancer. You need transportation. You don’t have money for medication…. Co-payment is pretty difficult. Fear of the unknown. So, those are just a few other things that I’ve heard people say.^[76]

Mia R. believes an inability to afford health care is a reason why Black women are dying from cervical cancer at disproportionate rates. She said:

One of the major problems that African Americans have is not having access to care or not being able to afford the care that they're given, that [is] actually needed. So, a lot of times, African Americans cannot afford the care. … And then African American females are at higher risk of having cervical cancer. Why? Because a lot of them are not actually going for regular checkups. They can't afford it, they can't get there. So that's one of the main issues.^[77]

Access to Gynecological Care in the Mississippi Delta and State Policies

Cervical cancer prevention and early detection requires routine contact with the healthcare system. But Mississippi state policies, including a failure to expand Medicaid and a restrictive ban on access to abortion, have created additional barriers to accessing comprehensive reproductive health care, with disproportionate impacts on Black women.

Gaps in Healthcare Coverage due to Mississippi’s Failure to Expand Medicaid

Mississippi’s Low Medicaid Enrollment Rates and Failure to Expand Medicaid

Mississippi has one of the highest rates of uninsured individuals in the United States; as of 2022, about 10.8 percent of its population did not have health insurance.^[78] According to Georgetown University/Mississippi Center for Justice research, as of January 2023, approximately 18 percent of women of reproductive age (between 18 and 44) were uninsured, one of the highest rates in the country, with particularly high rates for women of color, especially for American Indian/Native Alaska and Hispanic women.^[79] Medicaid eligibility is extremely limited in Mississippi and an adult who has not qualified for disability benefits and is not a caregiver or pregnant is not eligible for full Medicaid coverage, no matter how impoverished the individual is.^[80]

Mississippi could extend affordable health insurance coverage to more low-income adults by expanding Medicaid eligibility through a funding match opportunity created by the Affordable Care Act (ACA) in 2010, but it remains one of 10 states in the country that have not done so.^[81] In 2024, both the Mississippi State Senate and House of Representatives introduced several Medicaid expansion bills; one bill, House Bill 1725, passed the House.^[82] Despite increased bipartisan support and momentum, including polls showing the majority of Republican Party voters in addition to Democratic Party voters in the state support Medicaid expansion,^[83] the bill stalled in early May 2024, mainly due to disagreements over a work requirement.^[84]

By not expanding Medicaid, Mississippi lost out on an estimated $14.5 billion in federal funding between 2013 and 2022 that would have been available to extend healthcare coverage to low-income residents.^[85] Medicaid expansion in Mississippi would ensure more low-income individuals have access to affordable health insurance by extending coverage to approximately 123,000 people, including 74,000 individuals in the coverage gap—that is, people with incomes that are too high to qualify for Medicaid but too low to qualify for subsidies in the ACA health insurance marketplace—who currently do not have affordable options for health insurance.^[86]

Despite an already high rate of uninsured individuals, Medicaid enrollment is declining in Mississippi. The federal Families First Coronavirus Response Act (FFCRA), enacted at the start of the Covid-19 pandemic in 2020, included a requirement that Medicaid programs keep people enrolled through the end of the Covid-19 public health emergency.^[87] This continuous coverage provision significantly increased the number of people in the United States, including in Mississippi, who were insured. From February 2020 to March 2023, the number of people insured by Medicaid increased by 40 percent in Mississippi.^[88] From 2019 to 2021, in Mississippi, all women of reproductive age (ages 18 to 44) saw a 14 percent decrease in uninsurance rates and rates of uninsured Black women of reproductive age fell by 11.3 percent.^[89] But in March 2023, the continuous coverage provision ended, and since then, states have resumed disenrolling people from Medicaid. By June 2024, Medicaid enrollment across the US had fallen by approximately 14 million people.^[90] From March 2023 to June 2024, Medicaid enrollment in Mississippi decreased by 27 percent, erasing nearly all of the previous growth in enrollment; for the majority of people who were disenrolled, the reason was procedural terminations or issues with their paperwork, not because they were ineligible.^[91]

Benefits of Medicaid Expansion, Including for Black People

In states where it has been implemented, Medicaid expansion has improved access to health care and health outcomes. It has increased the affordability of care, improved access to and utilization of healthcare services (including comprehensive cancer care), and reduced rates of uninsured patients and uncompensated healthcare costs.^[92] It has also increased the use of preventive healthcare services and has been associated with increased screening rates, earlier diagnosis, more effective treatment of cancer, and a higher likelihood of survival after diagnosis.^[93]

Medicaid coverage is invaluable given that uninsured people are more likely to forgo preventive health care, including timely cancer screenings, and are also more likely to be diagnosed with cancer at a later stage.^[94] Uninsured women in the US have lower cervical cancer screening rates, are less likely to receive timely follow-up and treatment after abnormal screenings, and face a higher risk of late-stage diagnosis and lower rates of survival.^[95] Low-income women in states that have not expanded Medicaid are significantly less likely to receive a Pap test than those in expansion states, with uninsured women having the lowest screening rates.^[96] Women living in states that have not expanded Medicaid also forgo reproductive health care at higher rates than women in expansion states because of costs; for example, about 20 percent of women of reproductive age (ages 18 to 44) in Mississippi reported skipping necessary care because of the cost.^[97]

In addition to improving access to cervical cancer care, Medicaid expansion in Mississippi could help reduce overall racial disparities in health outcomes, including for Black people in the Delta who face some of the worst health indicators in the United States. The unwillingness of states to expand Medicaid has particularly affected people of color; approximately 65 percent of those in the coverage gap – without affordable options for health insurance – across the US are people of color.^[98] Mississippi has a high rate of uninsured Black people compared to expansion states, and as of 2023, 13 percent of  Black Mississippians ages 0 to 64 were uninsured.^[99] By increasing healthcare coverage for more low-income people of color, Medicaid expansion could help reduce racial disparities in health outcomes arising from unequal access to affordable and comprehensive healthcare coverage. Since people of color are more likely to be enrolled in Medicaid, they are also more likely to be disproportionately impacted by declining Medicaid enrollment in Mississippi,^[100] a situation likely to further exacerbate racial disparities in the state’s health outcomes.

Jackie Hawkins of Delta Community Solutions, LLC, underscored the need for Medicaid expansion in the Delta:

If Medicaid is not expanded … we are doomed here in the Delta…. Really, we’re going to have more people dying prematurely, unnecessary deaths.... We are going to have more people not getting those preventative type screenings and services that they need to get…. It’s going to continue.^[101]

SRBWI and Human Rights Watch spoke to many people working on health, rights, and justice in Mississippi who believed the state’s decision not to expand Medicaid was based on racism, and on many policymakers’ deep belief that it would benefit people they considered undeserving, including low-income individuals of all races who would benefit from access to affordable, federal and state-funded health insurance. Roy Mitchell, Executive Director of the Mississippi Health Advocacy Program, described the lack of Medicaid expansion as an “[i]ssue of race in Mississippi, that’s what it boils down to.” He continued: “Our leaders are spouting 10-year-old talking points about Medicaid expansion, which are racist dog whistles.”^[102] According to Laura Harker, Senior Policy Analyst at the Center on Budget and Policy Priorities, “Many of the states that have refused to adopt the expansion have a long history of policy decisions, based on racist views of who deserves to get health services, that restricted access to coverage in the past and continue to do so today.”^[103]

Mississippi’s Failure to Expand Medicaid Contributes to a Shortage of Obstetricians and Gynecologists

The lack of obstetrician-gynecologists (ob-gyns) in Mississippi has made access to gynecological care burdensome, costly, and for some women, nearly impossible. Currently, Mississippi faces a dire shortage of ob-gyns. More than half of its 86 counties, including 8 of the 18 counties in the Mississippi Delta, are considered “maternity care deserts” without any hospitals or birth centers providing obstetric care, ob-gyns, or certified nurse midwives or certified midwives.^[104] Only seven counties in the Mississippi Delta—Bolivar, Coahoma, DeSoto, Leflore, Tate, Warren, and Washington Counties—have any licensed ob-gyns.^[105]

Mississippi’s failure to expand Medicaid, and the impact of this decision on rural hospitals, has contributed to the shortage of ob-gyns and limited access to gynecological care in rural areas. By choosing to not expand Medicaid, Mississippi has instead put additional strain on rural hospitals and contributed to the closure of hospitals and labor and delivery units. Hospitals in states that expanded Medicaid have seen increased healthcare coverage, decreased rates of uninsured patients, and reduced uncompensated healthcare costs. Hospitals in these states have also been significantly less likely to close than hospitals in states that did not expand Medicaid.^[106] Medicaid expansion in Mississippi could expand healthcare coverage for low-income people in the state, decreasing the cost of uncompensated care, and provide a financial lifeline for struggling hospitals, which is especially crucial in rural areas where the situation is most dire.

When labor and delivery units close, obstetricians, who are typically also gynecologists, have nowhere to deliver babies or provide emergency obstetric care, so they often move away, removing entire communities’ access to pregnancy and gynecological services. Since 2005, six rural hospitals in Mississippi have either completely closed or been converted, including the Patient’s Choice Medical Center in Humphreys County in the Delta.^[107] A December 2024 report from the Center for Healthcare Quality and Payment Reform found that more than half of rural inpatient hospitals in Mississippi were at risk of closing, with 25 at risk of immediate closure, making Mississippi the state, along with New York, with the second highest percentage of rural hospitals at risk of immediate closure.^[108] Labor and delivery units, which are less profitable, are at particularly high risk of closure when hospitals face financial challenges.^[109] More than 200 hospitals in rural areas across the US have shut down labor and delivery services in the last decade, including Greenwood Leflore Hospital in Leflore County in the Delta, which closed its labor and delivery unit in 2022.^[110]

Rural hospitals in Mississippi face myriad challenges, especially in the aftermath of the Covid-19 pandemic, including a severe nursing shortage, rising costs, and dwindling population,^[111] and the state’s decision to not expand Medicaid has contributed to the crisis. 

State Health Officer Dr. Dan Edney has said: “We have a health care crisis in this state.”^[112] In April 2023, Governor Tate Reeves signed into law a $103 million program to support hospitals,^[113] but this one-time payment is not enough to support rural hospitals struggling to stay afloat.

Mississippi’s Abortion Ban

Mississippi’s hostility toward reproductive rights and its extremely restrictive law on abortion undermines access to gynecological care. Mississippi banned abortion in June 2022 following the Dobbs v. Jackson’s Women Health Organization decision, in which the US Supreme Court overturned Roe v. Wade and eliminated the constitutional right to abortion access. Mississippi now has one of the most restrictive laws on abortion access in the United States: abortion is illegal in all cases except when necessary to save the pregnant woman’s life or in cases of a rape that was formally reported to law enforcement.^[114]

Mississippi is surrounded by states with near total abortion bans.[115] Residents who wish to travel out of state for care face some of the longest driving distances in the country to reach an abortion provider. Interstate travel for abortion is difficult, costly, and out of reach for many people on low incomes.[116]

Abortion bans, like the one in Mississippi, disproportionately harm Black, Indigenous, and other people of color as well as immigrants, people with lower incomes, young people, and people in rural communities who face unique barriers to accessing comprehensive reproductive health care.^[117] Abortion bans also block healthcare providers from offering standard medical care and lead to life-threatening delays and denials of a range of pregnancy-related health services.[118]

In addition to drastically curtailing access to abortion, Mississippi’s abortion ban also threatens access to health care, including gynecological care, in other ways too in the state. After Roe v. Wade was overturned, medical students reported that restrictive laws on abortion access have deterred them from practicing in states where abortion is banned.[119] A 2023 analysis by the Association of American Medical Colleges (AAMC) Research and Action Institute found a disproportionate decrease in medical residents applying to residency programs across all specialties in states with restrictive laws on abortion access compared to states where abortion is legal.[120] The decrease in residency applicants across all specialties, including obstetrics and gynecology, was highest in states with complete abortion bans.[121] In its analysis, the AAMC stated that the decreased interest by resident doctors to train in states where abortion is banned or restricted “may negatively affect access to care in those states; any impact will likely first affect communities who already have limited access to care (such as rural, lower socioeconomic, and marginalized racial and ethnic groups).”[122] 

According to the Commonwealth Fund’s report on the state of reproductive health in the US:

Tighter limits and additional bans on abortion are certain to drive more maternal and reproductive health care providers to shut down or leave their states, deepening the crisis of access to maternity care. Abortion bans threaten American’s future access to care across all medical specialties; in fact, since 2022, medical residency applications in states with bans have declined by more than those in other states.^[123]

In another report, the Commonwealth Fund’s key finding was that:

Compared to states where abortion is accessible, states that have banned, are planning to ban, or have otherwise restricted abortion have fewer maternity care providers; more maternity care “deserts”; higher rates of maternal mortality and infant death, especially among women of color; higher overall death rates for women of reproductive age; and greater racial inequities across their health care systems.^[124]

In Mississippi, where women already have the worst reproductive health outcomes and where comprehensive gynecological care is hard to obtain, state policies—including the abortion ban that further deters ob-gyns from providing essential healthcare services—creates additional challenges to accessing comprehensive cervical cancer care.

Inadequate Reproductive Healthcare Services from Federal and State Programs and Resources

Because Mississippi does not provide comprehensive and affordable healthcare coverage, low-income and uninsured women, especially those who do not qualify for Medicaid under the state’s restrictive enrollment requirements, must rely on a patchwork of various state and federal programs to access reproductive healthcare services. Each of these programs have different eligibility criteria and often limit coverage to only certain services. This creates fluctuating access to healthcare services, gaps in cervical cancer prevention and care, and a system that can be very difficult for people in need of health care to navigate.

The Mississippi Family Planning Waiver Demonstration Program, county health departments, and federally qualified health centers (FQHCs), provide low-income and uninsured women in Mississippi with free or low-cost reproductive healthcare services, including cervical cancer screenings and diagnostic testing. Women can also receive free or low-cost reproductive health and preventive healthcare services, including cervical cancer screenings and diagnostic testing, at federally funded Title X clinics in Mississippi. Starting in April 2022, Converge: Partners in Access began administering $4.5 million in annual Title X federal funding in Mississippi, which the Mississippi State Department of Health previously administered.^[125] Converge now works with 14 subrecipients that make up a clinical network of 90 sites, including 15 sites in the Delta operated by 6 health centers in the region, providing family planning and reproductive health-related services for low-income and uninsured people in Mississippi.[126]

The Mississippi Family Planning Waiver Demonstration Program, the state’s family planning program, provides Medicaid benefits limited to family planning and related services for uninsured individuals age 13 to 44 who are able to become pregnant and who qualify with a family income at or below 194 percent of the federal poverty level.^[127] Although the program covers cervical cancer screening and follow-up testing, it only permits four visits per year, inclusive of follow-up visits, and individuals must re-enroll annually to maintain coverage.^[128] In Mississippi, pregnant women and people can receive full Medicaid benefits for up to 12 months after giving birth if their income is at or below 194 percent of the federal poverty level, which is approximately $39,653 per year.^[129]

County health departments also offer low-cost reproductive healthcare services to low-income and uninsured women in Mississippi, based on a sliding scale of fees. But recent budget cuts have significantly impacted the availability of such services and have contributed to a growing healthcare crisis in the state.^[130] The state government has cut the Mississippi State Department of Health’s budget substantially over the past decade, including a $24.6 million cut in 2017 alone (about 32 percent of the department’s entire budget at the time).[131] These cuts have decimated the public healthcare system in Mississippi and had significant impacts on staffing, hours, and services offered at the state’s 86 county health departments.^[132] As of 2023, less than 10 percent of the department’s budget comes from the state, and the cuts have resulted in major reductions to services provided by county health departments that primarily serve the most marginalized, including low-income and uninsured residents.^[133] Due to these financial challenges compounded by staffing shortages resulting from a severe nursing shortage and high turnover rates, many health departments have reduced their hours and stopped offering many previously available services.^[134]

These budget cuts have had a major impact in the underserved Delta. According to the Mississippi State Department of Health’s website, only 10 of the 19 county health departments in the Delta are open for more than three days a week; 5 are only open for two days a week, including the health department in Humphreys County.^[135] The Quitman County Health Department only operates from 8:30 a.m. to 4:30 p.m. on Thursdays.^[136]

Our research found that actual hours may be even shorter than those posted on the health department’s website. At the time of writing, the Humphreys County Health Department is not operating at all; a sign on the door instructs people to call the county health department in neighboring Sunflower County. Upon calling the number listed, a researcher was informed that the Humphreys County Health Department no longer operates and patients are advised to visit the Sunflower County Health Department, about 20 minutes away by car.^[137]

Low-cost and free reproductive healthcare services are also available to low-income and uninsured women on a sliding scale at federally qualified health centers (FQHCs). All but two counties in the Mississippi Delta are serviced by at least one of the 21 FQHC networks operating in Mississippi,[138] but even access to follow-up cervical cancer care is limited at many FQHCs.

The Mississippi Breast and Cervical Cancer Program Provides Affordable Access to Critical Cervical Cancer Care But is Underutilized

The Mississippi Breast and Cervical Cancer Program (MS-BCCP) is a state program receiving federal funds that provides comprehensive cervical cancer care to women in Mississippi who are considered at high risk, including minority women, and those who are under- or uninsured and medically underserved.^[139] The program provides cervical cancer screening and diagnostic testing at no cost to eligible women ages 21 to 64 who have a household income at or below 250 percent of the federal poverty level and who have been a resident of Mississippi for at least 12 consecutive months.^[140] Women diagnosed with cervical cancer through the program are eligible for Medicaid, which can cover the costs of cervical cancer treatment, and also receive expedited approval for Medicaid, typically in 7 to 10 days.[141] Although women who are screened and diagnosed with cervical cancer outside of the program can still enroll in Medicaid to cover treatment, they are subject to the state Medicaid program's means testing and longer eligibility waiting periods, which  may take up to 45 days, or even longer, for non-expedited approval.^[142]

As such, the MS-BCCP creates an essential pathway for women with low-incomes who would otherwise be ineligible for Medicaid to receive public financial support to treat cervical cancer. The program is particularly important for women without children and those who earn more than the states’ incredibly low income eligibility requirements for Medicaid (i.e., 135 percent of the federal poverty line) but who still do not earn enough to afford comprehensive health insurance coverage from private providers. However, as discussed below, the program has been underutilized by those who would benefit most from its services.

The MS-BCCP partners with about 140 fee-for-service providers, including county health departments, FQHCs, private providers, rural health clinics, hospitals, and mobile clinics across the state, to identify, enroll, and screen eligible women through the program.^[143] With only about a dozen staff members when fully staffed—including an outreach coordinator and two nursing consultants who help conduct outreach and support contracted providers in enrolling, servicing, and navigating women through the program—the MS-BCCP relies heavily on partnerships, including through sub-grantees with community-based providers.^[144] Currently, the MS-BCCP provides support for staffing, expenses, and outreach to 14 sub-grantees, including Delta Health Center in the Mississippi Delta.^[145] 

In 2017, the US Department of Health and Human Services cut the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) budget by $40.8 million, about 15 percent of its total budget at the time.[146] According to Krista Guynes, Director of the Office of Women’s Health at the Mississippi State Department of Health, federal funding for the MS-BCCP has decreased by about $1 million over the past few years and state funding for the MS-BCCP has stayed around $200,000 for the past several years.^[147] Nevertheless, said Guynes, funding is not a challenge to enrolling and serving women through the program.^[148]

Historical underfunding of public health at the county and state level, as well as recent budget cuts and restructuring by the Mississippi State Department of Health, and staffing shortages, as previously discussed, have curtailed the availability of cervical cancer services at county health departments, including those participating in the MS-BCCP. Instead of all county health departments offering cervical cancer services, including routine screenings, many of these services have been consolidated into and are now only available at “super clinics,”^[149] where limited clinical resources are concentrated.[150] Consequently, many women must travel further to receive screening and diagnostic tests that may have previously been available in their communities. Despite these challenges to accessing care, Guynes said that the majority of cervical cancer services that the MS-BCCP funds are provided by county health departments and they play a crucial role in serving women in the state.[151]

The MS-BCCP is a critical resource for connecting low-income and uninsured women to comprehensive cervical cancer care, providing a pathway towards public health insurance coverage for many women who may be otherwise ineligible. However, a lack of awareness of the MS-BCCP and limited uptake of services hinders its ability to provide lifesaving cervical cancer care for women in Mississippi. As a result, the program has been underutilized and has thus served a low number of women. From 2017 to 2022, approximately 5,436 women in Mississippi received cervical cancer screening or diagnostic testing through the program, including approximately 3,239 Black women.^[152] SRBWI and Human Rights Watch research found that many women in the Mississippi Delta lacked information on the program. Only 56 of the 159 women SRBWI and Human Rights Watch interviewed reported knowing anything about it. Among the women who did not know about the program were several who were currently or previously uninsured and had cited their lack of insurance and financial challenges as barriers to accessing cervical cancer care. In addition to a lack of awareness of the program, Guynes cited challenges in connecting patients with enrolling MS-BCCP providers and ensuring they are enrolled in the program and receiving covered services as another barrier to serving eligible women in Mississippi.[153]

The MS-BCCP has been working on two outreach campaigns to raise awareness of the program using billboards and digital ads. These campaigns are focused on the eight counties in the state with the lowest screening rates, including three counties in the Delta—Coahoma, Panola, and Washington Counties.^[154] In addition to these efforts from the MS-BCCP to raise awareness of the program in communities, more information on the program needs to be available to all healthcare professionals so they enroll in the program as providers and also share information on it with their patients to facilitate enrollment of eligible women. More efforts are needed to ensure that low-income, uninsured, and underinsured women, especially Black women, are aware of this program and can take advantage of the free, lifesaving services it offers.

Inadequate Transportation as a Barrier to Care

Transportation barriers to accessing health care in rural regions are a challenge across the United States.^[155] The lack of accessible and affordable transportation is felt especially deeply in the Mississippi Delta, where limited public transportation infrastructure exacerbates existing disparities in health outcomes, particularly for low-income, older residents, and people of color.

Mississippi’s inadequate public transportation system, including in the Delta, makes accessing what care does exist even more difficult. Rural hospital closures, a shortage of ob-gyns and nurses, and substantial budget cuts to, and decreased services offered by, the Mississippi State Department of Health have further curtailed access to services in the Delta. Women often face challenges in securing safe transportation, paying the costs to get to and from appointments, and balancing long travel times with work responsibilities and childcare. All of this affects their ability to receive routine and timely health care. Because of transportation difficulties, some women have delayed gynecological and preventive care and others have forgone it altogether. These additional barriers to accessing care have had devastating impacts on the health and wellbeing of Black women who face higher mortality rates.

Mississippi Central District Transportation Commissioner Willie Simmons, who represents 22 counties, including 8 in the Delta, acknowledged the problem, saying: “There has been a reduction of healthcare facilities, with some closing, forcing people to travel even further.”^[156] According to Simmons, many Delta residents have depended on family or friends for transportation to medical appointments, but this option is becoming increasingly unaffordable for many.^[157] “The cost of fuel has gone up, making it even more expensive for individuals relying on others for transport,” Simmons said.^[158]

Existing Transportation Options Cannot Meet High Demand

State funding for transportation is inadequate, and public transportation systems struggle to meet demand. Through the Section 5311 Rural Public Transportation Program of the Federal Transit Administration (FTA), rural transit systems in areas where the population is less than 50,000 can apply for federal funding distributed and administered by the Mississippi Department of Transportation to support public transit, with local funds required to match federal funding.^[159] Local contributions toward public transit systems vary depending on the county.^[160] 

Delta Rides, the public transportation system in the Delta, is composed of a network of nonprofit organizations that provides bus and van services in the region, including for Medicaid recipients and people with disabilities, as well as general transportation services available to everyone.^[161] With funding from the federal government—including through the FTA’s Section 5130 Enhanced Mobility of Seniors and Individuals with Disabilities Program, which requires local matching—and the Mississippi Department of Transportation,^[162] Delta Rides covers 21 counties in the region and offers travel between counties.^[163] However, Delta Rides’ ability to serve residents in need is limited by resources. For example, Medicaid-funded trips are capped at a specific number of rides per year that varies depending on the patient’s profile but often falls short of meeting their needs, forcing patients with chronic conditions to either miss appointments or pay out-of-pocket for additional trips once their allotment is used up.^[164]

Overall, the demand is greater than Delta Rides’ capacity. The Aaron E. Henry Community Health Services Center, an FQHC in Clarksdale, Coahoma County, provides transportation services through Delta Rides in partnership with the Mississippi Department of Transportation. Antoinette Gray-Brown, Transportation Director at the center, acknowledged that its transportation services, while essential, do not fully meet the demand. “We provide workforce transportation, Medicaid transportation, and services for senior citizens, but there’s still a large unmet need,” she said.^[165]

Private transportation providers also operate in the Delta, yet, like their public transportation counterparts, many face challenges around resources and funding. Louise Lloyd owns Delta Transportation Services, LLC, in Greenville, Washington County. The company has provided non-emergency medical transportation for over 12 years in multiple counties, transporting patients to dialysis centers, doctor’s appointments, and specialists, even across state lines. Lloyd explained that her company operates through a combination of Medicaid-funded trips, nursing home contracts, workers’ compensation transportation, and private pay clients.[166] While Medicaid covers the cost of some trips, the number of allowed trips is limited, often leaving patients without any affordable options once they have exhausted their coverage. “Medicaid covers about 12 to 15 trips per year, which isn’t enough for people needing regular treatment,” Lloyd said.[167] As a result, patients are forced to choose between paying for health care and other basic needs, with many people prioritizing their immediate needs, such as food or medicine, over preventive care, with the mindset, “If I’m not sick, I might as well not go to the doctor.”^[168] She added: “We try to accommodate as much as we can, but the demand is always higher than the supply.”^[169]

Women’s Experiences of Transportation Challenges

Transportation challenges make it difficult for many women to get the cervical cancer care they need. Because of this challenge, some women skip routine appointments or only visit a gynecologist when they have a problem.

Time Needed to Travel Far and Costs to Travel

SRBWI and Human Rights Watch interviewed women who had to travel long distances to see a gynecologist and described how this affected their visits. Kenyetta N., 50, lives in Belzoni, Humphreys County, and travels about an hour one-way to see a gynecologist. She sometimes asks a friend or her daughter to take her to appointments and can sometimes schedule a ride through non-emergency medical transportation covered by Medicaid. But other times she does not go. “I don’t get a chance to go [to gynecologist appointments] because [of] my ride…transportation,” she said.^[170]

Mary D., 60, travels about 75 minutes one-way to see her gynecologist, which she described as challenging “because it is a little too far.”^[171] Not owning a vehicle has been an obstacle for Cynthia B., 25, to get to appointments, even though her gynecologist is about 20 minutes away.^[172]

Teena W., 38, has had a history of abnormal cervical cancer screenings, so she needs to see her gynecologist, who is over an hour away, annually. For her, “Sometimes it could be challenging because it’s a far distance.”^[173] Christene P., 53, has not had a Pap test since her child was born over 20 years ago. “I just feel no need for it,” she said. However, Christene also noted that the nearest gynecologist is at least an hour away: “If one was closer, then I’d probably get to go.”^[174] Debra S., 60, said she has no transportation to get to her medical appointments.^[175]

Impact on Access to Follow-up Care

The lack of gynecologists in rural communities creates additional challenges for women who need follow-up care after abnormal test results. Although many women in Mississippi can obtain routine cervical cancer screenings locally at county health departments, FQHCs, and other health clinics, colposcopies and other follow-up procedures require care by a specialist, typically a gynecologist, although some nurse practitioners can also perform the procedure.^[176] This essential follow-up care is even less accessible due to the shortage of providers, and women often have to travel even greater distances for this care. With access to specialist ob-gyn care so limited in the Delta, many women have to travel to the major cities in the Delta, including Greenville, Greenwood, and Indianola for follow-up care.^[177] This is challenging for many given the transportation shortages.

Dr. Caroline Weinberg of Plan A Health has seen how difficult it is for women to access gynecological care in the Delta, especially follow-up care such as colposcopies. “Pap smears are hard enough to get, but if you need something beyond that, it's an unbelievable challenge,” she said.^[178] Dr. Weinberg has spoken with women who have spent their entire day hitchhiking in order to see a provider for follow-up gynecological care. “When you're taking off work and losing money and putting yourself at risk to go to a provider, you're not going to do it unless you really need it,” she said.[179] This lack of access to follow-up care is one of the reasons Plan A Health founded a clinic in the town of Louise, in Humphreys County, in 2021 to provide colposcopies and other necessary follow-up testing to women after abnormal cervical cancer screening results. “One of the things that we were hearing from a lot of women when we asked why they hadn't had a Pap smear in a long time was they'd say, ‘Well, I know if there’s a problem, I won't be able to do anything about it. So there's no point in getting one,’” she said.

Dr. Sonja Fuqua, Chief Clinical Services Officer at the Community Health Center Association of Mississippi, said, “Primary care you can get, but if you need specialty care, then it’s problematic. … [I]n the Delta, they don’t have access…to specialty care.” ^[180] She added: “Ob-gyns are not at every health center or community health center. And the women’s health care is being provided by the nurse practitioner. It might be a women’s health nurse practitioner, but you don’t have the ob-gyn readily available on site.” ^[181]  

Medicaid Enrollees’ Inadequate Awareness of Free Transportation Options

Although Medicaid enrollees can use free non-emergency medical transportation to attend medical appointments, a few women we interviewed reported challenges with this, especially around scheduling rides. Many women, including those on Medicaid, we interviewed did not know there were such free transportation options or if they qualified for them.

Mariah K., 27, was pregnant and unemployed when she spoke with us. She said her gynecologist was about 45 minutes away; her transportation issue was “not having employment to be able to put gas in the car to travel.”^[182] Even though she was on Medicaid, she did not know about free transportation options. Keiarra S., 28, also has Medicaid and saw a gynecologist about 30 minutes away, which she said was a challenge. She said, “I heard of transportation with the Medicaid, but I’m just not sure how they go about it right now, so I just get rides from my family member.”^[183]

Increased Time Off from Work, Childcare Responsibilities Impact Ability to Travel

Other challenges, like having to take time off from work or secure childcare, are further exacerbated when women have to travel long distances. Several women we spoke with cited work responsibilities as a barrier to accessing reproductive health care. Erica S., 33, has endometriosis and must travel over an hour to see her gynecologist, which was challenging due to “the distance and getting the appointments to coincide with work.”^[184] Erika D., 45, traveled about 35 miles to her gynecologist, which made it difficult “finding the time to be away from my job to go.”^[185] Zara T., 35, said “because no one is open on the weekends, so you usually have to take off work or find childcare to go.”^[186] Mia R. also encountered challenges taking time off to go to appointments: “I pretty much have to … center my medical care around my job … to determine what days can I actually take off to go to the doctor for medical care, any type [of] medical care.”^[187]

Need for Investment in Public Transportation

The Mississippi State Department of Health launched a new program in November 2023, Transportation to Health, that relies on Uber to provide free transportation to appointments at county health departments and to pick up prescriptions following such visits.[188] However, Uber does not operate in all counties in the Mississippi Delta or in many rural counties in the state.

Jackie Hawkins, CEO and founder of Delta Community Solutions, LLC, said state investments in transportation are urgently needed to ensure Delta residents, regardless of insurance status, can access health care:

We need a system just for ordinary people who do not have transportation and who could not afford somebody to take them 3 miles, and they charge them $20 to take them 3 miles…. We still need adequate transportation for those people to go to the doctor so they can receive the healthcare services that they need. In [the] Delta, it’s just not happening. We just do not have it, and the Uber system that the health department is piloting, you can’t place it in the area if you don’t have an Uber system already running.^[189]

Among the steps the Mississippi government should take to improve healthcare access and health outcomes for its most vulnerable populations are adequate state funding and investment in accessible and affordable transportation, including systems serving the underserved Delta, and supporting coordination between public and private sector transportation systems and innovative partnerships. According to Commissioner Simmons and others interviewed, better coordination between public transit systems and healthcare providers and more public investment could improve access. “For example, a program could be set up where transportation is provided on specific days for preventive care like cervical cancer screenings,” he said.^[190] This could provide crucial access to early detection and preventive care, particularly for women in rural areas.

Distrust of Medical Providers Impacts Cervical Cancer Care

Some of them [doctors] come in and say what they got to say and go out. They don’t explain anything to you.

—Christina M. (pseudonym), Bolivar County, October 20, 2023

Distrust of both medical providers and the healthcare system—often arising from demeaning experiences, concerns around quality of care, health insurance status, and a lack of confidentiality—impacts some women’s willingness to seek reproductive and gynecological health care. Given the shortage of services and practitioners available in the Delta, women may face difficulty trying to switch to a different doctor or practice.

Negative experiences can cause distrust of medical providers, including gynecologists whose interventions can make patients feel especially vulnerable, and can even alienate some women from seeking necessary cervical cancer prevention and care. Women we spoke with described how callous and rushed treatment, a lack of respect and confidentiality, and an inadequate level of care undermined the trust they had in medical providers. Many of these women believed doctors and medical staff did not properly treat them or adequately address their health concerns. For some, this impacts their willingness to seek further care.

Experiences of Inadequate Quality of Care

SRBWI and Human Rights Watch interviewed several women who expressed concern that the quality of care they received from gynecologists and other medical providers was inadequate. Many felt that their concerns were undermined, that doctors did not take the time to properly listen to them or explain their health results or procedures, and that they were rushed through appointments with little concern or care for them as individuals.

Tina R., 52, reported that the level of respect and quality of her care and treatment depends on the doctor. “You have those that will listen to you and try their best,” she said. “Then you have those that you can tell them what’s wrong and they’ll tell you it’s all in your mind or something like that.”^[191] Thelma C., 23, trusts the doctor she currently sees but not others: “I’ve been to many doctors, I seen many nurses. Some of them, they really don’t care about you. They will tell you anything so they can just get out your face and that’s what they did to me.”^[192]  Amaya C., 50, said she does not trust any doctors because “they don’t try to get to the bottom of the problem” even at times when she described her health concerns to them.^[193]

Several women felt that their doctors did not listen to them and rushed them out of appointments. Jennifer B., 33, recounted positive and negative experiences with doctors. “I feel like some are honest with your health and actually care about seeing what your problems are,” she said. “But sometimes, I feel like most of them aren’t. Like, they just say whatever to get you on your way.”^[194] Mia R., 53, expressed concern that her gynecologist did not listen to her or adequately address her concerns. “My gynecologist is one that really doesn’t listen to his clients,” she said. “When actually asking questions or what have you, he’s not really actually a good listener when clients have concerns.”^[195]

Women also described feeling like their doctor did not take the time to explain necessary procedures, even after abnormal cervical cancer screenings. Following an abnormal Pap test when she was 36, Adrienne W., now 64, required follow-up care. She felt like her doctor at the time did not explaini9 her abnormal results or the follow-up care she would need. “I just felt like they didn’t want to, they weren’t explaining everything to me like the way that I needed to,” she said. “They weren’t patient, I guess, to give me all the information that I needed.”^[196]

In her early 20s, after giving birth to her second son, Laura B., 45, was told she had “traits of cervical cancer.” Laura described the follow-up care she received: “I went into the clinic, and they used this tool, it had ridges on it and it hurt a little bit. They said it scraped from the inside and [they] sent it off.” She said the doctor did not explain the procedure or treatment options and did not follow up with her.[197]

Some women we interviewed described receiving demeaning treatment from doctors and how this has affected them. Rachel A., 37, did not go back to her ob-gyn after being treated badly by the doctor and his staff, saying: “I didn’t like the staff because they were very rude. … It was just the fact that they was rude to me. They made me feel a certain type of way, the doctor and his staff, and so I didn’t go back.”^[198] Barbara S., 67, described an incident when a doctor responded badly after she asked a question related to her health: “I had an experience with one practitioner. She treated me real cold. I asked her a question about my health, ‘What should I do?’ And she just got nasty with me.”^[199]

Brandi B., 30, told us that even after telling her gynecologist’s office that she was having abnormal and very bad cramping because of an intrauterine device (IUD), the office did not try to get her in for an appointment. When she finally saw the gynecologist, Brandi felt she was very callous: “The way she touched me, it was very forceful and in an aggressive manner.” She asked for a referral to another provider, and this provider addressed the issues Brandi was having.^[200]

Women we spoke with also shared experiences in which they felt the care they received failed to properly address serious reproductive health issues, forcing them to travel outside of their counties to receive adequate care. After seeing a gynecologist in a neighboring county who did not address issues she was having, Jessica W., 58, sought treatment in Jackson, the state capital over an hour away by car. The team in Jackson quickly diagnosed her with fibroids, leading her to believe she received inadequate care from her first doctor. “When I kept having issues, I went to Jackson, and when I went to Jackson, they did a sonogram … and they found it,” she said. “And they were like, ‘They did a Pap on you and they didn’t find it?’”^[201]

A positive experience outside her county also informed the opinion of Annette S., 48, who said: “I just don’t trust doctors in my area because when I left out of Washington County, I was provided with better health care and my health increased tremendously.”^[202]

Health Insurance Status’ Impact on Quality of Care

Several women interviewed believed that their health insurance status impacted the quality of care they received. “A lot of doctors will not give you the best care, depending on the type of insurance you have,” Jemeya G., 35, said. “For people who receive Medicaid and Medicare, they get the minimum treatment, and people with private insurance get the best care.”^[203] Joyce K., 50, shared the same view based on her experiences with different insurance coverage, including a time she was uninsured: “Seems like when you got good insurance, you get treated better. When you got crappy insurance, they just throw you up. And when you’ve got no insurance, they don’t care about you at all.”^[204]

According to Jackie Hawkins of Delta Community Solutions, LLC, women have received subpar reproductive healthcare services as a result of their insurance status. She told us that she heard women describe being directed to certain clinics where they could only see a nurse practitioner, not a doctor, because they had Medicaid.  “That should not be happening in this day and time, but it’s still happening,” she said.^[205]

Stereotypes surrounding people who have Medicaid or utilize low-cost and free healthcare services provided by the state can impact, and has impacted, the quality of their care and treatment. Dr. Sandra Carr, CEO of the Institute for the Advancement of Minority Health, said that some county health departments perceive someone who uses health department services as “a poor person who can’t go anywhere else.”^[206] She added: “If the narrative is ‘everyone that’s using Medicaid is people that don’t want to work, people that just want to live off welfare, [people] having babies so that [they] can get welfare,’ we are going to be less likely to help those people because we think that they’re living off of the government.”^[207]

Experiences of Lack of Confidentiality and Its Impact on Health Decisions

Concerns about providers and their staff ensuring patient privacy and confidentiality has created additional barriers to care for women seeking gynecological services, especially in small, rural communities where most people know each other. Lauren D., 39, shared her concerns about the lack of confidentiality in her small hometown and how that affected her trust in local providers and her decision to seek care elsewhere:

You go into the doctor there [in my hometown], everybody basically know everybody. So if you got someone that work at the doctor, then you scared to go tell them exactly what’s wrong because you don’t want your business to get out, whereas when I was going to Clarksdale, nobody knows me there. That doctor’s very professional, very friendly. She going to keep everything to herself. So that’s what I mean. Some of them [medical providers] I trust and some of them that I don’t trust.^[208]

Wendy S., 57, stopped going to her local health department because of its lack of confidentiality: “The main reason I stopped going is because some of the people out there run their mouth too much about other people’s business.”^[209]

Impact of Distrust on Healthcare Decisions

Several women described how their distrust of providers stemming from inadequate treatment or insufficient attention to their concerns has impacted decisions about their reproductive health and their willingness to seek out care.

Janice V., 42, was experiencing heavy and abnormal bleeding when we interviewed her. Janice said she decided to explore natural remedies instead of obtaining follow-up medical care. She explained that she did this because she did not fully trust medical providers: 

Just because of what I know, what I’ve seen. That’s one of the reasons why I’m trying to …  do the natural method with the excessive bleeding and things like that with my cycle. Because [to] some people, the doctors will say, “Oh, you got this,” and you really don’t have this, and you’re going for a procedure that you really don’t need.^[210]

Mia R., 53, was notified by her gynecologist that she needed a full hysterectomy to treat fibroids, a procedure she did not think was necessary and believed may be tied to financial motivation. She stated this was one of the reasons why she hadn’t been back to the gynecologist since 2022. “I'm really debating, do I want to go back to this gynecologist? Or do I need to go to another one? One that's going to really actually listen to me, instead of thinking, ‘This is a certain way to feather my pocket financially,’” she said.[211]
 

Racism and Racial Discrimination Perpetuate Disparities in Cervical Cancer Outcomes

Something that people don’t want to talk about, and [are] probably afraid to talk about, racism is prevalent here in the Mississippi Delta.

—Freddie White-Johnson, President and CEO of the Fannie Lou Hamer Cancer Foundation, September 5, 2024

Structural racism and racial discrimination within the healthcare field creates additional barriers to comprehensive cervical cancer care. This impacts Black women’s access to gynecological care, the quality of care many Black women receive, their level of trust and confidence in medical providers, and their health decisions.

The history of the field of gynecology includes practices deeply rooted in racism and the exploitation and abuse of Black women. The “Father of Gynecology,” J. Marion Sims made many of his findings through forced medical experimentation on enslaved Black women without anesthesia.[212] The field also has a history of forced, involuntary sterilization of Black women.^[213] The current impact of these injustices on Black women is particularly acute for people living in the southeastern United States, where many of these abuses occurred and where the legacy of slavery and the impacts of racial discrimination—including de facto segregation, high rates of poverty, and poor health outcomes for Black people—are a glaring part of everyday life today.^[214] Both historical and current forms of racism affect how Black women are treated by the healthcare system in the Delta and elsewhere, and how women choose—or choose not—to engage with that system.

Impact of Historical Racism on Black Women’s Health and Distrust of Providers

The historical context of racism has continued to impact Black women’s sexual and reproductive health in the US and has contributed to their distrust of the medical field.^[215] Dr. Nakeitra Burse, Executive Director of Six Dimensions, a Mississippi-based nonprofit organization founded to address systemic inequities in Black maternal health, reflected on how the historical abuse and exploitation of Black women, including in the Mississippi Delta, has had lasting impacts on Black women in the state:

I think we have a lot of historical things here, especially being the heart of the Civil Rights Movement, and just the land that we live on by geography. And so, of course, the biggest thing that we always talk about is Fannie Lou Hamer and the “Mississippi appendectomy” [forced hysterectomy],[216] her having her reproductive rights taken and just being such a powerful figure, but still being the victim of reproductive injustice. Mrs. Hamer's history, among many other historical events, have a significant impact on our current health outcomes and the way we, as advocates, approach our work.^[217]

In her role as Chief Program Planning and Development Officer of Delta Health Center, Robin Boyles has seen the impact of medical abuse and exploitation on Black women’s ability to trust healthcare providers. She cited a “lack of trust among especially women’s health providers due to many things that have been done historically, even right here in this area [the Mississippi Delta] related to Black women in particular.”^[218]

Black Women’s Unequal Access to Gynecological Care and Treatment

In addition to impacting Black women’s trust of and, for some, willingness to even engage with the healthcare system, current forms of racism and racial discrimination also leads to unequal gynecological care and differences in treatment for Black women. Studies have shown that Black women are less likely to receive recommended treatments for cervical cancer, including surgery at an early stage.^[219] One study also showed that compared to white women, Black women are less likely to be notified of abnormal cervical cancer screening results or contacted about follow-up care.[220]

In 2020, the American College of Obstetricians and Gynecologists (ACOG), the premier professional membership organization for obstetricians and gynecologists in the US, declared that “racism is a public health and women’s health crisis.”^[221] That year, more than 20 organizations, including ACOG and other obstetrics and gynecology associations across the US, also acknowledged that “[r]acism in overt and covert forms persists in the delivery of health care” and “racism and bias in access to and delivery of quality health care,” including gynecological care, contributes to disparities in reproductive health outcomes, including cervical cancer mortality rates.^[222] In August 2024, ACOG released new guidance with recommendations for ob-gyns to take to eliminate racial and ethnic inequalities in health outcomes, writing that such “inequities in obstetric and gynecologic outcomes and care are prevalent and persistent, and they constitute a public health crisis.”^[223]

Racial Bias against Black Women by Medical Providers of Another Race

In its recently released guidelines to address ethnic and racial inequalities, ACOG also pointed to the harmful experiences reported by many Black patients when seeing a provider of another race:

Patients of color are more likely to report poor and discriminatory experiences when seeking health care, particularly when receiving care from racially discordant physicians. Specifically, Black patients reported poorer-quality communication and less information-giving during medical interactions with a physician of a discordant race.^[224]

According to Freddie White-Johnson, President and CEO of the Fannie Lou Hamer Cancer Foundation, and supported by our interviews, racism impacts the quality of health care many Black people receive in the region: “African Americans don’t get the same type of medical treatment, in my opinion, than Caucasians.”^[225] SRBWI and Human Rights Watch interviewed several women who felt that they received inadequate care, including in comparison to white patients, because of racism and medical providers’ bias against them as Black women.

Tina R., 52, believed race factored into the treatment she received from medical providers. She said:

Some doctors, you can go in there and you can tell them what’s wrong with you. … I hate to throw race in a lot of things, but you can go up in there and then you can tell them. They won’t touch you. You can just say you hurting, and they’ll just sit there and look at you.^[226]

She said she feels some doctors could do more: “You’re not going to listen to me, you’re not going to listen to my heart, examine me, assess me. You ain’t going to do nothing. You’re just sitting there looking at me, asking me what’s wrong. And then I just feel like they can do better.”^[227]

Teena W., 38, believed race played a role in poor treatment she received from some medical providers who  “act[ed] and communicate[d] with me like I was, maybe was beneath them or something.”^[228] LaTasha W., 56, also attributed her inadequate treatment to her race: “They look at the skin and they put you off, make you wait, different things.”^[229]

Josephine W., 31, described a very callous comment made to her by someone she believed to be a resident ob-gyn. After a traumatic birth, during which she experienced excruciating pain when the anesthetics administered before her cesarean section did not properly work, Josephine recalled that person saying to her: “I bet [you] ain’t going to have no more kids.” “He must’ve hated Black women,” Josephine said. She reported being fearful of doctors now and believes many are racist. “They don’t know how to talk to you. They don’t know how to respect you. … They just talk you any type of way,” she said.^[230]

Some Black women felt like white doctors treated them worse than white patients because of their race, including by not providing Black women adequate health information. Amaya C., 50, thought white providers gave her subpar care compared to the treatment she believed they gave white patients. “It was a Caucasian provider, and I saw she treated the other Caucasian customers better than she treated me,” she said. “Me, she hurried up and rushed me on up out of there. She ain’t really want to listen to nothing I said.”^[231]

Linda S., 68, also believed medical providers treated her differently because of her race. “I like them [medical providers] and stuff, but some of them just don’t know how to treat you,” she explained. “I don’t know [if it’s because] I’m Black or what. They just treat people different.... Now, some of them, I done seen that how they treat other people [who are not Black], you come in there, they treat you a different way.”^[232] Janice V., 42, told us that she believed that white doctors were not educating Black women about their health and relevant issues.^[233]

Experiences of Doctors Dismissing Health Concerns

Cassandra Welchlin, Executive Director of the Mississippi Black Women’s Roundtable, told us that not being believed and having their health concerns dismissed was a common theme that emerged from accounts from over 100 Black and Latinx women, shared through the organization’s Mississippi Voices Project.[234] She said: “They just were not believed,  and because of not being believed, some almost lost their lives…. Other women who went into the hospital said that they were pregnant and hurting, and they wouldn’t be believed.” She attributed this to “racism in the medical field, and particularly when you encounter white doctors.”[235]

We also spoke with women who felt their pain and health concerns were undermined and not given proper attention because they are Black. Lynette C., 32, said she felt like she needed to prove her pain or concerns to doctors, an issue she attributed to her race. “I just feel like they [medical providers] assume we [Black women] don’t feel pain or they come across like we have more to prove why we’re sick or how we’re sick,” she said. “I’ve had to prove more what’s wrong with me versus somebody else of a different color.”^[236]

Erica S., 33, described the time she told a white doctor that she was experiencing discomfort and pain during a Pap test:

I was telling him I was uncomfortable and it was painful. He was like, ‘Well, you Black women lay down and take the thing … so why you can’t take this?’ So I felt like that was a little disrespectful and out of line. I felt like it was a racist comment, so that’s how I ended up changing doctors.^[237]

Nedra E., 42, believed some white providers often dismiss Black women’s health concerns. Even after being referred to a gynecologist by a friend, she expressed apprehension about seeing a white provider due to how she feels Black women are sometimes treated. She said:

I wasn’t sure because he was a white man, and sometimes they don’t put our wellness at the top. It’s not a priority. Even though you are a patient, they’ll rub it off. “Oh, it will be all right.” Even if you are having early symptoms of things.^[238]

Implicit Bias against Black Women

Medical providers’ implicit bias can lead to poor communication and interactions with patients as well as differing levels of care provided to patients whose race or ethnicity is different from the provider’s, contributing to health inequities.^[239] As ACOG stated in its recently released guidelines to eliminate inequalities in obstetrics and gynecology, some biases that providers have are tied to scientific racism and false beliefs about biological differences between people of different races.^[240] For example, some providers believe the false notion that Black people have a higher pain tolerance than individuals of other races. According to ACOG:

Many of these beliefs date back to the enslavement of Black people in the United States and were used to justify and uphold a hierarchy in the value of human life based on race (eg, the racist belief that a Black body can withstand more pain than a White body). Research has shown that biological conceptions of race and related beliefs are associated with greater acceptance of racial disparities and even racial bias in pain perception, leading to undertreatment of pain in Black and Indigenous patients and a belief in the biological inevitability of racialized differences in health outcomes.^[241]

Racism and Racial Discrimination’s Impact on Health Decisions

There are numerous reasons why many Black women do not get screened for cervical cancer, including their lack of affordable health insurance and lack of information on cervical cancer prevention and care. However, among them, the history of racism, medical abuse and exploitation, and trauma experienced by Black women, especially in the field of gynecology, has continued to have lasting harmful impacts on their reproductive healthcare decisions and their willingness to interact with the healthcare system. Importantly, these beliefs can be passed down through generations.

Most of the women SRBWI and Human Rights Watch interviewed reported getting regular cervical cancer screenings. However, several individuals working on public health and cancer prevention in the Mississippi Delta told us about difficulties in getting many Black women in for screenings. Robin Boyles of Delta Health Center contextualized this historical problem:

These were women that had their babies at home and had midwives. There were no services provided to them back then. Back then, I’m talking about back then being the ’60s, that’s when there was a lot of things going on with health care and women at that time. There’s a lot of Black women in particular who developed a mistrust related to women’s health.^[242]

Lynda Silas, an Outreach Coordinator for the Breast and Cervical Cancer Program at Delta Health Center, described how hard it was to get many women in for cervical cancer screenings, even when services were available for free through the Mississippi Breast and Cervical Cancer Program (MS-BCCP) and she makes the appointments for patients. She said that after repeated attempts to get some women to come in, “at certain point in time they’ll tell you, ‘Look, I just don’t want to have it. I just don’t want it’…they just won’t come in.”^[243] Freddie White-Johnson of the Fannie Lou Hamer Cancer Foundation also noted how hard it was to get many women to have cervical cancer screenings, even when incentives are offered and appointments are scheduled for them.^[244]

Ob-gyns have a critical role to play in addressing health inequities and ensuring equal, high-quality, and respectful cervical cancer care for all patients, regardless of race. Training for medical providers and medical students centered on anti-racism, implicit bias, cultural competency, and patient-centered communication could help address many ways that structural racism and racial discrimination contribute to health disparities and perpetuate feelings of distrust.  ACOG has also cited the need to ensure more diversity in the field of obstetrics and gynecology, including through efforts to recruit and advance ob-gyns from racial and ethnic communities that are currently underrepresented in the field.^[245]

Inadequate Efforts to Prevent Cervical Cancer Through Raising Awareness About Sexual and Reproductive Health and Encouraging the HPV Vaccination

People don’t talk a lot about cervical cancer…. [T]his is something that Black women should not be dying from, but what can we do in our communities to make sure that this is not happening, that people are educated and get those services that they need in a timely manner?

—Jackie Hawkins, CEO and Founder of Delta Community Solutions, LLC, July 9, 2024

Girls and women in Mississippi do not have adequate access to the information they need to make informed decisions to prevent and treat cervical cancer, including information on the human papillomavirus (HPV), the HPV vaccine, and its role in preventing cancer. While organizations and advocates in Mississippi are trying to fill this gap, state policies and practices are failing to ensure access to this information. They are also failing to ensure that all adolescent children and young people receive comprehensive, rights-based, inclusive, and scientifically accurate information on their sexual and reproductive health. Consequently, many women and girls in Mississippi lack lifesaving information and do not fully understand what steps they can take to prevent cervical cancer and stay healthy and safe throughout their lifetime. This lack of information also fuels misinformation, fear, and stigma related to sexual and reproductive health.

Lack of Educational Outreach, Including Through Schools

There is a clear impact of the lack of information on sexual and reproductive health on cervical cancer prevention and care in Mississippi, especially for Black women in rural communities. The overwhelming majority of women we spoke with felt that adolescent children and young people do not receive adequate information on sexual and reproductive health, especially in schools. These women strongly believed that more needs to be done to educate their communities. Linda D., 68, thought schools were the most appropriate place for this learning: “If they ain’t get it at the school, and they ain’t going to get it at home, they going to get it out in the street and they going to get it wrong. So they need to get it [at school].”^[246]

Annette S., 48, did not think that information on sexual and reproductive health was readily available in the Mississippi Delta. “I think it is a lack of communication,” she said. “To receive knowledge is something that you have to go search for yourself. I don’t think it’s voluntarily given to the community.”^[247]

Dr. Sonja Fuqua, Chief Clinical Services Officer at the Community Health Center Association of Mississippi, affirmed the need for education so people can take steps to stay healthy:

I think we need to educate the community just as with health literacy. So sometimes we don’t do better because we don’t know better. So I think that the community needs to be informed and that women need the information about preventative services and what they need at what age and where they can access that care, and it should be impressed upon them.^[248]

Freddie White-Johnson said she saw this lack of information as a big barrier to cancer prevention in the Delta and stressed the need for innovative outreach:

It needs to be more on TV … you need more advertising on these different types of cancers. And you need radio spots. You need church announcements. You need church involvement. We need innovative ways to reach people because lots of people live remotely, and it’s hard to reach them. So you need somebody on the ground to reach that hard-to-reach population. You need to train more community health workers.^[249]

Dr. Nakeitra Burse of Six Dimensions emphasized the importance of providing information in ways that are culturally responsive to and resonate with Black women:

We know there’s no lack of information, but it’s about how it’s presented and where it’s found, and those are where the barriers lie.... If it’s not presented in a way that resonates with someone, that’s important. So we talk about health literacy and people being able to understand, but I think another part of health literacy is presenting information in a way that the community receives it.^[250]

Inadequate Access to Information on Sexual and Reproductive Health for Young People in Mississippi

Mississippi’s education system remains deeply hostile to comprehensive sex education, prioritizing fear of discussing sex over equipping young people with the knowledge they need to protect their health and futures.

—Miranda Estes, State Policy Action Manager, SIECUS: Sex Ed for Social Change, November 21, 2024

A comprehensive approach to cervical cancer prevention requires access to age-appropriate and accurate information on sexual and reproductive health, beginning at an early age. Yet Mississippi’s state government has failed to ensure that its adolescent children and young people receive comprehensive, accurate, and inclusive information on their bodies and health. This has left young people without crucial knowledge about their sexual and reproductive health, which negatively impacts their behaviors and health outcomes into adulthood.

Mississippi has extremely high rates of sexually transmitted infections (STIs); as of 2023, it had the second highest rate of chlamydia, the third highest rate of syphilis, and the fifth highest rate of gonorrhea among states in the US.^[251] In Mississippi, almost half of all new STI cases are among young people aged 15 to 24.^[252] STI rates are disproportionately high for Black people. Although Black people only accounted for 36 percent of the state’s population, in 2019, 54 percent of reported chlamydia cases and 62 percent of reported gonorrhea cases were diagnosed among Black people.^[253] STI rates are significantly higher in the Delta,^[254] where the majority of the population is Black. Social determinants of health, including poverty and lack of access to quality healthcare services, drive these racial disparities in rates of STIs.[255]

Despite these alarming statistics, Mississippi does not ensure that children and young people learn about sexual and reproductive health at school. While the Mississippi State Code requires schools to teach sex education, each school district must adopt either an “abstinence-only” or an “abstinence-plus” curriculum, and the majority of schools teach “abstinence-only.”^[256] Mississippi also has an “opt-in” policy so parents or guardians must provide written consent for a student to participate in sex education classes.^[257] Human Rights Watch research in the US and other countries have found that forced parental involvement in sexual and reproductive health care is a significant barrier to accessing information and services.

Sex education in Mississippi is not required to be scientifically accurate or comprehensive, and the State Code requires stigmatizing language around same-sex activity^[258] and prohibits schools from teaching about sexual health in a way that is inclusive of lesbian, gay, bisexual, and transgender (LGBT) youths. Neither the abstinence-only nor the abstinence-plus curriculum reflects international guidelines on comprehensive sexuality education.[259]

Without state funding for sex education or a comprehensive and uniformly implemented sex education curriculum, the quality of sexual health education, the topics covered, and the information available to students varies greatly by school district.^[260] According to SIECUS: Sex Ed for Social Change:

Mandating local control over sex education presents unique challenges that have resulted in a glaring disparity regarding the quality of sex education that students receive. Such discretion allows for the implementation of policies and curriculum that stigmatize marginalized youth, such as students of color and LGBTQ youth, and presents further challenges in ensuring that low-income districts have access to the resources needed to implement medically accurate and evidence-based sex education.^[261]

Mississippi’s lack of a uniform sex education curriculum that is comprehensive, scientifically accurate, rights-based, and inclusive of all young people has resulted in unequal access to the information adolescent children and young people need to stay healthy and safe. This can create lifelong disadvantages for certain students, including those who are Black and live in under-resourced and rural school districts.  A lack of comprehensive, equitable sexual health education for all adolescents may also contribute to the racial disparities in health outcomes.[262] According to SIECUS, “In Mississippi, Black youth in particular face racist, systematic barriers to health care and education that result in disproportionate adverse health outcomes. Disparities in health outcomes for young people are significantly concentrated among Black youth in Mississippi.”^[263]

Comprehensive sexual health education can provide young people with information to decrease their risk of cervical cancer, including information on HPV and the HPV vaccine, the importance of cervical cancer screenings and timely follow-up after abnormal test results, and resources for free and low-cost reproductive healthcare services. Yet many people in Mississippi do not receive this critical information, contributing to poor health outcomes and high cervical mortality rates that disproportionately impact Black women.

Reasons for Low HPV Vaccination Rates Countrywide

HPV vaccination rates across the United States remain low. Mississippi has high rates of HPV-related cancers, including cervical and oropharyngeal cancer, ^[264] yet HPV vaccination rates in the state are especially low. In 2022, approximately 39 percent of adolescent children ages 13 to 17 had received all recommended doses of the HPV vaccine, and Mississippi ranked last in the country for HPV vaccination rates.^[265]  In comparison, states with the highest coverage rates vaccinated over 85 percent of adolescents.[266]

Since the HPV vaccine protects against HPV, a sexually transmitted infection (STI), many parents associate the vaccine with sexual activity. According to Dr. Christen Haygood, a gynecologic oncologist in Mississippi and the HPV Vaccine Committee chair for District VII of the American College of Obstetricians and Gynecologists (ACOG), the stigma attached to the vaccine due to its association with sexual activity has been detrimental: “When Gardasil [the only HPV vaccine available in the US] was launched, it really was launched as, ‘This is cancer prevention, but you get it from sex.’ Nobody wanted to talk about that. They didn’t talk about the vaccine for 15 years.”^[267]

Dr. Sarah Jones, a pediatrician and chair of the Mississippi HPV Roundtable Provider Outreach Committee, also described how stigma surrounding HPV and sexual activity creates barriers to vaccine uptake:

The largest issue is that we can’t get past the fact … [HPV is] sexually transmitted… and therefore, the shame that comes from if you have cervical cancer…. And then also, the hesitancy to vaccinate because, “Oh, my child is not going to have sex before marriage, and their partner is not going to have sex before marriage.”^[268]

As a result of stigma, misconceptions, safety concerns, and a lack of understanding of the vaccine and its important role in lifelong cancer prevention for everyone, many parents have decided not to vaccinate their children against HPV.^[269] Inconsistent and ineffective recommendations for the HPV vaccine from healthcare providers has also contributed to low vaccination rates. Research shows that a strong, high-quality recommendation from a healthcare provider for the HPV vaccine has the most significant influence on vaccine uptake, yet medical providers are not consistently recommending the HPV vaccine in the same way that they do other adolescent vaccines.^[270] “When you look on the provider side of the data, some of the providers really are just trying to avoid it, and/or are not engaging as much with the families, and [not] trying to answer their questions. They’d rather just skirt past it,” said Dr. Jones.^[271]

Studies also show that religious and political beliefs create barriers to HPV vaccine uptake, and “[s]tates with the lowest HPV coverage rates were found to be conservative and highly religious.”^[272] 

Mississippi State Policies Fail to Ensure Access to Information on HPV and the HPV Vaccine

Despite the lifesaving role of the HPV vaccine, Mississippi’s state government has not enacted adequate policies to ensure access to accurate and comprehensive information for all residents on HPV, the HPV vaccine, and the important role the vaccine plays in preventing HPV-related cancers. More specifically, the state has not implemented key policies that would support access to and information on HPV and the HPV vaccine, including by expanding Medicaid, mandating comprehensive sexual health education in schools, enacting HPV vaccination requirements for school entry, and providing information on HPV and the vaccine to all parents and guardians of adolescents in schools. The Mississippi Comprehensive Cancer Control 2018-2022 State Plan, the Mississippi State Department of Health’s latest publicly available cancer control plan, does not include increasing HPV vaccination rates as a goal or objective. While it lists “mandates for HPV vaccinations” among seven activities for regional coalitions to complete, coalitions only need to complete or support one of those activities and “mandates for HPV vaccinations” is not listed as a required activity.[273]

While key policies are lacking, Mississippi has initiated a few policies to increase HPV vaccination rates, including a declination form by the Mississippi State Department of Health that parents who decide not to vaccinate their children against HPV must sign.[274] In 2023, Mississippi Medicaid extended coverage of the HPV vaccine up to age 45[275]  and pharmacists in Mississippi can administer the HPV vaccine.^[276] Starting in April 2021, the Mississippi State Board of Dental Examiners granted permission for licensed dentists in the state to administer the HPV vaccine, and in July 2023, the board extended permission to allow dentists, dental hygienists, and dental students at the University of Mississippi Medical Center School of Dentistry to administer HPV vaccines. However, dental codes to allow dentists who do administer the HPV vaccine to bill for it are under review and awaiting activation by the Mississippi Division of Medicaid.[277] While these initiatives are helpful, Mississippi still lacks strong statewide policies and legislative efforts to increase knowledge of the vaccine and support vaccine uptake.

Grassroots efforts by nonprofit and community-based organizations, medical providers, and advocates have increased knowledge of the HPV vaccine and vaccination rates in the state. The Mississippi HPV Vaccination Roundtable, led by the American Cancer Society, coordinates statewide efforts to increase HPV vaccination rates and advances “initiatives that focus on provider education, systems improvement, data and technology and community awareness” to address barriers to vaccine uptake, including through events, summits, and convenings of members.^[278]

However, without supportive state policies to ensure universal access to information and education on HPV and the HPV vaccine, knowledge of the vaccine remains low, and a large proportion of Mississippians are missing out on critical opportunities to protect themselves against HPV-related cancers. Less than half of the women interviewed reported being knowledgeable about the vaccine, including several parents of adolescents between the ages of 10 and 19 living at home who had not received the vaccine. Rachel A., 37, lives with her three children (ages 10, 12 and 13) in Washington County. She reported that she did not know about the HPV vaccine, and it was never offered to her or her children.^[279]

State policies that ensure that information and resources on HPV and the vaccine are widely disseminated and available to all, including information disseminated to parents and guardians through schools, could address critical knowledge gaps and help facilitate access to the vaccine and an understanding of its importance in preventing cancer. In her role leading the Fannie Lou Hamer Cancer Foundation in the Mississippi Delta, Freddie White-Johnson witnesses how little information people in the region have on HPV and the vaccine. “Most people don’t even know about HPV,” she said. “They probably see it on TV, you know, the little commercial shows on TV. But I don’t think … nobody just really even just does any education on HPV.”^[280]

For Black women—who die of cervical cancer at such high rates—this knowledge gap around an effective tool to prevent the disease is especially devastating. Studies, including research in the Mississippi Delta,[281] have found that many Black women lack adequate knowledge of cervical cancer, HPV, and the HPV vaccine.[282]

Inadequate Access to Information on Sexual and Reproductive Health Limits Cervical Cancer Prevention and Care

For many women in Mississippi, inadequate access to information on sexual and reproductive health limits their understanding of cervical cancer and the steps they can take to prevent and treat it at an early stage.

Inadequate Information about Cervical Cancer Screenings and Follow-Up Care, Including Low and No-Cost Options

Most of the women we interviewed lacked comprehensive information on cervical cancer prevention, including information on screening tests, how often they needed to receive them, and what abnormal test results could mean.

SRBWI and Human Rights Watch spoke with several women who lacked an accurate understanding of cervical cancer screenings. While almost all interviewees were aware of the need for regular cervical cancer screenings, many reported not knowing exactly what the tests were for, especially HPV tests. Marquita M., 38, from Washington County, said her doctors only tell her what tests to get, not what they do.^[283]

Most of the women we interviewed were not sure if they had received HPV tests, and some were not even aware of what that test is for, despite updated screening guidelines that generally recommend HPV testing for women between 30 and 65.^[284] Many women felt like they probably did get tested, but were never informed by their medical providers.

When asked how often she should receive Pap and HPV tests, Betty H., 64, replied: “A Pap [test], I think once a year. I don’t know about the HPV test because I don’t know what that is.”^[285] When we asked Kimberly F., 42, if she regularly received HPV tests, she said: “Not that I know of. Unless she [doctor] do[es] it and I’m just not aware.”^[286] Lynelle T., 23, was not sure if she had ever received an HPV test and did not even know what the tests are. “I probably did [get an HPV test]. I just don’t know what it is,” she said.^[287] Michelle J., 42, said: “I’m sure I had one [an HPV test], but I don’t know what they do to test for it.”^[288]

Because of the lack of accurate information on why cervical cancer screenings are necessary or why follow-up care after abnormal test results is critical, some women do not get screened or seek out proper follow-up when needed. Sade M., 53, said she had not been screened for cervical cancer in over 10 years because she was not sexually active, even though the guidelines recommend routine screenings for women her age regardless of sexual activity.^[289]

As a gynecologic oncologist, Dr. Haygood encounters patients who do not fully understand how important it is to follow up on abnormal cervical cancer test results, possibly due to low health literacy or time constraints with their medical providers. She described patients saying: “‘Well, I got the PAP [Pap test]. Then, I didn’t understand how important it was that I needed to come back in when it was abnormal’ or ‘nobody ever told me that’, or ‘nobody communicated that that was what we were doing and that I needed to follow up on it.’”^[290]

Even when free and low-cost reproductive healthcare services are available, a lack of information about them creates barriers to accessing timely and adequate cervical cancer care, especially for marginalized and low-income women. Many women SRBWI and Human Rights Watch interviewed were not aware of affordable and low-cost resources available to lower their risk of cervical cancer, including the MS-BCCP as previously discussed.

Misinformation, Fear, and Stigma among Women

Inadequate access to information also contributes to misinformation, fear, and stigma, all of which make many women reluctant to discuss or seek out reproductive health care. With accurate information about how regular cervical cancer screenings are effective at preventing cancer, and the efficacy of cervical cancer treatment, some women would be less fearful of these tests (and their results) and more likely to receive them.

Some women told us they avoided routine cervical cancer screenings for fear of getting bad results, often not knowing how highly preventable and treatable cervical cancer is. Nia E., 53, said fear is why she avoids getting regular Pap tests. “I don’t want to hear the C-word,” she said, referring to cancer.^[291] Josephine F., 71, described having issues with pain and abnormal vaginal bleeding starting around age 67. At first, she ignored the symptoms out of fear. However, she eventually sought care and was told she had a noncancerous tumor growing in her uterus, for which she received treatment. She recounted her pain and fear:

They did everything under the sun to find out what was going on with me, and I appreciate that, but it’s a painful situation. It was a painful situation for me because I had issues in that area and like I said, I tried to hide it. I was trying to ignore it, but the pain got so severe I had to go, and I was scared too, the whole time.

She expressed feeling lucky that it was not cancer and reported getting routine cervical cancer screenings now.^[292]

Renee N., 60, described the fear she felt related to cervical cancer screenings. “Because when you're thinking about it, reproductive health care, I'm thinking about maybe, do I have cancer?” she stated. “Will I develop cancer, or always when I was getting the Paps [Pap test], ‘Oh. Please don't let me have cancer.’ It's that thought of cancer.”[293]

In addition to fear, the lack of information and education about sexual and reproductive health can fuel stigma that leads many women to avoid openly discussing these issues. The overwhelming majority of women SRBWI and Human Rights Watch spoke with reported that women in their communities do not openly discuss these topics, which several referred to as taboo. “I don’t think that’s really an open topic within our communities,” said Tamilya T., 22. “We think it’s not something that we need to talk about. We try to keep it hidden.”^[294] This stigma and shame can further prevent women from seeking out information and addressing pertinent health concerns.

Higher Cervical Cancer Mortality Rates for Older Black Women

About 20 percent of cervical cancer cases are diagnosed in women over 65, yet research has found that many women do not receive adequate screenings as they approach this age.^[295] Instead, as they get older, women are less likely to have received a cervical cancer test in the previous five years.^[296] Cervical cancer incidence and mortality rates are especially high for older Black women.^[297]

Research has shown that for women who have not had a hysterectomy, cervical cancer incidence rates do not decline until they are in their 80s.^[298] Despite this, cancer screenings are generally not recommended after 65 for patients who have been regularly screened in the previous 10 years with normal test results.^[299] Many of the women 65 and older whom we interviewed did not know about these guidelines, and most had never discussed with medical providers about when they should stop receiving screenings.

Many of the women 65 and older we spoke with felt they needed more information on cervical cancer screenings. Portia C., 72, said there “should be a lot of more information. But when we get older, it looks like when we get older, the doctor, just some of them try to … brush it off.”^[300]

Savannah G., 76, said, referring to screenings:

I feel that even though women have reached a certain age and they might not be aware of the current things that are happening, so it’s not always passed on to them as it is the young women. I feel that some of the information is being withheld and should be discussed with older women too.^[301]

Many women associate cervical cancer screenings with childbearing, so they believe they do not need to go for screenings after passing their reproductive age or after they were finished having children. This is something Dr. Haygood, a gynecologic oncologist, sees in her work: “Older women don’t realize they still need screenings. I will say I have had a fair number of—not necessarily just my Black patients—but older women who [say], ‘Well, I was done having babies. I didn’t know I needed to get that done anymore.’”^[302] Freddie White-Johnson felt this association was a barrier to increasing screening rates for older women. “I think because when you get to a certain age, when you feel like you’re not having sex anymore, that people are not going to get a Pap [test],” she said.^[303]

Greater access to information on sexual and reproductive health, including information on the importance of cervical cancer screenings for all women, including those over 65, can help address misconceptions and misunderstandings that contribute to preventable cervical cancer deaths for older women. Current cervical cancer screening guidelines, including by the US Preventive Services Taskforce and ACOG,[304] which generally recommend stopping screenings at age 65 for certain women, may also result in missed opportunities to prevent cervical cancer incidences and deaths in older women,^[305]  contributing to higher mortality rates for older Black women.^[306]

International Legal Obligations

The state of Mississippi and the United States federal government have allowed substantial barriers to comprehensive cervical cancer care to persist, with particularly devastating impacts on Black women. In doing so, they have failed to protect women’s rights under international human rights law to health, information, and equality and nondiscrimination.

Right to Health

Everyone has the right to the highest attainable standard of physical and mental health.^[307] Although the right to health does not guarantee everyone the right to be healthy, it obligates governments to enact policies that respect, protect, and fulfill the right to health, including by ensuring good quality health services, goods, and facilities are available and accessible for all people, without discrimination.^[308] Under the Universal Declaration of Human Rights and the International Covenant on Economic, Social and Cultural Rights (ICESCR), everyone has the right to a standard of living adequate for the health and well-being of one’s self and family—including food, clothing, housing, medical care, and necessary social services—and the right to social security in the event of unemployment, sickness, disability, widowhood, old age, or other lack of livelihood in circumstances beyond one’s control.

The ICESCR recognizes “the right of everyone to the enjoyment of the highest attainable standard of physical and mental health.”^[309] Additionally, the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) specifically addresses “the particular problems faced by rural women” and protects their right to have “access to adequate health care facilities, including information, counselling and services in family planning.”^[310] As a signatory to both treaties, the US should regard them as an authoritative guide to the steps it should take to realize women’s right to health.

According to the UN Committee on Economic, Social and Cultural Rights (CESCR), which interprets and monitors compliance with the ICESCR, “[t]he realization of women’s right to health requires the removal of all barriers interfering with access to health services, education and information, including in the area of sexual and reproductive health.”^[311] The committee regards ensuring reproductive health care as a “core obligation” of the right to health.^[312] The committee also affirmed the need for governments to develop and implement comprehensive strategies with interventions aimed not only at treating, but also at preventing, diseases affecting women.^[313]

The CESCR, in its General Comment No. 14, noted that the enjoyment of the right to health requires the availability, accessibility, acceptability, and quality of healthcare facilities, goods, and services. This includes physical accessibility, economic accessibility (i.e., affordability), and access to information essential for making informed decisions about one’s health.  

The UN Committee on the Elimination of Racial Discrimination (CERD), which provides authoritative interpretations of the International Convention on the Elimination of All Forms of Racial Discrimination (ICERD), to which the US is a party, has also affirmed the obligations of governments to ensure equality and nondiscrimination in the enjoyment of the right to the highest attainable standard of health.  

CERD, in its General Recommendation No. 37, noted that “[i]ndividuals and groups protected by the ICERD have the right to equal unhindered accessibility, including physical, economic (affordability), information and legal accessibility,” to healthcare resources.[314] To ensure this, governments need for these healthcare resources to be “within reasonable geographical reach” of those who require them, including through “positive measures, such as availability and affordability of communication and transportation to such services.”[315] The General Recommendation further provides that “[e]qual access to affordable essential health services requires that health services should be free at the point of care to ensure health services are available to all, and do not result in financial hardship.”[316] Moreover, CERD reaffirmed that “[i]nformation accessibility includes the right of persons belonging to racial and ethnic groups to health-related education and evidence-based information to actively participate in their own healthcare and to advocate for their health.”[317]  

Right to Reproductive Health Information and Comprehensive Sexuality Education

Everyone has a right to access health-related information, including reproductive health information such as information related to cervical cancer.^[318]

Under the ICECSR, the right to information obligates governments to provide information necessary for the protection and promotion of rights, including the right to health.^[319] The CESCR states that women’s right to health includes the right to education and information, including on sexual and reproductive health.^[320] Additionally, the committee concluded that governments “should refrain from limiting access to contraceptives and other means of maintaining sexual and reproductive health, from censoring, withholding or intentionally misrepresenting health-related information, including sexual education and information.”^[321]

The UN Committee on the Elimination of Discrimination against Women (CEDAW Committee), which interprets and monitors compliance with CEDAW, stated that, under CEDAW, women must have access to information about contraceptive options, sexual health education, and family-planning services in order to make informed decisions around their reproductive health.[322] The CEDAW Committee also made age-specific findings and recommendations. It stressed the importance of access to accurate information on sexual and reproductive health and rights for adolescents and the need for school-based education on sexual and reproductive health.^[323] In addition, the committee noted that sexual health information is rarely provided to older women in acceptable, accessible, and appropriate forms, and that interventions should be tailored to their needs.^[324]

According to the CESCR, “the right to seek, receive and disseminate information and ideas concerning sexual and reproductive health issues” is part of information accessibility. It specifically mentions “the right to evidence-based information on all aspects of sexual and reproductive health,” including sexually transmitted infections (STIs) and reproductive cancer.^[325]

Likewise, the UN Committee on the Rights of the Child, which interprets and monitors compliance with the Convention on the Rights of the Child,^[326] called on governments to adopt age-appropriate, comprehensive, and inclusive sexual and reproductive health education as part of their mandatory school curriculum.^[327] The committee stated that “[a]ll adolescents should have access to free, confidential, adolescent-responsive and nondiscriminatory sexual and reproductive health services, information and education,” including for the prevention and treatment of STIs.^[328] The committee also urged governments to “adopt comprehensive gender and sexuality-sensitive sexual and reproductive health policies for adolescents,” noting that unequal access to such information and services amounts to discrimination.^[329]

Right to Equality and Nondiscrimination

The core international human rights treaties expressly prohibit discrimination and require governments to take measures to eradicate all forms of discrimination. Thus, the federal, state, and local governments in the US are obligated to address all forms of racial discrimination, including disparities in reproductive health care, such as cervical cancer care. This is fundamental to fulfilling obligations under the ICCPR^[330] and the ICERD,^[331] both of which the US has ratified.^[332]

Under the ICERD, the US is obligated to undertake efforts to eliminate racial discrimination and guarantee everyone, without distinction, the right to public health and medical care.^[333] Governments are obligated to address intentional racial discrimination and reform laws, policies, and practices that result in disparate racial impacts: that is, those that have disproportionate negative effects on particular racial groups.^[334] It requires governments, when the circumstances warrant, to take “special and concrete measures” to ensure the development and protection of certain racial groups “for the purpose of guaranteeing them the full and equal enjoyment of human rights and fundamental freedoms.”^[335]

The CERD expressed concern in its 2022 review of US compliance with the ICERD, that the US had failed to adopt specific legislation to incorporate the provisions of the treaty into domestic law, while also noting the treaty’s absence from recent US policies related to eliminating racial discrimination and advancing racial equity.[336] The CERD also noted concern at “the high number of persons belonging to racial and ethnic minorities who do not have access to affordable and quality health care because they live in states that have not adopted the Medicaid expansion programme.”[337] The committee went on to specifically highlight the problem of racial disparities in the field of sexual and reproductive health, stating that “systemic racism, along with intersecting factors such as gender, race, ethnicity and migration status, have a profound impact on access by women and girls to the full range of sexual and reproductive health services in the State party [the United States] without discrimination.”[338]

The CERD recommended that the US take “all measures necessary, including legislation to expand coverage for existing health-care programmes, to ensure that all individuals, in particular those belonging to racial and ethnic minorities, indigenous peoples and non-citizens have effective access to affordable and adequate health-care services.”[339] It also recommended that the US take “further steps to eliminate racial and ethnic disparities in the field of sexual and reproductive health and rights, while integrating an intersectional and culturally respectful approach.”[340]

In August 2024, CERD outlined concrete steps governments should take to address racial discrimination in the right to health. It stated that “the right to equality and non-discrimination is an absolute prerequisite for the effective enjoyment of the right to ‘the highest attainable standard of physical and mental health.’”[341] It stated that racial discrimination exacerbates health inequalities and contributes to preventable diseases and deaths.[342] CERD also acknowledged that racial discrimination undermines the right to health on the basis of gender, stating that “women, girls and gender-diverse persons belonging to racial and ethnic groups are more exposed to disproportionate health risks, harmful behaviours and practices, and inequalities in health systems and healthcare.”[343] The committee called on governments to take concrete steps to eliminate racial discrimination and “ensure equal access to culturally appropriate, gender-sensitive and context-responsive quality health facilities, goods, [and] services,”[344] including by addressing barriers to affordable healthcare coverage, health-related information, vaccines, and transportation.[345]

Acknowledgments

This report was researched by 10 community-based researchers through a joint project with the Southern Rural Black Women’s Initiative for Economic and Social Justice (SRBWI) and Human Rights Watch: Shirley Atkins, Zipporah Bass, Barbara Brooks, Mala Brooks, Candrese Jones, Latoya Lowe, Bobbie Miller, Abria Mobley, Eulah Peterson, and Cora Shorter Redd. Gloria Shields, research associate, provided additional community-based research and project support. Sarah Bobrow-Williams, SRBWI Director of Participatory Research and Community Assets, provided oversight and coordination of the participatory research process, conducted research, and contributed significantly to the writing and editing of the report. Annerieke Smaak Daniel, researcher in the Women’s Rights Division at Human Rights Watch, provided project supervision and support, conducted research, and authored the report. Robert Pugh, SRBWI consultant, provided outreach assistance to expert interviewees.

Josephine Rhymes, (former Executive Director of Tri County Workforce Alliance); Odilichi Ezenwanne, MD, MPH (Preventive Medicine Physician at the Aaron E. Henry Community Health Services Center Inc.); and Dr. Veronica Womack (Executive Director of the Rural Studies Institute at Georgia College) provided an external review of the project design, methodology, and protocols.

Both SRBWI and Human Rights Watch reviewed this report. Oleta Garrett Fitzgerald, Children’s Defense Fund Southern Regional Director and SRBWI Regional Administrator, reviewed the report. At Human Rights Watch, Heather Barr, interim deputy director in the Women’s Rights Division, provided divisional review. Kyle Knight, associate director in the Lesbian, Gay, Bisexual, and Transgender Rights (LGBT) Program; Trey Walk, researcher in the United States Program; Elizabeth Kamundia, director of the Disability Rights Division; Margaret Wurth, senior researcher in the Children’s Rights Division; and Matthew McConnell of the Economic Justice and Rights Division’s Global Health Initiative, provided specialist reviews. A senior editor in the Women’s Rights Division edited the report. Brian Root, quantitative analyst in the United States Program, reviewed the quantitative data analysis. Tom Porteous, deputy program director, provided program review. James Ross, legal and policy director, provided legal review.

Breya Johnson, former research assistant in the Women’s Rights Division, supported with research and project management. Design and production assistance were provided by Susanné Bergsten, officer in the Women’s Rights Division; Travis Carr, digital officer; Fitzroy Hepkins, senior administrative manager; and Jose Martinez, administrative officer.

We wish to thank the many reproductive health, rights, and justice groups, community organizers and advocates, academic researchers, and medical and public health professionals throughout Mississippi who provided invaluable guidance and support. We are also grateful to Denice Zeck of the American Forum for her support.

The community-based researchers, SRBWI, and Human Rights Watch are especially grateful to all the women who shared their experiences and stories with us.

Finally, we wish to thank the Open Square Charitable Gift Fund for their ongoing partnership and support of this project.