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III.  Discrimination Against Children Affected by HIV/AIDS

Stigma and discrimination both stymie efforts to control the global epidemic and create an ideal climate for further growth.  Together, they constitute one of the greatest barriers to preventing further infections, providing adequate care, support and treatment, and alleviating the epidemic’s impact.

—UNAIDS, AIDS Epidemic Update, December 2003, p. 31

Discrimination against people living with HIV/AIDS and their families is widespread in India.  People whose HIV status is known may lose their homes, their jobs, and their families, and may be denied medical care.⁷⁷  Children who are HIV-positive, or whose caregivers are, may be denied access to school or treated badly there, kept at home to care for sick family members, or be unable to pay school fees because the family wage earner is sick or dead.⁷⁸  Extended family members may refuse to care for children orphaned by AIDS, especially those who are also HIV-positive.  Institutions, including health care facilities and orphanages, may make improper disclosures of children’s test results and reject HIV-positive children.  Children already facing other forms of discrimination—sex workers, children of sex workers, Dalit and lower-caste children, and street children—suffer more.  Girls are especially vulnerable to HIV transmission if they are targeted for sexual abuse or have less access to information about HIV prevention and related issues.  They are also less likely than boys to be given adequate food, medical care, or education, and more likely to be pulled out of school to care for a sick family member or to take over domestic work.  This section documents discrimination HIV/AIDS-affected children face in health services and in education.

In addition to discrimination’s direct effects—denial of health care, education, and family or institutional care—the fear of discrimination discourages people from doing anything that would identify themselves as HIV positive, such as getting tested for HIV, seeking treatment and support, and taking other measures to protect themselves and others.  A few well-known acts of discrimination can have the far wider effect of deterring others from seeking services and care.

In the three states visited, Human Rights Watch researchers encountered a striking fear of discrimination that affected people’s inclination to seek health services and community support.  In Kerala, some whom we interviewed were willing to meet only outside of their neighborhoods, for fear that our visit might reveal to their neighbors that they were HIV-positive.  Several NGO community workers reported that if they were not careful, even visiting their clients could stigmatize them.  “In slums, people are cramped,” one worker told us.  “Because we make regular visits, people come to know that something is wrong.  People think they are HIV-positive and don’t let their children mingle with their children.”⁷⁹  In one village in Tamil Nadu, even when conducting interviews in a private room, NGO staff asked us not to say the word “positive” in English but to use “plus” instead, for fear that someone outside might overhear and understand that the person was HIV-positive.  The director of an orphanage in Tamil Nadu told us:  “There are children here whose parents I know are positive and I don’t tell them so.  I don’t even put it in the file that the parents were HIV-positive because I am so afraid of the stigma.”⁸⁰  In Chennai, an NGO community health worker told us that only one woman out of thirty with whom she works “can be open” about her HIV status.⁸¹  A twenty-three-year-old man who had been injecting drugs since age thirteen told us that only his immediate family and one HIV-positive friend knew he was HIV-positive.  He told us that if others found out, he would commit suicide, fearing that the neighbors “would literally stone me to death.”⁸²

Violations of the Right to the Highest Attainable Standard of Health

There are primary health care centers, but they are often not very near and people have to walk great distances to reach them.  There are usually private doctors in the village, but if they won’t treat you, where do you go?

—Meena Seshu, SANGRAM, Sangli, Maharashtra, November 27, 2003

This section documents barriers children living with HIV/AIDS face to getting necessary medical care:  discrimination by health care providers who refuse to treat HIV-positive patients, who disclose their HIV status to others, or who provide inadequate care, and treatment that is not accessible to children.

As HIV weakens the immune system, the body is less able to fight infection.  Opportunistic infections are those that take advantage of a weakened immune system to cause disease.⁸³  Proper medical care can treat, manage, and prevent some of these infections.  Antiretroviral drugs, while they do not cure HIV, can, if successfully administered, slow and even virtually stop the proliferation of HIV in the body.  This reduces susceptibility to other diseases and allows for longer and better quality of life.  However, in India the drugs are not prescribed until a child's immune system cells (CD4 count) fall below a certain level or the child is having serious symptoms.

There is evidence that some kinds of malnutrition, because of their impact on the immune system, may influence the course of HIV/AIDS, including the time between HIV transmission and the onset of opportunistic disease.⁸⁴  However, further clinical studies are needed to establish a clear link between malnutrition and the clinical course of AIDS.  In India, almost half of children under three are underweight and a similar number are stunted in growth.⁸⁵  According to the government, proportionally far more girls than boys are malnourished, reflecting longstanding discriminatory practices at home against girls in the allocation of food and health care.⁸⁶

Discrimination by health care workers causes some guardians to avoid taking HIV-positive children for medical care, to hide the children’s HIV status if they do, and, in some cases, to refrain from having the child tested at all.  Visible, untreated disease, in addition to causing physical suffering and a shorter lifespan, may mark children as HIV-positive, thus increasing their exposure to other forms of discrimination in their families, schools, and communities.  Meena Seshu, head of the NGO SANGRAM in Maharashtra, which works with people living with HIV/AIDS, explained:  “When doctors refuse to treat the infection, this creates a situation in which the kids are always ill, so they have to cope with this and others can see it, including the other kids in school.  And kids can be so cruel.  Take a skin infection—all it needs is very basic attention.”⁸⁷

In India, as in the rest of the world, when treatment for HIV/AIDS is not available and people identified at HIV-positive are discriminated against, people have little incentive to be tested for HIV.  Discrimination against people living with HIV/AIDS further discourages people from seeking support services or from taking steps to prevent spreading the disease to others, such as using a condom, that might reveal their HIV status.⁸⁸  As the head of Kerala’s state AIDS control society explained:  “The question arises, “‘Suppose I am found positive, what can you do for me?’  This is one of the lacunae.  When we find someone is positive, we have to do something.  Otherwise, why should they come to us?  That we are not able to do.  Cheap drugs should become available.”⁸⁹  Similarly, a doctor in Chennai explained:

People don’t see the advantage of being tested.  They say, “My family wouldn’t accept me.  I couldn’t have sex with my spouse.  Better to have a happy life until whatever happens, happens.  Once I know about it, my world will be restricted.” 

Until we have a balanced care and prevention approach, we’re only seeing the tip of the iceberg.  We are losing the opportunity to prevent the spread of HIV. . . .  ART [antiretroviral therapy] is part of care and it would help in prevention.  Saying “come [and get tested]” and then providing nothing doesn’t help.⁹⁰

Tripta D.’s husband died of AIDS in 1998, but when we interviewed her, she was still living with his family.  Her youngest son, age seven, was frequently ill, often with herpes zoster, a common opportunistic infection of people living with HIV/AIDS that also can strike others as well.  Tripta said she did not know if she and her children were HIV-positive.  “Once I learned that there was no medicine to clean the virus from our bodies, why should we think about it or test myself?  If we should be positive, then we would not be able to live together.”⁹¹

Deepali M., whose husband died of AIDS, told us:  “I haven’t been tested.  I saw my husband when he was tested and saw what really happens, and I’m not interested to know for myself and to get tested.  There is nothing for me in the results—whatever happens, happens.  I don’t care about my status.  I’m never getting tested.”⁹²

Discrimination by Health Care Providers

In India, persons who reveal that they are HIV-positive may find that some government and, especially, private doctors refuse to treat them.  Some doctors who do treat people living with HIV/AIDS fail to adequately examine or even touch their patients.  Causes of stigma by health workers include lack of knowledge about HIV/AIDS; fear of exposure to infection for lack of protective equipment; a sense that patients are “doomed to die”; existing prejudices against vulnerable groups such as men who have sex with men, sex workers, and street children; and associations with sex, disease, and death.⁹³  Staff of the NGO India HIV/AIDS Alliance, a branch of the U.K.-based organization that works with local organizations around the world, told Human Rights Watch that “discrimination is a common practice” in both government and private health sectors; however, the staff member noted, health workers “are part of the public/community that stigmatizes people living with AIDS and other marginalized groups and that is what they reflect through denying treatment or treating the PLHA [people living with HIV/AIDS] differently.”⁹⁴ 

A UNAIDS study of practices in Mumbai, Maharashtra, and Bangalore, Karnataka, published in 2001, found that hospitals in both cities had refused to provide treatment for HIV/AIDS-related illnesses.⁹⁵  Examples included refusing to admit persons living with HIV/AIDS for hospital care and treatment, refusing to operate on them or assist in clinical procedures, restricting their access to facilities such as toilets and eating utensils, physically isolating them in the ward, restricting their movement around the ward or room, stopping ongoing treatment, discharging them from the hospital prematurely, imposing mandatory HIV testing before surgery or during pregnancy, using protective gear unnecessarily, and refusing to lift or touch the dead body of an HIV-positive person.  However, the study also found that individual hospitals, such as one government hospital and Catholic church-run hospitals in Bangalore had explicitly opened their treatment facilities to people living with HIV/AIDS.⁹⁶ 

When UNAIDS researchers approached thirty-seven private clinics in the two cities, posing as people living with HIV/AIDS, the majority refused to admit them, and all but one of the rest accepted them only under certain conditions, for example, that the doctor not touch or physically examine the patient, that the patient pay more, that the person not be in very poor health, or that the mode of infection not be sexual.⁹⁷  In both cities, researchers found that hospitals had administered HIV tests without patients’ consent, that some private hospitals had made testing mandatory, and that nearly all shared tests results with hospital staff, even when they were not directly involved in the patient’s care, and often with other family members.  Counseling varied widely in availability and quality.⁹⁸  Studies in Delhi; Kerala; Manipur; and Sangli, Maharashtra, have reported similar findings.⁹⁹  And in October 2003, a hospital in Indore, Madhya Pradesh, reportedly ordered its staff to discharge HIV-positive patients, to test patients scheduled for surgery, and to perform surgery only on those who test negative.¹⁰⁰

Human Rights Watch interviewed several parents who were denied medical services after health workers learned they were HIV-positive.  For example, Anu P., who was HIV-positive and, as described below, was not allowed to attend school, could not get care from her great uncle, a private doctor who practiced near her home.¹⁰¹  According to Anu’s other uncle, the great uncle told the family not to bring the girl to his clinic “because if you do, other people won’t come.”  The reason the man gave, the uncle said, was because of HIV.  “He expressed it to my face.  It’s really ridiculous. . . .  He is the one who told other people that my brother [Anu’s father] was positive.”  Anu’s sixty-six-year-old grandmother had been taking her on foot to the government hospital, but the distance had become too far for her to walk, her grandfather said.  The family would still take Anu to the government hospital for major illnesses, they said, but at the time we interviewed her, she was not taking any medications.  When we asked about a large piece of adhesive covering her cheek, the grandfather explained:  “Her skin was swollen so we bought a patch and stuck it on her face.”

S. Sushma, a Kerala resident,described what happened when she was pregnant with her second child:

My husband was working as a driver in tourist travels and went all over India.  I don’t know how he got the disease.  When he was seriously sick, they tested him and identified HIV.  This was two years ago when my elder child was two and a half and I was seven months pregnant.  At that time nobody told me about PMTCT [prevention of mother-to-child transmission], and even when I was counseled [after the HIV test] they didn’t tell me about it.¹⁰²

After she tested HIV-positive, she told us, hospital officials told her they could not care for her.

They suggested that I go to Tamil Nadu [another state] because there is a new hospital there—a private hospital. . . .  At seven months they told me to go to another hospital!  “We’re afraid that it will affect our business,” they told me.  But my husband was getting very tired, and I was very traumatized, and so I was not in a position to go to Chennai [in Tamil Nadu].   

I went to another hospital in the final stages of labor—I just had the delivery and came back.  There was no other way out.  It was a private hospital.  . . . I didn’t tell them that I was positive.  I delivered and went home and had no contact with anyone for a year. . . .

Because of all of these things, they couldn’t give proper care to the child . . . .  Now my fear is that the baby may be positive. 

When my second child was ten months old, my husband died.

Sushma told us that she had since found another hospital in Kerala that would treat her, despite her HIV status.

The father of a six-year-old boy in Kerala described how a government hospital treated his wife in early 2003:

When my wife got sick, she had a fever and her body became very weak. . . .  They tested her [for HIV] in the hospital.  It was a government hospital.  Before her fever was reduced, they prescribed her ARVs [antiretroviral drugs] and asked her to go home.  The doctor tested her and called the nurse and told her my wife was positive.  The nurse wrote it on the care sheet, and by nightfall, everyone knew and then the doctor asked her to go home.  They said, “You are positive and there is no point in staying at the hospital.” . . . 

Because they are not trained, they believe positive people don’t need treatment—they just let them die.¹⁰³

Hospital employees also confirmed that some medical workers refused to treat people living with HIV/AIDS.  In Maharashtra, a doctor in a government hospital whispered to a Human Rights Watch researcher:  “There is a lot of discrimination.  I have seen a lot.  A lot of doctors are afraid.  They don’t want to treat HIV.”¹⁰⁴  A counselor in the hospital also told us:  “The private hospital doesn’t want to do surgery on AIDS patients.  They send them here.”¹⁰⁵  When we asked an official of a private hospital chain in Chennai if his hospitals treated people living with HIV/AIDS, he answered:  “We will see them but we don’t encourage such patients.”¹⁰⁶  And according to the head of clinical microbiology at the All India Institute of Medical Sciences:  “Many hospitals are still denying care to people living with HIV/AIDS.  The causes are fear and lack of awareness.  Even though bigger hospitals have changed and use protection, the stigma has not ended.¹⁰⁷

Other doctors reported seeing some improvements.  Dr. Suniti Solomon, who practices in Chennai, Tamil Nadu, and who has one of the longest experiences of treating AIDS in the country, told us:  “Things are changing, but slowly.”¹⁰⁸  She also noted that it was now possible to “find places for positive pregnant women to deliver.”¹⁰⁹

People living with HIV/AIDS who do receive some treatment may find themselves separated from other patients or that doctors will write them prescriptions but refuse to actually examine them.  For example, a doctor at a government hospital in Delhi reported discovering some two months before that the staff had placed HIV-positive children in the isolation ward.  “I told the nurses that they were not supposed to separate them,” the doctor explained.  “The health personnel and nurses need continuous education.  We do a workshop once a year for doctors and nurses, but it needs to be continuous.”¹¹⁰

According to a government HIV/AIDS counselor in Kerala: 

The nurse will tell people that they are HIV-positive and place them in another area separated from the other patients.  They face discrimination in the hospital itself. . . .  [O]n the wards the nurses are afraid.  It’s not the lack of awareness, they know what should be done, but they are still afraid.  Nurses give a false picture of HIV to the patients.  They don’t allow HIV-positive people to stay, and they tell them that they will infect other patients.  Patients have told me that they are afraid to go to the hospital because of this. 

It’s better now with doctors—even two years ago they would refuse to see them, but now they are taking better care.  But on the nursing side, it’s not so good.  They say, “The doctor sees the patient for a few minutes, but we take care of them for a long time.”¹¹¹

Charu M., an HIV-positive widow and mother of two children in Maharashtra, explained why she preferred to go to a private hospital, if she could afford it:

When I go to the general government hospital, they don’t examine me or even touch my body.  They just write out a prescription, but then they don’t have it in stock. . .  So I prefer a private hospital where they give me an examination and I feel better. . . .  Never has any [government] doctor touched my body to examine me.  They just look at my card [which is stamped that I am HIV-positive] and ask questions.¹¹² 

When health workers treat HIV-positive patients badly or disrespectfully, they also promote stigmatization by others.  According to the Lawyers Collective, an NGO that advocates for the rights of people living with HIV/AIDS:

Health care providers contribute to the culture of discrimination that has emerged around HIV/AIDS by refusing to touch objects used by HIV-positive patients, including utensils and bed sheets, and wrapping only the bodies of patients who died of AIDS-related complications in quarantine bags.  These and other subtle forms of discrimination within the healthcare sector, such as making HIV-positive patients wait longer than others for care, threaten to exacerbate the epidemic and must be addressed by an HIV/AIDS legislation.¹¹³

The above testimonies also highlight the failure of some medical staff to preserve the confidentiality of patients’ HIV status.  A government HIV/AIDS counselor, a practicing doctor, and members of an organization of people living with HIV/AIDS all told us that some hospitals fail to respect the confidentiality of patients’ HIV status—that “HIV” is often written on prescriptions and referrals, and that some medical staff tell others and or separate them from other patients, which causes others to suspect they are HIV-positive.¹¹⁴   The project director of Kerala’s state AIDS control society told journalists:  “Most people do not come to government hospitals for AIDS detection tests for fear of getting reported.  They go to private laboratories for secrecy.”¹¹⁵  However, when asked about the issue of confidentiality, the Indian government’s Secretary of Health, JVR PrasadaRao, told Human Rights Watch:  “There are no problems of confidentiality being breached in government hospitals.”¹¹⁶

According to the Lawyers Collective:

The maintenance of confidentiality of an individual’s health status is one of the cornerstones of public health and rights-based legal responses to HIV/AIDS.  Not only does the principle rest on human rights norms of autonomy and respect for privacy, but it has also been viewed as crucial to encouraging those most at risk to come forward for HIV testing, counseling and clinical attention.¹¹⁷

The Committee on the Rights of the Child has stated that under the obligation to protect children’s right to privacy, “States parties must protect the confidentiality of HIV test results . . . including within health and social welfare settings, and information on the HIV status of children may not be disclosed to third parties, including parents, without the child’s consent.”¹¹⁸

Inaccessible Medical Care

“If you have money, you get the treatment.  If you don’t have money, you get nothing.”

—Dr. Suniti Solomon, “Ideal Model for Care,” “India Battles Against the HIV/AIDS Epidemic,” 4^th International Conference on AIDS India, Chennai, Tamil Nadu, November 9, 2003

Even where health workers do not discriminate against people living with HIV/AIDS, children may be unable to get treatment.  Although the Indian government maintains that it provides free treatment for opportunistic infections and now, in a very few areas, antiretroviral therapy, public health care may be far away and of poor quality, and needed drugs not available for children living with HIV/AIDS.  Many people who are sick and impoverished lack the money either to reach government health facilities or to pay nearby, private doctors.  Those who can come up with the money to pay a private doctor may be unable to afford the medicines the doctor prescribes. 

In 2004 the Committee on the Rights of the Child expressed serious concern “at the unavailability and/or inaccessibility of free, high quality, primary health care” for children in India.¹¹⁹ 

Inaccessibility of Basic Drugs and Equipment

Doctors, HIV-positive parents, and parents of children living with HIV/AIDS all complained that government health care facilities in India often ran out of basic drugs or lacked needed medical equipment, forcing patients to go to private practitioners which for many are beyond their economic resources.  According to researchers at the University of California-San Francisco:  “In public health facilities [in India], the availability of medicines is frequently negligible.  The equipment in many public hospitals is often obsolete and unusable, and infrastructure is dilapidated .”¹²⁰

Tripta D., whose husband died of AIDS and who refused to be tested or to have her sons tested, told us that two weeks before we spoke with her, her seven-year-old son “had herpes zoster on his genitals and a urinary tract infection.  So I took him to a private doctor who charged 3,500 rupees [U.S.$73] for treatment.”¹²¹  When asked why she did not take him to a free, government doctor, she explained:

Earlier I had gone to the government hospital, but they said they didn’t have the facilities to do a catheter, so this time I went directly to the private doctor. . . .  Because the private doctor is near and the boy couldn’t urinate, I felt that it was an emergency.  I wanted to go to the government doctor, but it was [far] away. . . .  I’m not against the doctor in the government hospital . . . .  He only said that they didn’t have any apparatus to solve the problem.

Charu M., an HIV-positive widow and mother of two children told us:  “The last time at the government hospital, they told me they didn’t have the medicine, and I came home with empty hands.”¹²²  According to Charu, in the last year the government hospital had been unable to give her medicine that she needed “two or three times.”

Meena Seshu, of the NGO SANGRAM in Maharashtra, told Human Rights Watch:  “If drugs are given in a civil hospital for an opportunistic infection, it’s on a first come first serve basis. . . .  Often people who are positive need the drug more than people who are negative but they run out.  When they’re finished, they’re finished.  It’s all to do with luck whether you get drugs or not.”¹²³  A doctor in Kerala also confirmed:  “Hospitals have a shortage of medicines for opportunistic infections like [antifungals] and [antibiotics].  They will give them out, but there is not a regular supply.  These people have to take them every day but always there are shortages.  Even for a simple flu, they don’t always have medicines.”¹²⁴

Where government doctors are far away or lack medicines, some patients are unable to pay for transportation to reach them, to buy their own drugs, or to pay for nearby, private doctors.  Many, as a result, go without care.  Shanthy N. told us that she found out she was HIV-positive only when her husband died of AIDS some four years before.¹²⁵  “His doctor told me,” she said.  “I took medicine [to treat and prevent opportunistic infections] last year, but this year I don’t because I can’t afford the travel cost.”  Shanthy lived some four to five hours by train from the closest government, hospital in Tamburam, Tamil Nadu, that treats people living with HIV/AIDS. 

Shanthy’s son, age seven, was also positive, and, she said, “he is sick all the time.”  “My son is not taking any medication.  He took some last year, but this year we couldn’t buy them. . . .  There is a doctor in the village, but he asks for too much money and we can’t afford it.  There is not any money to take him to Tamburam.”¹²⁶  According to staff of a local NGO, “the government subsidizes the train ticket, so with a hospital note it costs about 25 to 30 rupees [U.S.$0.52-0.63].  But the railway station is far away and it costs about 15 rupees [U.S.$0.31] to get there.”¹²⁷

Nisha B.’s auntexplained that she took her niece, who is HIV-positive, to the private practice of a government doctor because she was afraid that medical staff in a government hospital would not keep Nisha’s HIV status confidential.¹²⁸  She pulled out of her purse the prescription for antibiotics that the doctor had given her for Nisha the month before—she did not have the money to fill it.  “They give medicines in the medical college, but it is very far away and I can’t afford the cost of transport,” she explained.¹²⁹

A government HIV/AIDS counselor told Human Rights Watch:  “Most people who test positive are below average economically.  They have to take treatment and have to treat the family.  If one of these breaks, they have to choose between treatment and good food—they will drop the treatment.”¹³⁰  Similarly, researchers in Manipur interviewed mothers forced to choose between buying food and medicine.¹³¹  “Providing for the health care needs of the infected child often meant depriving the older children of a day’s meals,” they reported.¹³²

Access to Antiretroviral Therapy

As explained above, at the time of writing, the Indian government had begun providing antiretroviral therapy to small numbers of people in the six states officially considered high-prevalence and in Delhi; Kerala had promised to follow suit.  The provision of these drugs is a welcome step.  However, the program faces enormous challenges:  as presently implemented it reaches only a very few people and significant problems with India’s troubled health system remain.  Human Rights Watch is concerned that the program as currently designed will have difficulty reaching children, who have less access to health care than adults generally and even less if they are part of high-risk and marginalized groups, such as street children, children in institutions, or children of sex workers.  Without more being done to collect accurate information about HIV-positive children, including how many there are and barriers they face to getting health care, many will continue not to be reached.

If the antiretroviral therapy program is successful, more people will be tested, learn their status, and be treated:  more HIV-positive children may well be living in India’s communities, health care facilities, and orphanages, and feel well enough to attend school and, eventually, to work.  Thus, it is crucial that the Indian government immediately address discrimination against people living with HIV/AIDS, including problems of health workers disclosing people’s HIV status.

For most people living outside of the areas of the program’s implementation, the cost of medicines and required tests, a lack of testing equipment, or a lack of doctors trained to administer the therapy leaves antiretroviral therapy out of their reach.¹³³  For example, a twenty-three-year-old man living with HIV/AIDS who had been injecting drugs since age thirteen told us:  “I have had weakness and malaise, a chest infection, diarrhea, abdominal pain, insomnia, and loss of appetite.  I took ARVs [antiretrovirals] for one month by borrowing the money, but then I couldn’t afford to continue.”¹³⁴

Lack of Psychological and Emotional Health Care for HIV/AIDS-Affected Children

HIV/AIDS-affected children, including those who are HIV-positive, are also likely to experience mental trauma caused by a parent’s death, by fears of their own deaths, and by stigmatization from their or their parents’ HIV status.¹³⁵  But psychological and emotional care for these children is sorely lacking, as it is for children generally in India.  “The pain kids go through—who will address it?  The physical illness and the psychological pain of the loss of a parent,” Meena Seshu explained.¹³⁶

Punima J. was seven years old and in the second grade when we interviewed her.¹³⁷  Her parents had died of AIDS about three years earlier, and she was living with her maternal grandparents.  Her grandfather described her parents’ deaths:  “Father died first, then mother committed suicide a few months later—she was positive.  She poisoned her daughter at the same time, but we got her treatment and she survived.”  Punima, who was also HIV-positive, “is continuously sick,” her grandfather said, was “getting medicine [a general antibiotic] from Tamburan and local doctors, but she doesn’t regularly take the medicine.  She doesn’t like it.”  Punima agreed, “I don’t like to take medicine.”

The father of thirteen-year-old Dinesh T. and his fifteen-year-old sister had died of AIDS the year before we interviewed them.¹³⁸  Their mother, who was also HIV-positive and increasingly sick, had committed suicide some five months before, they said.  The children found the body of their mother, hanged in their home.  They had since been cared for by an elderly, impoverished neighbor.

D. Kumar lost both of his parents to AIDS by age seven and was eventually sent to a church-run orphanage where he refused to eat—having seen his parents die, he thought that he would die as well.¹³⁹  His last year in the orphanage he was often sick.  A local NGO arranged for him to return to his aunt’s home and to receive counseling.  When we interviewed him, Kumar attended school, played with other children, and understood that he was not HIV-positive.

According to Dr. P. Manorama, who treats HIV-positive children, “[p]sychological needs are frequently neglected, even by parents, who find it hard to talk about sex, illness, and death with their children.”¹⁴⁰  Researchers at the University of California-San Francisco found that in India, “[t]here are few counselors trained to deal with issues of children affected by HIV/AIDS.  For example, most child service providers do not perceive psychosocial support as an important need.”¹⁴¹  NGOs have urged the government to address children’s psychological needs from HIV/AIDS and to issue guidelines on psychological support for children affected by AIDS.¹⁴² 

Domestic and International Law on the Right to the Highest Attainable Standard of Health

The Indian Constitution in article 21 recognizes the right to life as a fundamental right; article 47 provides, as a directive principle, the “[d]uty of the state to . . . improve health:  The state shall regard . . . the improvement of public health as among its primary duties.”  The Indian courts have interpreted this provision to include an obligation, at minimum, on doctors to provide emergency care.  The Supreme Court of India held in 1989, under article 21, “[e]very doctor whether at a Government hospital or otherwise has the professional obligation to extend his services with due expertise for protecting life.”¹⁴³  In 1996, the Court further noted that:

Article 21 imposes an obligation on the State to safeguard the right to life of every person. . . .  The Government hospitals run by the State and the medical officers employed therein are duty bound to extend medical assistance for preserving human life.  Failure on the part of a Government hospital to provide timely medical treatment to a person in need of such treatment results in a violation of his right to life guaranteed under Article 21.¹⁴⁴

In the National Charter for Children, which the Indian government adopted in 2003 but which does not carry the force of law, the government also undertakes to protect the life and survival of all children, to ensure “that all children enjoy the highest attainable standards of health”; and to protect children’s mental health.¹⁴⁵

The Convention on the Rights of the Child in article 24 recognizes the right of children to enjoy “the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health.”  According to the committee which interprets the convention, states parties’ obligations “extend to ensuring that children have sustained and equal access to comprehensive treatment and care, including necessary HIV-related drugs, goods and services on a basis of non-discrimination.”¹⁴⁶  Expressing concern that “children with disabilities, indigenous children, children belonging to minorities, children living in rural areas, children living in extreme poverty or children who are otherwise marginalized in society” may not be able to access the HIV-related health services that are available, the Committee has noted that states parties must “must ensure that services are provided to the maximum extent possible to all children living within their borders.”¹⁴⁷

The International Covenant on Economic, Social and Cultural Rights contains similar provisions on the right to health, which the committee charged with interpreting the covenant has explained means that “health facilities, goods and services must be accessible to all, especially the most vulnerable or marginalized sections of the population, in law and in fact, without discrimination on any of the prohibited grounds,” which include “health status (including HIV/AIDS).”¹⁴⁸

Sharmila A.

Sharmila A. was ten years old and living with HIV when we interviewed her.  Wearing a bright green dress, she leaned against her eighty-five-year-old grandmother as we spoke. The two were low-caste and lived alone; both of Sharmila’s parents had died of AIDS over two years before.  With neither Sharmila nor her grandmother able to work and with no other family members, they lived off 400 rupees (U.S.$8.30) a month and additional food provided by a local NGO. ¹⁴⁹

Until the fourth grade, Sharmila attended a church-run school; there was no government school in her village, she told us.  According to her grandmother, the priest paid for her school fees.  Sharmila told us that she liked to study Tamil, math, English, and drawing, but that the teacher separated her from the other children:

When I went to school, I sat separately from the other children, in the last mat.  I sat alone.  The other children wanted to be with me, but the teacher would tell them not to play with me.  She said, “This disease will spread to you also, so do not play with her.”  But after school the other children would play with me.

NGO staff working with the family noted that it was impossible to separate out the facts that Sharmila was poor, female, orphaned, HIV-positive, and low-caste as possible causes of discrimination, but, he said, being low-caste “affects the way she is treated. . . . Here, there is more HIV among the scheduled castes.  There are more migrant workers.  They don’t get any good food, treatment.  So easily they go into AIDS. Other communities have more money and can stay healthier.”¹⁵⁰

In January 2003, Sharmila became sick with tuberculosis and, her grandmother said, the teacher told her not to send the girl to school until she was well.  The NGO paid for antibiotics, vitamins, and tuberculosis medicine, as well as occasional transport to the government hospital, some four to five hours away.  However, the hospital did not provide her with antiretroviral therapy.¹⁵¹  Sharmila died in January 2004.

Violations of the Right to Education

Children affected by HIV/AIDS—including those who are or whose parents are living with the disease, or who are orphaned by AIDS—may face significant barriers to attending school.  These include discrimination by teachers and principals who separate them from other students or deny them admission entirely; frequent absences due to opportunistic infections that schools do not tolerate, often because children fear revealing that they are HIV-positive in order to ask for special measures; and the loss of a family wage earner that leaves them unable to pay school fees and related expenses.  In addition to the problem of school costs, children affected by HIV/AIDS, especially girls, may be at greater risk of being pulled out of school to work for income or in their own homes, hauling water, collecting firewood, cooking, cleaning, washing clothes, and caring for younger children.

There is a direct connection between discrimination in schools and the community and children not being treated for HIV or its opportunistic infections—whether because of discrimination, corruption, or simply a failing public health care system.  In addition to suffering pain and disfigurement, those children are identifiably ill and teachers, classmates, and parents of other students are more likely to suspect them of being HIV-positive.  “As long as the children and parents are healthy, it’s O.K.  It’s when the schools come to know about the children or parents’ status that they are refused,” Dr. P. Manorama, a doctor caring for children living with HIV/AIDS, explained.¹⁵²  While there are legitimate public health reasons for not admitting to school children with contagious infections such as tuberculosis, these children should be provided treatment and excluded only so long as they pose a real risk to others, and never simply because they are HIV-positive.  Failures to provide HIV positive children with adequate treatment are described in the section on violations of the right to health.

Denial of Access to School

Human Rights Watch interviewed children living with HIV/AIDS who had been denied admission to school in each of the three states we visited—Tamil Nadu, Kerala, and Maharashtra.  Reports from other states indicate that such cases are occurring throughout the country, in some cases simply because the parents, not the children, are HIV-positive.¹⁵³  In some instances, parents of other children successfully pressured schools to exclude the children out of fear that others would contract HIV through playground injuries—an extremely unlikely scenario.  In fact, as a Kerala doctor pointed out, with a weakened immune system “the HIV-positive child is most at risk” of catching illnesses from other children in school.¹⁵⁴

Most school-aged, HIV-positive children whom we interviewed managed to attend school by hiding their HIV status.  For example, Idaya M. told us that she had not told her six-year-old daughter’s school that the girl is HIV-positive.¹⁵⁵  Her oldest daughter was kicked out of a residential school in Chennai in 1999 when Idaya told school officials that her husband was HIV-positive, she said.  “I’ve already gone though that once.  My older daughter was negative, and this girl is positive, and I anticipate a lot more discrimination.  I want this child to be fully educated and receive the best education—for this child even more than the others.”  Her daughter chimed in, “I like going to school.”

Members of the Council of People Living with HIV/AIDS in Kerala, (CPK+) reported that virtually none of their members with children had revealed their status to their children’s schools.¹⁵⁶  Professionals caring for children affected by HIV/AIDS also told us that they rarely revealed children’s status when helping them enroll them in local schools.¹⁵⁷  But an NGO community health worker in Chennai said that even without disclosing children’s status there were still problems: 

When I went to admit a group of five or six students into a school, most in first grade, I approached the school and said we work with HIV-positive patients and asked for concession [scholarship] for school fees.  I just said, “These are children in the community and if I enroll them, will you give a concession?”  The headmaster said, “No, the school may have problems.”¹⁵⁸ 

Although not disclosing children’s HIV status may get them admitted to school, it also keeps them from receiving special measures that might prevent them from dropping out or better protect their own health.  “Some teachers consider the child truant, that he or she is always giving some excuses,” another community health worker explained.¹⁵⁹  A number of HIV-positive children cited frequent illness as a problem—teachers would scold or threaten to beat them for being absent, but they could not ask to be excused from school for fear of being stigmatized.  Staff of a Chennai-based NGO that is supporting an HIV-positive mother and daughter to live independently explained that the girl was attending school but was often out sick:  “It’s a little bit of a tricky situation.  We can’t go and tell the school that the child is positive and so needs accommodation.  We put the child in school but say to the child, ‘Please stay out if you have nicks and cuts.’  We educate the mother to see this and how to care for the child if she has nicks or cuts.”¹⁶⁰  Some HIV-positive children also said they missed school because they had not been able to get adequate medical treatment for opportunistic infections. 

Cases of Children Excluded from School

Bency and Benson

The best-publicized case of children being denied access to school is that of Bency and Benson (their real names), two HIV-positive orphans in Kerala who were six and eight years old at the time we interviewed them in late 2003.  According to the children’s maternal grandfather, who chose to speak with Human Rights Watch in the company of a local Christian priest, Bency and Benson’s father and mother died of AIDS in 1997 and 2000, respectively, leaving the children in his and his wife’s care.¹⁶¹  When Bency reached school age, her grandfather told us, he enrolled her in a private, Christian, English language school, but after the first year, he was unable to afford the fees.  Bency then stayed at home for around one year.  In 2002, he said, he enrolled her in a private Muslim school, but after four days, the headmaster told him that other parents had said “they wouldn’t send their children if she stayed.”  He then took her to a private-aided school, but again, after a day, the headmaster told him that “the parents made problems and . . . said that the disease would spread by air, blood, water.”  The grandfather then took her to another private, English language school, borrowing the money to pay the fees, and concealing her parentage.  But, he said, “someone in the neighborhood informed the school that this wasn’t true and that she was positive . . . and she was sent out of school.”  On October 25, 2002, he said, he petitioned the district collector, a local government official, who “sent a letter to all the schools asking them to readmit her, and they all refused.”

On February 13, 2003, I went to the Secretariat [the state government office building] with the child and fasted. . . .  Then the Chief Minister came to the scene and directed the education department to admit Bency and Benson to a local government school.  This was the first time Benson was involved. . . .

The children got admitted [to the local government school, Kaithakuzhi school], and the director of education of this district came to the school and wrote their names on the registry.  There was a lot of media that day and they published the story.  The next day I brought the children to school, and they studied there about one week with no problems. 

Then the PTA [parent-teacher association] raised the same issue.  It was the same as before.  All the parents demanded that they leave or they wouldn’t send their own children.  And they did—for about nine days they kept their children at home.  Just Bency and Benson were there.  So the District Collector, the Chief Secretary, SACS [state AIDS control society], some medical workers, and others came for a meeting on March 4, 2003.  The PTA president, other parents, and some others asked the authorities questions.  There was a lot of misunderstanding and a lot of foreign media.  The medical authorities did not answer some of the questions.  For example, one doctor said that the disease will not spread through razors, and another doctor said it will definitely pass this way.  Then the people said, “Even you are confused and unsure!” . . . 

Finally the District Collector ended the meeting with no decision.  They decided that school would be started at home.  They promised they would start the next day, but they didn’t, so I went to see the Chief Minister and he ordered that a school be started here [at our house].  There was an eight-day gap.¹⁶² 

On March 14, said a local Christian priest who had advocated on the children’s behalf, a teacher came to their home and taught the children for the ten days remaining in the school term.  “The teacher would not come inside,” the priest told us.  “I would come and see this and saw the teacher many times outside.”

The next academic year, they first did a month at home in June and then they went to the library just opposite the school.  Their names were on the roll of the school.  One teacher was specially appointed for them.  This was a new teacher, different from before. . . .

Last Monday [Nov. 17], the children were taken to the headmistress’s office.  They now sit inside the office but not with the other students.¹⁶³

A local political figure, Prathapa Varam Thampan, reportedly publicly attacked the children’s grandfather for sending them to school, but state and national government officials responded by publicly visiting and touching the children, following considerable media coverage of the case.¹⁶⁴  Hindustan Latex Ltd. agreed to pay for antiretroviral medication for five years; when we interviewed them, Bency and Benson showed us the medicine bottles and told us they were taking the drugs.

By early 2004, Bency and Benson were back in a regular classroom.¹⁶⁵

Other Cases

Despite the government’s eventual response, the case terrified families caring for HIV-positive children, who feared their children would also be expelled from school.¹⁶⁶  According to a local NGO that provides services to people living with HIV/AIDS, as a result of the Bency and Benson’s case, “[w]e know of two or three [HIV-positive] kids, but we don’t work with them because the parents are scared that it will get media attention and they will have problems.”¹⁶⁷

Their fears appear to be well-founded.  Human Rights Watch documented other cases of HIV-positive children being excluded from school who did not receive the attention and remedies given to Bency and Benson.  For example, six-year-old Anu P.’s family told Human Rights Watch that her teacher sent her home from a government school in Maharashtra soon after she enrolled in kindergarten in June or July 2003.¹⁶⁸  When we interviewed her, Anu P. was living with her grandparents, her thirteen-year-old brother, and her eight-year-old sister.  Both Anu and her sister were HIV-positive.  Their parents died of AIDS in 1998 and 2000, a fact known people in the community, their grandfather and their uncle said.  “They harass us so much that we don’t want to see their faces.  They don’t allow their children to play with ours.”¹⁶⁹

Anu P.’s sister explained what happened when Anu tried to go to school:  “My sister went for the first day of school.  She attended kindergarten for three or four days . . .  The teacher said, ‘She has skin problems so please don’t allow her to come to school.’  She said to me, ‘You tell her please not to come again to the school.’”  Although there would be legitimate reason for excluding a student with a contagious infection for the limited period of time during which she posed a real risk to others, Anu’s grandfather told us he believed Anu was sent out of school because she was HIV-positive:  “The teacher didn’t allow her to come to school because she believes Anu is HIV-positive.  I believe that other parents were talking amongst themselves, so the teacher said she shouldn’t come.”  The family was afraid that if they protested, the older girl might be sent out as well.  According to the grandfather:  “I feel that if I tried to do something about the younger child, the teacher might make problems for the older girl and maybe even kick her out.”  Anu was still not attending school when we interviewed her in November of 2003.  “I want to go to school,” she told us.¹⁷⁰

Journalists, doctors, and associations of people living with HIV/AIDS also reported other cases of children being excluded from school because they or their parents were HIV-positive.¹⁷¹  For example, staff of the Council of People Living with HIV/AIDS in Kerala (CPK+) told Human Rights Watch about two such cases. 

In mid-November 2003, CPK+ staff reported, they spoke with a woman in Malappuram district, Kerala, whose six-year-old daughter’s government-run school stopped allowing her to attend after her father died of AIDS.¹⁷²  “At that time the child was going to school, but then she was not allowed to go,” the staff member told us.  The staff member explained:

The mother is still strong and wants the girl to go to school.  She has filed a case.  They are poor.  Now the girl is not in school.  She was kicked out about one year ago and a case was filed.  Now there is a new [Kerala state] policy that children shouldn’t be denied education, so their advocate is encouraging them to continue the case.

The second case occurred in Thrissur district, Kerala.  According to CPK+ staff, a nine-year-old boy, who was HIV-negative, had lost both parents to AIDS and was living with his grandparents, who had approached CPK+ for help two years before.¹⁷³  Both government and private schools rejected the boy because his parents died of AIDS, the staff member told us:  “The child had to change schools continuously.  By third grade he had changed to a fifth or sixth school.”  The community had shunned the family, staff member said, and “other parents were not willing to let their children mingle with the boy.”  CPK+ began assisting the family with a monthly 300 rupees (U.S.$6.25) stipend, and negotiated with a church-run school to admit the boy.  At that school, “only two people in the management know” that his parents died of AIDS, the staff member said.¹⁷⁴

A government HIV/AIDS counselor in Kerala also reported that two persons living with HIV/AIDS under her office’s care had children who had problems in school:  “The teacher said that one couldn’t sit with the others and separated them.  NGOs gave awareness to people and taught them, and now the teachers changed.  The main thing is that other parents are involved with the problem.”¹⁷⁵

According to news reports, six-year-old Babita Raj, whose father died of AIDS, was barred from attending a government-aided primary school in Parappanangadi, Kerala, after the parent-teacher association and school authorities protested, and was not attending school as of October 2003.¹⁷⁶  Officials reportedly refused to readmit her even after the intervention of social workers and local government authorities, who obtained a medical certificate stating that she was HIV-negative.  The local government school also refused to allow her to attend.¹⁷⁷

Instances of children being excluded from school because they or their parents were HIV-positive have also been reported in Karnataka and Andhra Pradesh.¹⁷⁸  According to the Lawyers Collective, the NGO Freedom Foundation brought suit in the Andhra Pradesh High Court for three children in its care to attend school.  While the case was pending, one of the three children died.¹⁷⁹

Several Chennai-based NGOs told Human Rights Watch that, compared with Kerala, discrimination against HIV/AIDS-affected children was not a major problem in Tamil Nadu.¹⁸⁰  However, the reason given was that parents and children were successfully hiding their status, not that government schools had a working policy of accepting HIV-positive children.  The Chennai-based Children Affected by AIDS Forum in 2002 identified “gaining acceptance in schools for HIV/AIDS-affected children” as a priority,¹⁸¹ and, as described elsewhere in this report, Human Rights Watch documented several cases in Tamil Nadu of children being excluded from school or separated from the other children because they or their parents were HIV-positive.

In contrast with the cases above, Human Rights Watch also found instances in which well-informed NGOs and individual teachers had successfully educated school officials and other parents about HIV and gained the admission and acceptance of HIV-positive children.  For example, in Kerala, two guardians of HIV-positive children orphaned by AIDS told us that teachers were able to sensitize the other parents who tried to keep the children out of school. ¹⁸²  The director of a hospice in rural Tamil Nadu and NGOs in Chennai described particular instances in which they were able to get HIV-positive children into schools by educating school officials.”¹⁸³  While, these interventions were the exception, they demonstrate that discriminatory practices are not inevitable or cultural but instead can be and have been successfully challenged by courageous individuals.

Discriminatory Treatment in School

AIDS-affected children who are admitted to school may be still discriminated against, as an activist explained:  “It’s not just getting the child back in school.  It’s how he is treated when he gets there.”¹⁸⁴  For example, Sharmila A., whose story is told above, was made to sit alone on the last mat, and, her grandmother told us, the teacher told the other children not to play with her.  (Her teacher subsequently sent Sharmila home when she contracted tuberculosis.)  The Thrani Center for Crisis Control in Thiruvananthapuram, Kerala, which counsels people living with HIV/AIDS, described the case of a nine-year-old boy whose teacher  separated him from other students in the classroom.  The boy had told them, “I only know my parents got some disease . . . these people think I am also having the same illness.”¹⁸⁵  A study in Sangli, Maharashtra, of children in households in which someone had died of AIDS found that the children’s schoolmates “often” avoided, beat, or threw stones at them.¹⁸⁶

A U.N. official explained the importance of addressing mistreatment and discrimination within the school, as well as ensuring access:  “It is not enough to allow positive children entry into schools if everything remains the same—ostracism, fear of teachers and children alike, and parental resistance.  Then access becomes a shallow achievement.  Our task is more than getting HIV-positive children in school—we must work to retain them in the classroom and ensure a conducive learning environment.”¹⁸⁷

Other Barriers to Education

HIV/AIDS also hurts children’s ability to go school in other ways.  When a primary wage earner sickens or dies from AIDS, children may be pulled out of school, enrolled late, or never enrolled at all.  Jaya V., age ten and HIV-positive, told us:  “When my father got ill and my mother didn’t have a job, I had to stop school for two years, when I was six and seven.”¹⁸⁸  Her mother, who was present during the interview and who was living with HIV/AIDS, confirmed that all three of her children stopped school temporarily when her husband developed AIDS.  Jaya later returned to school.  But, she told us, she had been out of school for a month with hepatitis, when we interviewed her.  Jaya threw her arms wide and said, “I like going to school this much!”¹⁸⁹

Ravi K.

The experiences of fourteen-year-old Ravi K. and his siblings illustrate the variety of ways AIDS can impair children’s ability to attend school, even when they are HIV-negative or their status is hidden.  Ravi was in fourth grade when his father, who was HIV-positive, became bedridden: 

I struggled to go to school in fourth grade but passed.  In fifth grade I couldn’t study well because my father was sick.  I couldn’t concentrate.  I stopped for two years and then went back.  If I hadn’t stopped, I would have been in ninth grade. . . .  I was feeling very sad because I didn’t go to school like other children.  When I saw them in their uniform and books, I felt sad.¹⁹⁰ 

His mother, who was also HIV-positive, added, “He used to tell me this every day.”  Ravi continued: 

I stopped going because my father was sick, and my family was in a poor state, and I had to help my family’s income and look after my father and earn a livelihood.  I was whitewashing walls and painting.  I earned about 50 rupees [U.S.$1.04]  daily. . .  I also helped care for my father.  When he was in bed, I would bring him things, help with feeding, cleaning, running errands.  My father was happy that I helped him but felt sad that I couldn’t get an education.

Ravi’s sister, Jana K., who was eleven years old and living with HIV/AIDS, started first grade when she was five but stopped before she finished the year because, her mother told us, “the family fell sick.”  Jana told us:  “I often used to fall sick and would take leave from school.  The teacher would question me and threaten to beat me.”  Finally her mother brought her to the NGO-run clinic, where she and her mother were treated.  Her mother explained:  “After I got support, her health improved and she grew.  She went back to lower kindergarten [at age seven] and then to first grade.  A normal child would be in fifth or sixth grade.”  Jana was in the third grade when we interviewed her.

In contrast, by the time Ravi and Jana’s younger brother, Meyyan K.,also HIV-positive, reached school age, the family was already receiving financial support and medical treatment.  He started school on time and, at age eight, was in second grade.  “I have friends at school who I play with,” he said.  “My teacher is very loving.”

When asked if their schools know the children are HIV-positive, their mother replied:  “No.  If I tell them, they won’t admit the children.”¹⁹¹

School Fees and Related Costs

The cost of education, both directly and in the loss of the child’s labor, can also be a significant barrier for AIDS-affected children, who already face significant economic burdens caused by AIDS.  “When parents work, they can pay for school, but when the parent is sick, it is difficult for the parent to support the child,” an NGO community worker explained.¹⁹²  Most schools in India charge some sort of fee, if not for matriculation then for exams.  In addition, families must pay for uniforms, books, other school supplies, and, if the school is not within walking distance, transportation.  Some parents and children also reported paying exam fees (usually in higher grades) and assessments to improve school buildings.  As the following testimonies illustrate, school costs cause some children to drop out of school, start late, or never attend at all, and they have a disproportionate impact on girls.  Female-headed households face additional economic difficulties, as further explained in the section on gender discrimination and HIV/AIDS-affected children.

According to the Public Report on Basic Education in India, a comprehensive evaluation of the education system in North India,the average annual cost of sending a child to primary school in 1996 was 318 rupees (U.S.$6.63) for a government school and 940 rupees (U.S.$20) for a private school.¹⁹³  The Indian government explains that this amount “may not look high but it is a substantial burden on a poor family”;¹⁹⁴ the World Bank notes that the direct cost of education in India, “even for public schools and even ignoring the opportunity cost, is nearly prohibitive for a poor family.”¹⁹⁵  Per capita income in India was 10,964 rupees (U.S.$228) in 2002-2003, with extreme variation by locality;¹⁹⁶ reaching only 2,444 (U.S.$51) rupees per yearin rural areas.¹⁹⁷ 

In Human Rights Watch’s interviews, we heard total costs of education ranging from around 500 rupees (U.S.$10) to 1,500 rupees (U.S.$31) a year to attend a government school, and 5,000 rupees (U.S.$104) a year and up to attend a private school.¹⁹⁸  For example: