December 16, 2008

IV. Barriers to Treatment for Children Living with HIV

Children living with HIV can face a range of treatment access barriers. HIV-positive mothers are victims of violence and property rights abuses, and unable to care for their children. Children, in particular orphans, are neglected and abused by their caregivers who prevent them from being tested or following treatment. Parents or caregivers lack accurate information about medical care for children, or avoid testing and treatment because of stigma and discrimination. Many families cannot afford transport to reach health centers, or enough food to avoid serious side effects from the drugs.

Perceptions about HIV and Lack of Accurate Medical Information

Perceptions about HIV/AIDS and modern medicine

Perceptions of HIV/AIDS are closely tied to perceptions of body, health, sex, and sexual relations. As different ethnic groups in Kenya have different traditions, these perceptions are not uniform. In general, HIV is perceived not only as a disease, but also as an attack on traditions and morality. It is often seen as being associated with a wider process of societal decline.[62] For example, among the Luo in western Kenya-the third largest ethnic group in Kenya, with about 3 million people-AIDS is often associated with "chira." Chira is a physical condition that leads to symptoms similar to full-blown AIDS. It is considered the result of disordered social relations, and believed to befall people who have gone against the customs and traditions of the society.[63]

Kenyan churches' response to HIV/AIDS has added a religious dimension to the fear associated with the disease and sometimes deterred people from seeking medical treatment. Many churches have explained AIDS as a curse from God that is meant for sinners; people with AIDS were at first blamed for their illness and severely stigmatized. Such beliefs are still very strong,[64] although the Anglican church has apologized for its stigmatization of people living with HIV, has become more constructively engaged in the care of people living with HIV over the years, and has made efforts to overcome this prejudicial attitude[65] (for more on stigma as an enduring barrier to HIV testing and treatment, see below). Some Christian movements believe in the power of prayer to heal, and sometimes instruct their followers not to seek medical treatment. For example, churches such as Legio Maria in western Kenya instruct members to reject modern medicine and to pray together for God to heal the person.[66] Other sects and churches do the same.[67]

Many people living with HIV seek the help of traditional healers. Herbalists treat symptoms of opportunistic infections, in particular pain and body rashes, with herbs and potions.[68] Other traditional healers pray for healing or perform ceremonies to exorcize bad spirits. Traditional healers can play an important role in treating opportunistic diseases and educating people about HIV/AIDS prevention if they convey accurate information, but they have no treatment against AIDS itself, contrary to what many patients hope and some healers claim.[69]

Lack of accurate medical information

The lack of accurate information on HIV/AIDS can contribute to discrimination against those living with HIV. For example, many people still believe the disease can be spread by sharing the same dishes or even by living near a person with HIV; sometimes people are reluctant to take in AIDS orphans because of this.[70] The manager of Nyumbani orphanage for HIV-positive children explained,

Often, when other family members take in AIDS orphans, they really do not want to associate with that child. They are worried that they and their children could get infected.[71]

It is also not widely known that the virus might be present in a healthy-looking person. As a result, parents often fail to have their children tested soon enough, waiting until they show signs of a serious illness although even an apparently healthy child can be HIV-positive and need treatment.[72] One HIV-positive widow said about her daughter, "I haven't tested her now because I don't believe she is sick-she looks and acts healthy."[73] Older children in particular are usually only taken for medical care when they are visibly ill-their mothers tend to consider them healthy otherwise. A nurse commented,

Older children are usually brought in by parents or guardians to be tested because they are sickly. But if the child is not sick-looking, they don't want them to be tested. I get the sense that there are many children in this country who are [HIV]-positive but not getting tested, they are falling through the cracks.[74]

Parents might also avoid getting a child tested because otherwise they will have to explain to the child what is happening.

Many patients distrust antiretroviral drugs or lack information about them. We interviewed the guardian of 10-year-old Sarah in Mathare slum, Nairobi, who told us that she had taken the girl off antiretroviral therapy after four days, as the drugs made her weak.[75] During the interview, Sarah was leaning on her aunt's shoulder, visibly sick.

A community health worker in a rural area of Nyanza province told us about a similar case that led to a girl's death:

I took this young girl to be tested… But the problem is, I couldn't now monitor this girl and make sure she was adhering to the treatment-she lived too far away for me to go all the time. There is this myth in the community that if you take the ARV you become very weak. So as the child was showing some side effects, the grandmother stopped giving her the medication, and the girl died.  She was around six or seven years old.[76]

In another case, parents took a baby co-infected with HIV and tuberculosis off antiretroviral drugs after she showed side effects: she did not eat well and her eyes turned yellow. After the baby got worse, they started her on tuberculosis medicine a second time.[77] But when patients stop and start ART, there is an increased risk that they will become resistant to the medicine.

Stigma, Fear, and Silence as Barriers to HIV Testing and Treatment

The stigma of AIDS

HIV/AIDS is not only a public health crisis but also a social crisis. Many people avoid speaking about AIDS and avoid testing. If they do get tested and treated, they go to great efforts to keep this confidential. This situation particularly affects children who are dependent on their parents or guardians' care. Some progress has been made in addressing stigma and discrimination against people living with HIV in the workplace, schools, and health facilities, particularly in urban areas.[78] For example, there are now people speaking openly about their HIV-positive status; HIV support groups have been set up where those living with HIV share experiences. The success of treatment for people who seemed close to death and have recovered may have contributed to this change.

Many people, however, continue to live in fear and face stigma and discrimination. Such persons may avoid going to nearby health facilities known to provide HIV-related services because they do not want to be seen by neighbors or other members of the community. Many go to health facilities that are further away despite the increased cost of transport, or they do not go for medical help at all.[79] Certain health centers that are known solely as places for HIV services may also be avoided.[80] A counselor in a voluntary counseling and testing (VCT) center in Siaya district, Nyanza province, told us,

[N]ow that ARVs are available at the government hospital in Lower Ambira, you still have many people accessing the drugs at Siaya District Hospital because they don't want to be seen there at Lower Ambira.  So we give people several places they can go and get the drugs, and let people make their own decisions based on where they are most comfortable…. For example, I have seen men and women who live in Nairobi now, that come back to Siaya hospital to get their drugs so they are not seen.  And even one person I know in Lower Ambira goes to Kisumu to get his drugs so that he is not known around here as being HIV-positive.[81]

A community health worker in Mathare slum, Nairobi, told us how some Kenyans suspect children of being bewitched when they have HIV or when their parents have died of AIDS.[82]

Secrecy in the home: Women'svulnerability to pressure and abuse by husbands

The silence and stigma that surround HIV reach right into the family. Many women are afraid to tell their husbands about their status for fear of abuse or abandonment, and as a result find it difficult to take their children for testing and treatment. Some women suffer stigmatization, violent assault, and separation when their husbands find out about their status; some are thrown out of the house, often with the children.[83] A social worker in the Rift Valley commented that there are "sadly… too many cases where the husband leaves her when he finds out she is positive."[84] Women in polygamous marriages worry "that the husband will ignore them and go with the other wife," according to a counselor we spoke with.[85] Some women test for HIV secretly and then hide their drugs or keep them with neighbors.[86]

Men are generally less closely in contact with the health system and often refuse to get tested. With regard to medical care for children, it is usually the mother's role to take a child to a health center. One activist stated, "Ninety percent of women shoulder the responsibility of taking children to health facilities."[87] Some women's groups have started programs to encourage men to support their wives and children in seeking health care.[88] A leader of an HIV support group in a Nairobi slum told us,

At first we had only women. Then last year, we had 10 men in a support group. So now we have some mixed groups-men, women, children. Men are sometimes opposed to testing.... Many men also don't tell their wives if they have done the test…. Some couples are both on ARV but do not tell each other. Some people divorce because of the test. We have some women in our support group who have not told their husband about their status.[89]

The secrecy in the home can become an obstacle for child health care. This starts right after birth: women raise suspicions when they do not breastfeed their baby, as it is now known that breastfeeding can lead to HIV infection. Due to intense pressure, many HIV-positive women breastfeed or feed babies a mix of formula and breast milk; both approaches increase the risk of HIV transmission.[90]

We interviewed a community health worker in Nyangoma village, Nyanza district, who is looking after Prisca, age four. Prisca is HIV-positive and on cotrimoxazole, and her mother is taking antiretroviral drugs. Prisca is the child of her mother's second marriage; her mother remarried after her first husband died, likely of AIDS. The mother has not told her new husband about her HIV status, and has also not told him about Prisca having HIV, as this would reveal her status as well. She has managed so far to treat her child secretly, but as Prisca is developing side effects and further health complications, this is proving increasingly difficult.[91]

Stigma and discrimination in health facilities

A few years ago, stigma and discrimination against AIDS patients were rampant in health facilities. This situation has improved, according to many counselors and health professionals. Most people interviewed during this research did not have any discriminatory experiences to relate; some lauded the care that health personnel of HIV clinics provided. However, more subtle forms of discrimination in the health sector continue.

A recent study measured stigma and discrimination in a sample of Kenyan health facilities.[92] On the positive side, 99 percent of all healthcare providers interviewed said that patients with HIV should not be isolated. Over 90 percent also disagreed with statements that describe HIV as a punishment from God and blame people with HIV for bad behavior.[93] On the other hand, the study also found that although most facilities analyzed knew about HIV protection policies (75 percent) only 27 percent reported implementing such policies, and that a significant percentage of healthcare providers had fears about providing care to HIV-positive patients.[94] Experts on pediatric HIV confirmed to Human Rights Watch that some health workers fear treating children, partly due to general fears surrounding HIV and partly due to a lack of training and information about pediatric HIV.[95]

Some patients interviewed by Human Rights Watch spoke about experiences of discrimination by health personnel. A 27-year old woman with HIV told us how she was treated at Provincial Coast General Hospital in Mombasa: "At the hospital, some of the nurses say, 'You people with HIV, you are disturbing us.'  Things like that. So where should we go?"[96]

An HIV-positive man told us how his doctor "didn't want to go near me, he kept his distance."[97] Several women complained about stigmatizing behavior at Pumwani maternity hospital. They said that HIV test results were sometimes announced in front of other waiting patients, breaching basic confidentiality rules. They also recounted situations where patients were asked in front of others where they got the virus from or whether they have been having sex.[98]

Health workers sometimes blame mothers for infecting their children, in particular when they breastfeed.[99] Some health workers even believe HIV-positive women should not have children; in the study mentioned above, 20 percent of health providers said they had told an HIV-positive woman not to have children.[100] Poor treatment of mothers or other caregivers in health facilities can deter them from taking children for HIV testing and treatment. Blame, public disclosure of their status (or their child's status), or discriminatory attitudes and behavior by health workers can constitute barriers to accessing treatment.

The situation of HIV-positive children in schools

At present, overt discrimination in schools seems to be somewhat reduced. However, more subtle forms of discrimination against HIV-positive children in school continue. HIV-positive children who are aware of their HIV status often feel great pressure to keep their situation secret at school, and those in boarding schools sometimes take their drugs secretly.[101] A 16-year-old HIV-positive boy explained,

I go to a boarding school in [name withheld]. The children and teachers do not know my status…. If you tell your friends at school, you get a lot of rejection. I only have two friends at school. I have to find my time to take the medication when nobody is watching. I do it in the dormitory. In the morning, I do it when everybody is still asleep.[102]

According to a nurse at an HIV/AIDS clinic, children may stop taking treatment altogether when going to school.[103] Until a few years ago, blatant discrimination against HIV-positive children in schools was widespread. Those who revealed their status were refused admittance or kicked out of school. A mother told us about her nine-year-old HIV-positive daughter, Charlotte:

At first she was attending a government school. She had problems with her eyes and rashes on her body. When I went to talk to the teacher, I got a hard time to talk to them. Later on, they told me that my child will infect the others and she was chased away…. She is now at a mission school because at government schools, there is a lot of stigma and discrimination.[104]

In 2003 the Nyumbani orphanage for children living with HIV went to court after some of its children were refused admittance at a high school, and won a judgment that government schools would have to admit children from the orphanage. But up to the present, several schools that Nyumbani orphanage sends children to have asked Nyumbani staff to keep quiet about the health status of the children they are sending and to remove all Nyumbani signs from their cars to prevent local people from realizing that children with HIV are attending the school.[105]

Most other children we interviewed did not tell their classmates about their status as they feared negative reactions from the other pupils. Parents also said they often avoided telling schoolteachers about their child's illness, although it would be important for teachers to know in case the child became suddenly ill.[106] However, we also interviewed several parents who had courageously informed teachers about their child's illness without any negative consequences. The guardian of eight-year-old Milicend told us,

I had to tell the teacher that she was HIV-positive, but she was very understanding, there has been no problem at school…. The teacher told me that [Milicend] is the only HIV-positive student in her class, but that there are many others at the school.[107]

Lack of Care, Neglect, and Abuse of Children Living with HIV

Parents or other primary caregivers have a duty to ensure the child's well-being, and to look after their physical and emotional development.[108] HIV-positive children-just as all children-are in great need of love and care, but at the same time, they are particularly vulnerable to neglect and abuse; girls are particularly vulnerable to sexual abuse and exploitation.[109] The failure to provide basic material and emotional support constitutes neglect and is far too common for children with HIV. Neglected children are much less likely to get HIV testing and treatment. In our research, we found that boys and girls are equally affected by such neglect.

The vulnerability of children with HIV-positive mothers

When a husband throws an HIV-positive woman and their children out of the house, she and her children are often left with almost no belongings at all. When a husband dies, the experience of widows and children often falls far short of the protections provided in Kenyan inheritance law[110]: in-laws often seize the property[111] (disinheritance of AIDS orphans is discussed below). A widow and mother of an HIV-positive girl in Kibera slum, Nairobi, told us what happened after her husband died:

My husband's family took the land and the household property. They left the whole house completely empty.… They isolated me and so I decided to go to Nairobi with the children. I am doing cash work [temporary work]; currently I am packing vegetables.[112]

Other women told similar stories. When they were chased away, they often went to Nairobi with their children where they now live in the slums under very poor conditions. They often are unemployed or do temporary work, which is sporadic and poorly paid.[113] A community health worker in Kakamega district, western Kenya, explained what local NGOs are doing to stop disinheritance:

[W]e discovered that women were being chased away when their husbands died by relatives, and accused of killing their husbands…. So we tell these women, if your husband dies, don't close your eyes and cry. Cry, but keep one eye open to see what is happening with your land.[114]

In recent years, women's rights organizations such as GROOTS (Grassroots Organizations Operating Together in Sisterhood) have worked with traditional leaders in Nyanza province to change practices. As a result, traditional courts now sometimes allow women to repossess marital property.[115]

A particular problem is the tradition of "wife inheritance" among the Luo ethnic group in western Kenya. Wife inheritance means that a widow marries the deceased husband's brother or other male relative who has the responsibility to build her a new house and raise her children as his own.[116] Some widows now oppose wife inheritance and end up breaking relations with their in-laws. Others accept it but find that the practice has changed and they receive less support than was traditionally required. Many newly remarried widows live in deep poverty, sharing very small, unfinished houses with a large number of children, as the new husband has not fully delivered on his duty to build her new house.[117]

The special vulnerability of AIDS orphans

There are about 1.2 million AIDS orphans in Kenya-children who have lost their mother, father, or both (double orphans).[118] A significant number of these orphans are themselves HIV-positive. Over 50 percent of orphans in Kenya live with grandmothers; others live with extended family members.[119] Some live with guardians who are friends of their deceased parents, others with complete strangers. Still others live in orphanages, in child-headed households, or on the street.

Under Kenyan law, when parents die, parental responsibility for the child goes to a guardian appointed in a parent's will, or to a guardian appointed by the Children's Court, or in the absence of such a person, to a relative.[120] Most parents do not leave a will when they die but make informal arrangements for child fostering.

The loss of a generation of young adults has fundamentally transformed the lives of the older generation. Older people are no longer retiring as before, but instead continue to work hard to be able to care for their grandchildren. Often extremely poor themselves, many struggle to look after their grandchildren properly.[121] Traditional patterns of child fostering have also changed. For example, in Luo society, prominent members of the father's family traditionally decided who-usually within the father's family-should bring up an orphan. Nowadays, dying mothers make this decision often by themselves, and it has become more common for orphans to be raised in their maternal family.[122]

Violence and abuse against AIDS orphans

AIDS orphans are particularly vulnerable to exploitation and abuse. Access to medical treatment can also be very difficult for such children. Children who live with non-parent guardians may face violations of property rights, labor exploitation, sexual harassment and abuse, and violence.[123] They are also often not able to get an education because guardians cannot or do not want to spend money on school fees or related costs, or want the child to work.[124] Orphaned girls sometimes suffer sexual harassment and abuse in the host family.[125] AIDS orphans left economically bereft may exchange sex for food, lodging, or money. Sexual abuse and transactional sex places AIDS orphans who are not already HIV positive at high risk of contracting the disease.[126]

Many orphans told us about beatings and other physical mistreatment they suffered.[127] James, a 14-year-old boy, ran away from home and was forced to live on the streets, where he was vulnerable to further abuse. He told us,

I cannot remember when my parents died. I think I was about 10. An uncle took us, me and my sister, with him, to his house in Kibera. He was harassing and beating me, for example when I played for too long outside. He wanted me to stay inside. My sister [who was healthy] was not beaten; she stayed inside and worked as domestic. My uncle often beat me on the back, with belts or other objects he could find. He would do it every couple of days. I ran away. But the uncle found me and brought me back. He would beat me then, too. He saw me as a burden after my parents passed away. He told me that I should have died instead of my parents.… Once I ran away to Karen [a Nairobi suburb], for a few days. I stayed in the street and in the forest, begging. I was alone there. Another time I ran away to Buru Buru [a Nairobi suburb] where I met other street children who faced similar problems as me. I stayed there for six months. I found a good samaritan who allowed me to sleep in his kiosk. He was also giving me tea. Finally, the man sent me and the other three children to a children's home in Buru Buru. I stayed there for six months. The other three children were picked up by their mother. Then I ran away from the children's center. A gentleman brought me to the police station in Kilimani where I was detained in a container for about one week.[128]

At the time of the interview, James was staying in a small shelter in Kibera and getting antiretroviral drugs and other medical care through a community project.

Frederic, a 13-year-old orphan in Kibera, said he was scared that he might lose the only caregiver he has left, even though his home situation was far from the caring environment a child needs:

I live with my uncle. My mom died in 2000 and my dad in 2003. I don't know why they died, my uncle doesn't talk about it.… My uncle's wife ran away when he got sick. He has sores all over his body. It's just the two of us…. Always I go to bed hungry. I do all the work in the house-I get water, cook, wash clothes and dishes-but there's never enough food or even money to buy water. My uncle doesn't let me play even when the work is done. If he sees me playing, he beats me. I don't know why. I'm afraid that he will die. I don't know who I can stay with.[129]

While AIDS orphans are vulnerable to abuse, not all children are actually subjected to violence, abuse, and exploitation. Many guardians do their utmost to care for AIDS orphans living with them.[130] The situation of orphans-as well as children living with their biological parents-is multifaceted, not least because children themselves are able to negotiate and change situations.[131]

Disinheritance of AIDS orphans 

On paper, Kenyan inheritance law provides children with important protections.[132] When both parents die without leaving a will, their property is to be divided equally among their children, whether male or female. If the child is under 18, a public trustee will administer the property until the court appoints a person who administers the property on the child's behalf; this may be the guardian or any other adult.[133]

Yet, in reality, many children in Kenya do not inherit the property they are entitled to from their deceased parents, such as a house or apartment, land, or movable property.[134] For AIDS orphans in particular this can mean denial of basic social and economic rights, including the right to health and education.[135] Children rarely know their rights, how to get a lawyer, or how to access the Office of the Public Trustee. In many cases, surviving relatives grab the property they are meant to administer for the child; in other cases, relatives seeking to safeguard a child's inheritance face numerous bureaucratic obstacles. Sometimes children are chased away from their parent's property. A counselor at Nyumbani orphanage told us,

Families strip children of their property and then place them here at the orphanage. For example, we had a case of a child staying with her aunt. The mother had died and left a flat. The aunt took the flat and then placed the child here.[136]

When children demand their inheritance, their relatives sometimes react with threats.[137] In a rare case, the Child Legal Action Network (CLAN), a local nongovernmental organization, managed to assist several orphans in Makindu, eastern Kenya, whose relatives had evicted them from their parents' property. The NGO helped to get a court order to reverse the eviction.[138]

Caregivers' Failure to Take Children for HIV Testing and Medical Care

Caring for a child who is HIV-positive constitutes a heavy responsibility. Caregivers need to take children for testing, particularly if the mother has died of HIV or if the child shows signs of illness. Caregivers must ensure that children take their medicine regularly, at the right time, and with sufficient and nutritious food. They must take children back to health facilities for regular monitoring, check-ups, and drugs. Caregivers also must support the child emotionally.

Importance for medical treatment of having a consistent caregiver

Children with HIV who do not have a consistent, attentive caregiver may be less likely to get tested and may not have the daily supervision necessary to comply with the medical treatment of HIV. This was the case with Carolyn, an eight-year-old girl in Kisumu. She lives with her grandmother, who brews alcohol for a living and is often away from home. The girl frequently stays during the day with her aunt, who lives nearby and who has become her real caregiver. The aunt told us,

[Carolyn's] mum died when she was four years old. After her mum's death a relative took [Carolyn] to Nakuru town. They had her until recently. But [Carolyn] refused to go back there, she said she was going without food and not sent to school.… She is living with her grandmother [now] but there is little food, and no one reminds her of the drugs. The grandmother also beats her sometimes… [Carolyn] had rashes and got often sick. I took her to a test at Tuungane [Youth Center, a VCT center]. She was HIV-positive and is now on ARV. I make sure she takes the drugs. She often stays with me during the day but the grandmother does not like that.[139]

A local human rights organization reported a case where a father interrupted his children's HIV treatment when he separated from the mother. He took his children from Nairobi with him to Nyanza province and failed to provide the children with medical treatment. This NGO obtained a court order for the children to come back to Nairobi.[140]

Even a short separation from the main caregiver-such as a visit to other relatives-can be fatal if the child's medical care is disrupted. In Nyangoma village, Nyanza district, we interviewed the aunt of Stephen, who died around May 2008. He was living with his maternal grandmother, aunt, and other relatives. He was HIV-positive and was put on tuberculosis medicines and then on antiretroviral treatment. Stephen's aunt told us,

He improved greatly. He went to primary school class four. Then, during the Easter break in April, his paternal family [in Kisumu] wanted him to visit. They mishandled him. He did not take his drugs there. He came back alone, on a vehicle, very weak and sick. They did not escort him and did not take him to the hospital. It was as if they did not want him anymore and sent him back. When he came back, we took him to Bondo Hospital. He died the same night. We took him for burial at the home of the paternal family. They showed sorrow but we blame them.[141]

When health workers and social workers suspect that a caregiver is neglecting a child, they sometimes decide not to start ART because they fear that the child may not get the supervision necessary to take the drugs consistently. As stated above, failure to take the drugs regularly can lead to drug resistance.[142]

Abandonment, abuse, and denial of HIV treatment

Some parents or guardians willfully harm HIV-positive children, or completely abandon them. Social workers and other professionals assisting children told us about foster parents' tendency to shift responsibility by moving the child among relatives. A leader of an HIV support group said,

When guardians notice a child is HIV-positive, they give the child often to other relatives. They don't want to be associated with these children. There are many situations of abuses of those children.[143]

In December 2006 Nyumbani orphanage received an eight-year-old boy with AIDS. He had been abandoned by his aunt at the Kenyatta hospital. The boy had suffered beatings, despite his apparent illness and frail physical condition.[144]

Unfortunately, HIV testing is also not always done out of concern for the child. Instead, guardians have taken orphans for testing just to find out if the child is HIV-positive and then kicked the child out of their home.[145]

Seventeen-year-old Christine placed her trust in a complete stranger when she was badly treated by her stepmothers:

Both my parents died. I had two stepmothers who were married to my father. I lived with them. Sometimes they gave me food, sometimes not. My older sister ran away. Once, when we came to the stepmothers' from our grandmother's house, they took away all the food she had given us…. I was sometimes sick. They put me outside the house during the day and left for work. I would stay like that until they come back. I just laid down, people used to pass. One day, a stranger lady came and found me sleeping outside. She took me with her to her home. I stayed with her for some time, but then she became mean to me. She cooked my food separately from hers and she prepared it badly. I was sick then, and she did nothing about it.[146]

Christine was HIV-positive but only received treatment when her sister, who had run away from the household, took her to Kenyatta hospital. She is now living in Nyumbani orphanage. Another example of neglect and denial of treatment is that of 15-year-old Leah from Kisumu, who is now receiving ART. She told us about her experience of living with her brother and sister-in-law after her mother's death:

My brother took me to Tuungane Youth Center for the test when I was 14. He took me there because I was often sick…. When his wife found out about my status, she was mistreating me. She told other people. She did not allow me to use the same cups [as] the rest of the family. She beat me and sometimes refused to give me food. Also, she would close the door during the day and not allow me to go into the house to get the medicine. The time for taking drugs would pass. I would tell the woman but she just disregarded this and closed the door. I told my brother too, and then there would be quarrels. The lady would be even more angry with me. So I decided not to tell my brother any of my problems.[147]

A staff member of Pandipieri, a large VCT center in Kisumu, told us about the case of a 13-year-old boy who was "so sick that the teacher at the school referred him to us. When we finally took over his care, we got him tested, his CD4 count was nine; it was too late. He died soon after. The guardian had the means but just didn't take him to the hospital."[148]

Trauma and self-blame

Sometimes, neglect is caused by stress on the parent or guardian, for example when many other people around the person have already died of AIDS. People may not take their children for testing because they are afraid of the results and feel they cannot cope with the bad news of an infected child. An HIV-positive mother explained to a community health worker that she did not take her child for testing because she could not live with an HIV-positive child; she would blame herself for the sickness.[149] A community health worker in western Kenya recounted the case of a girl being cared for by her grandmother:

This girl is not on ARV yet… The grandmother has a very negative attitude towards her and is not interested in taking her to the clinic for checkups. She is ignorant about these things even after I have talked to her. All her sons have died of AIDS, and then this mother and other wives too. This has affected the grandmother psychologically. She can't deal with it properly even though I have talked to her. Now I see this girl, she is having a skin disease on her head, and her health is looking poor. I love this girl. She is now nearly 11, but she can't go by herself to get help.[150]

Failure to disclose: Violations of the child's rights to information

Parents usually do not tell their children that they are HIV-positive until they reach adolescence. We interviewed children between the ages of 8 and 14 who had not been told about their HIV status. For example, Angeline, a healthy looking 14-year-old whose mother died of AIDS, is taking antiretroviral drugs every day but her father has not told her why she is doing so.[151]

Parents refuse to tell their children about their HIV status because they do not want children to talk about HIV in front of others: They are afraid that a younger child might "spill the secret" unwittingly and hence breach confidentiality.[152] This is especially a problem for many women whose own HIV-positive status would also likely be revealed to their husband or to others. Many parents are also deeply afraid of telling their child; they naturally want to protect them from bad news. Parents also lack support and information on how to disclose to their children, and are sometimes afraid the child will blame them. But, caregivers' failure to disclose HIV-related information to children in their care may lead to psychological problems. Also, if not explicitly told by their caregivers, children may inadvertently learn about their illness in a manner that is not supportive. We interviewed the mother of Elaine, age 12, about her daughter's reaction when she accidentally found out that she was HIV-positive:

Two or three days ago [Elaine] found out that she was positive. She overheard some people here in the [IDP] camp talking about it. She took the news very badly, she was very hostile. She heard that the medicines that she is taking are for people with HIV/AIDS. So she was very aggressive…. For the first two days she refused to take them [the ART], but now we have talked about it a little bit and she is taking them again.[153]

Children are able to sense that their caregivers are concerned about them, and they might feel there is a "conspiracy of silence" surrounding them if information about their HIV-positive status is withheld from them. If adults refrain from speaking to them about this for years, such children may live in great anxiety, and in fact suffer more than if they were told about their status.[154] Experiences in other settings show that disclosure can work well, if the process is well-managed and caregivers are ready. In a project in Thailand, children who were screened for and then participated in a disclosure program were on average 10 years old.[155] Studies indicate that children with knowledge of their HIV status have higher self-esteem than children who are unaware of their status.[156]

Denying older children information about their HIV status violates a child's right to information and privacy, and the child's right to voluntary, confidential HIV counseling and testing. It also compromises a child's ability to participate in his or her own medical care, which is an important part of the right to health.[157]

Disclosure should take into consideration the child's age, maturity, family dynamics, and the clinical context. At a minimum, children must know about their HIV status as soon as they start to become sexually active-otherwise they risk infecting others. The American Academy of Pediatrics has closely studied the issue of disclosure and recommended that children from school age should receive age-appropriate information and counseling about their HIV status.[158] A Kenyan pediatrician working with HIV-positive children explained his experience:

I would say any time the child starts asking questions about why I am here, why am I taking these medications, is the right time to tell the child. [Disclosure] can be a gradual process. If the child is able to recognize what he or she is doing, then a parent should start disclosing in a small way. I would say this can be from age 7 to 10. At the very least, a child above 10 should know their status. There is a gap in training in the country on how to do disclosure to children.[159]

(The issue of the age at which a child should appropriately be allowed to be tested for HIV without parental consent is discussed below, in Chapter VI.)

Children with No Caregivers: Child-Headed Households and Street Children

Child-headed households

The number of households where everyone is younger than 18-child-headed households-has increased dramatically since the HIV epidemic started.[160] Children in such households face many difficulties; they are vulnerable to exploitation, violence and abuse, and often fail to get the medical treatment they need.[161] A woman working with street children in Kisumu described one such household:

I knew of three orphans living on their own. They would come by sometimes and we would give them food supplements. We didn't see them for a while. Finally an older one came and asked us to help the younger girl. We took her to be tested, but it was also too late, her CD4 count was 13, she died three weeks later. I don't think this was a case of purposeful neglect, but the older sibling who was still a child didn't have the education to think to get help for HIV. She didn't know these things [services] were free, and no one stepped in to help.[162]

A social worker in Nairobi dealt with the case of two boys, ages roughly 10 and 12, who were taken to western Kenya by their relatives after their mother died. Their mother had tested HIV-positive in Nairobi, and the boys were keen to get tested themselves, he told us. But relatives stripped them of the little property they had left, so the boys decided to go back to Nairobi by themselves. They worked until they had enough money for the bus fare and returned back to the Nairobi clinic where their mother had taken the test. Luckily both boys were HIV-negative.[163]

Street children

There are an estimated 300,000 street children in Kenya, according to the government.[164] Many of them have escaped abuse at home. Street children face serious difficulty in getting medical treatment. Hospitals are ill-prepared to deal with children without a home and may withhold ART out of fear that treatment adherence would be low.[165] For the same reasons, NGOs are currently refraining from starting street children on ART unless they move into a shelter.[166] By the time street children seek assistance in a shelter or orphanage, however, it is often too late, and they die.[167] Some street children also do not trust social workers and refuse HIV testing, as a social worker explained:

We talk to the boys also about venereal diseases, and we have tried to test them, but many of them don't want us to draw their blood. Unless you know a boy really well, he doesn't trust us. Many believe that we are taking their blood for magic purposes…. We lost quite a number of boys on the street. You can tell that they had full-blown AIDS.[168]

The situation of street children is complicated by the fact that they are sometimes treated as criminals. Police have repeatedly rounded up and detained street children. Street children are also often subject to police brutality, sexual abuse and exploitation, and economic exploitation. Girl sex workers living on the street have been raped by police.[169] Sexual exploitation and abuse increase children's vulnerability to HIV transmission.

Economic Barriers to Testing and Treatment

Poverty is one of the main reasons children cannot access testing and treatment. Kenya is ranked 148 out of 177 countries on the Human Development Index.[170]  Per capita income is roughly US$580 per year, which is less than $2 per day; 46 percent of Kenyans are living below the food poverty line.[171] The country has been hard-hit by the recent rise in global fuel prices, in turn affecting transport costs and food prices.[172]

For children to fully access health care, they need money for transport, for adequate food, and for drugs, tests, and other health-related user fees. In general, out-of-pocket expenditures for health are high in Kenya. Patients also lose income while going to health facilities and waiting to be treated. A social worker in an HIV clinic in Mathare slum noted, "Coming here means wasting a day without income. Many come too late as a result."[173]

Recently MSF-Belgium undertook an analysis of all "defaulters," that is patients on ART who had stopped their treatment. Among those who were still alive, a lack of transport and food were the main reasons patients stopped treatment.[174] A research study in Nairobi's Kibera slum also found that lack of food was "the single most important barrier to ART."[175] As will be explained below, patients on ART have particular nutritional needs and suffer from side effects if they take the drugs with little or no food.

Physical access: Transport

Physical access to healthcare facilities is a major problem in Kenya, particularly in rural areas. In some areas of Kenya, around one-third of patients are more than five kilometers away from the nearest health facility.[176] If a child is found to be HIV-positive, regular travel is necessary. The child usually needs to get a CD4 cell count, as well as other tests. If the child is put on ART, the caregiver has to come back regularly with the child to get new drugs, and also for regular check-ups, treatment of opportunistic infections, and monitoring of drug side effects and resistances. When a child is not on antiretroviral treatment, he or she must get regular checkups and usually has to get supplies of antibiotics.

A study among caregivers and HIV-positive children using the nearest health facility found that 43 percent of respondents said they could not afford the amount of money the transport had cost them.  Twenty-one percent stated that they had delayed seeking treatment because of transport costs.[177]

While transport to the nearest health facility already poses challenges, HIV/AIDS patients are not always served at the nearest dispensary or health center. Children in particular are often referred to higher-level health facilities, such as district hospitals; this means caregivers and their children have to travel considerably farther. Adults in need of ART who have HIV positive children may have to organize separate transport to different health facilities for their and their children's treatment. A Ministry of Health official explained,

We think that children are dying of AIDS before they reach higher levels [of health facilities]. Dispensaries and health centers… do not test often, but we are hoping to move down to this level… In areas with the highest prevalence we have reached the lower levels already.[178]

A mother living in Bondo district, Nyanza province-the province with the highest prevalence in Kenya[179]-explained to us her problems in getting her now deceased six-year-old son, Andrew, to Bondo district hospital, 10 kilometers away:

He was on ART. He had to go to Bondo every month. I used to find it too difficult to go to Bondo. Sometimes I could not find the money for transport, so I went by foot with [Andrew]. I carried him on my back. I got up at 5am and arrived around 10 a.m. I left around 3 p.m. and was back by 7 [p.m.]. We did not miss a single day of treatment.[180]

This HIV-positive mother, like many others, underwent major physical exertion to ensure her child got treatment, despite her weakened physical condition.[181] Andrew died during the post-election crisis when he could not get medical care; his case is discussed below in Chapter V. Unlike this mother, other parents told us that transport costs kept them from taking children to health facilities. Also in Nyangoma, Bondo district, a grandmother told us that she did not have the money to travel repeatedly to the district hospital with her 20-month-old grandson, Daniel. Daniel is HIV-positive and was hospitalized at some point. After some time at home, his health deteriorated, so his grandmother took him back to Bondo hospital:

He took tuberculosis and CD4 tests in Bondo, and they showed that his CD4 cell count was down. I went to the Nyangoma health center [the local mission health center] with the X-ray but the doctor who had recommended the X-ray was no longer there, and no one could read X-rays, so I was told to go back to Bondo to get the X-ray results. But I have not been able to as it is expensive. [Daniel] coughs a lot and sometimes he has diarrhea.[182]

A woman in Mombasa explained to us why her nine-year-old daughter, who is living with the grandmother in Nyanza province, is not getting treatment:

Today, my daughter is no longer with me. She is staying in the village with my grandmother… but she is not on ART. The grandmother is old and can't take proper care of her. The hospital is too far away and there is no money for transport. The nearest hospital is in Migori District in Nyanza province. But the grandmother's village is Awendo village in Kisumu district. The grandmother has asked me to come to get the girl because she was a wound on her leg that is not getting better. But I can't take care of her now. I don't have a place to live myself.

The woman is a sex worker with no permanent home. At the time of the interview, she lived with her seven-month-old baby on another woman's verandah. She said about her baby,

My baby girl was getting septrin [antibiotic] but we have run out. I missed my last two appointments at the hospital because I didn't have money for transport to get there on the days I was supposed to go.[183]

A staff member at a center for child testing and treatment in Kisumu told us,

Two weeks ago, I had a child who had come from very far. The grandmother was with her and she begged us to enroll the child in our program. But we had to refuse, she lived too far away. There was no way that she could adhere to our programs because the grandmother did not have the means to pay for the transport, which was KSh400 [US$ 5.20] round trip.[184]

Problems of transport are more serious in rural areas where people live farther away from health centers. However, we also met a guardian in a slum area of Nairobi who said it was impossible to pay transport to the hospital to get a renewal prescription of antiretroviral drugs for her foster child, even though the boy was coughing and developing rashes.[185]

In some cases, there have been domestic conflicts because husbands do not want to pay for a child's transport to a health center. For example, a grandmother wanted to take her grandson-who was ill with tuberculosis and HIV-for treatment, but her husband refused.[186]

Lack of food

Lack of food is a major challenge for people needing antiretroviral treatment, as they have higher energy needs than healthy people. HIV-positive children need about 10 percent more food than HIV-negative children when they are showing no signs of HIV infection. Children who have full-blown AIDS and are experiencing weight loss need an energy increase of between 50 and 100 percent.[187] Antiretroviral drugs are also more efficacious when taken with the right types of food. Different types of drugs require different types of nutrition. If there is not enough food, or food with little nutritional value, a patient may suffer from severe side effects such as nausea, vomiting, diarrhea, or liver or kidney damage. This could also mean that the drugs will ultimately not work.[188]

Almost half of the Kenyan population does not have secure access to food resources to adequately meet their daily needs, and 31 percent of children are stunted due to malnutrition.[189] Many caregivers find it impossible to provide the children in their care with the food they need. As one community health worker in western Kenya explained,

Any person on ART is told they need to have nutritious food. During this period of the year [March to August], posho [cornmeal], maize, beans are very expensive to buy.  During this period, it is hard for grandmothers to get food, and the child is very hungry and tired. Sometimes the children only have a cup of tea in the morning, and by lunch time they are nauseous and dizzy because of the medicine. So, we see these grandmothers not wanting to give the kids the medicine. They are too old to try to cultivate [food] themselves, and the children are too young to do too much. Nutrition that is needed to go with the medication is a real struggle for many taking care of HIV-positive orphans.[190]

Food security is also a major problem in Nairobi's slums, where most inhabitants do not cultivate food.[191] A community health worker in Mathare slum told us,

Some guardians or parents do not want to take children for testing. They fear that if the children start taking ART, they will not have enough food to eat. When children take ART and do not have enough food, they will get other diseases. They get very weak. They get stomach pains and feel dizzy. There are children who are given ART but they do not take them because of this.[192]

Sometimes caregivers start children on ART, but when they have no food, they leave out one dose, or several.[193]

Many of Kenya's poor live on KSh50 (appr. US$0.65) a day, and may be trying to survive on as little as one meal per day. Under those conditions, health workers try to give realistic advice to caregivers about food.[194]

A particular problem arises when HIV-positive mothers are unable to pay for their baby's formula. As HIV can be transmitted through breastfeeding, HIV-positive mothers are counseled to use formula milk, if it is affordable, feasible, acceptable, sustainable and safe.[195] A mother of an 18-month-old baby, George, told us,

When I was pregnant I was told to come back for the birth, it would be safer. But I had no money, so I gave birth at home. Afterwards, I asked my neighbor to take the child to the hospital for testing so I could decide [what to do about] breastfeeding…. At [the clinic] they only provide formula for six weeks. I am struggling to get milk and porridge [cereal-based food for older babies].[196]

User fees and lack of information on health costs

Under the current health finance policy, patients pay only a nominal fee for medical care at lower-level public health facilities. This so-called "10/20 policy," which was instituted in 2004, requires patients to pay a fee of KSh10 (appr. US$0.13) at dispensaries and a fee of KSh20 (appr. US$0.26) at health centers.[197] Health services for children under the age of five should be free under the current policy.[198] Current health policies aim to reduce user fees for patients, including at higher-level health facilities, and aim to strengthen other health financing systems, such as exemptions, pre-payment schemes, and insurance.[199]

The government controls a little more than half of Kenya's health facilities; the rest are run by missions, NGOs, and other private organizations. About 40 percent of Kenya's health services are delivered by church-based health facilities, with Roman Catholic and Protestant churches managing roughly equal numbers of health facilities. While these church-based health services are not-for-profit, they charge higher user fees than many public facilities, since they have no state subsidies to rely upon.[200] User fees are significantly higher still at private, for-profit facilities.

Some government facilities also continue to charge higher fees than intended by policy. A study found that four in ten facilities charge some form of user fee for sick child services; 15 percent of those facilities were government-managed.[201] A waiver system for poor patients does exist but is not functional.[202]

In 2006, the government made antiretroviral treatment free of charge. This has been a major step forward in helping people get on treatment.[203] Medicines for malaria, and for all sexually transmitted diseases, are also free for everyone.

But medicines for many opportunistic diseases and pain relief have to be paid for. An HIV-positive woman caring for her five-year-old infected daughter in Turbo, Rift Valley province, told us,

Sometimes at the clinic, the treatment there is not so good. We are asked to pay small [amounts] for when there is an extra disease, for example. Asked for payment for this and that…. when these other diseases [malaria and other infections] rose up, we had to pay for the medicines.[204]

Patients are typically charged for CD4 cell count and other baseline tests that are done prior to starting antiretroviral treatment; these include a liver function test, a tuberculosis test, and a hemoglobin test. We were given contradictory information about the cost of these tests: the lowest figure, provided by staff at Kenyatta National Hospital (a public hospital) in Nairobi, was KSh100 (appr. US$1.30) for in-patients and outpatients.[205] However, several interviewees told us that patients had to pay significantly more for tests, up to KSh1,600 (appr. US$20).[206]

As a result of the complex and sometimes inconsistent user fee policy, patients often assume that they have to pay for health services, even when the services are free or cost relatively little. Many people are also unaware that antiretroviral drugs are now available for free.[207] The misperception that they will have to pay can keep people from seeking health services.

[62] Iliffe, The African AIDS Epidemic, p. 29.

[63] Ruth J. Prince and Paul Wenzel Geissler, "The Land is Dying":Contingency, Creativity and Conflict in Western Kenya, (Oxford/New York: Berghahn, 2009) (forthcoming), pp. 263-307, 334-336.

[64] "Catholic church says 'it's not right' to use condoms to fight AIDS," Press Esc, July 1, 2007, http://pressesc.com/01183307636_catholic_church (accessed September 1, 2008).

[65] Prince and Geissler, "The Land is Dying," pp. 336-339; "Kenya church makes AIDS apology," BBC News Online, March 16, 2006, http://news.bbc.co.uk/1/hi/world/africa/4814022.stm (accessed September 20, 2007).

[66] Ruth J. Prince, "The Legio Maria Church in Western Kenya: Healing with the Holy Spirit and the Rejection of Medicines," dissertation, Department of Anthropology, University College London, 1999 (unpublished).

[67]Human Rights Watch interview with two community health workers, GROOTS Mothers Development Center, Mathare slum, Nairobi, August 7, 2007; Human Rights Watch interview with CHAK representative, Nairobi, August 20, 2008. 

[68] J. Kusimba et al., "Traditional healers and the management of sexually transmitted diseases in Nairobi, Kenya," International Journal of STD&AIDS, vol. 14, 2003, pp. 197-201. On the role of herbal medicines and "chira" in Luo society, see Prince and Geissler, "The Land is Dying," pp. 237-244.

[69] Joseph Amon, "Dangerous Medicines: Unproven AIDS cures and counterfeit antiretroviral drugs," Globalization and Health, vol. 4, http://www.globalizationandhealth.com/content/4/1/5 (accessed October 6, 2008); "Kenya: The lure of dodgy herbal 'cures' for HIV," PlusNews, August 21, 2008, http://www.plusnews.org/Report.aspx?ReportId=79915 (accessed October 27, 2008).

[70] M. Hamra, "The relationship between expressed HIV/AIDS-related stigma and beliefs and knowledge about care and support of people living with AIDS in families caring for HIV-infected children in Kenya," AIDS Care, vol. 17, no. 7, 2005, pp. 911-922; Human Rights Watch interview with paralegal, Shibuye Community Health Workers, Kakamega district, Western province, August 2, 2007.

[71] Human Rights Watch interview with Protus Lumiti, manager, Nyumbani orphanage, Nairobi, August 7, 2007.

[72] Human Rights Watch interview with counselor at the Siaya Peasant Community Outreach Project (SPECOOP) VCT, Unguja, Siaya district, August 3, 2007.

[73] Human Rights Watch interview with HIV-positive widow, Kanyumba, Siaya district, Nyanza province, August 4, 2007.

[74] Human Rights Watch interview with nurse, Ambira sub-district hospital, Siaya district, Nyanza province, August 3, 2007.

[75] Human Rights Watch interview with guardian of Sarah, age 10, Mathare slum, Nairobi, August 14, 2008.

[76] Human Rights Watch interview with community health worker, Shibuye Community Health Workers, Shinyalu division, Kakamega district, Western province, August 2, 2007. It is also sometimes believed that ART makes the skin look like plastic. Human Rights Watch interview with counselor at Tuungane Youth Center, Kisumu, August 1, 2007.

[77] Human Rights Watch interview with the baby's mother, Kisumu, August 15, 2008.

[78] Stigmatization is a process related to the perception that there has been a violation of a set of shared attitudes, beliefs or values. One can distinguish between felt stigma, which refers to fears of discrimination, and enacted stigma, that refers to a real experience of discrimination. Lisanne Brown, Kate Macintyre, and Lea Trujillo, "Interventions to reduce HIV/AIDS Stigma: What have we learned?"AIDS Education and Prevention, vol. 15, no. 1, 2003, pp. 49-69. A somewhat similar definition is provided in Kenya AIDS NGOs Consortium, "Training Guide on Stigma and Discrimination in Relation to HIV&AIDS," 2007, pp. 7-8.

[79] See chapter IV, section "Economic Barriers to Testing and Treatment," on transport as an economic barrier.

[80] Human Rights Watch interview with counselor at Tuungane Youth Center, Kisumu, August 1, 2007.

[81] Human Rights Watch interview with counselor at the Siaya Peasant Community Outreach Project (SPECOOP) VCT, Unguja, Siaya district, Nyanza province, August 3, 2007.

[82] Human Rights Watch interview with community health worker, GROOTS Mothers Development Center, Mathare slum, Nairobi, August 7, 2007.

[83] Human Rights Watch interviews with HIV-positive, divorced women, Mathare slum, Nairobi, August 7, 2007, and August 14, 2008; Human Rights Watch interview with social worker, AMPATH, Burnt Forest, Uasin Gishu district, August 21, 2008.  

[84] Human Rights Watch interview with social worker, AMPATH, Burnt Forest, Uasin Gishu district, August 21, 2008.

[85] Human Rights Watch interview with counselor, Woman Fighting AIDS in Kenya (WOFAK), Mombasa, August 15, 2007.

[86] Human Rights Watch interviews with representative of Woman Fighting AIDS in Kenya (WOFAK), Mombasa, August 14, 2007; social worker, Kibera slum, Nairobi, August 10, 2007; and social worker, Mathare slum, Nairobi, August 14, 2008. For discussion of a similar situation in Zambia see Human Rights Watch, Hidden in the Mealie Meal: Gender-Based Abuses and Women's HIV Treatment in Zambia, vol. 19, no. 18(A), December 2007, http://hrw.org/reports/2007/zambia1207/.

[87]Human Rights Watch interview with representative of Woman Fighting AIDS in Kenya (WOFAK), Mombasa, August 15, 2007.

[88] Ibid.

[89] Human Rights Watch interview with caregiver, GROOTS Mothers Development Center, Mathare slum, Nairobi, August 10, 2007.

[90] According to the WHO, breastfeeding by an infected mother increases the risk of transmission by 5–20 percent to a total of 20–45 percent.WHO, Antiretroviral Drugs for Treating Pregnant Women And Preventing HIV Infection In Infants: Towards Universal Access: Recommendations for a public health approach (Geneva: WHO, 2006), www.who.int/hiv/pub/guidelines/pmtctguidelines3.pdf (accessed April 10, 2008), p. 5.

[91] Human Rights Watch interview with community health worker, Nyangoma, Bondo district, Nyanza province, August 18, 2008. We learned of similar cases in Mathare. Human Rights Watch interview with social worker, Mathare slum, Nairobi, August 14, 2008.

[92] J. Kamau, P. Odundo, and J. Korir, "Measuring the degree of S&D in Kenya: An Index for HIV/AIDS facilities and providers," USAID, July 2007, http://www.kit.nl/smartsite.shtml?ch=fab&id=24144 (accessed October 15, 2007).

[93] Ibid., pp. 10, 30.

[94] Ibid., pp.7-10, 45-53.

[95] Human Rights Watch interviews with Prof. Dorothy Ngacha, Kenyatta National Hospital. Department of Pediatrics, and Gerald Macharia, Country Director of the Clinton Foundation, Nairobi, August 20, 2008. On lack of training of health workers, see also Chapter VI.

[96] Human Rights Watch interview with HIV-positive woman, Mombasa, August 16, 2007.

[97] Human Rights Watch group interview with HIV-positive men and women, members of Organization for Positive Living Kamukunji (OPLAK), Nairobi, August 17, 2007.

[98] Ibid.

[99] Human Rights Watch interviews with James Kamau, KETAM, Nairobi, August 12; and nurse in HIV clinic, Mathare slum, Nairobi, August 14, 2008.

[100] Kamau, Odundo, and Korir, "Measuring the degree of S&D in Kenya," p. 10.

[101] Human Rights Watch interview with counselor at Tuungane Youth Center, Kisumu, August 1, 2007; Human Rights Watch interviews with HIV-positive orphans at Nyumbani orphanage, August 11, 2007.

[102] Human Rights Watch interview with Carl, age 16, Nairobi, August 11, 2007.

[103] Human Rights Watch interview with nurse, HIV/AIDS clinic, Mathare slum, Nairobi, August 14, 2008.

[104] Human Rights Watch interview with mother of Charlotte, age nine, GROOTS Mothers Development Center, Mathare slum, Nairobi, August 7, 2007.

[105] Human Rights Watch interview with managing director of Nyumbani orphanage, Nairobi, August 7, 2007.

[106] Human Rights Watch interview with mother of two HIV-positive children, ages four and eight, Nyangoma, Bondo district, August 18, 2008.

[107] Human Rights Watch interview with guardian of Milicend, age eight, Mathare slum, Nairobi, August 14, 2008.

[108]CRC, art. 27. See below, Chapter VII, The Legal Framework.

[109] UNICEF, Africa's Orphaned and Vulnerable Generations. Children Affected By AIDS (New York: UNICEF, 2006),   http://www.unicef.org/publications/files/Africas_Orphaned_and_Vulnerable_Generations_Children_Affected_by_AIDS.pdf (accessed September 29, 2008).

[110] Law of Succession Act, Chapter 160 of the Laws of Kenya, July 1, 1981, http://www.kenyalawreports.or.ke/kenyalaw/klr_app/frames.php (accessed June 16, 2008).

[111] Human Rights Watch, Double Standards: Women's Property Rights Violations in Kenya, vol. 15, no .5(A), March 2003, http://www.hrw.org/reports/2003/kenya0303/kenya0303.pdf.

[112] Human Rights Watch interview with mother of Anna, age six, Kibera slum, Nairobi, August 10, 2007.

[113] Human Rights Watch interview with widows, Mathare slum, Nairobi, August 7 and 10, 2007; Human Rights Watch interview with representatives of NGO supporting widows, Kanyumba center, Siaya district, August 4, 2007.

[114] Human Rights Watch interview with representative of Shibuye community health workers group, Kakamega district, August 2, 2007. The group is affiliated to the national NGO GROOTS.  

[115] Ibid.; Human Rights Watch interview with GROOTS representatives, Nairobi, August 7, 2007.

[116] Prince and Geissler, "The Land is Dying"; Erick O. Nyambehda, Simiyu Wandibba, Jens Aagaard-Hansen, "Changing patterns of orphan care due to the HIV epidemic in western Kenya," Social Science & Medicine, No. 57, 2003, pp. 301-311.

[117] Human Rights Watch interview with widow, Nyangoma, Bondo district, Nyanza province, August 18, 2008. Human Rights Watch, Double Standards, pp. 12-13.

[118] WHO/UNAIDS/UNICEF, "Kenya, Epidemiological Fact sheet on HIV and AIDS, 2008 Update," July 2008, http://www.who.int/globalatlas/predefinedReports/EFS2008/full/EFS2008_KE.pdf (accessed September 4, 2008). 

[119] Steven Lewis Foundation, "Grandmothers and children affected by AIDS in sub-Saharan Africa," Fact Sheet, 2008, http://www.stephenlewisfoundation.org/documents/Grannytripfactsheet-REVISEDAPRIL2008.doc (accessed September 4, 2008).

[120] The Children's Act, No.8 of 2001, Laws of Kenya, art. 27 (1).

[121] Erick O. Nyambedha, Simuyu Wandibba and Jens Aargaard-Hansen, "'Retirement Lost' – the new role of the elderly as caretakers for orphans in western Kenya," Journal of Cross-Cultural Gerontology, no. 18, 2003, pp. 33-52.

[122] Nyambehda, Wandibba, and Aagaard-Hansen, "Changing patterns of orphan care due to the HIV epidemic in western Kenya," Social Science & Medicine.

[123] Human Rights Watch, Suffering in Silence: The Links Between Human Rights Abuses and HIV Transmission to Girls in Zambia (New York: Human Rights Watch, 2002), http://www.hrw.org/reports/2003/zambia/zambia1202.pdf; UNICEF, Africa's Orphaned and Vulnerable Generations.

[124] Human Rights Watch, Letting Them Fail: Government Neglect and the Rights to Education for Children Affected by AIDS, vol. 17, no. 13 (A), October 2005, http://hrw.org/reports/2005/africa1005/index.htm.

[125] UNICEF, Enhanced Protection for Children affected by AIDS (New York: UNICEF, 2007) http://www.unicef.org/publications/files/Enhanced_Protection_for_Children_Affected_by_AIDS.pdf (accessed September 29, 2008), p. 18.

[126] Erick O. Nyambehda, "Vulnerability to HIV infection among Luo female adolescent orphans in Western Kenya," AfricanJournal of AIDS Research, vol. 6, no. 3, 2007, pp. 287-295; Population Council/Constella Futures, "Situation Analysis of the Sexual and Reproductive Health and HIV Risks and Prevention Needs of Older Orphaned and Vulnerable Children in Nyanza Province, Kenya," March 2007, http://www.popcouncil.org/pdfs/Kenya_OVC_report.pdf (accessed November 10, 2008).

[127] Human Rights Watch interview with orphans, Stara center, Kibera slum, Nairobi, August 10, 2007.

[128] Human Rights Watch interview with James, age 14, St. Vincent Rescue Home, Kibera slum, Nairobi, August 10, 2007.

[129] Human Rights Watch interview with Frederic, age 13, Stara center, Kibera slum, Nairobi, August 10, 2007.

[130] Traditionally, relations between grandmothers and grandchildren were very strong. R.J. Prince and P.W. Geissler, "Shared Lives, Exploring Practices of Amity Between Grandmothers and Grandchildren,"Africa, 2004, vol. 74(1), pp. 95-120.

[131] Erick O. Nyambedha, "Children and HIV/AIDS: Questioning Vulnerability in Western Kenya," PhD dissertation, Institute of Anthropology, University of Copenhagen, June 2006 (unpublished).

[132] Law of Succession Act, Chapter 160 of the Laws of Kenya, July 1, 1981, http://www.kenyalawreports.or.ke/kenyalaw/klr_app/frames.php (accessed June 16, 2008).

[133] Law of Succession, arts. 38, 41, and Fifth Schedule, arts.7 and 8.

[134] See also Human Rights Watch, In the Shadow of Death; Open Society Institute, "Ensuring Justice for Vulnerable Communities in Kenya. A Review of HIV and AIDS-related Legal Services," 2007, http://www.soros.org/initiatives/health/focus/law/articles_publications/publications/kenya_20070416/kenya_20070416.pdf (accessed June 13, 2008).

[135] Human Rights Watch, Letting Them Fail.

[136]Human Rights Watch interview with counselor, Nyumbani orphanage, Nairobi, August 7, 2007.

[137] Human Rights Watch interview with Protus Lumiti, August 7, 2007.

[138] Human Rights Watch interview with representatives of CLAN, Nairobi, August 9, 2007. The case occurred in 2006.

[139] Human Rights Watch interview with aunt of Carolyn, age eight, Kisumu, August 16, 2008.

[140] Human Rights Watch interview with representatives of CLAN, Nairobi, August 9, 2007.

[141] Human Rights Watch interview with aunt of Stephen, Nyangoma, Bondo district, Nyanza province, August 18, 2008.

[142] Human Rights Watch interview with representative of Lea Toto community project, Kibera slum, Nairobi, August 8, 2007.

[143] Human Rights Watch interview with HIV support group leader, Mathare slum, Nairobi, August 10, 2007. A similar statement was made to Human Rights Watch by a representative of Lea Toto community project, Kibera slum, Nairobi, August 8, 2007.

[144] Human Rights Watch interview with Protus Lumiti, August 7, 2007.

[145] Human Rights Watch interview with representative of Pandipieri, Kisumu, August 3, 2007.

[146] Human Rights Watch interview with Christine, age 17, Nyumbani orphanage, August 11, 2007.

[147] Human Rights Watch interview with Leah, age 15, Kisumu, August 16, 2008.

[148] Human Rights Watch interview with representative of Pandipieri, Kisumu, August 3, 2007.

[149] Human Rights Watch interview with community health worker and HIV support group leader, GROOTS Mothers Development Center, Mathare slum, Nairobi, August 10, 2007.

[150] Human Rights Watch interview with community health worker, Shibuye community health workers group, Kakamega District, Shinyalu Division, Western province, August 2, 2007.

[151] Human Rights Watch interview with representative of GROOTS Mothers Development Center, Mathare slum, Nairobi, August 10, 2007.

[152] Human Rights Watch interviews with representative of Lea Toto community program, Kibera slum, Nairobi, August 8,; and  HIV-positive caregiver, GROOTS Mothers Development Center, Mathare slum, Nairobi, August 10, 2007.

[153] Human Rights Watch interview with mother of Elaine, age 12, Eldoret ASK Showgrounds IDP camp, August 19, 2008.

[154] American Academy of Pediatrics, "Disclosure of Illness Status to Children and Adolescents With HIV Infection," Pediatrics, vol. 103, no. 1, January 1999, http://aappolicy.aappublications.org/cgi/reprint/pediatrics;103/1/164.pdf (accessed September 4, 2008), p. 165.

[155] Rangsima Lolekha, "A Pediatric HIV Disclosure Model: Lessons Learned from Thailand," 2008, http://www.kaisernetwork.org/health_cast/uploaded_files/I4_3082_Lolekha.pdf (accessed September 4, 2008).

[156] American Academy of Pediatrics, "Disclosure of Illness Status to Children and Adolescents With HIV Infection," pp. 164-166.

[157] See Chapter VII, The Legal Framework.

[158]American Academy of Pediatrics, "Disclosure of Illness Status to Children and Adolescents With HIV Infection."

[159] Human Rights Watch interview with Winstone Nyandiko, associate program manager, AMPATH, Eldoret, August 19, 2008.

[160] Human Rights Watch, In the Shadow of Death.

[161] International HIV/AIDS Alliance and Family Health International, "Child Headed Households," http://www.ovcsupport.net/sw3256.asp (accessed September 5, 2008).

[162] Human Rights Watch interview with representative of Pandipieri, Kisumu, August 3, 2007.

[163] Human Rights Watch interview with social worker, Mathare slum, Nairobi, August 14, 2008.

[164] "Step up sensitization on the plight of street children, urges VP," Kenya Broadcasting Corporation, October 1, 2007, http://www.kbc.co.ke/story.asp?ID=45397 (accessed September 5, 2008).

[165] "Kenya: HIV services are scarce on the street," PlusNews, July 29, 2008, http://www.plusnews.org/Report.aspx?ReportId=79505 (accessed September 5, 2008).

[166] Human Rights Watch interview with representatives of WEMA, Mombasa, August 13, 2007; Human Rights Watch interview with representative of Pandipieri, Kisumu, August 3, 2007.

[167] Human Rights Watch interview with Protus Lumiti, August 7, 2007.

[168] Human Rights Watch interview with representatives of WEMA, Mombasa, August 13, 2007.

[169] Human Rights Watch interviews with social worker at Solwodi, NGO working with sex workers, Mombasa, August 14; and  representatives of WEMA, Mombasa, August 13, 2007. Past abuses were documented by Human Rights Watch in Juvenile Injustice: Police Abuse and Detention of Street Children in Kenya (New York: Human Rights Watch, 1997), http://www.hrw.org/reports/1997/kenya/.

[170] UNDP, "Kenya, The Human Development Index," http://hdrstats.undp.org/countries/country_fact_sheets/cty_fs_KEN.html (accessed September 8, 2008).

[171] United Kingdom Department for International Development (DFID), "Key Facts: Kenya," http://www.dfid.gov.uk/countries/africa/Kenya-facts.asp (accessed October 17, 2008).

[172] USAID, "Horn of Africa – Complex Emergency," June 20, 2008, http://www.reliefweb.int/rw/RWFiles2008.nsf/FilesByRWDocUnidFilename/LRON-7FYHCE-full_report.pdf/$File/full_report.pdf (accessed July 3, 2008).

[173] Human Rights Watch interview with social worker, Mathare slum, Nairobi, August 14, 2008.

[174] Human Rights Watch interview with representatives of MSF-Belgium, Nairobi, August 13, 2008.

[175] O. Muhenje et al., "Misperceptions surrounding the use of antiretroviral drugs in an urban slum, Nairobi, Kenya," International Conference on AIDS, vol. 15, 2004.

[176] A. M. Noor et al., "Defining equity in physical access to clinical services using geographical information systems as part of malaria planning and monitoring in Kenya," Tropical Medicine and International Health, vol. 8, no. 10, October 2003, pp. 917-926.

[177] Horizons/Population Council, "'If You Build It, Will They Come?' Kenya Healthy Start Pediatric HIV Study: A Diagnostic Study to Investigating Barriers to HIV Treatment and Care Among Children," June 2008, http://www.popcouncil.org/pdfs/horizons/Kenya_PediatricHIVTreatment.pdf (accessed October 10, 2008), pp. 33-34. 

[178] Human Rights Watch interview with Dr. Lyndon Marani, ART program manager, NASCOP, Ministry of Health, Nairobi, August 13, 2008.

[179] Nyanza province has prevalence of 15.3 percent. Ministry of Health, "Kenya AIDS Indicator Survey, preliminary report," p. 14.

[180] Human Rights Watch interview with mother of Andrew, who died age six in March 2008, Nyangoma, Bondo district, Nyanza province, August 18, 2008.

[181] Ibid.

[182] Human Rights Watch interview with grandmother of Daniel, age one, Nyangoma, Bondo district, August 17, 2008.

[183] Human Rights Watch interview with HIV-positive mother, Mombasa, August 16, 2007.

[184] Human Rights Watch interview with counselor, Tuungane Youth Center, Kisumu, August 1, 2007.

[185] Human Rights Watch interview with guardian of seven orphans, Eastleigh, Nairobi, August 11, 2007.

[186] Human Rights Watch interview with community AIDS worker and paralegal, Shibuye community health workers group, Kakamega District, Shinyalu Division, Western province, August 2, 2007.

[187] Ministry of Health, "Kenyan National Guidelines on Nutrition and HIV/AIDS," April 2006, http://www.health.go.ke/ (accessed July 3, 2008), p. 46.

[188] HIV infection increases nutrition requirements. A balanced diet should include high-energy foods, rich in carbohydrates and sugar. Low carbohydrate foods should be prepared with fat and oils. Furthermore, HIV-positive children have increased protein requirements, such as milk products, meat, beans, lentils, and groundnuts. For example, a balanced diet for one day could consist of 6 servings of whole maize meal, 1 serving dried beans, 1 ¼ cups of cooked vegetables without water, 1 serving meat or fillet, 5 teaspoons of fat, 1 cup of milk, 2 oranges. Ibid., pp. 9-18, 49-50.

[189] Ibid., p. 1.

[190] Human Rights Watch interview with community health worker, Shibuye community health workers group, Kakamega District, Shinyalu Division, Western province, August 2, 2007.

[191] Human Rights Watch group interview with community workers at GROOTS Mothers Development Center, Nairobi, August 14, 2008.

[192] Human Rights Watch interview with Joyce, community health worker, GROOTS Mothers Development Center, Mathare slum, Nairobi, August 7, 2007.

[193] Human Rights Watch interview with grandmother of Albert, age three, living in IDP camp, Mathare slum, Nairobi, August 13, 2008.

[194]Human Rights Watch interview with nurse in HIV clinic, Mathare slum, Nairobi, August 14, 2008.

[195]However, UNICEF and other UN agencies recommend exclusive breastfeeding for HIV-infected women for the first six months of life if replacement feeding is not acceptable, feasible, affordable, sustainable, and safe. UNICEF, "UNICEF policy on Infant feeding and HIV," undated, http://www.unicef.org/media/media_41250.html (accessed October 28, 2008).

[196] Human Rights Watch interview with mother of George, age 18 months, Mathare slum, Nairobi, August 13, 2008.

[197] National Coordinating Agency for Population and Development (NCAPD), Ministry of Health (MOH), Central Bureau of Statistics (CBS), ORC Macro, Kenya Service Provision Assessment Survey 2004, Nairobi, Kenya  2005, http://www.measuredhs.com/pubs/pub_details.cfm?ID=561&srchTp=advanced (accessed July 4, 2008), p. 24; Rob Yates, "DFID Health Resource Center, International Experiences in Removing User Fees for Health Services – Implications for Mozambique," June 2006, http://www.dfidhealthrc.org/publications/health_sector_financing/06Yates01.pdf (accessed September 9, 2008), pp. 4-8.

[198] Kenya Service Provision Assessment Survey 2004, p. 77.

[199] Ministry of Health,"The Second National Health Sector Strategic Plan of Kenya (NHSSP II 2005-10)," May 2005, http://www.health.go.ke/hpdcon.htm (accessed October 28, 2008).

[200] Human Rights Watch interview with Peter Ngare, Christian Health Association in Kenya (CHAK), Nairobi, August 20, 2008.

[201] Kenya Service Provision Assessment Survey 2004, p. 77.

[202] Center for Reproductive Rights and Federation of Women Lawyers Kenya, Failure to Deliver. Violations of Women's Human Rights in Kenyan Health Facilities (New York/Nairobi: Center for Reproductive Rights and Federation of Women Lawyers Kenya, 2007). For current efforts to reform health financing, see GTZ, "Strategy for German-Kenyan Cooperation in the priority area health in the sub-sectors Reproductive and Sexual Health and Health Financing," November 2003, http://www.gtz.de/de/dokumente/en-strategy-health-kenya.pdf (accessed July 4, 2008).

[203] "Kenya to provide free AIDS drugs," BBC.com, June 2, 2006, http://news.bbc.co.uk/2/hi/africa/5040240.stm (accessed July 4, 2008).

[204] Human Rights Watch interview with mother of Liliane, age five, Turbo, Uasin Gishu district, Rift Valley province, August 20, 2008.

[205] Human Rights Watch interview by Kenyan journalist with doctors at Kenyatta National Hospital, Nairobi, September 2008.

[206] Human Rights Watch interview with health worker, Kisumu, August 15, 2008.

[207]Human Rights Watch interview with nurse in HIV clinic, Mathare slum, Nairobi, August 14, 2008.