December 16, 2008

VI. First Adults, Then Children? Government Health and Protection Policies

Pediatric HIV Policies and Practice in Kenya

HIV policies have failed to address the special needs of children. Over the past two years, donors and the government have started to initiate measures aimed at improving access to treatment for children, but far more needs to be done.

While the need for PMTCT as a prevention mechanism has been recognized for many years, pediatric treatment is often approached as a secondary concern. A medical doctor noted, "Pediatric programs started about one year ago [2006]. Until then, children were ignored. Some thought that children should not get on ARV."[246]

Until recently, there was an assumption that children on ART would still die before adulthood. A pediatrician specializing in HIV explained that many people asked, "Is it worth it? Does this only add five years more [to a child's life]?"[247] When the Clinton Foundation came to Kenya in 2005, there were only about 1,500 children on treatment, and only in donor-funded facilities. There were few discussions about the situation of children within the Health Ministry's National AIDS and STD Control Programme (NASCOP). As the local head of the Clinton Foundation put it, this lack of attention represented a "huge gap" in the country's HIV/AIDS policy.[248]

The current Kenya National HIV/AIDS Strategic Plan still does not mention the importance of ensuring that children get access to treatment. It does mention children in the context of PMTCT; HIV/AIDS and sex education when entering adolescence; and protection of orphans and other vulnerable children.

Despite this gap, change is finally underway. The government has acknowledged its failure to do enough for pediatric treatment. In July 2007 the then director of medical services in the Ministry of Health, Dr. Nyikal, recognized that more than 90 percent of children living with HIV cannot access antiretroviral drugs because of difficulties in diagnosis, unavailability of pediatric formulations, and other issues.[249] Recent policy measures to improve pediatric testing and treatment include: routine offers of testing for infants of HIV-positive mothers or mothers whose HIV status is unknown; making cotrimoxazole more widely available; scaling up pediatric treatment at lower-level health facilities; and routinely treating all HIV-positive infants with ART. Still, progress regarding pediatric HIV lags behind. An official in the Ministry of Health observed self-critically, "We have met every single target we have set ourselves for adults, despite the election violence. But on children we don't reach the targets."[250]

In that regard, it is indicative that the country's major AIDS survey, the Kenya AIDS Indicator Survey, published in July 2008, excludes data about children under age 15 entirely.[251]

The need to reach more pregnant women for PMTCT programs

In the past few years there has been a significant scale-up of PMTCT programs in Kenya, as part of the National HIV/AIDS Strategic Plan.[252] In 2007 about 800,000 pregnant women were tested, of a total of about 1.2 million pregnant women. About 57,000 pregnant women tested HIV-positive.[253]

But many women are still not reached. An estimated 40 percent of HIV-positive women do not participate in PMTCT programs.[254] Those who give birth at home might not participate in PMTCT programs; if they do, there is little control over whether they take the Nevirapine prescribed to them.[255] Some women might not participate in PMTCT programs due to stigma and fear of disclosure.[256]

In many cases, there is no follow up from PMTCT programs even when a woman has been found to be HIV-positive. A medical doctor working in an HIV program in Mombasa remarked that there is sometimes no connection between antenatal and postnatal care: "Women are coming in sometimes for services after their children are born, but at that point, they may not get the child tested."[257]

Such lack of monitoring leaves many HIV-positive children with no medical help. Some donor agencies have recognized this and started what is called "PMTCT Plus" programs, which offer ART to the HIV-positive mother, the child, and other family members.[258] Most health facilities do not use such an integrated approach yet. However, a first step has been made in linking PMTCT and infant testing.

The need to improve pediatric testing policies

Infant testing-promising policies that need to be implemented

As AIDS kills 50 percent of infected children before their second birthday, infant testing is a vital first step toward treatment. The Kenyan government's new infant testing policies are promising, but still need to be implemented in large parts of the country.

Up until 2006, the large majority of health facilities did not test infants and told parents to wait until the child reached 18 months. A study carried out in 2005 found that none of the 58 health facilities visited had copies of the national guidelines for HIV testing in clinical settings or in-house guidelines on testing children.[259]

The only reliable method to carry out an HIV test on a child under 18 months old is by PCR, a complicated and costly method.[260] There are only a few PCR testing stations in Kenya. In the past two years, a network for the collection and referral of blood samples has been established, allowing any health facility to use the PCR stations.[261] The Clinton Foundation has funded PCR machines as well as the logistical support needed to provide dry blood spot testing (small samples of blood are collected, spotted and dried on paper, and sent to laboratories in Kenya), including safe and speedy transport of the specimens.[262] However, sometimes PCR test results take longer than expected to come back to healthcare providers, and patients come in vain to their health center to ask for the result.[263] Staff also sometimes lack training to collect dry blood spot specimens for PCR testing.[264]

In a policy circular in mid 2007, the Ministry of Health took the important step of requiring that routine testing be offered for infants who are born to HIV-positive mothers or to mothers whose HIV status was unknown.[265] All such infants are to be tested at 6 weeks, 12 months, and 18 months, if the mother (or other caregiver) consents. This policy is an important step toward saving children's lives.[266] In the words of Dr. Nyikal, now permanent secretary in the Ministry of Health, "We need to link child treatment to PMTCT, and this is the best way to recruit children. The loop has to be made. It has not been made enough."[267]

While this policy is a step in the right direction, the practice on the ground is changing only slowly. According to an official in the Ministry of Health, about 25 percent of facilities currently offer infant testing.[268] During a Human Rights Watch visit to a dispensary in Bondo district, Nyanza province, medical staff explained that the clinic did not routinely offer HIV testing for infants at six weeks, and seemed unaware of the Ministry's policy.[269]

Another challenge is the issue of parental consent. For a mother, the HIV test on her infant amounts to disclosure of her own status. Counselors and medical staff have the important task of ensuring that proper consent is being sought and avoiding accidental disclosure of a woman's HIV status to her husband or other relatives.[270] Community health workers and other staff need to explain to mothers the implications of refusing a test for their child. Yet they have to do so without undue pressure, rather aiming to convince the mother in order to engage her in the process of providing health care for her child.

Insufficient attention to testing older children and adolescents

As explained Chapter IV, older children are taken less often than younger children for testing as caregivers are afraid of the child's questions, and assume children are HIV-negative unless they show signs of illness. This situation is further complicated by the current guidelines on voluntary testing and counseling, which stipulate that anyone under the age of 18 needs parental consent for testing. Adolescents over the age of 15 can only be tested without parental consent under certain circumstances. According to the government's guidelines,

Young people under 18 who are married, pregnant, parents, engaged in behavior that puts them at risk or are child sex workers should be considered "mature minors" who can give consent for VCT, although the counselor should make an independent assessment of the minor's maturity to receive VCT services.[271]

The expression "mature minor" is not defined further in the guidelines, but many health facilities have interpreted the guidelines to mean that testing children over the age of 15 without their parents' consent should be an exception.[272] Children under the age of 15 are even less likely to get a test by themselves, as the guidelines recommend that "testing of minors under 18 who are not mature minors, especially those under 15, should be done with the knowledge and participation of their parents or guardians."[273] A VCT counselor in a rural area commented on the guidelines,

This VCT policy is a challenge to us…. We have a situation where it is quite possible that the child is HIV-positive because he or she is showing signs. But the caregiver is not there yet, not ready for the child to be tested, so how to help this child? We continue counseling the caregiver but it doesn't always work or the caregiver doesn't come back.  This leaves me in a difficult place, this is why these guidelines are problematic.[274]

The current regulations discourage testing of children and adolescents who do not wish to speak to their parents about the test. This may be due to lack of trust between the child and the caregiver, or taboos around sexuality. Human Rights Watch takes the position that all such children, without restriction, should be able to exercise their right to information about their own health and be able to get tested for HIV at least from age 15 onwards, and possibly earlier (from age 12), depending on their cognitive and emotional maturity.[275]

Tuungane Center in Kisumu provides prevention, HIV testing, and treatment for youth under one roof. Most youth come to the center by themselves, without adult supervision.[276] Over 3,000 young people between the ages of 13 and 21 have tested there.[277] There are similar services in other major urban areas but nowhere else.  Many health services are often not geared toward the situation of adolescents, and adolescents avoid going to general health centers.[278] Counselors in VCT centers are not always equipped to respond to the situation of adolescents adequately. A pediatrician described the situation of adolescents as "no man's land."[279]

The need to improve treatment of HIV-positive children

Treatment with antibiotics-a life saver that must be universally available

Progress has been made in rolling out treatment with the antibiotic cotrimoxazole, but the drug is still not reaching all children living with HIV. Until recently, the importance of cotrimoxazole prophylaxis for HIV-positive children has been underestimated. It was only in 2006 that the World Health Organization published guidelines on this issue, recommending that all children younger than one year receive cotrimoxazole prophylaxis, regardless of symptoms or the CD4 percentage. The WHO also recommended cotrimoxazole as prophylaxis for HIV-positive children between ages one and five under certain conditions.[280] The Kenyan government introduced a similar policy shortly after, and during 2007 devoted great efforts to make cotrimoxazole widely available.[281] Between April 2006 and October 2007, availability of cotrimoxazole in Kenya rose from 59 percent to 100 percent in the public sector, and from 81 to 90 percent among mission health facilities.[282]

However, the fact that cotrimoxazole is widely available in health facilities does not mean that it reaches all children in need. There are no nationwide figures on cotrimoxazole coverage among HIV-positive children at present; a study was underway in September 2008.[283] According to a UN report, during 2007 only 6 percent of exposed infants were put on cotrimoxazole prophylaxis within two months of birth.[284] One of the reasons for this is probably that the infant testing policy has not been widely implemented. This statistic shows the need for integrating HIV testing and treatment into regular pediatric care.

The need for better availability and formulation of pediatric ART

While adult formulations of ART are widely available and easy to use, there are several problems with pediatric formulations. These formulations are not always widely available. Some formulations for children are also difficult to use in resource-low settings.

Adult and pediatric antiretroviral medicines in Kenya are mostly imported from India[285] and procured through the Kenya MedicalSupplies Agency, the central supply agency for medicines. Mission for Essential Drugs and Supplies (MEDS) is another supply agency that provides medicines to mission health structures. In Kenya, the Clinton Foundation has negotiated prices with drug companies and currently procures all pediatric drugs in Kenya.[286] Since 2006, pediatric syrups and pediatric single pills-which have to be taken in a combination of three drugs-are in principle available in Kenya.[287]

However some health facilities lack the syrups for small children.[288] Others lack pediatric tablets for older children, and simply break up adult tablets. For example, a Roman Catholic health facility in Nyangoma, Bondo district, just started treating children in 2008; health workers there break up adult tablets for children over the age of 10.[289] Other health facilities break up adult tablets for children as young as eight.[290] This can lead to incorrect dosage as the medicine is not always equally distributed in the tablet.[291]

Both syrups and single pills are impractical. Liquid formulations must be stored in a cool place and are heavy.[292] It has therefore been recommended that research be carried out to develop pediatric tablets for dispersal or sprinkle formulations, which can be added to food for small children.[293]

Fixed-dose combinations for children have been developed only recently, as the pharmaceutical industry did not consider this a lucrative market. They are gradually being introduced in Kenya.[294] A child has to take only two such pills a day, which makes treatment adherence much easier.

The need to make ART for children available at all lower-level health facilities

When ART for adults was rolled out to lower-level health facilities, the same did not happen for children. Health workers lack experience and training in administering the drugs to children, and are often reluctant to treat children. Drugs are administered in different ways, and sometimes incorrectly, despite the existence of treatment guidelines for pediatric formulations.[295] There is an official policy to roll out pediatric ART at lower-level health facilities; this needs to be implemented widely. In particular, ART should be integrated into regular Maternal and Child Health (MCH) clinics.

In June 2008 the WHO recommended that all HIV-positive infants should be started on antiretroviral treatment, irrespective of whether they showed symptoms, CD4 cell count, or other criteria.[296] The Kenyan government is currently planning a program that aims to implement this recommendation.[297] Therefore, it can be hoped that many more infants will benefit from ART, including in lower-level health facilities.

The need for better diagnosis and treatment of tuberculosis in HIV-positive children

Because people living with HIV/AIDS have suppressed immunity, they are much more likely to develop tuberculosis than those who are not infected with the virus. Co-infected children die more quickly than those infected with only HIV/AIDS or tuberculosis. In Kenya, an estimated 29 percent of TB patients are HIV-positive. In recent years TB incidence in Kenya has increased dramatically[298] due to this "unnoticed collision."[299]

It is rare to achieve a definitive diagnosis of TB in co-infected children. The current tests available date from the late 19th century; there is an urgent need for research and development of better test methods.[300]

The situation is further complicated insofar as ART and drugs that are used to treat TB cannot be given together, as the drugs interact. HIV-positive children who are not yet receiving ART usually first get tuberculosis treatment, and are then started on ART. Co-infected children sometimes have to go through lengthy TB tests and treatment, and this can become an obstacle to ART. We documented this in the case of one-year-old Daniel in Nyangoma, Bondo district, described above (see Chapter IV): since there were no personnel able to read his X-ray, the TB diagnosis was delayed and he could not start ART.[301] In order to avoid late diagnosis of HIV, it has been suggested that all TB-infected children should be tested for HIV.[302]

No palliative care for children

Palliative care is medical and psychological support for patients who are in the terminal stage of a life-threatening disease, including pain relief. When AIDS patients in Kenya go through serious pain and suffering, there is usually little support for them. Very few health facilities-usually hospices-provide morphine. A doctor working in a hospice commented, "[With] children nobody knows how to treat pain."[303]

Physicians are not trained in providing pain relief to adults or children. They are often afraid to prescribe strong pain relievers such as codeine or morphine out of fear they will kill the patient. Such drugs are also not widely available, due to strict drug regulations. Many doctors do not see palliative care as important, as they consider it normal for patients with life-threatening illnesses to be in serious pain. Some even mistakenly believe that children cannot feel pain.[304]

Expanding the role of community health workers, social workers, and counselors-An important element in improving children's access to treatment

Community health workers, social workers, counselors, and other community-based actors play a vital role in assisting communities affected by HIV, for example by providing home-based care, and encouraging testing and treatment.[305] Frequently, health facilities or NGOs have such personnel to assist people infected or affected by HIV. Although the government officially recognizes the role of community health workers, social workers, and counselors,[306] it does not do nearly enough to support them. There are insufficient numbers of community health workers; they are unpaid, barely trained, and often overworked. Insufficient numbers of community health workers mean that there is insufficient support and monitoring for children's treatment.

Testing

Community health workers often undertake great efforts to inform caregivers about the need to test children, even if the child does not seem sick, and facilitate testing. In some cases, they even take children for testing when parents cannot do so, although such a scenario is not envisioned in the current testing guidelines, and current permissions are only delivered on an ad-hoc basis.[307] A community health worker in western Kenya explained how she managed to get approval for an eight-year-old boy to be tested:

[This] was a child who had lost his mother to HIV and was living with the grandmother, the father was not around…. I was told [at the health center] the child could not be tested because I was not staying with the child, I was not the guardian or the parent. So I told them at the [VCT] center that the grandmother who is taking care of the boy now is too old, she can't come to the center with him, but they said I must go and get a letter to say who I was and why I was testing the child…. I was overburdened at the time because I had used my own money to take the child to get tested. I did eventually get the letter, the boy was tested….You have to go and get tested.  Then you have to go and get the results. Then you have to go and get the viral load test. To do all this and to get the letter, I had to consult the grandmother and see the chief to verify the letter. This is difficult. At last I got the child tested and on antiretroviral drugs. But that was only one child; I had to spend a lot of my money and time just for this one child.[308]

Other community health workers told us how helpless they feel when parents refuse to have their children tested. Testing guidelines should allow parents or other caregivers to more easily authorize third parties, such as community health care workers, to take children for testing.

Treatment adherence

Many patients stop taking the drugs at some point. Adolescents in particular often have difficulty in continuing the treatment, as they may resent being monitored by a caregiver or more generally question the regime laid down for them.[309] Government health facilities, international agencies, and NGOs have started to carry out systematic monitoring of adults' and children's ART through community health workers or other staff. Before starting treatment, caregivers are usually given some information on treatment, with the aim of making patients and caregivers "treatment literate." Children themselves are usually not included in treatment literacy efforts,[310] although children are able at a young age to recognize the importance of their treatment. For example, we were introduced to an eight-year-old girl who took great care to take her medication regularly and was proud of it.[311]

Disclosure and emotional support

Community health workers and counselors also play a crucial role in helping children cope with their emotions. As mentioned above, caregivers often refrain from telling children they are HIV-positive well into adolescence. Disclosure is often initiated by a health worker or a counselor. Larger treatment programs for children have disclosure programs to guide this process. An experienced pediatrician told us,

We start disclosure between ages eight and ten. It is a process. But parents always want to wait longer, so it is difficult. We need to work with them. Parents want healthcare workers to do disclosure for them. Often children react with sadness, grief, and then they get better.[312]

In the absence of sufficient staff trained in child psychology, HIV-positive children in Kenya lack comprehensive community support and accompaniment during their suffering.[313] This includes palliative care in cases of terminal AIDS.

Government Policies to Improve Protection of Children with HIV

Although the government and donors are involved in a multitude of protection activities, child protection systems are weak in Kenya, and children are often left with no one to turn to in case they experience abuse.

Current protection activities can be grouped into the following areas: general child protection; protection for orphans and vulnerable children (OVCs); and protection for people living with HIV. The basis for child protection measures is the Children's Act, which establishes institutions charged with child protection, such as the Children's Courts, the Department of Children's Services and, within it, "children officers." At present, there are 85 children officers working across Kenya[314] charged with implementing legal protections in the Children's Act. For example, a children officer may take a child in need of care and protection to a place of safety and bring the child before a court.[315] If a child is in need of medical care, a children officer may take the child to a registered health institution and seek treatment; expenses shall be defrayed out of public funds.[316] However, in practice, the number of children officers is far too small, leaving them overstretched and unable to carry out any such activities. Instead, they mostly just receive cases in their offices.[317] The UN Committee on the Rights of the Child observed in June 2007 in respect of Kenya,

[The Committee is] concerned that prevention measures and appropriate mechanisms for responding to abuse remain inadequate. It regrets the lack of updated statistics on victims of reported cases of violence, especially sexual and intra-family, the limited number of investigations and sanctions in relation to such cases, and the lack of available physical and psychological recovery and social reintegration measures.[318]

In recognition of the difficulties faced by children infected or affected by HIV/AIDS, the government has developed a policy and guidelines on orphans and vulnerable children,[319] although the policy is still awaiting cabinet approval. Through these tools, the government has designed policies on a wide range of issues, including access to health care. Both the guidelines and the policy recognize the importance of antiretroviral treatment for HIV-positive children.[320]

One of the support and protection mechanisms described in the guidelines is "material support to OVC caregivers and service providers, especially vulnerable caregivers such as psychologically traumatized, economically deprived, child and elderly caregivers." This policy has been implemented through a cash-transfer program, providing cash on a monthly basis to families caring for orphans. Cash-transfer programs are growing rapidly in Africa with the aim of creating mechanisms of social protection.[321] The cash-transfer program in Kenya was started as a pilot project in 2004, later expanded and reaching about 25,000 families by August 2008.[322] Under this program, families in selected districts are getting a monthly cash transfer, between KSh1,000 and 2,000 (appr. US$13–26), depending on the number of orphans or vulnerable children in the household. There are no conditions attached as to how the money should be spent. The World Bank and the UK Department for International Development are among the donors for this program.[323] The government's aim is to reach 65,000 families by June 2009 and 300,000 by 2015.[324] At present, an evaluation is being prepared by the government on the program, in order to assess its impact.

An important tool for the protection of people living with HIV/AIDS is supposed to be the HIV and AIDS Prevention and Control Act. Although the President assented to the law on December 30, 2006, it is still not in force. One of the reasons for this seems to be that it remains unclear which ministry is supposed to gazette it. Campaigners suspect that beyond the bureaucratic squabbles and delays, there is a lack of political will to put the law into practice.[325]

[246] Human Rights Watch interview with Dr. Bactrin Kilingo, Kenya Hospice and Palliative Care Association, Nairobi, Nairobi, August 6, 2007.

[247]Human Rights Watch interview with Prof. Dorothy Ngacha, Kenyatta National Hospital. Department of Pediatrics, August 20, 2008.

[248]Human Rights Watch interview with Gerald Macharia, country director of the Clinton Foundation, Nairobi, August 20, 2008.

[249] John Oywa, "Kenya: ARVs Inaccessible to Children, Says Nyikal," The East African Standard (Nairobi), July 19, 2007, http://allafrica.com/stories/200707181436.html (accessed October 13, 2008).

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

[251] Ministry of Health, NASCOP, "Kenya AIDS Indicator Survey, preliminary report," July 2008.

[252] National AIDS Control Council, "Kenya National HIV/AIDS Strategic Plan 2005/6 – 2009/10. A Call to Action," June 2005, www.nacc.or.ke/downloads/KNASP_2005-2010_Final_Report.doc (accessed November 11, 2008), p. 22; "Kenya: Government introduces combination therapy for PMTCT," PlusNews, December 4, 2006, http://www.plusnews.org/report.aspx?reportid=62708 (accessed September 27, 2007); Pathfinder International, "Preventing Mother-to-Child Transmission in Kenya," June 2005,http://www.pathfind.org/site/DocServer/Pathfinder.PMTCT4-lite.pdf?docID=4041 (accessed November 10, 2008), p. 23; National AIDS Control Council, UNGASS 2008: United Nations General Assembly Special Session on HIV and AIDS, Country Report - Kenya, 2008, http://data.unaids.org/pub/Report/2008/kenya_2008_country_progress_report_en.pdf (accessed September 16, 2008).

[253] Human Rights Watch interview with Dr. Lyndon Marani, ART program manager, NASCOP, Ministry of Health, Nairobi, August 13, 2008; National AIDS Control Council, UNGASS 2008,p. 21. There are now over 1,000 PMTCT sites.

[254] Human Rights Watch interview with Dr. Mukui, ART programme officer, NASCOP, Ministry of Health, Nairobi, August 14, 2008. Coverage with antenatal clinics is about 88 percent. WHO, UNAIDS, UNICEF, Towards Universal Access: Scaling up priority HIV/AIDS interventions in the health sector - Progress Report 2008, http://www.who.int/hiv/pub/towards_universal_access_report_2008.pdf (accessed October 13, 2008), p. 84.

[255]In the first half of 2007, about 52 percent of HIV-positive pregnant women did take Nevirapine. NACC, "UNGASS 2008, Country Report – Kenya," p. 21.

[256] Janet Fleischman, "Strengthening HIV/AIDS Programs for Women; Lessons for U.S. Policy from Zambia and Kenya," 2005, Center for Strategic and International Studies; Pathfinder International, "Preventing Mother-to-Child Transmission."

[257] Human Rights Watch interview with Dr. Luchters, International Center for Reproductive Health, Mombasa, August 13, 2007.

[258] The German HIV Peer Review Group, "Prevention of Mother-to-Child-Transmission of HIV"; International Center for AIDS Care and Treatment Programs, "MTCT-Plus Initiative," http://www.columbia-icap.org/whatwedo/mtctplus/index.html (accessed October 13, 2008).

[259] Peter Cherutich et al., "Optimizing pediatric HIV care in Kenya: challenges in early infant diagnosis," Bulletin of the World Health Organization, vol. 86, no. 2, February 2008, http://www.who.int/bulletin/volumes/86/2/07-040402/en/index.html (accessed September 16, 2008).

[260] Ibid.

[261] Ibid.

[262]Human Rights Watch interview with Gerald Macharia, August 20, 2008.

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

[264] Cherutich et al., "Optimizing pediatric HIV care," Bulletin of the World Health Organization.

[265] National STI/AIDS Control Program, "Algorithm for Early Infant Diagnosis for HIV-Exposed Children," (Nairobi: Ministry of Health, 2007).

[266] Matthew Chersich and Marlise Richter, "HIV testing and ARV prophylaxis for newborns without their mothers' consent," The Southern African Journal of HIV Medicine, Autumn 2008. The article is followed by a rebuttal.

[267] Human Rights Watch interview with Dr. Nyikal, permanent secretary, Ministry of Health, Nairobi, August 20, 2008.

[268] Human Rights Watch interview with Dr. Mukui, August 14, 2008.

[269] Human Rights Watch interview with nurse-in-charge, Uywai dispensary, Nango, Bondo district, Nyanza province, August 18, 2008.

[270] Joanne Csete and Richard Elliott, "Scaling up HIV testing: human rights and hidden costs," HIV/AIDS Policy & Law Review, vol. 11, no. 1, April 2006; C. Hamilton et al., "Potential for abuse in the VCT counseling room: service provider's perception in Kenya," Health Policy and Planning, August 13, 2008.

[271] National AIDS and STD Control Programme, "National guidelines for voluntary counseling and testing," 2001, p. 5. The guidelines are currently under review; changes with regard to the issue of parental consent are not expected. The HIV/AIDS Prevention and Control Act, which is yet to be agreed upon and become law, has similar language on testing children.

[272] Some health providers interpret current testing guidelines to mean that mature minors can only be tested in centers where ART is available. Human Rights Watch interview with counselor at VCT, Unguja, Siaya district, Nyanza province, August 3, 2007.

[273] National AIDS and STD Control Programme (NASCOP), "National guidelines for voluntary counseling and testing," (Nairobi: Ministry of Health, 2001), p. 5.

[274]Human Rights Watch interview with counselor at VCT, Unguja, Siaya district, Nyanza province, August 3, 2007.

[275]The ability to understand medical treatment and consent to it has sometimes been defined as "Gillick competence." Gillick competence is a term originating in an English legal case which has been used in several countries to decide whether a child is able to consent to his or her own medical treatment, without the need for parental permission or knowledge, based primarily on the child's ability to understand the proposed treatment. See Gillick v West Norfolk and Wisbech Area Health Authority [1985] 3 All ER 402 (House of Lords).

[276]Human Rights Watch interview with counselor at Tuungane Youth Center, Kisumu, August 16, 2008.

[277]Kawango Agot et al., "Youth-specific services: A partnership to combine prevention & treatment," http://www.faces-kenya.org/publications/tuungane-poster.pdf (accessed September 17, 2008).

[278] Ibid.

[279] Human Rights Watch interview with Prof. Dorothy Ngacha, August 20, 2008.

[280] WHO, Guidelines on Co-Trimoxazole Prophylaxes for HIV-related Infections among Children, Adolescents and Adults, 2006, http://www.who.int/hiv/pub/guidelines/ctxguidelines.pdf (accessed October 13, 2008).

[281] Human Rights Watch interview with pharmacist, NASCOP, Ministry of Health, Nairobi, August 9, 2007; Human Rights Watch interview with Chris Ouma, UNICEF, Nairobi, August 6, 2007.

[282] Ministry of Health, "Summary Report October 2007," MMePA (Monitoring Medicine Prices and Availability) Quarterly, p. 2.

[283] Email to Human Rights Watch from Chris Ouma, UNICEF, September 19, 2008.

[284] WHO, UNAIDS, UNICEF, Towards Universal Access: Scaling up priority HIV/AIDS interventions in the health sector - Progress Report 2008, http://www.who.int/hiv/pub/towards_universal_access_report_2008.pdf (accessed October 6, 2008), p. 130.

[285] Human Rights Watch interview with Gerald Macharia, August 20, 2008; Ranbaxy Laboratories, "Anti HIV/AIDS," http://www.ranbaxy.com/socialresposbility/AntiHIV.aspx (accessed October 13, 2008).

[286] Human Rights Watch interview with Gerald Macharia, August 20, 2008.

[287] Human Rights Watch interview with Christa Cepuch, Health Action International, Nairobi, August 8, 2007. In general, supply chains for drugs-through KEMSA and MEDS-do not always work well. There was also a disruption of drug supplies during the post-election violence, as documented above.

[288] Human Rights Watch interview with CHAK representative, Nairobi, August 20, 2008. However, there are limited second line drugs for children in syrup formulation (second line drugs are given to patients who are resistant to the ART that is given in the first place).

[289] Human Rights Watch interview with nurse, Nyangoma Health Center, Nyangoma, Bondo district, Nyanza province, August 18, 2008.

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

[291] American Academy of Pediatrics, "Increasing Antiretroviral Drug Access for Children With HIV Infection," 2007, http://aappolicy.aappublications.org/cgi/reprint/pediatrics;119/4/838.pdf (accessed October 13, 2008). 

[292] For example, a three-month supply of stavudine, lamivudine, and nevirapine for a 10 kilogram child would weigh almost half as much as the child (4.3 kilograms). American Academy of Pediatrics, "Increasing Antiretroviral Drug Access for Children With HIV Infection." Syrups are also more expensive than pills; in Kenya, the Clinton Foundation has procured them.

[293] American Academy of Pediatrics, "Increasing Antiretroviral Drug Access for Children With HIV Infection."

[294] Human Rights Watch interview with Gerald Macharia, August 20, 2008.

[295] Human Rights Watch interview with Prof. Dorothy Ngacha, August 20, 2008.

[296] WHO, Anti-Retroviral Therapy for HIV Infection in Infants and Children, http://www.who.int/hiv/pub/guidelines/pediatric020907.pdf (accessed October 13, 2008).

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

[298] Path, "Integrating TB and HIV," http://www.path.org/files/CP_kenya_tb-hiv_fs.pdf (accessed October 13, 2008).

[299] Thom Anso, "Africa: Not Enough Research to Treat TB-HIV Properly, Say Experts," COMTEX, (Cape Town), November 2, 2007, http://allafrica.com/stories/200711020203.html (accessed October 13, 2008).

[300] MSF, "A Doctor's Frustration," http://www.accessmed-msf.org/resources/field-stories/a-doctor-s-frustration/ (accessed October 13, 2008).

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

[302] WHO, Anti-Retroviral Therapy for HIV Infection in Infants and Children. For children who are diagnosed with TB while already receiving treatment, ART regimens need to be carefully reviewed, and may need to be adjusted in accordance with official guidelines.

[303] Human Rights Watch interview with Dr. Bactrin Kilingo, August 6, 2007.

[304] Human Rights Watch interview with Dr. Weru, Nairobi Hospice, Nairobi, August 8, 2007.

[305] Charles O. Olango, "An ethnographic study of home-based care for people living with HIV/AIDS in Nyang'oma Division, Bondo District, Western Kenya," MA Thesis, Institute of Anthropology, Gender and African Studies, University of Nairobi, 2008 (unpublished).

[306] Ministry of Health, "Community Strategy Implementation Guidelines," March 2007.

[307] Human Rights Watch interview with Jane, community health worker, GROOTS, Mathare slum, Nairobi, August 10, 2007.

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

[309]Human Rights Watch interviews with counselor at Tuungane Youth Center, Kisumu, August 15, 2008; and Protus Lumiti, manager, Nyumbani orphanage, Nairobi, Central province, August 7, 2007.

[310] Human Rights Watch interview with Prof. Dorothy Ngacha, August 20, 2008.

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

[312] Human Rights Watch interview with Prof. Dorothy Ngacha, August 20, 2008.

[313] African Palliative Care Association, "What is Palliative Care?" http://www.apca.co.ug/about/whatis.htm (accessed October 13, 2008).

[314] Human Rights Watch interview with Esther Murugi Mathenge, minister for gender and children affairs, August 19, 2008. Previously, there was one children officer per district, but a new administrative subdivision has meant that about 70 districts are without child officers. The Department of Children's Services was previously part of the Ministry of Home Affairs and was moved into the newly created Ministry for Gender and Children Affairs in April 2008.

[315] The Children's Act, No.8 of 2001, Laws of Kenya, art. 120.

[316] Ibid., art. 121.

[317] Human Rights Watch interview with Mr. Hussein, director of Children's Services, Nairobi, August 20, 2008.

[318] UN Committee on the Rights of the Child, "Concluding observations: Kenya," June 19, 2007, CRC/C/KEN/CO/2, http://daccessdds.un.org/doc/UNDOC/GEN/G07/425/08/PDF/G0742508.pdf?OpenElement (accessed September 24, 2008).

[319] Ministry of Home Affairs, "National Programme Guidelines on Orphans and Other Children Made Vulnerable by HIV/AIDS," March 2003, http://www.ovcsupport.net/graphics/OVC/documents/0000554e00.pdf (accessed September 24, 2008); Ministry of Home Affairs, "National Policy on Orphans and Vulnerable Children," November 2005.

[320] Ministry of Home Affairs, "National Programme Guidelines on Orphans," p. 9; Ministry of Home Affairs, "National Policy on Orphans and Vulnerable Children," p. 19.

[321] UNDP, "Cash Transfer Programs in Africa," http://www.undp-povertycenter.org/cctafrica.do (accessed September 24, 2008); Stop Aids Now, "Social Protection for Children affected by AIDS, including Social Cash Transfers," March 2007, http://www.stopaidsnow.org/documents/SocialProtectionCABA_meeting_FEB07.pdf (accessed September 24, 2008); Michelle Adato and Lucy Bassett, International Food Policy Research Institute, "What is the Potential of Cash Transfers to strengthen families affected by HIV and AIDS? A Review of the Evidence on Impacts and Key Policy Debates," 2008, http://www.ifpri.org/renewal/pdf/RFbrief10.pdf (accessed September 24, 2008).

[322] Human Rights Watch interview with Mr. Hussein, August 20, 2008; Statement by His Excellency the Vice-President of the Republic of Kenya Hon. Dr. A.A. Moody Awori on the occasion of the presentation of the second state party periodic report on the Convention on the Rights of the Child, Geneva, Switzerland, January 16, 2007.

[323] R. Pearson and C. Alviar, "The Evolution of the Government of Kenya Cash Transfer Programme for Vulnerable Children between 2002 and 2006 and prospects for nationwide scale-up," 2007, http://www.undp-povertycenter.org/publications/cct/africa/EvolutionGovernmentKenyaCT.pdf (accessed September 24, 2008).

[324] Ibid., pp. 12-16; Human Rights Watch interview with Mr. Hussein, August 20, 2008.

[325] Human Rights Watch interview with Ambrose Rachier, Kenya Ethical and Legal Issues Network on HIV/AIDS (KELIN), Nairobi, August 13, 2008.