A Question of Life or Death - Human Rights Watch

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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 HIVpositive, 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, 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. A Question of Life or Death 46
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 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. 47 Human Rights watch December 2008
Page 1 and 2: A Question of Life or Death Treatme
Page 3 and 4: December 2008 1-56432-412-5 A Quest
Page 5 and 6: Map of Kenya 1 Human Rights watch D
Page 7 and 8: care of other relatives, but can su
Page 9 and 10: It is indicative of the current lac
Page 11 and 12: II. Methodology Field research for
Page 13 and 14: statistics by the UN classify child
Page 15 and 16: Treatment of HIV and of opportunist
Page 17 and 18: The case of Kenya Kenya has a gener
Page 19 and 20: AIDS, Tuberculosis and Malaria prio
Page 21 and 22: Following political conflict and po
Page 23 and 24: (EU). 61 There are also two importa
Page 25 and 26: stigmatized. Such beliefs are still
Page 27 and 28: Many patients distrust antiretrovir
Page 29 and 30: A community health worker in Mathar
Page 31 and 32: discriminatory experiences to relat
Page 33 and 34: According to a nurse at an HIV/AIDS
Page 35 and 36: decided to go to Nairobi with the c
Page 37 and 38: often by themselves, and it has bec
Page 39 and 40: know why. I’m afraid that he will
Page 41 and 42: [Carolyn’s] mum died when she was
Page 43 and 44: Both my parents died. I had two ste
Page 45 and 46: een told about their HIV status. Fo
Page 47 and 48: the very least, a child above 10 sh
Page 49: een raped by police. 169 Sexual exp
Page 53 and 54: way that she could adhere to our pr
Page 55 and 56: Sometimes caregivers start children
Page 57 and 58: Sometimes at the clinic, the treatm
Page 59 and 60: At this writing, health facilities
Page 61 and 62: mother, who already has an older ch
Page 63 and 64: are even more vulnerable to these s
Page 65 and 66: concern when the Kenyan government
Page 67 and 68: Despite this gap, change is finally
Page 69 and 70: Up until 2006, the large majority o
Page 71 and 72: Young people under 18 who are marri
Page 73 and 74: make cotrimoxazole widely available
Page 75 and 76: The need to make ART for children a
Page 77 and 78: normal for patients with life-threa
Page 79 and 80: treatment. For example, we were int
Page 81 and 82: access to health care. Both the gui
Page 83 and 84: VII. Legal Framework National and i
Page 85 and 86: The child’s right to the highest
Page 87 and 88: Every child shall have a right to h
Page 89 and 90: International law requires states t
Page 91 and 92: In Kenyan national law, under The C
Page 93 and 94: VIII. Detailed Recommendations To t
Page 95 and 96: To the Kenya Food Security Steering
Page 97 and 98: To UNAIDS, the World Health Organiz
Page 99: shared with us their analysis and a

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