Phoebe Rajula is grateful that she and her daughter have access to life-prolonging antiretroviral medication, but the frequent trips to Mbagathi District Hospital in the capital, Nairobi, for their medication take a toll on her meagre finances and her energy levels.
“You cannot be given many drugs for the child because they are difficult to keep; I come from very far and I just walk to this place because I have no money to take a matatu [public transportation],” she told IRIN/PlusNews. “But at times when I feel like giving up, the desire to see her alive makes me force my tired legs to carry on. To me it is a journey of life.”
Rajula has benefited from a regional expansion in the number of children receiving ARVs. According to Children and AIDS: The Fourth Stocktaking Report, 2009, released by the UN Children’s Fund (UNICEF), UNAIDS and the UN World Health Organization on 30 November, the numbers jumped from 158,000 in 2007 to 225,000 in 2008. During the same period, 45 percent of pregnant mothers in sub-Saharan Africa received antiretroviral treatment to prevent infection in their unborn children, up from 35 percent in 2007.
The report noted, however, that the progress had been uneven, with inequalities in access and service coverage.
“There are a combination of factors that have contributed to the scenario where not many children are on treatment, ranging from stigma, both from parents and the community, [to] complicated formulations of drugs and inadequate training of healthcare workers on paediatric antiretroviral therapy,” said David Alnwick, UNICEF’s regional adviser for HIV/AIDS. “It is also very difficult to diagnose HIV in children and it is far more expensive for many countries.”
According to Juliane Kippenberg, a senior researcher with Human Rights Watch (HRW), although treatment for children is free in most countries in the region, it is mostly offered in high-level facilities that are not easily accessible, meaning high transport costs.
“There is a need to link health facilities to communities to ensure support and follow-up for children already on treatment so that they do not drop out and miss the opportunity to live,” she said. “This is where community health workers come in handy; even if you increase availability of drugs, without tackling obstacles to access the increase will not necessarily translate into high access.”
Fighting stigma
Lack of access to drugs is not the only problem children living with HIV face; without psychological support, they and their parents suffer emotional turmoil. Shadrack Mutisya, who lives in Nairobi, took his daughter out of school because of the incessant bullying she faced when her fellow students learned she was HIV-positive.
“When she joined the school, I shared with the teachers her condition because I thought that would help, but the teacher ended up telling other pupils thinking he was helping by letting them know,” he said. “They started teasing her, telling her she is a loose girl and that is why she got the disease; to these children, people only get HIV from sex, and they associated this young girl with prostitution.”
According to UNICEF’s Alnwick, involving communities and families in psycho-social support for HIV-positive children would go some way toward reducing stigma levels. Parents, for instance, need help in understanding how best to disclose their children’s status to them.
“Many parents still fear having their children tested for HIV because they believe if a child is positive, then it is most likely they too are positive,” said Irene Mukui, ART programme manager at Kenya’s National AIDS and Sexually Transmitted Infection Control Programme.
“When children are kept in the dark, it violates their rights to know and there should be ways that disclosure can be [made] so that they do not [grow] into adulthood with guilt,” HRW’s Kippenberg said.
According to Alnwick, it will be important for countries in Africa to follow the lead set by success stories such as Rwanda, which, has achieved higher numbers of children on ARVs by scaling-up healthcare information systems and training large numbers of health workers. He stressed, however, that the key to fewer paediatric infections would be to ensure that more women received prevention of mother-to-child transmission (PTMCT) services.
“While it is good to focus on offering treatment to children, strengthening PMTCT programmes will ensure fewer paediatric infections and ease the provision of paediatric ART,” he said.
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“You cannot be given many drugs for the child because they are difficult to keep; I come from very far and I just walk to this place because I have no money to take a matatu [public transportation],” she told IRIN/PlusNews. “But at times when I feel like giving up, the desire to see her alive makes me force my tired legs to carry on. To me it is a journey of life.”
Rajula has benefited from a regional expansion in the number of children receiving ARVs. According to Children and AIDS: The Fourth Stocktaking Report, 2009, released by the UN Children’s Fund (UNICEF), UNAIDS and the UN World Health Organization on 30 November, the numbers jumped from 158,000 in 2007 to 225,000 in 2008. During the same period, 45 percent of pregnant mothers in sub-Saharan Africa received antiretroviral treatment to prevent infection in their unborn children, up from 35 percent in 2007.
The report noted, however, that the progress had been uneven, with inequalities in access and service coverage.
“There are a combination of factors that have contributed to the scenario where not many children are on treatment, ranging from stigma, both from parents and the community, [to] complicated formulations of drugs and inadequate training of healthcare workers on paediatric antiretroviral therapy,” said David Alnwick, UNICEF’s regional adviser for HIV/AIDS. “It is also very difficult to diagnose HIV in children and it is far more expensive for many countries.”
According to Juliane Kippenberg, a senior researcher with Human Rights Watch (HRW), although treatment for children is free in most countries in the region, it is mostly offered in high-level facilities that are not easily accessible, meaning high transport costs.
“There is a need to link health facilities to communities to ensure support and follow-up for children already on treatment so that they do not drop out and miss the opportunity to live,” she said. “This is where community health workers come in handy; even if you increase availability of drugs, without tackling obstacles to access the increase will not necessarily translate into high access.”
Fighting stigma
Lack of access to drugs is not the only problem children living with HIV face; without psychological support, they and their parents suffer emotional turmoil. Shadrack Mutisya, who lives in Nairobi, took his daughter out of school because of the incessant bullying she faced when her fellow students learned she was HIV-positive.
“When she joined the school, I shared with the teachers her condition because I thought that would help, but the teacher ended up telling other pupils thinking he was helping by letting them know,” he said. “They started teasing her, telling her she is a loose girl and that is why she got the disease; to these children, people only get HIV from sex, and they associated this young girl with prostitution.”
According to UNICEF’s Alnwick, involving communities and families in psycho-social support for HIV-positive children would go some way toward reducing stigma levels. Parents, for instance, need help in understanding how best to disclose their children’s status to them.
“Many parents still fear having their children tested for HIV because they believe if a child is positive, then it is most likely they too are positive,” said Irene Mukui, ART programme manager at Kenya’s National AIDS and Sexually Transmitted Infection Control Programme.
“When children are kept in the dark, it violates their rights to know and there should be ways that disclosure can be [made] so that they do not [grow] into adulthood with guilt,” HRW’s Kippenberg said.
According to Alnwick, it will be important for countries in Africa to follow the lead set by success stories such as Rwanda, which, has achieved higher numbers of children on ARVs by scaling-up healthcare information systems and training large numbers of health workers. He stressed, however, that the key to fewer paediatric infections would be to ensure that more women received prevention of mother-to-child transmission (PTMCT) services.
“While it is good to focus on offering treatment to children, strengthening PMTCT programmes will ensure fewer paediatric infections and ease the provision of paediatric ART,” he said.
ko/kr/mw
This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions
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