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The two sides of PEPFAR in Uganda
World Report
The two sides of PEPFAR in Uganda 155 000 people have now reportedly starting taking antiretrovirals courtesy of PEPFAR, the US plan for AIDS relief. But the different ways in which PEPFAR fund managers are aiding antiretroviral distribution is stirring intense debate. Emily Bass reports from Uganda on the two faces of PEPFAR.
www.thelancet.com Vol 365 June 18, 2005
However, these milestones have received less attention than Uganda’s role in PEPFAR prevention policies. The programme’s requirement for abstinence-only projects is justified, in part, by controversial analysis of Uganda’s success in reducing HIV prevalence during the 1980s and 1990s. But while prevention issues have seized the global spotlight, Uganda’s varied approaches to treatment make it a staging ground for choices that face ARV treatment programmes all over the world: how to decide between public health and development priorities; between speed and caution; and between medicalised and communitybased models of treatment. PEPFAR insiders are fond of pointing out that “emergency” is one of the words in the initiative’s acronym. So, too, is “plan”. And one of the key challenges for architects of Uganda’s AIDS treatment programmes is balancing the need for a rapid response with the desire to ensure that clients are able to take their medications correctly and consistently, for life. Without long-term adherence to treatment, many public health experts fear that the benefits of ARV programmes could be relatively short-lived. “You can characterise ARV roll-out programmes in two groups”, says Alex Coutinho, executive director of The AIDS Service Organization (TASO), one of Uganda’s largest PEPFAR-funded treatment providers. “The first, I would call ‘enrolment programmes’, which seek to increase the numbers of people on ARVs, and [the second] ‘adherence programmes’ that seek not only to put people on ARVs but that have systems in place to make sure people adhere.” As a non-governmental organisation, TASO is technically separate from the public health system, although the cen-
tres are frequently housed within or adjacent to public hospitals. Coutinho says that the ARVs are the “roof” of a house of services that TASO has constructed over the past 20 years, including counselling, home-based follow-up, food support, and vocational training. Countinho and others believe shoring up ARV provision with a bulwark of services will help maintain adherence. This is so important to TASO that it will spend $750 000 in supplemental PEPFAR funds on home-based testing of entire families, rather than on purchasing more drugs. Peter Mugyenyi, head of JCRC— another major PEPFAR grantee—takes a different approach. He worries that the over-emphasis on quality issues such as infrastructure, adherence, and laboratories, may divert attention from the urgent matter of distributing ARVs. “The priority is to put out the fire”, he says.
See Comment page 2075
Rights were not granted to include this image in electronic media. Please refer to the printed journal.
Reuters
Once a month, James Mugeni, a counsellor, mounts a motorbike and bumps along a dirt path that peters out in a maize field beside the compound of Rose, an HIV-infected woman in Tororo district in eastern Uganda. Rose is enrolled in a research programme that provides home delivery of medication, counselling, and other services for her and her family, all free of charge. Roughly 40 km away, in Mbale, clients make their own way to the pristine white building of the Joint Clinical Research Centre (JCRC), many of them with cash to buy their medicines. While they wait on benches beside a neatly trimmed lawn, their blood samples are whisked behind a door to a state-ofthe-art laboratory that would not be out of place in the USA. Divergent as these two programmes are, both are funded by the US President’s Emergency Plan for AIDS Relief (PEPFAR), the multi-year, multibillion-dollar initiative that reported having started or supported 155 000 people on antiretroviral (ARV) treatment in 15 “focus” countries during the financial year 2004. That these programmes are both found in Uganda is testament to its status as leader in AIDS treatment among African nations. Political will, a clutch of home-grown AIDS experts, and strong NGOs have all given this East African nation a head start among the 15 PEPFAR countries. It is also a sign of the strong, sometimes conflicting, visions about ARV provision that abound in Uganda. PEPFAR dollars are rapidly realising these visions. The country has received US$230 million since 2004. As of mid2005, the money had helped support nearly 40% of the country’s accredited ARV centres, and roughly 75% of all Ugandans receiving these drugs.
The US PEPFAR plan finances anti-AIDS activities in 15 countries
2077
World Report
Still Pictures
Rights were not granted to include this image in electronic media. Please refer to the printed journal.
PEPFAR funds home visits by health workers in Uganda
Concerns about quality at this early stage of roll out make Mugyenyi “very angry”, and he questions the morality of pausing to ensure optimal conditions. “If treatment is delayed because of quality issues, you are denying life to people. That is a gross human rights violation”, he says. This exclusive focus on ARV provision has helped JCRC expand at a remarkable speed. During the first 18 months of PEPFAR funding, JCRC enlarged its clientele to over 19 000 and expanded nationally to more than 30 clinics, the majority of which are in public health facilities. Most clients purchase generic drugs procured by JCRC, with the cheapest regimen costing roughly $16 a month. Around 2000 orphans and pregnant women receive free medications from PEPFAR. Adherence is discussed at clinic appointments, and the programme is now expanding strategies such as home visits to clients with risk factors for poor adherence. While JCRC has expanded to treat more people in more sites than any other provider in the country, TASO and programmes like the home-based care project in Tororo, are providing more free PEPFAR-funded ARVs. These initiatives have typically moved more slowly: in its first 18 months, TASO started around 2500 individuals on ARVs, most of whom attended a series of adherence counselling sessions—culminating with a signed “con2078
tract”—before starting ARVs. Home visits and pill counts are also routine. Although medications are free, patients may be asked for a user fee of $0·30. The differences between JCRC and TASO are mirrored in their US partners: the US Agency for International Development (USAID) and the Centers for Disease Control and Prevention (CDC), respectively. In Uganda, as in many PEPFAR countries, these are the two main managers for the tranche of PEPFAR funds allocated to the local US embassy and in-country branches of US agencies. Under these programmes, USAID, CDC, and agencies including the Peace Corps and the US Department of Defense, are charged with developing a single-country operating plan. In practice, the plans often include a patchwork of approaches. “Theoretically the coordinating team is supposed to come up with a unified approach. [But] that certainly hasn’t happened in most countries”, says a US-based public health expert working with PEPFAR programmes in several countries. “USAID and CDC have come at this from different directions”, agrees US Ambassador to Uganda Jimmy Kolker. The directions have much to do with the groups’ primary allegiances: USAID is a development agency, whereas CDC’s mandate is public health. A question facing both groups is how to make ARV programmes sustainable. One answer focuses on developing durable systems for procurement and distribution, and fostering organisations like JCRC that strive towards a degree of financial independence through fee structures. Another perspective—akin to the adherence model described by Coutinho—aims to keep individuals on treatment, even if it means taking potentially “unsustainable” steps to do so. Uganda’s PEPFAR partners agree that both perspectives are important. In practice, they often focus on different strategies. Recent discussions centred on distribution of a “basic care package” of cotrimoxazole, insecticide-treated
bed nets, safe water supplies and, in some instances, condoms. “Our approach has been to make sure we have re-supply available”, says Amy Cunningham, HIV/AIDS adviser for USAID in Uganda. USAID will award a multi-million-dollar contract to develop social marketing campaigns for the components of package and other health commodities. These would help foster paying markets, which would in turn underwrite free distribution to targeted groups. The CDC has arranged to distribute free basic care package “kits” to many clients. The team is concerned that in a poor country like Uganda, such a social marketing campaign may not achieve desired goals. “We need to get a better handle on the numbers [of people who can pay] and whether it makes sense to do that approach”, says CDC director of science Rebecca Bunnell. While the groups’ convictions sometimes lead to heated meetings, the overall mood in Uganda at the moment remains one of “let 1000 flowers bloom”. But PEPFAR as it exists today— with its zeal for variety—will not last forever. And as Uganda and other countries gain more experience in ARV provision, and scale up their own programmes with funding from the slower-moving Global Fund to Fight AIDS, Tuberculosis, and Malaria, there is a need to understand in more detail how fee structures, home-based care, and social services affect ARV delivery. To help answer these questions, the Uganda PEPFAR team is planning an assessment exercise that will evaluate adherence, morbidity, and mortality in its various programmes. These data are not required by the Washington, DCbased Office of the Global AIDS Coordinator, which oversees PEPFAR, but says Christian Pitter, principal adviser on ARVs for CDC Uganda, it is vital information. “If we do not roll out ARVs in a careful manner we could end up with a situation much worse than where we are today.”
Emily Bass www.thelancet.com Vol 365 June 18, 2005
The two sides of PEPFAR in Uganda 155 000 people have now reportedly starting taking antiretrovirals courtesy of PEPFAR, the US plan for AIDS relief. But the different ways in which PEPFAR fund managers are aiding antiretroviral distribution is stirring intense debate. Emily Bass reports from Uganda on the two faces of PEPFAR.
www.thelancet.com Vol 365 June 18, 2005
However, these milestones have received less attention than Uganda’s role in PEPFAR prevention policies. The programme’s requirement for abstinence-only projects is justified, in part, by controversial analysis of Uganda’s success in reducing HIV prevalence during the 1980s and 1990s. But while prevention issues have seized the global spotlight, Uganda’s varied approaches to treatment make it a staging ground for choices that face ARV treatment programmes all over the world: how to decide between public health and development priorities; between speed and caution; and between medicalised and communitybased models of treatment. PEPFAR insiders are fond of pointing out that “emergency” is one of the words in the initiative’s acronym. So, too, is “plan”. And one of the key challenges for architects of Uganda’s AIDS treatment programmes is balancing the need for a rapid response with the desire to ensure that clients are able to take their medications correctly and consistently, for life. Without long-term adherence to treatment, many public health experts fear that the benefits of ARV programmes could be relatively short-lived. “You can characterise ARV roll-out programmes in two groups”, says Alex Coutinho, executive director of The AIDS Service Organization (TASO), one of Uganda’s largest PEPFAR-funded treatment providers. “The first, I would call ‘enrolment programmes’, which seek to increase the numbers of people on ARVs, and [the second] ‘adherence programmes’ that seek not only to put people on ARVs but that have systems in place to make sure people adhere.” As a non-governmental organisation, TASO is technically separate from the public health system, although the cen-
tres are frequently housed within or adjacent to public hospitals. Coutinho says that the ARVs are the “roof” of a house of services that TASO has constructed over the past 20 years, including counselling, home-based follow-up, food support, and vocational training. Countinho and others believe shoring up ARV provision with a bulwark of services will help maintain adherence. This is so important to TASO that it will spend $750 000 in supplemental PEPFAR funds on home-based testing of entire families, rather than on purchasing more drugs. Peter Mugyenyi, head of JCRC— another major PEPFAR grantee—takes a different approach. He worries that the over-emphasis on quality issues such as infrastructure, adherence, and laboratories, may divert attention from the urgent matter of distributing ARVs. “The priority is to put out the fire”, he says.
See Comment page 2075
Rights were not granted to include this image in electronic media. Please refer to the printed journal.
Reuters
Once a month, James Mugeni, a counsellor, mounts a motorbike and bumps along a dirt path that peters out in a maize field beside the compound of Rose, an HIV-infected woman in Tororo district in eastern Uganda. Rose is enrolled in a research programme that provides home delivery of medication, counselling, and other services for her and her family, all free of charge. Roughly 40 km away, in Mbale, clients make their own way to the pristine white building of the Joint Clinical Research Centre (JCRC), many of them with cash to buy their medicines. While they wait on benches beside a neatly trimmed lawn, their blood samples are whisked behind a door to a state-ofthe-art laboratory that would not be out of place in the USA. Divergent as these two programmes are, both are funded by the US President’s Emergency Plan for AIDS Relief (PEPFAR), the multi-year, multibillion-dollar initiative that reported having started or supported 155 000 people on antiretroviral (ARV) treatment in 15 “focus” countries during the financial year 2004. That these programmes are both found in Uganda is testament to its status as leader in AIDS treatment among African nations. Political will, a clutch of home-grown AIDS experts, and strong NGOs have all given this East African nation a head start among the 15 PEPFAR countries. It is also a sign of the strong, sometimes conflicting, visions about ARV provision that abound in Uganda. PEPFAR dollars are rapidly realising these visions. The country has received US$230 million since 2004. As of mid2005, the money had helped support nearly 40% of the country’s accredited ARV centres, and roughly 75% of all Ugandans receiving these drugs.
The US PEPFAR plan finances anti-AIDS activities in 15 countries
2077
World Report
Still Pictures
Rights were not granted to include this image in electronic media. Please refer to the printed journal.
PEPFAR funds home visits by health workers in Uganda
Concerns about quality at this early stage of roll out make Mugyenyi “very angry”, and he questions the morality of pausing to ensure optimal conditions. “If treatment is delayed because of quality issues, you are denying life to people. That is a gross human rights violation”, he says. This exclusive focus on ARV provision has helped JCRC expand at a remarkable speed. During the first 18 months of PEPFAR funding, JCRC enlarged its clientele to over 19 000 and expanded nationally to more than 30 clinics, the majority of which are in public health facilities. Most clients purchase generic drugs procured by JCRC, with the cheapest regimen costing roughly $16 a month. Around 2000 orphans and pregnant women receive free medications from PEPFAR. Adherence is discussed at clinic appointments, and the programme is now expanding strategies such as home visits to clients with risk factors for poor adherence. While JCRC has expanded to treat more people in more sites than any other provider in the country, TASO and programmes like the home-based care project in Tororo, are providing more free PEPFAR-funded ARVs. These initiatives have typically moved more slowly: in its first 18 months, TASO started around 2500 individuals on ARVs, most of whom attended a series of adherence counselling sessions—culminating with a signed “con2078
tract”—before starting ARVs. Home visits and pill counts are also routine. Although medications are free, patients may be asked for a user fee of $0·30. The differences between JCRC and TASO are mirrored in their US partners: the US Agency for International Development (USAID) and the Centers for Disease Control and Prevention (CDC), respectively. In Uganda, as in many PEPFAR countries, these are the two main managers for the tranche of PEPFAR funds allocated to the local US embassy and in-country branches of US agencies. Under these programmes, USAID, CDC, and agencies including the Peace Corps and the US Department of Defense, are charged with developing a single-country operating plan. In practice, the plans often include a patchwork of approaches. “Theoretically the coordinating team is supposed to come up with a unified approach. [But] that certainly hasn’t happened in most countries”, says a US-based public health expert working with PEPFAR programmes in several countries. “USAID and CDC have come at this from different directions”, agrees US Ambassador to Uganda Jimmy Kolker. The directions have much to do with the groups’ primary allegiances: USAID is a development agency, whereas CDC’s mandate is public health. A question facing both groups is how to make ARV programmes sustainable. One answer focuses on developing durable systems for procurement and distribution, and fostering organisations like JCRC that strive towards a degree of financial independence through fee structures. Another perspective—akin to the adherence model described by Coutinho—aims to keep individuals on treatment, even if it means taking potentially “unsustainable” steps to do so. Uganda’s PEPFAR partners agree that both perspectives are important. In practice, they often focus on different strategies. Recent discussions centred on distribution of a “basic care package” of cotrimoxazole, insecticide-treated
bed nets, safe water supplies and, in some instances, condoms. “Our approach has been to make sure we have re-supply available”, says Amy Cunningham, HIV/AIDS adviser for USAID in Uganda. USAID will award a multi-million-dollar contract to develop social marketing campaigns for the components of package and other health commodities. These would help foster paying markets, which would in turn underwrite free distribution to targeted groups. The CDC has arranged to distribute free basic care package “kits” to many clients. The team is concerned that in a poor country like Uganda, such a social marketing campaign may not achieve desired goals. “We need to get a better handle on the numbers [of people who can pay] and whether it makes sense to do that approach”, says CDC director of science Rebecca Bunnell. While the groups’ convictions sometimes lead to heated meetings, the overall mood in Uganda at the moment remains one of “let 1000 flowers bloom”. But PEPFAR as it exists today— with its zeal for variety—will not last forever. And as Uganda and other countries gain more experience in ARV provision, and scale up their own programmes with funding from the slower-moving Global Fund to Fight AIDS, Tuberculosis, and Malaria, there is a need to understand in more detail how fee structures, home-based care, and social services affect ARV delivery. To help answer these questions, the Uganda PEPFAR team is planning an assessment exercise that will evaluate adherence, morbidity, and mortality in its various programmes. These data are not required by the Washington, DCbased Office of the Global AIDS Coordinator, which oversees PEPFAR, but says Christian Pitter, principal adviser on ARVs for CDC Uganda, it is vital information. “If we do not roll out ARVs in a careful manner we could end up with a situation much worse than where we are today.”
Emily Bass www.thelancet.com Vol 365 June 18, 2005