On July 11, 2003, then-U.S. President George W. Bush and First Lady Laura Bush visited a clinic of The AIDS Support Organization (TASO) in Entebbe, Uganda, about 25 miles southwest of the capital Kampala. Six weeks earlier, the President’s Emergency Plan for AIDS Relief (Pepfar) had been signed into law. Congress committed $15 billion to support HIV/AIDS prevention, care, and treatment over the next five years to combat the disease in the 15 most afflicted countries, including 12 in Africa, with Uganda foremost among them.
“We knew [the Bushes’ visit] was the most significant event at the time. There was true hope,” says Bernard Michael Etukoit, a physician who was then manager of the TASO clinic. “Our patients were all dying and there was nothing we could do about it. Pepfar gave us hope. It gave us an additional narrative to give to the patients. They had a chance to live longer.”
However, even with the excitement it created, Etukoit, who is now TASO’s executive director, says there were lingering questions and doubts. His organization was already running one of the biggest HIV care clinics in the world and he wondered what the effect of this massive new influx of American dollars would be. For how long would the funding last? Who would be the beneficiaries?
Since 2003, the Pepfar program has been re-authorized or extended by Congress three times — in 2008, 2013, and most recently in December 2018 — with funding totaling more than $85 billion. The program has been credited with saving more than 18 million lives and changing the course of the HIV/AIDS epidemic in Africa.
“Our patients were all dying and there was nothing we could do about it. Pepfar gave us hope.”
But 15 years on, it was announced the funding model would be changing and the impact that will have on local organizations like TASO is unknown. In July 2018, the U.S. global AIDS coordinator Deborah Birx — now of course better known in her latest role as coordinator of the White House’s response to the novel coronavirus pandemic — issued a directive for all U.S. agencies to deliver 40 percent of their Pepfar funding to organizations within the countries the program serves in the next 18 months, and to reach 70 percent in the next 30 months. More importantly, funding is also expected to plateau as U.S. officials envisage a transition to sustainability in countries like Uganda.
“At best we are going to see flat funding in the coming years, as we want to move closer to epidemic control in Uganda,” says former U.S. Ambassador to Uganda Deborah Malac.
Although these changes are in many ways a testament to how far Uganda and much of the rest of Africa have come in fighting the AIDS epidemic, survey data shows troubling signs of a return to pre-epidemic attitudes and lifestyles. And although officials still express confidence that Uganda is on the path to eventually ending HIV as a public health problem, some activists wonder if the U.S. and other international donors are withdrawing from the field too early, before the two-decade long war against AIDS in Uganda has been decisively won.
The focus on moving funds away from international organizations to local organizations within Africa is in many ways the least of Uganda’s worries. Uganda has long had a vibrant network of local organizations devoted to HIV control, and in fact, the country surpassed the 40 percent target before the requirement even took effect. The organizations, however, have to ensure that structures and operational systems are in place as epidemic control is achieved and funding levels decline, according to Amy Cunningham, who was Pepfar’s country coordinator for Uganda at the time of the interview.
Pepfar in Uganda already allocates 50 percent of their funds to local organizations and is well on the way to 70 percent, according to Cunningham. “I think we will easily get there,” she adds.
The reason Uganda has such a robust system is in part due to having been hit so hard and early by the disease — an astonishing 18 percent of the population was infected with the human immunodeficiency virus at its peak in 1992. (The infection compromises the immune system and can cause Acquired Immunodeficiency Sydrome (AIDS), which rapidly became the leading cause of death in sub-Saharan Africa.) But it is also a result of the far-sightedness, rare in the region at the time, among its leaders during the early years of the crisis.
“At best we are going to see flat funding in the coming years, as we move closer to epidemic control in Uganda.”
In 1986, under President Yoweri Museveni, Uganda adopted the region’s first national AIDS control program, which featured a health education campaign to inform the public about how the disease was transmitted and how to avoid infection. Posters, fliers, leaflets, and booklets were developed and translated into local languages.
And it wasn’t just the federal government. Leaders at all levels of society spoke openly about HIV prevention, and testing to learn your status was encouraged. The government’s approach of the ABC’s (abstinence, be faithful, and use a condom), combined with a message of “zero grazing” — meaning monogamy — were crucial to reducing the HIV prevalence threefold to 5.7 percent among people ages 15 to 49 in 2018.
“We have some civil-society and non-governmental systems that were there from day one that are even stronger today,” says Cunningham. “They are indigenous, they’re going to be here, they’re not going to be leaving.”
But international aid was also key, and Cunningham says that part of the reason Uganda can easily reach the goals for local organizations and funding is because for the last 17 years Pepfar program funding has built up both the physical infrastructure and human resource capacity required. Still today, over 70 percent of the HIV epidemic response in Uganda is externally funded.
“What we need to do is make that shift for sustainability,” says Cunningham, “back to local organizations that can play the role for the long term.”
TASO, co-founded by Noerine Kaleeba in 1987, and the Joint Clinical Research Center (JCRC), an HIV/AIDS care institution co-founded in 1991 by Peter Mugyenyi, a physician and HIV/AIDS researcher, exemplify this shift to a new era in HIV prevention and care in the country. Before Pepfar was introduced, JCRC was running one of the biggest HIV care clinics in the world.
“We were offering treatment to patients at a cost. Some people had the means to buy the drugs but they had to fly out of the country,” says Cissy Kityo Mutuluuza , an epidemiologist and public health specialist who was then the deputy director of research at JCRC. After JCRC started importing the drugs, patients would buy them locally. The center also offered antiretroviral therapy (ART), the combination of medicines used to treat HIV infection, under a research program that served around 40 people when it began in 1992.
Kityo, now the organization’s executive director, says JCRC built the case for Pepfar to provide ART on a broader scale because the organization already had implemented a ‘cost recovery’ business model. At a time when few people believed Africans would adhere to the strict treatment regimen required to make the expensive drugs effective, JCRC was able to demonstrate that they could, serving as the case study for Pepfar to expand coverage to Haiti and other developing nations.
JCRC ended up becoming one of the first organizations worldwide to receive Pepfar funding in December 2003, a total of $69.7 million to be spent over a period of seven years, which allowed the organization to build a national network to expand ART treatment nationally.
“It acted as an emergency mode to get people on treatment. It has now scaled down after USAID, CDC, and the Uganda government strengthened the public sector where most of the patients have been transitioned to,” she says.
In recent years, JCRC has transferred most of its centers to the Uganda Ministry of Health.
TASO, too, expanded nationally in the early years of Pepfar and has had to pare back operations in some areas of the country due to the presence of more players. These upstart organizations have since been receiving Pepfar dollars and are themselves now sub-granting smaller organizations.
TASO executive director Etukoit sees this proliferation of players in the HIV space as a positive sign for the country. “The layering [of big organizations and small ones getting Pepfar dollars] is a blessing for building capacity, creating sustainability, and bringing new innovations especially in the form of programming,” he says.
And the capacity building and innovation are only set to grow. Last July, the Pepfar program in Uganda called for applications from local implementing partners. For only 20 small grants (ranging from $5,000 to $15,000) available in the first round of the call, they received more than 1,000 applications from local organizations.
“The layering [of big organizations and small ones getting Pepfar dollars] is a blessing for building capacity, creating sustainability, and bringing new innovations especially in the form of programming.”
Religious groups in particular may benefit from this change in emphasis. Reverend Canon Gideon Byamugisha, an Anglican priest who in 1992 became the first religious leader in Africa to publicly announce that he was HIV positive, says it is important that Pepfar engages more with faith-based organizations. (Uganda is predominantly Christian but also has a significant Muslim population.)
“They are on the ground. They have the presence, the reach, the trust of their people and a ready audience,” says Byamugisha, who also co-founded the International Network of Religious Leaders Living with or Personally Affected by HIV or AIDS in 2002.
Byamugisha explained that many faith-based organizations already operate health care centers and mission hospitals and will make reliable partners for the government and international donors.
“It is good to empower local organizations again because international organizations have been taking advantage,” says Charles Brown, executive director of Preventive Care International, a non-governmental organization with a mission to prevent new infections through advocacy, research, and training.
Brown says that bigger international organizations are willing to sub-grant smaller ones while at the same time limiting their ability to grow. “Most big organizations want the small ones to have structures to manage funds instead of building their capacity. It’s like saying you must have experience to be given a job,” he says.
But the new focus on home-grown organizations is about how to divide the pie up, not about how big the pie is, and local activists see that the writing is on the wall with regard to the commitment of international funders. Over the 17 years since Pepfar was launched in Uganda, the number of bilateral partners working on specific HIV issues has fallen from 16 to only two: the U.S. government and the Republic of Ireland through Ireland AID. The Belgian government’s international development arm also offers HIV support and other development partners work in the broader health sector.
Nelson Musoba, director general of the Uganda AIDS Commission (UAC), the government body legally charged with coordinating the national response against the HIV/AIDS epidemic, said there is an urgent need to ensure domestic financial sustainability for HIV response.
On the positive side, he notes that the Ugandan government has stepped up, passing a law in 2014 creating an AIDS Trust Fund (ATF) and committing itself to a 50 percent increase in funding towards the procurement of drugs to ensure new clients are initiated on ART. In June 2017, President Museveni launched a “Presidential Handbook” with a 5-Point Plan to fast track initiatives in the fight against HIV.
Vinand Nantulya, the former chair of UAC, has also come up with an alternative financing source for HIV response through the private-sector-led One Dollar Initiative (ODI), which has the target of raising one billion dollars.
“They are good steps in the right direction because we do not have any initiatives in domestic funding,” said Sylvia Nakasi, a policy and advocacy officer at the Uganda Network of AIDS Service Organizations, a nonprofit that provides a platform for coordination of member organizations working on HIV/AIDS.
Nakasi, however, says the implementation of these initiatives has stalled. “The law was passed in 2014, but up to now it is not yet operationalized. The [ATF] is key because people are on treatment for life, and we should start now, but they are not treating it with the urgency required as donor funding is winding up,” she said.
Many stakeholders say the ATF, which will be funded through taxes on things like alcohol and bottled water, should at least become operational for the first time this year. ODI plans to announce a call for proposals and start awarding money to local organizations.
Sustainable funding will be key to meeting the ambitious goals public health officials have set for the country. One is hitting HIV epidemic control — when the total number of new HIV infections fall below the total number of deaths from all causes among HIV-infected individuals — by the end of the year, which would make it one of the first countries within the group of most afflicted HIV countries to do so. Uganda also hopes to completely end AIDS as a public health threat by 2030, which is one of the Sustainable Development Goals set by the United Nations in 2015.
Recent trends suggest it may be an uphill battle. In August at the 12th annual Joint AIDS Review Conference in Kampala, the UAC announced that there were 1,000 new infections and 500 HIV related deaths every week. After a long decline in infections among the general public, the number of infections among young people between the ages of 15 and 24 is growing, comprising about a third of all new infections.
Daniel Byamukama, the head of HIV prevention at the UAC, says that public messaging that may have made sense for a previous generation is no longer working as many people have reverted to pre-epidemic attitudes and lifestyle choices.
“We began to communicate messages to the public which do not make sense to them as to what action they are expected to take. Some messages are outright wrong,” he says.
“We have a problem with pastors,” he says. “We want the pastors to stop ‘healing people.’ Witch doctors are being promoted through the media as healers too. These are affecting drug adherence and viral load outcomes.”
In addition to ensuring proper treatment for people already diagnosed with HIV, public health officials are troubled by the population who don’t know their status. According to UAC, as of last year, 75 percent of all adults 15 years or older (68.9 percent of men and 82.1 percent of women) had ever tested for HIV and received their results.
“We began to communicate messages to the public which do not make sense to them as to what action they are expected to take. Some messages are outright wrong.”
At the conference in August 2019, the UAC reported that the number of people in the country getting tested for HIV has declined each of the past three years — which is a deliberate government policy — as the government now employs targeted HIV testing instead of mass testing.
Getting more people tested is a point of emphasis in Pepfar and the United Nations’ latest strategic plan, with the goal being “90-90-90:” 90 percent of the population living with HIV knows their status, 90 percent of those HIV-positive people are on ART treatment, and 90 percent on ART treatment are obtaining and maintaining viral suppression.
Pepfar’s Cunningham also says that Uganda has the right tools, including the new antiretroviral drug tenofovir-lamivudine-dolutegravir, which is much less susceptible to drug-resistant strains of the virus and improves adherence to treatment, as well as the increased availability of HIV self-test kit through public clinics and outreach programs. “These are two interventions that are showing good results,” she says.
Still, she is optimistic that Uganda would be able to announce epidemic control on World AIDS Day on December 1, even if Covid-19 has complicated some efforts and led to restrictions on movement to minimize the spread of the disease.
The UAC’s Byamukama thinks Uganda would attain the 90-90-90 goal this year. “We have innovative ways of identifying people who are not on treatment who we immediately put on treatment,” he says. “Uganda is certain to meet its 90-90-90 targets by December 31, 2020.”
Esther Nakkazi is a science and technology journalist based in Kampala and the founder of the Health Journalists Network in Uganda.