Rakai Health Sciences Program team connects with community members on September 14, 2017.

On the Cusp of Eliminating HIV

The Rakai Health Sciences Program transformed global AIDS policies and cut new cases by 90%. How will its storied research and clinical legacy continue?

By Brian W. Simpson • Photo by Jon Christofersen

Earlier this year, parents in a fishing village along the western shore of Lake Victoria pulled a half dozen children out of school.

News of U.S. government cuts to HIV programs and the lack of pediatric antiretroviral (ARV) medications because of clinic closures had flashed across the Ugandan countryside, says Gertrude Nakigozi, MD, PhD, MPH ’07, research director of the Rakai Health Sciences Program (RHSP), which has done some of the seminal research on HIV transmission and prevention in Africa.

The parents withdrew the children who have HIV because they knew how essential ARVs are. “They knew that what would happen next is the children will begin to fall sick, and they’ll die,” Nakigozi says. “So [they reasoned], why keep them in school?” 

Then the U.S. cuts to lifesaving medications were reversed. HIV clinics were reopened after nine days in Rakai. Still, deep uncertainty about the future of HIV treatment, prevention, and research persists in Uganda and much of Africa. 

Ironically, the budgetary threat emerged at a time of great optimism in the Rakai program, which has partnered with Johns Hopkins since 1987. The program, which provides clinical services to more than 2,700 people living with HIV, had cut new infections by 90% in recent years and extended ARV coverage to 90% of people with HIV, says RHSP epidemiologist Kate Grabowski, PhD ’14, ScM ’07.

IMMEDIATE CHALLENGES

The dramatic clinical successes followed RHSP’s storied research legacy. A 2000 New England Journal of Medicine (NEJM) study by the team proved that reducing the amount of virus in the body would reduce HIV transmission. The subsequent “treatment as prevention” strategy completely changed global AIDS policy, Grabowski says. And, in a 2017 NEJM article, the RHSP team showed that scaling up ARVs and voluntary medical male circumcision reduced new HIV cases by 42% from the pre-antiretroviral therapy period. (The reduction is now about 80%, she says.)

By early January of this year, RHSP was “at the cusp of really achieving something amazing,” Grabowski recalls. “We were talking about submitting grants to end HIV transmission in the settings we were working in. So, this is truly a heartbreaking scenario right now.”

The dismantling of USAID (which distributed 60% of PEPFAR’s bilateral HIV assistance) has exposed immediate and long-term challenges. Important tools in the fight against HIV have not been funded. PEPFAR, for example, will no longer support voluntary medical male circumcision programs, though it reduces men’s risk of aquiring HIV by 60%, says Grabowski. (“It’s the closest thing to a lifelong vaccine we have,” she notes.) Nor will PEPFAR support pre-exposure prophylaxis for people who are not pregnant or breastfeeding.

“We were talking about submitting grants to end HIV transmission in the settings we were working in." 

Given that the U.S. Congress failed to reauthorize PEPFAR in March, the program’s future is murky at best. Surveying the devastation that could follow the elimination of PEPFAR and greatly reduced access to ARVs, Grabowski thinks for a moment and says, “We are accustomed to viewing HIV as a chronic, livable disease with limited impact on daily life, but people who die from HIV can die a very horrible death,” she says. “Almost everybody who is untreated dies. It can collapse societies. I can’t believe this is happening.”

The outlook for research in Rakai got worse in early May when the U.S. administration announced it was immediately halting most grant awards to foreign colleagues doing research with U.S. scientists. “It is unclear how the new award process will shake out, but it has the potential to be devastating to American-led international research efforts like ours, which are a bulwark of U.S. national security and global innovation,” says Grabowski.

A RESURGENCE OF HIV?

Soon after the PEPFAR cuts were announced in January, Uganda’s Ministry of Health said it would shift HIV care and treatment from HIV-focused clinics to the existing primary care clinics. It’s an ambitious plan that many HIV experts agree with in principle. In fact, the government has long been piloting integration of HIV care. But achieving this nationwide will be a challenge.

“I have not seen any motions in Parliament, any supplementary budgets, or any public documents from the Ministry of Health,” says RHSP founder David Serwadda, MBChB, MPH ’91, a professor and former dean of Makerere University School of Public Health. He notes that other African countries have analyzed gaps in financing and proposed strategies to address the U.S. health services cuts.

A major task will be hiring and training new health workers to take on care of the unique needs of the 1.4 million Ugandans living with HIV. The country’s health care system is already underfunded and stretched thin, with 0.4 physicians per 1,000 patients—far fewer than recommended by WHO.

The new plan also means that some patients will be forced to travel farther for HIV care. Small HIV clinics had been established in rural areas to make it easy for people to access ARVs, but primary care clinics are fewer and more centralized. Any disruption to care locations can mean reduced adherence to medications, risking increased transmission and drug resistance, Grabowski says.

“Do I see resurgence of HIV? Absolutely, I would bet my money on it."

In communities covered by the Rakai program, HIV prevalence can range from 10% to as high as 40%, so a lack of ARVs or even a lengthy interruption in their availability could lead to a catastrophic increase in HIV cases.

“Do I [see] resurgence of HIV? Absolutely, I would bet my money on it,” says Serwadda, who was among the first to report on the “slim disease” (the initial name for AIDS) in Uganda back in 1985. “I expect that new HIV infections will gradually begin to rise over time. This isn’t just a guess; this will be the reality.”

Serwadda has seen it all before: Diseases surge back after funding cuts. “We have observed this trend in malaria programs, tuberculosis programs, and other sexually transmitted disease initiatives,” he says. “When I was young in the 1960s, we believed we had controlled malaria, so funding for malaria programs was drastically cut.

“And then,” Serwadda adds, “malaria returned.”