By Cameron Scott
When Sharlene Jarrett was working with HIV-positive patients during a 2002 doctoral training internship in clinical psychology, she was shocked to learn that the Caribbean had more HIV cases per capita than anywhere but sub-Saharan Africa. The numbers profoundly affected Jarrett because she had lived in Jamaica until she was 10 and planned to return to work.
“That was really striking. Up until that year, I had no idea there was such a significant epidemic in the Caribbean,” she said.
Jarrett went on to do a postdoctoral fellowship focused on HIV and to earn a MS in biostatistics to prepare her to collect and interpret her own data. She returned to Jamaica in 2006 and worked doing HIV monitoring and evaluation at the Jamaican Ministry of Health. Since 2016, Jarrett has been the director of epidemiology and strategic information for the Jamaica programs that IGHS runs for the CDC. (The CDC funds HIV care and prevention programs around the world.)
The work uses data to identify problems and potential fixes in Jamaica’s progress toward the UN’s HIV 90-90-90 goals, which stipulate that 90% of those who are HIV-positive should know it; 90% of those should be on medication, and, of those, 90% should have an undetectable viral load to keep them healthy and non-contagious. At the end of the day, those numbers highlight the need for behavior change – whether clinicians’ or patients’ – and that’s where Jarrett’s background in psychology makes a difference.
“I wanted to be more involved in the program aspects, and that’s exactly what I’m doing now – being able to not just generate data but actually at a program level, in a facility, use that data to develop interventions,” she said.
Though improved since 2002, Jamaica continues to lag behind UN goals. What keeps the Caribbean island nation from making as much progress as other low- and middle-income countries? The same question was at the heart of one of Jarrett’s first projects with UCSF.
The CDC had observed that a high number of HIV-positive Jamaicans had been lost to follow-up care. Jarrett and her team worked with CDC-funded sites to systematically find those patients, return them to care, and survey them on why they had stopped going for care. Common responses were long waits at clinics and fear that their HIV status would be disclosed. The team helped sites expand hours and increase travel reimbursement to ensure that patients who returned remained in care. Two-thirds of the cases have been resolved.
Another major undertaking was the so-called 876 study, so-called for Jamaica’s international country code. Previous studies had found that nearly 30% of Jamaican transgender people and men who have sex with men (MSM) were HIV-positive – findings the community resisted because many suspected the researchers had mainly surveyed sex workers. As a result of pervasive homophobic climate, others would avoid such a survey, as many thought.
“The community wants data they can stand behind, not data that depicts them in a certain way,” Jarrett said.
The UCSF team conducted extensive outreach to build trust with the transgender and MSM communities. They worked with the LGBTQ community to create a transparent survey protocol. The study documented the way anti-trans and homophobic stigma affected individuals’ ability to protect themselves from HIV and get treatment.
Sadly, the 876 study confirmed that nearly 30% of MSM and 51% of transgender women were HIV positive. But the results got traction within the LGBTQ community and has informed and guided advocacy work and HIV prevention and treatment programs.
Jarrett’s latest project underscores how the strategic use of data can help steer HIV treatment programs. Recent data has revealed that two UCSF-supported clinics had some of the lowest rates of viral suppression in the country. The team spoke to doctors and clinic staff and evaluated their processes. Then they built a data dashboard to show patients’ treatment over time alongside their viral load test results. The dashboard showed that patients whose viral load didn’t fall as a result of a given antiretroviral drugs (ARV) nevertheless often remained on that regimen for years. It suggested that viral loads my not have been followed closely enough after a patient’s viral load first fell. Jarrett and team helped the clinic staff implement docket reviews, case conferences and quality improvement projects, which have improved viral suppression at these sites.
You may wonder why Jamaicans at high risk of HIV infection aren’t taking tenofovir (called Truvada and PreP in the U.S.), which prevent and can also treat HIV infection. The game-changing drug is just beginning to become available in Jamaica. Because long-term use of tenofovir necessitates regular lab tests, the government is conducting cost estimates to determine the resources that will be required to make tenofovir available nationally.
This is, unfortunately, global health: lower- and middle-income countries slog along making hard-won incremental progress long after miracle drugs become widely available in wealthy countries.
“When I got to here in 2006, they were just starting to have ARVs available for free in the public system,” Jarrett reflected. “I had worked in Brooklyn and Manhattan before with folks who had been positive since 1984 who had been on AZT, cocktails, everything. But in Jamaica you had to be wealthy to buy ARVs, so most people who were positive were really just waiting to pass.”
Things get better, but slowly. The best change-makers, like Jarrett, combine human insights and strategic data.