In the last 30 years, progress in the treatment of HIV/AIDS has been remarkable by any measure. Due to the development primarily of antiretroviral treatments, which slow the reproduction of the HIV virus within the body, it’s now possible to talk about “living with AIDS.”
Technologies aimed at prevention have advanced as well. Among the most recent developments is an antiretroviral drug that, taken daily by people at high risk for exposure to HIV, can diminish their chances of becoming infected. Yet progress in prevention has been uneven, with great progress in some populations, and the continuing spread of the disease in others.
For public health professionals such as LaRon Nelson ’02N, ’09N (PhD), these disparities underscore a persistent dilemma: “There’s already a pill,” Nelson says. “The challenge is, how do you get people to go to a clinic and take it?”
He’s addressing that challenge in an area where it’s especially steep: Ghana, a West African nation with sizeable numbers of AIDS cases, high transmission rates, and a traditional culture in which homosexual activity is strongly condemned.
The project, which Nelson has been working on since 2009, is entitled KAPPA, or Kumasi & Accra Project to Prevent AIDS. It received a major boost in 2011, when Nelson, then an assistant professor of nursing at the University of Toronto, was named one of 19 “Rising Stars in Global Health” from across Canada. The honor, designed to support bold approaches to address some of the most difficult challenges in global public health, came with $100,000 of funding from the Canadian government as well as high profile publicity and endorsement of the project.
Nelson says he based the project on self-determination theory, which he was first exposed to at Rochester. A theory of human motivation developed by Rochester psychology professors Edward Deci and Richard Ryan, it posits that people change their behavior most meaningfully and sustainably when they’re responding to internal rewards they define for themselves, rather than external rewards, defined and granted by others. Nelson learned about the theory from Geoffrey Williams ’93 (PhD), a professor of psychology, psychiatry, and medicine at the Medical Center who’s applied it in designing interventions to support people who want to quit smoking, and who is a partner on the KAPPA project.
Today there are 16 Ghanaian physicians on the project working to provide preventive services to men in the cities of Accra and Kumasi who are at highest risk for contracting HIV. At highest risk are men who have sex with other men, or MSM, as clinicians refer to them. The designation makes an important point, says Nelson, noting that previous research teams encountered barriers when they attempted to identify MSM as “gay men.”
“In America, we tend to start off with these labels,” he says. “We categorize things and people. We call men who have sex with men ‘gay.’ ”
But men in Ghana were rejecting that label. Many carried on primary relationships with women. They didn’t cluster in particular neighborhoods or seek to define themselves by sexual categories. “Many researchers who came before us made those categories a prerequisite,” says Nelson. “And then they said, ‘Well, if you can’t get people to admit they’re gay, then what can you do?’ ”
Identifying MSM in Ghana is not easy. But it’s critical, because Ghanaian men are unlikely to approach health clinics on their own to receive AIDS prevention services. The clinics, says Nelson, are often seen as “hostile environments” to Ghanaian MSM. “They’re afraid,” says Nelson. “Afraid of getting a lecture and afraid of getting turned in.”
Nelson describes KAPPA as a structural intervention, a term used to describe projects that seek to improve the health of entire communities by seeking change in social environments. He’s developed ways to reach high-risk men through their own networks, and worked with their nurses and physicians to develop new protocols for the delivery of health services.
Thomas Agyarko-Poku, a Ghanaian physician with Ghana Health Services and local principal investigator on the project, says KAPPA has scored a major coup: it’s gained the support of one of Ghana's most influential leaders, King Otumfuo Osei Tutu II, the monarch of Ghana's largest ethnic group, the Ashanti.
“KAPPA is truly a breakthrough, since it's the first time a foreign study team has collaborated with the Kingdom of Ashanti to conduct a study on MSM,” Poku says. The involvement of King Tutu II made it “easier to recruit MSM, because their fear of persecution was reduced.”
After his 2011 award from the Canadian government, Nelson has continued to rack up honors for his work. In 2012, after accepting a position as assistant dean for global and community affairs at the University of South Florida College of Nursing, he was one of 12 recipients of the Impact HIV/AIDS Champion of Change award presented at the International AIDS Conference in Washington, D.C. Orlando Harris ’10N (MS), a doctoral candidate at the School of Nursing and a former classmate of Nelson’s, was also among the winners.
Dianne Morrison-Beedy ’93N (PhD), who mentored Nelson at Rochester, recruited him last year to the University of South Florida, where she’s dean of the College of Nursing. “He’s a phenomenal young scientist,” she says.
As a National Institute of Nursing Research predoctoral fellow, Nelson honed his specialty, which he describes as the health of African and African-descendant communities, the latter often at the social and economic margins of the societies in which they live. As a doctoral candidate, and as associate director of the Monroe County Department of Public Health, Nelson worked to prevent HIV and other sexually transmitted diseases in the Rochester area.
Nelson credits the philosophy of nursing care he encountered at the School of Nursing as a guide in his research. It involves delivering care in ways compatible with the values and experiences of patients and their social networks.
“Health promotion at the community level is really about understanding that individuals don’t exist in isolation,” he says. “If we can move communities in terms of a shift in attitudes, or in terms of a shift in health status, then I think we’ll have a more lasting impact than we do with individual level care alone.”
If it sounds more complicated than treating each patient as an individual, it’s because it is. As Nelson often says: “Human lives aren’t simple. So the answers to problems are not going to be either.”