By Madellena Conte, IGHS master’s student
The delivery of antiretroviral therapy (ART) simultaneously represents a spectacular biomedical achievement and a great failure. The achievement is that 21 million people living with HIV (PLWH) worldwide are currently taking ART, which has transformed their diagnosis from a death sentence to a manageable chronic disease. The failure is that 16 million PLWH are not on ART and are suffering from a disease that we have the scientific technology to treat.
This gap between the development and use of ART exists globally and locally. If PLWH consistently take ART, they will achieve viral load suppression (VLS), meaning that the amount of virus in the blood in undetectable. In 2017, 47% of all PLWH worldwide were virally suppressed. Here in San Francisco, 74% of PLWH achieved VLS. In an affluent city like San Francisco, we would expect VLS rates to be greater than the global average. However, if we look at the homeless population in San Francisco, only 33% are virally suppressed. That is substantially less than the global average.
To address the low rates of viral load suppression among homeless PLWH, we need to understand what this population wants from their healthcare. Homeless people face unique challenges such as food insecurity, psychiatric disease, substance use disorder, and unstable housing, all of which are often more urgent than connecting with healthcare. This is where my capstone research steps in.
Under the mentorship of Drs. Elvin Geng and Asa Clemenzi-Allen, I will conduct a discrete choice experiment (DCE) at the HIV clinic (“Ward 86”) at Zuckerberg San Francisco General Hospital. The DCE is a tool that can reveal and measure trade-offs in patients’ decision making. I will use the DCE to quantify patient preferences for various components of HIV clinic care, such as their relationship with the clinic team, appointment scheduling or gift cards they may receive as incentives for clinic visits. Measuring trade-offs means, for example, looking at the circumstances under which patients might prefer a $5 incentive to attend an appointment at a particular clinic that has providers who know them as a person rather than a $15 incentive for attending an appointment at a clinic where providers do not know them as a person.
It is not lost on me how different my reality is from the individuals with whom I am working. I do not have HIV, nor am I homeless. In fact, I live in a beautiful apartment in San Francisco and walk by homeless people on my way to class. I do not use meth nor do I have a psychiatric disease. However, this is the reality of many of the people I will talk with during the DCE. What I do have is a willingness to listen, an interest in learning about what homeless PLWH want from their healthcare and a drive to help all PLWH get access to lifesaving medications.
While this master’s program and my mentors have stoked my interest in studying HIV, I already had two major touch points with the disease in my life. First, my mother runs a pharmaceutical company that makes a drug used by PLWH on ART for the symptomatic relief of diarrhea. From p-values and clinical trials, to investors and FDA approval, I gained insight at an early age into the arduous road to getting a drug on the market. I also learned that, for many PLWH, ART only treats part of the problem. I met Tez Anderson, an AIDS activist and long-term HIV survivor, who described the neglected co-morbidities of the community, namely diarrhea and accelerated aging. For many in the HIV community, healing extends beyond having a viral load of zero.
Second, my long-time figure skating coach was diagnosed with HIV while I was in college. He was important to me as a coach and father figure during the 10 years I trained with him. He taught me how to balance discipline and joy in my skating. A former figure skater, my coach had a strong muscular build. When I returned from college to visit the rink, I could hardly recognize him: his cheeks were sunken, his face thin and his clothes baggy. The physical changes in his body were striking and personalized the transformation of the diagnosis for me. I often think about him whenever I learn or talk to someone about HIV.
Everything about living with HIV is a marathon. Despite the recent report that a second patient appears to have been cured of the infection, HIV remains a manageable chronic disease with no available cure for millions of PLWH. Through my capstone research, I hope to understand what homeless PLWH in San Francisco want from their healthcare in order to improve their retention in care, help them stay on ART and ultimately become virally suppressed.