National HIV Prevention Conference 2015, Part 2: Funding and Stigma
December’s National HIV Prevention Conference focused on the substantial successes of two key biomedical interventions. First, there’s PrEP or pre-exposure prophylaxis, and second, TasP, an HIV treatment known as Treatment as Prevention. PrEP is effective in preventing HIV-negative people from contracting HIV if they take the medication as directed, and TasP can improve the health of people living with HIV, as well as lowering the amount of HIV in the bloodstream, which reduces the chances of transmitting the virus. Each of these approaches faces some obstacles, if not in the science that proves them effective, then in their widespread implementation in all communities in the United States.
Among these obstacles—which include helping people who take both PrEP and TasP access and adhere to these drug regimens, educating medical providers about PrEP, and paying for PrEP treatments, in particular—the conference focused on two systemic barriers. First, recent changes in health care funding has created substantial challenges for the very frontline agencies whose staff are most in contact with people at highest risk. Chief among these is “sustainability.” Second, stigma and other structural inequalities make it difficult for people at highest risk—men who have sex with men, transgender people, injection drug users, African Americans, and Latinos/Latinas—to access services.
The Patient Protection and Affordable Care Act (PPACA) and other regulatory changes to the health care system have had or will have substantial impacts on the sustainability of both HIV prevention and care agencies. For example, increased insurance coverage and eliminated cost sharing for preventive healthcare will likely reduce federal spending for HIV testing and other prevention interventions. Likewise, the elimination of preexisting condition exclusions and spending limits in health insurance policies has resulted in greater enrollment in private insurance and reduced the need for special funding to cover the treatment of uninsured people living with HIV.
These reductions in HIV-specific funding will not necessarily result in reductions in care, but they will require agencies that have historically relied on federal support to secure alternative funding. The good news is that some organizations are envisioning this shift as an opportunity to develop a more sustainable structural and fiscal organization. One model is for organizations to merge; another is to expand internal capacity into other areas; a third is to grow through strategic partnerships with or contracts from other agencies. The troubling news is that these models require the capacity and infrastructure to execute significant organizational development and restructuring. It remains to be seen what will happen to some smaller organizations for whom these models do not work, but two slogans reverberated at the conference: “integrate or deteriorate” and “merge, grow, or go.”
If sustainability presents new challenges—the result of innovations in HIV care and health care funding—structural inequalities, caused by forces such as, racism, poverty, homelessness, substance use, and mental illness, represent old and stubborn ones. Among these, the conference, including an AHP presentation, focused particular attention on HIV-related stigma. For example, the fear of the negative social consequences of HIV testing or seeking care if HIV positive may deter people from taking action, since the disclosure of HIV-positive status—and even of the intention to test—may lead to stigmatizing responses, including rejection, discrimination, and partner violence. The likelihood that a given individual will experience stigma or consequences like these varies from person to person and community to community, but the fear of stigma, as well as its manifestation, continues to impede HIV prevention at personal and community levels.
At the conference, two AHP trainers, Francisco Nanclares and Jen Shockey, facilitated a roundtable—“Addressing Stigma and Discrimination in HIV Testing Programs”—designed to improve the abilities of HIV counselors to assess and respond to HIV-related stigma in the lives of HIV-positive clients. Addressing internalized stigma and its impact on counselors, themselves, is one of the best ways of reducing discrimination and stigma for clients. Shockey and Nanclares asked roundtable participants to look at the contexts in which each had felt stigmatized and, alternately, had stigmatized others. Further, participants, who lauded the roundtable, shared ways to create less stigmatizing environments for their clients.
The good news at the conference was that despite the continuing effects of stigma and other structural inequalities, data suggest that some interventions are getting through. More than 87% of people living with HIV in the United States, know their status. And although there has been an increase in the rate of new infections among Latinos, there has been a dramatic decrease in the rate of new HIV infections among women and among African American men. For those of us who remember the stretch of despair that ran through the 1980s and much of the 1990s—and AHP has been there for its clients through that whole time—the great promise of widespread diagnosis, powerful prevention tools, and dramatically improved treatment fuels our efforts to focus even more intently on the barriers that remain.