School of Nursing Researchers Discuss Continuing Stigma and Recent Strides in HIV, AIDS Research

The School of Nursing's Interdisciplinary Sexual Health and HIV Research (INSHHR) Group discussed continuing struggles and strides within HIV research, policies, and public health strategies during a panel discussion to help mark World AIDS Day on Dec. 13. The discussion was hosted by the Council for Diversity, Equity, and Inclusiveness and Student Affairs Office.

Since 1988, December has begun by celebrating World AIDS day, a global opportunity for people all around the world to convene and champion for the lives of the 38 million people currently living with HIV, as well as the countless others who have died from AIDS related illnesses.

Each year, December 1 commemorates the tireless activism of social groups such as ACT UP, as well as the numerous researchers, health care providers, public health professionals, and citizens, whose efforts has shifted the needle on the public discourse and understanding about HIV and AIDS.

INSHHR is an interdisciplinary collective of student and faculty scholars whose research centers on HIV and sexual health. The panel discussion included the following INSHHR members:

• James McMahon, PhD
• Chen Zhang, PhD, MPH
• Mitchell J. Wharton, PhD, RN, FNP-BC, CNS
• Danielle C. Alcéna-Stiner, PhD, RN
• Lindsay Batek, ND, BSN, RN
• Rose Muheriwa, PhD
• Faith Lambert, MS, RN, FNP-BC
• Martez D.R. Smith, LMSW

The following features some highlights of this rich and informative discussion, but you can check out the full conversation here: 

Our conversation began with the panelists sharing their motivations for becoming HIV scholars, which revealed a shared passion for equity and for focusing on populations who are often located on the margins of research, either due to a lack of representation within the field of practice, or to disparities and the persistence of the stigma within health care practice, or to policies that fail to recognize the unique needs of those living with or directly affected by HIV.

One way of mitigating and possibly eliminating such persistent stigma would be as McMahon stressed, to treat HIV as if as if it is any other chronic condition that can be treated with medicine and ongoing care. Wharton added, there is a need for policies that would support programs such as needle exchange among intravenous drug users that could cultivate harm prevention as well as HIV prevention, rather than continue the stigmatized perception that needle exchange programs promote continued drug use.

Zhang emphasized further ways stigma can interfere with HIV prevention, for example certain populations such as sex workers, may seek out treatments like PReP (pre-exposure prophylaxis) that can prevent HIV transmission, but they are instead stigmatized  for their work and their sexual behaviors, thus further traumatized by providers.

Alcéna-Stiner and Muheriwa emphasize the effects stigma can have on the ability for young people to receive accurate information and education about sexual health, which has the potential for mitigating HIV transmission by empowering younger people with the information they need to make healthy decisions in their sexual behaviors.

Batek adds that the ways in which schools incorporate HIV and sexual health education can also impact the unique situations of children, such as children from migrant communities, who’s transient lives can disrupt their access to health information from schools in addition to intermittent visits to their providers, which disrupts the ability to approach conversations concerning sexual health. A conversation, as Lambert reminds, that many providers may not even broach in the first place no matter the patient.

Despite the struggles with stigma that continue to persist, the panelists were able to identify significant strides within HIV research, policies, and public health strategies.

McMahon emphasized an increase in the tools available for HIV prevention beyond distributing condoms, such as the emergence of PReP, a daily oral medication that has demonstrated nearly 100 percent prevention of HIV transmission.

Wharton added, that changes in the US’s HIV strategy is evident of a sustained, collective mobilization to advance continued HIV policy and research. In addition, for the first time in its history a U.S. President has appointed an openly-gay man who is living with HIV, to helm the Office of National AIDS Policy (ONAP).

However, further achievements are still needed, as Smith recalls, there remains significant challenges in the ways marginalized communities can access PReP,  when pharmaceutical companies continue restricting the production of genetic versions of this life-saving medicine that could significantly increase access amongst underserved communities.  

As we wrapped up our conversation, the panelists shared some final thoughts that returned us to the group’s commitment to focusing on research and advocacy for populations requiring further representation within research.

Expanding the diversity of populations featured in research, could provide opportunities for people to no longer exist at the margins, by seeing themselves and their lived experiences represented within research that could further empower more communities to seek out information, to be informed about proper care, and to advocate for proper education, policies, and practices that advance HIV prevention.

Read more about the Interdisciplinary Sexual Health and HIV Research (INSHHR) group. 

Hocker is an assistant professor of clinical nursing and the school’s deputy Title IX coordinator. This story is a part of the Council for Diversity, Equity, and Inclusion’s December newsletter.