Reflecting on HIV/AIDS care and the road ahead, by Dr. Linda Moneyham

Linda Moneyham, PhD, RN, FAAN

I’ve been in nursing long enough to remember the emergence of the first cases of what would eventually be labeled Human Immunodeficiency Virus (HIV). Across health care in the late 1970s and early 1980s, we began hearing of cases of previously healthy adults being hospitalized with what was thought to be acute respiratory distress syndrome, but for whom the usual treatments did not work. This frequently resulted in the death of the patient. I can remember the worry and concern expressed by health care providers that this was a new and little understood disease that was fatal, and possibly highly infectious.

With the passing of time, the understanding of HIV evolved. It was believed that it was sexually transmitted, and that a person could be infected and not be symptomatic for a long period of time. We also learned that the virus rapidly replicated and eventually led to a new stage that by 1982 was called Acquired Immune Deficiency Syndrome (AIDS). With the diagnosis of AIDS, an individual was very immune compromised and quite ill, and during the time when effective treatments were not yet available, death was imminent.

The number of news cases was increasing rapidly, and we were faced with a major epidemic. However, the virus was still surrounded by misunderstandings.

Because the earliest cases appeared among the population of gay men, HIV/AIDS was initially thought to be a disease of homosexual men and sexually transmitted. This belief contributed not only to stigmatization of the disease, but also to failure to screen other populations for the disease. What resulted were delays in diagnosis of HIV/AIDS in women and heterosexual men.

When I began conducting HIV/AIDS research in 1992, health care providers were not even screening women for the disease. Consequently, women were being diagnosed at late stages, when they were already very sick with full blown AIDS. They often died soon after the disease was identified.

At the time I began working with women with HIV/AIDS, and there were few services available for them. The gay community had created volunteer, community-based organizations for men with HIV/AIDS. Such organizations did what they could to serve the women infected with the virus, however, my research and that of my collaborators demonstrated the issues and concerns of women infected with HIV were quite different from men. They very often needed different supportive resources and services. For example, in the early 1990s, the absence of effective treatments meant victims of the virus viewed HIV/AIDS as a death sentence, so their primary concern was who would care for their children after their death. Resources to abate this concern were not available.

The need for supportive resources and services were greatest during the early stages of the epidemic. In 1993, I was asked by a local church that had a gay ministry if I would be willing to lead a support group for their gay members with HIV/AIDS. Wanting to do whatever I could to support those affected by the epidemic, I gladly accepted. Unfortunately, the support group was short lived. Within six months, all but one of the members of the support group had died.

These reflections offer a stark contrast to the state of HIV/AIDS care today. As we approach World AIDS Day, I am filled with so much gratitude for how far we have advanced in the treatment of HIV/AIDS. I am also sad when I think about all those who died before the advent of viable treatment options. Once thought of as a death sentence, HIV/AIDS is now considered a chronic disease with full life expectancy for those who accept and adhere to recommended treatments. Many people with HIV lead full lives with relatively good health.  Although there is not yet a cure for HIV/AIDS, we have come a long way.

It remains important, however, that we not forget that there is still much work to be done. Now that people with HIV/AIDS are reaching older adulthood, we are encountering are new health issues to contend with, resulting from long-term infection with the virus and possible side effects of available treatments, such as greater risk for and earlier onset of cardiovascular disease and dementia. However, there are researchers who are doing what they can to bring greater understanding and clarity to these issues and who are working to develop new treatments.

HIV research being conducted in Dr. Paul Goepfert’s clinical research laboratory centered on the testing of preventative HIV vaccines, 2017.

At UAB, HIV research is a huge enterprise. UAB is involved in HIV-related research at all levels, from bench research to drug trials to behavioral interventions to improve quality of life. In the School of Nursing, faculty are leading investigations focused on cognition of older adults with HIV, long term outcomes of women with HIV, and strategies to improve adherence to care.

I am very thankful for the researchers who for nearly 40 years have refused to be discouraged in their efforts to improve the life and health of those who are impacted by this once devastating now chronic disease.

Moving forward, let us be thankful but not complacent.

Linda Moneyham, PhD, RN, FAAN, is a UAB School of Nursing Professor and Senior Associate Dean for Academic Affairs. She has served as a Senior Scientist in the UAB School of Medicine Center for AIDS Research since 2007, and has more than 20 years of experience researching HIV/AIDS.