Forever Grateful : AJN The American Journal of Nursing

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Forever Grateful

Treston, Carole MPH, RN, ACRN, FAAN

AJN, American Journal of Nursing 122(12):p 13, December 2022. | DOI: 10.1097/01.NAJ.0000904032.43611.84
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Abstract

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Figure:
Carole Treston

When AJN asked me to comment on Dr. Anthony Fauci's retirement, and how he influenced my career in HIV nursing, I reached out to a friend who was a former patient of his at the National Institutes of Health (NIH) clinical research center in Bethesda, Maryland. He recounted those early years of the epidemic, describing how Dr. Fauci created a stigma-free space, an oasis in a very frightening time. He told me, “Tony set the bar high—everyone followed his lead and believed and practiced the same thing. Nurses, nurse's aides, reception staff—all genuinely cared and treated patients with respect. No shame, no stigma in that place.”

This may not seem like a big deal now, when respect for patients is a cornerstone of health care and research, but at the time it was a rare example of leadership. This was a time when fear, driven by lack of knowledge, was overwhelming. Patients with AIDS were ostracized, trapped in isolation protocols, judged for an illness they contracted, evicted from their homes, fired from their jobs, abandoned by their families, and even refused funerals by most funeral homes. Organizations like the Association of Nurses in AIDS Care were formed to provide a network of support and to disseminate the little information available.

I was barely out of nursing school at the time, working in an early AIDS unit at a hospital in Philadelphia. Like other AIDS care teams across the country, we were desperate for information. Within a year, we were participating in early NIH and industry-sponsored AIDS clinical trials. I became a study nurse and attended my first AIDS Clinical Trials Group meeting in 1990. That changed everything. Twice a year, investigators and study teams from across the country were updated on the latest advances (and disappointments) in this rapidly moving field. The advancement in knowledge and evidence, before the advent of high-speed computers, is difficult to fully appreciate in this era of rapid information.

This was all led by Dr. Fauci, director of the National Institute of Allergy and Infectious Diseases (NIAID). He led teams that identified the complex structures and pathogenesis of HIV; noted its impact on and relationship to various aspects of the immune system, especially CD4+ T cells; discovered the HIV life and replication cycles; and proposed strategies to interrupt the virus at certain points. These breakthroughs were the building blocks for future treatments and also laid the groundwork for miracle drugs to cure hepatitis C and for approaches to treat other viruses, including COVID-19.

In my opinion, one of the most important advances in the understanding of HIV was through the NIAID-sponsored pediatric AIDS clinical trial 076, which showed that treating HIV-positive pregnant women reduced the risk of infecting their fetus or newborn by more than 80%. This outcome not only changed the course of pediatric AIDS and HIV around the globe, but also contributed to our knowledge of HIV transmission and strategies for biomedical prevention. Eventually, the understanding of viral suppression as a treatment and prevention strategy led to the standard of early and consistent treatment of people with HIV. Subsequent clinical trials provided the evidence for pre-exposure prophylaxis (PrEP). Multiple studies confirmed that if HIV-negative individuals took PrEP once a day, they were protected from HIV transmission during sex. PrEP is now a covered standard of care for those at risk for HIV and the biggest contribution to HIV prevention globally.

Under Dr. Fauci's leadership, other advances in HIV treatment emerged during those years. Fixed-dose combination therapies were a major breakthrough. Some were skeptical that combining two drugs from different pharmaceutical companies was even possible, but it changed the outcomes and quality of life for many with HIV. Patients had been taking 15 to 20 pills throughout the day, and now for most the regimen was one or two combination pills once a day.

After further research demonstrated that a person living with HIV who adheres to treatment and has an undetectable viral load cannot sexually transmit HIV, Dr. Fauci endorsed this undetectable = untransmittable concept, or U = U, a message that continues to change the lives of people with HIV today. U = U is possibly the biggest stigma reducer in the 40 years of HIV.

Dr. Fauci was also the principal architect of PEPFAR, the President's Emergency Plan for AIDS Relief. Through PEPFAR, the U.S. government has invested nearly $100 billion in the global HIV–AIDS response, saving 21 million lives, preventing millions of HIV infections, and accelerating progress toward controlling HIV–AIDS in more than 50 countries.

For nearly 40 years, Dr. Fauci has led a massive global enterprise of bench and clinical research that has been translated into standards of care across the globe. He has expanded the funding for this work through bipartisan congressional and White House support and has maintained effective relationships with both the pharmaceutical industry and the communities decimated by AIDS. His leadership guided the work of legions of investigators and study teams throughout the world. His vision encouraged others to reach further for the next scientific breakthrough, no matter how incremental. His attention to detail and to the evidence demanded that all of us follow suit and make sure the data were complete and validated. And his commitment to patients and community involvement allowed us to create clinical sites and community advisory boards that fully embraced that ideal. I am forever grateful.—Carole Treston, MPH, RN, ACRN, FAAN, executive director, Association of Nurses in AIDS Care

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