NIH OAR Marks 35 Years of Advancing HIV Research

HIV has been one of humanity’s deadliest and most persistent pandemics. When the first AIDS cases were reported in 1981, few therapeutic options were available, and life expectancy for people with HIV was only three years after diagnosis. People with HIV and their advocates pushed the U.S. government to respond. In 1988, Congress passed the Health Omnibus Programs Extension (HOPE Act), which established the Office of AIDS Research (OAR) at the National Institutes of Health (NIH) to coordinate HIV and AIDS research across NIH. OAR was the first and remains the only NIH-wide office dedicated to one specific condition.

This incredible charge highlighted the urgent need for research to help populations that were especially impacted, including LGBTQ+ communities, women, children, people with hemophilia, and people of color. Since the beginning, advocates and activists from these communities have influenced HIV and AIDS research. Through focused demands for action, community engagement, and increased funding, advocates and legislators were a driving force who urged researchers and federal agencies to determine the cause of AIDS, aiming toward effective prevention, treatment, and cure.

In 1993, the NIH Revitalization Act expanded OAR’s authority to develop a strategic plan for NIH HIV and AIDS research; allocate the budget for NIH HIV and AIDS research and execute budget transfer authority (providing flexibility to manage the NIH HIV research program); establish an advisory council (now known as the OAR Advisory Council, or OARAC); and submit an annual Professional Judgment Budget that estimates the amount of funding beyond annual appropriations to fulfill the goals of the NIH HIV and AIDS research agenda.

In the 1990s, NIH research led to the development of antiretroviral therapy (ART) to prevent people with HIV from developing AIDS. Combinations of ART became widely available, and the Centers for Disease Control and Prevention (CDC) reported a 47 percent decline in AIDS-related deaths in the United States. NIH clinical research on treatment for HIV nearly eliminated perinatal transmission.^1,2,3

At the end of the decade, the U.S. outlook on HIV shifted to encompass the global picture. Members of the Congressional Black Caucus worked tirelessly to ensure that the global U.S. AIDS response addressed the Black population, particularly in sub-Saharan Africa, which was devastatingly impacted by HIV and AIDS. In 2003, President George W. Bush established the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), and Congress authorized $5 billion in funding for the program. NIH partners with PEPFAR to combat the global pandemic. Lessons learned from domestic and global approaches continue to inform each other today.

In the 2000s, conclusive evidence from NIH clinical research demonstrated that people with HIV who achieve and maintain undetectable levels of HIV in their blood (viral load) cannot sexually transmit the virus to others, a finding known as “undetectable = untransmittable.”^4,5 Breakthroughs also led to well-tolerated and long-acting treatment that halts disease progression and protects sexual partners from HIV transmission. These and other scientific advances resulted in an improved quality of life and a near-normal life expectancy for people with HIV who have access to treatment and services.

Today, the NIH HIV research program spans more than 3,500 projects in 96 countries. OAR continues to work across the NIH Institutes, Centers, and Offices (ICOs), collaborating with federal and community partners to ensure that NIH HIV funding is directed at the highest-priority research areas to meet public health needs. These multidisciplinary areas span basic science to implementation research, contributing to groundbreaking innovations in HIV prevention, treatment, and cure, as well as influencing scientific topics beyond HIV. As a recent example, the HIV research infrastructure, with community engagement approaches developed by HIV networks, strengthened COVID-19 vaccine trials.⁶

Despite this progress, much work remains. The NIH HIV research agenda has always been intentionally shaped by the needs of the communities affected by HIV. Now, 35 years after OAR was established, community priorities continue to evolve, especially as people live longer and age with HIV. Of note: 

• Half of all people with HIV living in the United States are age 50 or older, with about 17 percent of new infections occurring annually in this age group.⁷ Research to identify and address the long-term health needs of people aging with HIV across the care continuum is necessary to support this increasing population and their care providers. 
• As of 2021, 38.4 million people globally were living with HIV, including 20 million women and girls, over half the global prevalence. Transgender women have 14 times the risk of HIV acquisition, compared to cisgender women. 
• Currently, there are few point-of-care options for viral load monitoring or even HIV self-testing because costs are prohibitive. 
• Black/African American and Hispanic/Latino communities are disproportionately affected by HIV compared to other racial and ethnic groups. In addition, there are clear racial inequities in access to pre-exposure prophylaxis (PrEP). 
• Despite advances in HIV treatment and prevention, risk of HIV transmission is still high among gay, bisexual, and men who have sex with men, in part because of stigma and barriers to accessing prevention and treatment services. 

Critical to accomplishing our mission is to understand the perspectives of people with HIV. OAR has led Listening Sessions with federal, academic, and community partners to guide the NIH HIV research program, so that research priorities are responsive to emerging challenges and needs. Focusing on multidisciplinary topics that span the missions of several NIH ICOs, OAR has established signature programs that seek to understand and support community needs on HIV and aging, HIV and women’s health, and advances in HIV technologies with innovative affordable and accessible products. OAR is committed to supporting early career investigators in HIV research, ensuring that the HIV research workforce is strengthened through diversity and reflective of the communities most affected by HIV. 

Since 1988, OAR has coordinated HIV research across NIH, convening multiple partners to catalyze interdisciplinary efforts. In 2023, our goal remains the same: to end the HIV pandemic and improve the health of people with HIV. We must focus on action: to prevent, to treat, and to cure HIV. These actions will require continued commitment, innovation, and creativity. To reduce any efforts now would inevitably lead to the resurgence of HIV worldwide, compromising global health in the 21st century. To quote Rep. Barbara Lee, co-chair of the Congressional HIV/AIDS Caucus, “We remember those that we have lost in the struggle against this disease and the millions across the globe that continue to fight against it.”⁸

We must continue to respond to new challenges, leverage new and existing partnerships, and ensure all voices can contribute. Together, we can end the HIV pandemic.

References

1 - Connor EM, Sperling RS, Gelber R, et al. Reduction of maternal-infant transmission of human immunodeficiency virus type 1 with zidovudine treatment. Pediatric AIDS Clinical Trials Group Protocol 076 Study Group. N Engl J Med. Nov 03 1994;331(18):1173-80. doi:10.1056/NEJM199411033311801. pubmed.ncbi.nlm.nih.gov/7935654

2 - Tuomala RE, Shapiro DE, Mofenson LM, et al. Antiretroviral therapy during pregnancy and the risk of an adverse outcome. N Engl J Med. Jun 13 2002;346(24):1863-70. doi:10.1056/NEJMoa991159. pubmed.ncbi.nlm.nih.gov/12063370

3 - Little KM, Taylor AW, Borkowf CB, et al. Perinatal Antiretroviral Exposure and Prevented Mother-to-child HIV Infections in the Era of Antiretroviral Prophylaxis in the United States, 1994-2010. Pediatr Infect Dis J. Jan 2017;36(1):66-71. doi:10.1097/INF.0000000000001355. pubmed.ncbi.nlm.nih.gov/27749662

4 - Cohen MS, Chen YQ, McCauley M, et al. Antiretroviral Therapy for the Prevention of HIV-1 Transmission. N Engl J Med. Sep 01 2016;375(9):830-9. doi:10.1056/NEJMoa1600693. pubmed.ncbi.nlm.nih.gov/27424812

5 - Eisinger RW, Dieffenbach CW, Fauci AS. HIV Viral Load and Transmissibility of HIV Infection: Undetectable Equals Untransmittable. JAMA. Feb 05 2019;321(5):451-452. doi:10.1001/jama.2018.21167. pubmed.ncbi.nlm.nih.gov/30629090

6 - National Institutes of Health. How Lessons from HIV Research Informed COVID-19 Vaccine Trials. May 12, 2022. covid19.nih.gov/news-and-stories/how-lessons-hiv-research-informed-covid-19-vaccine-trials

7 - Centers for Disease Control and Prevention. HIV by Age. Reviewed June 28, 2022. www.cdc.gov/hiv/group/age/index.html

8 - Congressional HIV/AIDS Caucus Co-Chairs Call for End to Health Disparities on 34th Annual World AIDS Day. News release. Congresswoman Barbara Lee. lee.house.gov/news/press-releases/congressional-hiv/aids-caucus-co-chairs-call-for-end-to-health-disparities-on-34th-annual-world-aids-day-