HIV Advocacy: Why Stories Change More Than Hearts

By: Michelle Anderson, MA, Grassroots Advocacy & Patient Storytelling Consultant, ADAP Advocacy

**First-Person Perspectives**

I have been in advocacy for more than 20 years, and for years, I have sat in rooms where decisions were being made for people like me without including people like me in the conversation. I have listened to presentations filled with statistics, charts, and research findings that spoke completely over my head. I have listened to reports that described the disparities affecting Black women living with HIV, but those reports were not always an accurate depiction because they did not provide a complete narrative of Black women's experiences when faced with the systemic pressures that create risk for HIV beyond behavior. Although the data is important and research matters, something is still missing.

Photo Source: Narrative Power Institute

I often say that stories are more than personal experiences. They are a form of knowledge that speaks beyond what data cannot convey. They help us understand how policies, systems, and institutions impact real lives. They reveal the human reality behind data and create opportunities for change that numbers alone often cannot achieve because they connect the numbers to human impact.

For instance, when a Black woman living with HIV shares her experiences, it brings context to the conversation. It helps people understand that HIV is not a single issue. It is often connected to issues like poverty, trauma, housing insecurity, gender-based violence, lack of healthcare access, and systemic racism. These are realities that cannot be fully captured in a report because statistics only tell the story of the disproportionate impact of HIV.

Storytelling makes systems visible. It helps us move away from stigmatizing rhetoric that blames individuals and toward examining the conditions that shape people's realities. Instead of asking why someone did not make a different choice, storytelling helps us understand why the decision was made, given the options available to them and the conditions that shaped those options.

I have seen firsthand how stories can change a room. I have watched policymakers lean in when they hear someone describe the choice between paying rent and paying for healthcare. I have seen healthcare providers reconsider their assumptions after listening to a patient who may have fallen out of care due to transportation barriers. I have watched community members connect with issues they previously viewed as distant or unrelated to their own lived experiences. Stories create understanding, empathy, accountability, and, most importantly, they create movement.

Photo Source: ADAP Advocacy

That same principle is at the heart of the work currently underway through the "ADAP Saves Lives: End the Wait" campaign, which was launched in response to the reemergence of ADAP waiting lists and restrictions in some parts of the country. For those of us who have been in this fight nearly 20 years ago, the thought of people once again waiting for access to life-saving HIV medication is deeply concerning. Storytelling is an essential advocacy tool because behind every policy decision is a person whose health may be affected. By elevating the voices of persons living with HIV, storytelling helps policymakers and communities understand what is truly at stake when access to care is threatened.

Meaningful Involvement of People Living with HIV/AIDS (MIPA) recognizes that people living with HIV should be involved, utilizing our lived expertise as leaders, decision makers, and partners in shaping the policies and programs that impact our lives. When people share their experiences in legislative hearings, advisory boards, advocacy campaigns, and community discussions, they provide evidence-informed solutions grounded in real-time experiences. This is when narrative begins to build power.

Narrative power is the ability to shape how people understand an issue. It is the ability to influence systems by challenging stigma, exposing data gaps, and moving conversations beyond awareness to impact. By shifting the narrative, our stories change perspectives, influence policy, and become the power that shapes how systems operate and whose voices are valued within them.

Photo Source: ADAP Advocacy

I believe that the people closest to the issues are often closest to the solutions. Lived experiences belong at decision-making tables because stories are more than personal testimonies. They are tools for leadership, advocacy, and systems change. Stories do change hearts, but they also change how people understand issues, how policies are shaped, and how systems respond to the communities they serve.

Stories do change hearts, but the power does not stop there. They help people understand, in real time, the realities behind data and the impact systems have on people’s lives. When we share our stories, we are challenging stigma, educating communities, informing policy, and creating opportunities for change. We move beyond awareness and into action. We transform our lived experiences into narrative power. This month marks the beginning of ADAP Advocacy’s narrative power to combat the resurgence of those dreading AIDS Drug Assistance Program waiting lists. Patient’s lives depend on it!

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

HealthHIV Releases State of Aging with HIV Survey Results

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

HealthHIV has released its fifth annual survey on the State of Aging with HIV™, finding both positive and negative results from patients and providers alike. This report details survey findings and implications across five areas: HIV and Geriatric Care, Comorbidities, Behavioral Health, Access and Payment, and Workforce.

HealthHIV summarized the survey as follows:

"The survey revealed an HIV care system that delivers clinical wins. Over 98% of consumers reported being virally suppressed, and nearly 100% are taking antiretrovirals, the highest rates across five waves of the survey. The same data, however, show that the broader clinical reality of aging with HIV, multimorbidity, frailty risk, mental health burden, and the structural conditions of daily life, is not being managed with the same consistency."

Photo Source: HealthHIV

Key findings include:

Viral Suppression is High Among Older People Living with HIV/AIDS

Among People Living with HIV/AIDs (PLWHA) surveyed, 98% reported that their HIV was virally suppressed. This is significantly better than the national average of 62% (CDC, 2026).

While viral suppression was reported to be high, respondents indicated that age-related testing, screening, and other geriatric care were significantly lacking. Just 17% of respondents reported being screened for HIV-related medical frailty, with screenings for frailty declining from 25% of patients under the age of 65 being screened in 2022 to just 11% in 2026. HealthHIV found that patients with lower incomes were significantly less likely to be screened at all.

PLWHA Are Heavily Burdened by Comorbid Non-HIV Chronic Conditions

More than 80% of respondents indicated that they have at least one non-HIV-related chronic condition for which they are currently taking prescription medications, of whom 22% reported having to change their antiretroviral (ARV) medication due to a contraindication with another drug.

HealthHIV’s analysis of responses found that more than 25% of respondents have very high medical needs, but are underserved.

Photo Source: HealthHIV

Behavioral and Mental Health Issues Are Prevalent Among Older PLWHA

More than 75% of respondents indicated having moderate or high levels of stress, but fewer than 2% of respondents identified mental health as being an immediate need. Many respondents indicated that they had a “good” quality of life, but also carried high levels of stress. HealthHIV suggests that this finding indicates that respondents place more importance on the outward appearance of wellness while simultaneously ignoring or disregarding mental health as a part of a “good” quality of life.

Research has found that high levels of psychological stress can have negative impacts on PLWHA and their physical health and health outcomes. For example, traumatic and stressful life experiences have been associated with reduced adherence to treatment regimens, virologic failure, higher rates of mortality and opportunistic infections, increases in the use of recreational drugs in such ways that may result in behaviors detrimental to the health of both the patient and others, and arterial inflammation (Reif et al., 2013; Chow et al., 2023).

Access to and Paying for Medications and Treatment is Likely to Get Tougher for PLWHA in the Future

While existing programs and insurance coverage of ARV treatments are currently working, HealthHIV reports that those systems, like PLWHA who are aging, are becoming increasingly frail.

HealthHIV highlights reports that state AIDS Drug Assistance Program (ADAP) budgets are becoming increasingly strained, and that the reintroduction of waiting lists (Hopkins, 2026) in Iowa and Utah presages tough times ahead for PLWHA who are aging.

Photo Source: HealthHIV

According to the survey, fewer than half of respondents had retirement plans (largely because many didn't expect to live into their 50s), almost one-third reported food insecurity, and one in five avoided care due to cost.

Respondents to HealthHIV’s survey reported that transportation remains the strongest single barrier to accessing care and treatment, with lower-income patients being six times more likely to miss an HIV appointment because they cannot get to the appointment. Additionally, HealthHIV reports that more than half of Medicare enrollees still rely on the Ryan White HIV/AIDS Program (RWHAP) and ADAP to access HIV medications.

Providers Are Largely Unequipped to Effectively Treat Aging PLWHA

Providers who responded to HealthHIV’s survey reported that, while they understand that aging PLWHA face unique needs that require specialized care, they currently lack the staff, funding, or expertise to provide these services.

HealthHIV found that just 1.2% of provider respondents specialized in gerontology, compared with 21% with specializations in HIV medicine. Moreover, they found that workforce turnover is eroding the institutional knowledge and awareness of both the history of the HIV epidemic and the cultural and lived experiences of aging PLWHA.

Photo Source: HealthHIV

Regarding aging-care readiness among patients, providers reported troubling trends. Among them, only half were aware of the protections afforded to them under the Americans with Disabilities Act (ADA), a fact that is particularly important for end-of-life planning. Fewer than one-fourth of providers offer advance care planning, which is compounded by the fact that only 16% of caregivers report having adequate support.

In Closing

HealthHIV has made available the final report for its fifth State of Aging with HIV™ survey on its website at healthhiv.org/stateof/agingwithhiv/. On May 6th, HealthHIV hosted an educational webinar, and free access to this on-demand webinar is available online, along with the presentation slides. 

At this point in history, more than half of PLWHA are over the age of 50, making this research essential to maintaining a robust and effective HIV care continuum. 

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

References:

[1] Centers for Disease Control & Prevention. (2026, March 16). Behavioral and Clinical Characteristics of Persons with Diagnosed HIV Infection—Medical Monitoring Project, United States, 2023 Cycle (June 2023—May 2024). Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: HIV Data: Medical Monitoring Project. https://www.cdc.gov/hiv-data/mmp/behavioral-clinical-characteristics-pwh-2023.html

[2] Chow, F. C., Mundada, N. S., Abohashem, S., La Joie, R., Iaccarino, L., Arechiga, V. M., Swaminathan, S., Rabinovici, G. D., Epel, E. S., Tawakol, A., & Hsue, P. Y. (2023, October). Psychological stress is associated with arterial inflammation in people living with treated HIV infection. Brain, Behavior, and Immunity, 113, 21-28. https://doi.org/10.1016/j.bbi.2023.06.019

[3] HealthHIV. (2026). Findings and implications from HealthHIV State of Aging with HIV Fifth Annual Survey. Washington, DC: HealthHIV: State of. https://healthhiv.org/stateof/agingwithhiv/

[4] Hopkins, M. J. (2026, May 14). The ADAP “Perfect Storm” Returns; Over 1,000 Patients Being Denied Care. Nags Head, NC: ADAP Advocacy: Blog. https://adapadvocacyassociation.blogspot.com/2026/05/the-adap-perfect-storm-returns-over.html

[5] Reif, S., Mugavero, M., Raper, J., Theilman, N., Leserman, J., Whetten, K., & Pence, B. W. (2011, February). Highly Stressed: Stressful and Traumatic Experiences among individuals with HIV/AIDS in the Deep South. AIDS Care, 23(2), 152-162. https://doi.org/10.1080/09540121.2010.498872

Treatment of HIV with ART Slows Advanced Biological Aging Process

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

Research presented at the European Society of Clinical Microbiology and Infectious Diseases (ESCMID) Global conference in Munich, Germany, has found that early initiation of antiretroviral therapy (ART) for HIV reduces accelerated aging in people living with the virus (Ryan et al., 2026).

Photo Source: ESCMID

While this research is currently in pre-print form, meaning that it has not been peer reviewed for final publication, it could help to provide additional ammunition in the argument that initiating ART as soon as possible can help People Living with HIV/AIDS (PLWHA) live longer, healthier lives.

Researchers developed a plasma proteomic aging clock (PAC)—a tool used to estimate biological age, measuring the age of the body, as opposed to chronological age which measures a body’s age in terms of birth year to present. During the period prior to initiating ART, the PAC estimated that participants’ biological age was accelerated by a median of 10 years. With effective ART, this was reduced by nearly four years. 

How Does HIV Cause Accelerated Aging?

Research has suggested that, soon after the acquisition of HIV, the virus causes the human body to begin an accelerated aging process at the DNA level, contributing to the earlier onset of age-related diseases, such as heart and kidney diseases, medical and physical frailty, and cognitive difficulties (Rivero, 2022). Research published in 2022 found that this accelerated aging process begins within three years of the initial acquisition (Breen et al., 2022).

Earlier research also found that PLWHA may experience lipodystrophy—abnormal fat distribution—in both treated and untreated HIV, which can include the loss of subcutaneous fat in the face, extremities, and buttocks, as well as an increase in fat in the abdominal area, breasts, or at the top of the back, known as “buffalo hump.” This research also found that a combination of metabolic and immunologic changes can cause or exacerbate cardiovascular disease in PLWHA (Meir-Shafrir & Pollack, 2012).

Photo Source: MEDXY

What Does This Mean for People Living with HIV/AIDS?

Prior to 2012, people who had been diagnosed with HIV were not advised to begin ART until they had received an AIDS diagnosis after their CD4 (T-cell) count had fallen below 200 per microliter of blood (Castro et al., 1992). In March 2012, the Centers for Disease Control and Prevention (CDC) updated its treatment recommendations to recommend beginning ART as soon as possible, rather than waiting for an AIDS diagnosis (CDC, 2012).

This change has led to an overall decrease in the number of new diagnoses, in no small part due to the fact that PLWHA who are receiving ART and are virally suppressed have been shown to be unable to transmit the virus through sexual contact (CDC, 2024).

For PLWHA, early initiation of ART can help to slow down the accelerated aging process. This is true, also, for those currently receiving ART, which makes remaining on treatment and being virally suppressed even more important.

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

References:

[1] Breen, E. C., Sehl, M. E., Shih, R., Langfelder, P., Wang, R., Horvath, S., Bream, J. H., Duggal, P., Martinson, J., Wolinsky, S. M., Martinez-Maza, O., Ramirez, C. M., & Jamieson, B. D. (2022, July 15). Accelerated aging with HIV occurs at the time of initial HIV infection. iScience, 25(7), 104488. https://doi.org/10.5041/RMMJ.10089

[2] Castro, K. G., Ward, J. W., Slutsker, L., Buehler, J. W., Jaffe, H. W., Berkelman, R. L., & Curran, J. W. (1992, December 18). 1993 Revised Classification System for HIV Infection and Expanded Surveillance Case Definition for AIDS Among Adolescents and Adults. MMWR, 41(RR-17). https://www.cdc.gov/mmwr/preview/mmwrhtml/00018871.htm

[3] Centers for Disease Control and Prevention. (2012). Changes in US HIV Treatment Guidelines [Transcript]. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: Audio Rounds. https://tools.cdc.gov/podcasts/media/pdf/AudioRounds_HIV_Tx_Guidleines.pdf

[4] Centers for Disease Control and Prevention. (2024, October 24). HIV Treatment as Prevention. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: HIV Public Health Partners: HIV Treatment. https://www.cdc.gov/hivpartners/php/hiv-treatment/index.html

[5] Meir-Shafrir, K. & Pollack, S. (2012, October). Accelerated Aging in HIV Patients. Rambam Maimonides Medical Journal, 3(4), e0025. https://doi.org/10.5041/RMMJ.1008

[6] Rivero, E. (2022, June 30). Study shows HIV speeds up body’s aging processes soon after infection. Los Angeles, CA: University of California Los Angeles: UCLA Health: News: Release. https://www.uclahealth.org/news/release/study-shows-hiv-speeds-up-bodys-aging-processes-soon-after

[7] Ryan, B., Oumelloul, M. A., Rouached, S., Juillerat, A. D., Giacccheto, L., Thorball, C. W., Schoepf, I. C., Arribas, J. R., Soldevila, B. R., Kootstra, N., Reiss, P., Jackson-Perry, D., Haerry, D. H-U., Günthard, H. F., Bartl, L., Dollé, C., Russenberger, D., Nanni, P., Kockmann, T., … Tarr, P. E. (2026, March 26). A Plasma Proteomic Ageing Clock Reflects Advanced Ageing in People with Untreated HIV and its Reduction Under Antiretroviral Therapy. medRxiv. https://doi.org/10.64898/2026.03.24.26348875

United States' HIV Viral Suppression Complemented by State AIDS Drug Assistance Programs

By: Ranier Simons, ADAP Blog Guest Contributor

Population health decisions should always be evidence-based and informed by quality data. State AIDS Drug Assistance Programs (ADAPs), funded by the Ryan White HIV/AIDS Program (RWHAP), provide access to HIV antiretrovirals and other related prescription medications to low-income people living with HIV/AIDS (PLWHA) who are uninsured or underinsured. They also offer other support services that bolster PLWHA’s ability to manage HIV care. Without regard to its inherent value, the Trump Administration's FY2026 budget proposal calls for cuts to the RWHAP, which could adversely affect patients served by ADAPs. A recent study of longitudinal data proves that ADAPs are efficacious and valuable, deserving of more funding, not less (McManus, 2025). 

Photo Source: MedRxIV

A recent study, led by Dr. Kathleen McManus of the University of Virginia School of Medicine, evaluates how ADAPs have contributed to the United States' viral suppression rates from 2015 to 2022. The findings show that ADAPs are effective and their viral suppression outcomes are better than those of PLWHA, who do not receive ADAP-funded services. 

The retrospective longitudinal study explored ADAP participants’ viral suppression (VS) and viral load (VL) data compared to the PLWHA overall population from 2015 to 2022. The state-level data covered all 50 states and the District of Columbia, sourced from the National Alliance of State and Territorial AIDS Directors (NASTAD) National RWHAP Part B and ADAP Monitoring Project Annual Reports and the Centers of Disease Control and Prevention’s (CDC) National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) AtlasPlus (McManus, 2025). All jurisdictions for each year of the study were considered, only including data for a jurisdiction when the NASTAD and CDC data for any given year were both complete. Establishing set guidelines for data inclusion strengthened the validity of the findings.

Photo Source: NASTAD

Over the study period, there were some years where various jurisdictions were not included due to missing data. Overall, 81.9% to 96.4% of the population of PLWHA were included. From 2015 to 2022, the estimated number of PLWHA in the U.S. grew from 942,988 to 1,092,023. The number of ADAP clients from the overall population for each year ranged from 146,879 to 220,839, or 65.5% to 96.9%, respectively (McManus, 2025). 

The VS rate for PLWHA overall ranged from 60% to 66.3%. However, the VS rate for non-ADAP participants ranged from 53.2% to 59.4% compared to 81.2% to 91.4% for ADAP clients. This indicates that viral suppression was significantly higher among those served by state ADAPs. This finding is significant given that for the entire study period, ADAP clients were underrepresented among those eligible for assessment (McManus, 2025). In other words, the proportion of PLWHA ADAP clients overall was always higher than the proportion eligible for VS assessment. Additionally, for all the study years, the proportion of PLWHA who were ADAP clients was greater than the proportion of PLWHA who were ADAP clients with detectable VL. Notably, in 2020 and 2022, the proportion of ADAP clients was only 5.7%, although ADAP clients comprised 23.9% and 21.0%, respectively, for both years (McManus, 2025).

Consistently, ADAP clients comprised one-third (~33%) of all virally suppressed PLWHA nationwide while representing only 21.0% to 24.4% of the total PLWHA population (McManus, 2025). This data illuminates that ADAPs result in higher VS rates than the VS rates of the general population of PLWHA. The cost of HIV antiretroviral medications is not decreasing (McCann et. al, 2020). Moreover, PLWHAs live longer; thus, there is an increasing demand for assistance from ADAPs (McManus et al., 2013). It is not in the best interest of public health nor fiscal responsibility to cut funding to ADAP programs.

Photo Source: HRSA

It would be wiser to increase funding and establish policies that expand and innovate using RWHAP and ADAP funds. Viral suppression increases with ADAP-supported health insurance (McManus et. al, 2019). Supporting expanded ADAP enrollment efforts in addition to ADAP-covered premiums would expand access compared to the costs of providing medication directly for those without any insurance. Cutting RWHAP funds and subsequently ADAP funding would result in the loss of medication and care access for many PLWHA. Disruptions in medication and care access would decrease VS rates and potentially increase transmission rates and poor health outcomes. One CDC study showed that 63% of new HIV transmissions resulted from 34% of PLWHA who were aware of their status but were not virally suppressed (Li et. al, 2016). 

Achieving viral suppression is the most effective way to prevent HIV transmission. “Undetectable = Untransmittable” (U=U) is one of the most essential tenets of HIV treatment and prevention. U=U is possible because of the lifesaving and life-changing medications that ADAPs can provide. Federal funding for ADAPs has remained flat for years, especially for southern states (Nunn, 2014). Cutting funding would be detrimental to state ADAPs across the board. The study, headed by Dr. McManus, should be a data-rich wake-up call for policymakers aiming to reduce funding.

[1] Li, Z., Purcell, D., Sansom, S., Hayes, D., Hall, H. (2016). Vital Signs: HIV Transmission Along the Continuum of Care - United States. MMWR Morb Mortal Wkly Rep. 2019;68(11):267-272. doi:10.15585/mmwr.mm6811e1.  

[2] McCann, N., Horn, T., Hyle, E., Walensky, R. (2020, February 3).HIV Antiretroviral Therapy Costs in the United States, 2012-2018. JAMA Intern Med. 2020;180(4):601–603. doi:10.1001/jamainternmed.2019.7108. Retrieved from https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2759735#:~:text=School%2C%20Boston%2C%20Massachusetts-,JAMA%20Intern%20Med.,3

[3] McManus, K., Christensen, B., Nagraj, V., Furl, R., Yerkes, L., Swindells, S., Weissman, S., Rhodes, A., Targonski, P., Rogawski McQuade, E., & Dillingham, R. (2019). Evidence From a Multistate Cohort: Enrollment in Affordable Care Act Qualified Health Plans’ Association With Viral Suppression. Clinical Infectious Diseases, 71(10), 2572–2580. https://doi.org/10.1093/cid/ciz1123. Retrieved from https://academic.oup.com/cid/article/71/10/2572/5627781

[4] McManus, K., Engelhard, C., & Dillingham, R. (2013). Current challenges to the United States' AIDS drug assistance program and possible implications of the Affordable Care Act. AIDS research and treatment, 2013, 350169. https://doi.org/10.1155/2013/350169. Retrieved from https://pmc.ncbi.nlm.nih.gov/articles/PMC3614023/#:~:text=The%20demand%20for%20ADAP%20support,goals%3B%20and%20the%20recession%20continues.

[5] McManus, K., Killelea, A., Rogers, E., Liu, F., Horn, T., Steen, A., Keim-Malpass, J., Hamp, A., & Rogawski McQuade, E. (2025). State AIDS Drug Assistance Programs’ Contribution to the United States’ Viral Suppression, 2015-2022. https://doi.org/10.1101/2025.04.04.25325288. Retrieved from https://www.medrxiv.org/content/10.1101/2025.04.04.25325288v1.full.pdf

[6] Nunn, A. (2014, May). The Southern Epidemic: Are the South’s cultural, political and societal barriers making it difficult for public health programs, such as the AIDS Drug Assistance Programs,  to function effectively in this region? Retrieved from https://www.adapadvocacy.org/pdf-docs/2014_aaa_WP_The_Southern_Epidemic_05-15-14.pdf

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

DOGE-related Funding Cuts Upending HIV Care in Local Communities, Causing Chaos

By: Ranier Simons, ADAP Blog Guest Contributor

Federal funding cuts driven by the so-called Department of Government Efficiency (DOGE) are ongoing, affecting many elements of healthcare infrastructure nationwide. Amidst all the uncertainty, chaotic communications, and inconsistencies currently experienced by federal departments, agencies, and institutions, it’s essential to illuminate the local impacts. Nationwide, community organizations and patient advocates are speaking out to amplify the impact of these potential HIV funding cuts on treatment and prevention services from a front-line perspective. What follows is local voices speaking to local impact.

Photo Source: Let's Kick ASS Palm Springs

In Wisconsin, Vivent Health serves people living with HIV/AIDS (PLWHA) with an integrated model of care, including both clinical and social services. The clinical services include medical, dental, mental health, and pharmacy. Holistic HIV treatment and prevention entails testing and providing access to medication as well as social service support such as food and housing security. Via contractual relationships with the state, Vivent Health receives approximately $1.9 million from the Centers for Disease Control & Prevention (CDC), with most of the funds supporting care in the Milwaukee and southeastern Wisconsin areas (Peralta-Arellano, 2025). 

These funds are part of the approximately $1 billion in national funding for HIV testing, treatment, and prevention presently under scrutiny for significant cuts. Wisconsin does not have robust investment per capita in terms of public health; thus, the loss of funds would harm many of the communities Vivent Health serves. Bill Keeton, Vivent Health’s chief advocacy officer, explains, “At the end of the day, what it means is, if the $1.9 million in CDC-derived funding that Vivent Health receives goes away, we’re going to be unable to sustain the level of services and reach the number of people we need to reach to continue to successfully address the HIV epidemic in the state of Wisconsin. And that’s really unfortunate because we know that these programs are working” (Peralta-Arellano, 2025).

Marginalized communities are disproportionately affected by HIV and, thus, are disproportionately affected by funding freezes and cuts in funding. Columbus, Ohio-based Equitas Health system, which specializes in serving the LGBTQ community and PLWHA, is also alarmed at the potential for funding cuts (Johnson, 2025). The health system was already dealing with the effects of the Trump administration’s freeze on domestic and foreign aid in January. Announcements of HIV treatment and prevention cuts add urgency to the health system’s need to make plans to deal with the outcomes. According to David Munar, CEO of Equitas Health, “Ohio stands to lose not only the funding but also the ability to fight the epidemic in our state and curve the epidemic for our people.” He further explains, “Every case, every new infection means a lifetime cost of half a million dollars. So, it’s not even the human suffering, but economically, it’s also a big step back” (Johnson, 2025).

Photo Source: San Francisco AIDS Foundation

Suffering setbacks in HIV prevention and treatment would result in an increase in preventable HIV infections as well as decreases in the rates of viral suppression. The negative ramifications of these adverse effects are multifocal, given that Ohio has several active HIV criminalization laws. Six laws have resulted in 214 HIV-related prosecutions from 2014-2020.

Palm Springs, California, is especially vulnerable to potential cuts in HIV funding due to its demographics. It has one of the largest populations of PLWHA in the country as well as many PLWHA who are aging. Palm Springs has the highest prevalence of gay men living with HIV who are 50 years of age or older (Murphy, 2025). Jax Kelly, President of Let’s Kick ASS Palm Springs (AIDS Survivor Syndrome), states, “As someone who has lived through the earliest years of the AIDS epidemic and now works closely with older adults aging with HIV, I can tell you plainly: these proposed cuts—and the chaos emanating from Washington—are retraumatizing long-term survivors and sparking real fear throughout our community.”

Kelly added, “Community health organizations are unsure how long they can continue offering stable care. Clients—many of whom rely on multiple safety net programs—are afraid their doctors will be taken away, their medications interrupted, and their lifelines severed.” Aging while living with HIV is uniquely stressful when faced with healthcare access challenges, in addition to potential cuts to Medicare, Medicaid, and Social Security. Moreover, funding cuts could adversely impact clinical trials that are uniquely beneficial to aging PLWHA.

Photo Source: ACLU Georgia

Georgia, one of the most heavily impacted states in terms of HIV, faces significant losses because of potential funding cuts. Ninety-five percent of Georgia’s budget for HIV prevention comes from federal funding through the CDC (Scaturro, 2025). If all the cuts go through, Georgia would lose $21 million of its $24.4 million HIV prevention budget. 

ADAP Advocacy reached out to Jeff Graham, Executive Director of Georgia Equality (seen above in photo from 2004), for insight into the gravity of HIV funding cuts in the state. Graham stated, “The State of Georgia in general and the metro Atlanta area in specific have been especially hard hit with the number of new HIV diagnoses in recent years, especially among black communities. The Georgia Department of Public Health and most local health departments rely almost exclusively upon federal funds to conduct the surveillance and re-granting of funds that community-based organizations depend upon to do the front-line work that is so desperately needed.” He further explained, “Any cuts to federal funds will have a direct impact on those communities who are already facing challenges due to this administration's policies attacking people of color, transgender individuals, and LGBTQ serving organizations. We are not just looking at a probable increase in new HIV diagnoses. We are looking at the roll-back of decades of work addressing the root causes of HIV and AIDS in the South.”

In many aspects, it is sometimes difficult for people to understand how the actions of the federal government impact citizens’ daily lives. Elevating the plight of local communities navigating the ever-changing developments in HIV funding cuts colors the slashed numbers on a ledger with humanity.

[1] Johnson, C. (2025, April 2). HIV funding cuts will hinder Ohio treatment and prevention, LGBTQ+ health group says. Retrieved fromhttps://www.msn.com/en-us/politics/government/hiv-funding-cuts-will-hinder-ohio-treatment-and-prevention-lgbtq-health-group-says/ar-AA1C9iv9?ocid=socialshare

[2] Murphy, T. (2019, October 10). Living the Golden Years With HIV in Palm Springs, California. Retrieved fromhttps://www.thebody.com/article/living-the-golden-years-with-hiv-in-palm-springs-california

[3] Peralta-Arellano, M. (2025, April 2). Health organization in Milwaukee concerned over potential federal cuts to HIV prevention. Retrieved from https://www.wuwm.com/health-science/2025-04-02/health-organization-in-milwaukee-concerned-over-potential-federal-cuts-to-hiv-prevention

[4] Scaturro, M. (2025, March 21). Georgia could lose nearly all HIV prevention funds with proposed CDC cuts. Retrieved from  https://www.ajc.com/news/health-news/georgia-could-lose-nearly-all-hiv-prevention-funds-with-proposed-cdc-cuts/2KIVL4R6QVBM5D56YF3XMIY6GA/

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

HRSA Issues Numerous Guidance Letters Offering Patient Assistance

By: Ranier Simons, ADAP Blog Guest Contributor

The clients who qualify for and receive assistance through the Ryan White HIV/AIDS Program (RWHAP) are often representative of vulnerable populations. Providing a comprehensive means of providing HIV medications, healthcare, and related-services requires a whole-person approach. As such, Health Resources & Services Administration (HRSA) continues to evaluate and update its RWHAP endeavors to meet client needs. Systematic barriers exist that all to often challenge RWHAP clients’ ability to receive appropriate and consistent care. Recently, HRSA issued numerous guidance letters addressing those barriers.

HRSA has created patient assistance initiatives to enable a more seamless delivery service system aimed at addressing various socio-economic and systemic structural needs. Two of the program letters HRSA released in June 2024 address services for people living with HIV/AIDS (PLWHA) who have been involved in the criminal justice system, and those who are affected by housing insecurity.

PLWHA, who have been involved with the criminal justice system face barriers to access to care, among many other things. A person having legal involvement is defined as anyone who is engaged at any point along the continuum of the legal system as a defendant, including arrest, incarceration, and community supervision.[1] The HRSA HIV/AIDS Bureau (HAB) released guidance emphasizing how RWHAP funds may be used to support this demographic. RWHAP funds can be used to assist PLWHA who have been incarcerated or who are incarcerated and have an expectation of eligibility for RWHAP services upon release.[1] One effective means of support is assistance with the expungement of criminal records.

Photo Source: ADAP Advocacy | iStock Images

A criminal history is an obstacle to a person obtaining employment, housing, and education and subsequently affects access to healthcare. Expungement of criminal records improves the chances of successful reintegration into the community, reduces stigma, and protects privacy.[2] HRSA recognizes the importance of decreasing disparities to improve health outcomes for PLWHA. The expungement of criminal records facilitates obtaining gainful employment and securing housing, both of which translate into improving healthcare access. HRSA’s guidance informs providers that according to HRSA/HAB Policy Clarification Notice (PCN) #18-02, using RWHAP funds to help pay for expungement falls under the purview of allowable legal services because it is a matter “related to or arising from [an individual’s] HIV.”[1] Stipulations require any RWHAP recipients offering expungement services to research local laws, partner with legal counsel to create policies to determine how the services will be enacted, and ensure they are available to all eligible clients who seek help.[1]

In a related vein, in April 2024, HRSA announced new funding to support healthcare services for people transitioning out of incarceration. It earmarked $51 million to create funding opportunities for HRSA-funded health centers to develop innovative ways to give healthcare services to people in the 90-day period before their incarceration release.[3] Many people who are incarcerated have mental health conditions, substance abuse challenges, and chronic disease conditions such as HIV. The funding will enable HRSA-funded centers to provide care that ensures the continuity of medical services. This population needs case management services to help navigate things such as reinstating insurance eligibility, continuing access to medications and mental health counseling, reducing drug overdose risk, and even addressing housing and food insecurity.[3]

Regarding housing assistance, HRSA also released guidance educating providers, Policy Clarification Notice (PCN) #16-02, on an additional pathway RWHAP funds can be used to assist with housing instability. HRSA listened to clients who explained that statutory stipulations against using RWHAP funds to help pay housing security deposits for clients were a roadblock to helping them access stable and permanent housing.[4] As a result, HRSA/HAB issued guidance explaining that RWHAP funds can be used to pay for housing security deposits only if procedures are in place to ensure the security deposit is returned to the RWHAP service provider and not the RWHAP client.[4] It is not mandatory for RWHAP funds to be used for this purpose. Other funding sources, such as Ending the HIV Epidemic (EHE) funds, income generated from 340B program proceeds, and non-RWHAP grant awards, can also be used to help pay for housing security deposits.[4] This guidance is simply education on the existence of the option if needed.

HRSA has additional endeavors targeting the housing needs of PLWHA in the RWHAP. One of these is the SURE Housing initiative. SURE stands for Supporting Replication of Housing Interventions in the Ryan White HIV/AIDS Program. It is a program funded from 2022 through 2026 through HRSA’s RWHAP Part F Special Projects of National Significance Program.[5] Under this initiative, ten implementation sites are funded to create replicable effective interventions for rapid re-housing and housing stability for PLWHA who fall into one of three categories: those who have been involved with the legal system, those who identify as LGBTQ+, and young adults aged 18-24.[5]

With these guidance letters, HRSA/HAB has demonstrated its commitment to fostering an effective system, offering continuity of care and services for ADAP and RWHAP clients. HRSA continues to evaluate and modify current RWHAP offerings, communicate with recipients to investigate needs of new offerings, and examine how changing policy and legal landscapes affect funding rules and statutes. Housing instability and incarceration continue to complicate the lives of many PLWHA. It is imperative that government funding continues and scales with changing needs to ensure that no one falls through the cracks.

[1] HRSA HIV/AIDS Bureau. (2024, June 6). Ryan White Colleague Letter. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/grants/hrsa-hab-expungement-program-letter.pdf

[2] Hamann, K., Riley, P., Bismuth, C. (2024, January 22).The evolving landscape of sealing and expungement statutes. Retrieved from https://www.americanbar.org/groups/criminal_justice/publications/criminal-justice-magazine/2024/winter/evolving-landscape-sealing-expungement-statutes/

[3] U.S. Department of Health and Human Services. (2024, April 10). Press Release: During Second Chance Month, HRSA Takes Policy Action, Releases First-Ever Funding Opportunity for Health Centers to Support Transitions in Care for People Leaving Incarceration. Retrieved from https://www.hhs.gov/about/news/2024/04/10/health-centers-to-support-transitions-in-care-for-people-leaving-incarceration.html

[4] HRSA HIV/AIDS Bureau. (2024, June 26). Ryan White Colleague Letter. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/grants/hrsa-hab-security-deposit-program-letter.pdf

[5] Target HIV. (2024). SURE Housing Initiative. Retrieved from https://targethiv.org/spns/SUREHousing

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

Older Adults, Long-term Survivors, and Life-term Survivors in the Ryan White HIV/AIDS Program

By: Ranier Simons, ADAP Blog Guest Contributor

The lived experience of aging can be challenging. Those aging while living with HIV experience additional challenges as compared to the general population. According to the Centers for Disease Control & Prevention (CDC), in 2021, over 53 percent of people living with HIV/AIDS (PLWHA) were 50 years old or older.[1] In 2022, 48.2 percent of the 560,000 clients served by the Ryan White HIV/AIDS Program (RWHAP) were aged 50 or older.[2] As such, Health Resources & Services Administration (HRSA) recently issued a letter to RWHAP colleagues to not only bring awareness of the aging issues they should be addressing but also provide guidance and resources to help them more effectively serve the complex needs of aging PLWHA.

Photo Source: TargetHIV

As David “Jax” Kelly, President of Let’s Kick ASS (AIDS Survivor Syndrome) Palm Springs and Founder & CEO of the Aging and HIV Institute, points out, “The community aging with HIV consists of two distinct groups long-term survivors who have been living with HIV prior to 1995, and those who are over 50 and have been living with HIV after the discovery of the "cocktail" – antiretroviral medications that changed HIV/AIDS to a chronic condition rather than a diagnosis of imminent death.” According to Kelly, this aging cohort has specific medical, psychosocial, and support needs. The fact that more PLWHA are living longer increases the urgency of bolstering the infrastructure of HIV aging services.

Just like the general population, aging PLWHA experience age-related medical issues. However, older PLWHA have a higher prevalence of non-HIV comorbidities.[3] Thus, managing multiple morbidities and polypharmacy is a challenge.[3] Numerous medical issues mean treatment with multiple medications. The difficulty of navigating the medical aspects of multiple maladies is compounded by having to monitor drug-drug interactions of non-HIV-related medications with antiretroviral therapies. In addition to prescription drugs, older PLWHA may be taking over-the-counter medicines like pain relievers and supplements.[4] Studies also show that PLWHA develop age-related non-HIV medical issues earlier than the aging general population.[5] Some of the non-HIV-related conditions with higher prevalence among PLWHA are hypertension, kidney disease, dyslipidemia, and anemia.[5] One of the possible causes of higher rates of comorbidities is the side effects of long-term ART experienced by long-term survivors. 

Aging PLWHA also have specific psychosocial needs. According to Kelly, “Long-term survivors who experienced the trauma of the AIDS plague years when life expectancy was sometimes merely a few months are experiencing another wave of loss that may trigger survivor's guilt.” Social isolation is also an issue.[6] It is a challenge for the general population, but it can be extra challenging for PLWHA; especially those who may be LGBTQ. Aging PLWHA who happen to be LGBTQ have sometimes lost friends and people they consider chosen families. Due to ageism, sexism, racism, and homophobia, they live in self-isolation and are isolated, given that society does not place any priorities on ensuring their comfortable existence. 

Depression from physical and social isolation is not the only serious mental challenge aging PLWHA struggle with. Aging, in general, can sometimes bring on a bit of mental decline. However, cognitive impairment due to HIV-associated neurocognitive disorder (HAND) is also a known complication of HIV.[7] HAND can cause difficulty with concentration and memory, irritability, and motor skills issues.[7] In late, untreated stages, it can cause dementia. Psychosocial challenges and mental decline not only result in poor mental health but are barriers to maintaining medication adherence or achieving a high level of personal care.

Support is an area where much improvement is needed. The aging PLWHA population is diverse. People in their 50s, 60s, 70s, and up have different and dynamic needs. HIV care and geriatric care are siloed and not well coordinated. A technical expert panel put together by HRSA reported that in the U.S., primary care practitioners are not skilled in geriatric care, and geriatric practitioners are not skilled in HIV care.[8] It is imperative to have coordinated care efforts that are efficient, effective, and sustainable to encompass all the needs of aging PLWHA. 

Photo Source: HRSA | Flickr

Additionally, there are shortages of geriatricians, and many primary care practitioners don’t have the time to adequately address the needs of and perform the screenings needed for aging PLWHA.[8] HIV stigma and ageism, unfortunately, exist in the medical environment as well. Many clinicians, especially younger professionals, underestimate the mental and cognitive abilities of older PLWHA and don’t view them as sexual beings. Lacking knowledge and training of what it means to age with HIV results in not performing necessary medical screenings, overlooking thorough holistic needs assessments, and even inadequate tracking of health outcomes.

HRSA understands the interdisciplinary, multifaceted approach needed to effectively serve aging PLWHA. That is why the “Dear Colleague” letter was written. The letter references many tools and knowledge sources for RWHAP recipients to utilize. 

First and foremost, the letter reminds them that it is acceptable to use RWHAP funds to support aging PLWHA across various HRSA RWHAP core medical and support service categories.[2] However, HRSA is aware that there are some needs aging PLWHA have that RWHAP funds cannot directly address. For example, long-term care is not an allowable expense through RWHAP. To that end, HRSA refers RWHAP colleagues to connect with the Administration for Community Living’s (ACL) aging network grantees.[2] These community centers offer many services to help address holistic needs, such as transportation, housing, caregiver support, insurance counseling, and nutrition services.[2]

HRSA also provides reference and training materials to inform RWHAP recipients on ways to improve service delivery and structure their organizations. These are available through TargetHIV.org and the RWHAP AIDS Education and Training Center (AETC) Program’s National Coordinating Resource Center website.[2] A couple of these reference guides are: ‘Incorporating New Elements of Care’ and ‘Putting Together the Best Healthcare Team.’ Those two guides help identify screen assessments, screenings, and social needs of aging PLWHA, as well as guidance on how to effectively staff teams and build capacity.[9]

HRSA’s commitment to support the RWHAP is truly beneficial to the success of the programming. Tez Anderson, President & Founder, Let’s Kick ASS (AIDS Survivor Syndrome), expressed these sentiments regarding HRSA’s efforts: “As an advocate and someone living with HIV for over 40 years, I’m pleased HRSA is shining a light on the Ryan White Cares services available for the large and diverse cohort of older adults living with HIV and long-term survivors. As a group, we all have unique needs, and the priority must be to improve our quality of life. For those of us who have lived over half our lives with HIV, we agree living longer is a fantastic achievement, but living better is where hope lives.”

[1] NIH Office of AIDS Research. (2024, March 12). HIV and Older People. Retrieved from https://hivinfo.nih.gov/understanding-hiv/fact-sheets/hiv-and-older-people

[2] Cheever, L. (2024, August 16). Dear Colleague Letter on Older Adults, Long-term Survivors, and Life-term Survivors in the Ryan White HIV/AIDS Program. Retrieved from https://paetc.org/resources/dear-colleague-letter-on-older-adults-long-term-survivors-and-life-term-survivors-in-the-ryan-white-hiv-aids-program/

[3] Kong, A. M., Pozen, A., Anastos, K., Kelvin, E. A., & Nash, D. (2019). Non-HIV Comorbid Conditions and Polypharmacy Among People Living with HIV Age 65 or Older Compared with HIV-Negative Individuals Aged 65 or Older in the United States: A Retrospective Claims-Based Analysis. AIDS patient care and STDs, 33(3), 93–103. https://doi.org/10.1089/apc.2018.0190

[4] NIH Office of AIDS Research. (2019, December 18). Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV. Retrieved from https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/special-populations-hiv-and-older

[5] Schouten, J., Wit, F. W., Stolte, I. G., Kootstra, N. A., van der Valk, M., Geerlings, S. E., Prins, M., Reiss, P., & AGEhIV Cohort Study Group (2014). Cross-sectional comparison of the prevalence of age-associated comorbidities and their risk factors between HIV-infected and uninfected individuals: the AGEhIV cohort study. Clinical infectious diseases: an official publication of the Infectious Diseases Society of America, 59(12), 1787–1797. https://doi.org/10.1093/cid/ciu701

[6] HRSA. (n.d.) Optimizing HIV Care for People Aging with HIV:  Incorporating New Elements of Care Reference Guide for Aging with HIV. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/grants/aging-guide-new-elements.pdf

[7] Eggers, C., Arendt, G., Hahn, K., Husstedt, I. W., Maschke, M., Neuen-Jacob, E., Obermann, M., Rosenkranz, T., Schielke, E., Straube, E., & German Association of Neuro-AIDS und Neuro-Infectiology (DGNANI) (2017). HIV-1-associated neurocognitive disorder: epidemiology, pathogenesis, diagnosis, and treatment. Journal of Neurology, 264(8), 1715–1727. https://doi.org/10.1007/s00415-017-8503-2

[8] HRSA. (n.d.). Addressing the Health Care and Social Support Needs of People Aging with HIV: Technical Expert Panel Executive Summary. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/resources/hrsa-aging-tep-summary.pdf

[9] HRSA. (2022, February). Clinical Care Guidelines and Resources. Retrieved from https://ryanwhite.hrsa.gov/grants/clinical-care-guidelines-resources

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

Is Congressional Support for HIV Funding Waning?

By: Ranier Simons, ADAP Blog Guest Contributor

Federal funding is the backbone of many government functions and influences many aspects of our daily lives. Federal spending allows the Pentagon to function, supports educational programs such as Head Start, helps maintain our infrastructure, and, most importantly, affects healthcare. One aspect of healthcare with a heavy reliance on federal funding is HIV/AIDS. But has that funding kept pace with the need for people living with HIV/AIDS (PLWHA)?

Photo Source: Medical Marketing & Media

The federal government invests both mandatory and discretionary spending regarding HIV. Mandatory spending is set by laws and statutes.[1] Some of the mandatory spending related to HIV services includes Medicare, Medicaid, and Social Security Disability Insurance.[1] Discretionary spending is determined each year by Congress through the appropriations process. This includes programs such as the Ryan White HIV/AIDS Program (RWHAP) and AIDS Drug Assistance Programs (ADAP). Although needs have increased and priorities have evolved, federal funding regarding HIV has remained essentially flat and, in some cases, faces threats of cuts, which could result in unsatisfactory health outcomes. This is especially true regarding HIV and aging.

Discretionary funding supports HIV treatment and continual testing programs, helps entities to provide and promote the utilization of PrEP, and even enables assistance with social determinants of health concerns such as housing instability. However, RWHAP's core budget has been left primarily flat since 2013, although it has added 50,000 patients.[2] The program serves low-income PLWHA. Over 50% of PLWHA are dependent upon the RWHAP annually for services needed to survive and thrive, such as medication and essential support services.[3] Likewise, Emily M. Schreiber, Senior Director of Policy & Legislative Affairs for NASTAD, points out that ADAP funding last increased in FY2014. From 2014 to 2022, ADAP client enrollment increased by 60 percent.

ADAP has increasingly relied on rebates from drug manufacturers under the 340B Drug Pricing Program, but ongoing abuses by big hospital systems and mega service providers threaten the solvency of that program. Congress is knocking on 340B's proverbial door, saying: "Show Me the Money".

Exacerbating the urgency for increased spending is more extended life expectancy. Advances in medical science, such as antiretroviral therapy, mean that PLWHA are living longer. More than 50% of PLWHA in the United States are over 50, with estimates projecting that by 2030 it will be 70%.[3] Living longer means that PLWHA are dealing with many HIV-associated non-AIDS health conditions partly stemming from HIV-related chronic inflammation in the body and long-term use of strong antiviral medications.[4,5] These include diabetes, cardiovascular disease, renal disease, and cancer. Moreover, PLWHA dealing with comorbidities must navigate multiple medications, increased risk for drug reactions, and coordinate multi-specialty care.[3] 

Photo Source: Kaiser Family Foundation

Many PLWHA 65 years of age and older are covered by Medicare, and about 40% depend upon Medicaid.[3] Ten states have yet to expand Medicaid. Additionally, studies show that Ryan White-funded patients with private insurance have better health outcomes than those on Medicare. Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, states, “With people living longer, we must sustain funding just to support the services for them, but at the same time, our goal is to bring more people into HIV care and treatment. Without that additional funding, our progress in ending HIV will remain basically stalled. While we are fighting proposed cuts, we must also examine ways to use the existing federal resources in different innovative ways to make the progress we need.”

PLWHA are also being affected by discretionary funding challenges with programs that are not expressly HIV related. One such program is the Teaching Health Center Graduate Medical Education program (THC). Most primary care medical residents receive their residency training in hospitals. The Center for Medicare and Medicaid Services pays hospitals billions for primary care and other specialty residency training.[6] Conversely, the THC program trains residents in outpatient clinics instead of hospitals and has $215 million to spend through 2024. THC gives residents extensive community-based outpatient residency training in facilities such as federally qualified health centers and community clinics that are in underserved urban and rural areas.[6]

Data shows that graduates of THC residencies are more likely to remain and practice in local communities. Many PLWHA reside in underserved urban and rural communities. The THC program not only trains residents on how to care for these populations but is also a pipeline of an effective workforce to bolster care deserts. Many PLWHA in underserved areas have difficulty finding robust primary care services and infectious disease care. Effective primary care will lead to improved healthcare outcomes for PLWHA with comorbidities, in addition to enhancing their HIV care.

Photo Source: The Wright Center

Nevertheless, unlike hospital residency programs, THC funding is not guaranteed and comes from discretionary Congressional appropriations. There are 82 THC programs in the United States. Despite proven success, the program is consistently financially tenuous. Due to not having stable, long-term, reliable funding, some of the THC programs have been put on hold or stopped.[6] It was created under the Affordable Care Act in 2010 and will run out of funding in December if its appropriations funding is not replenished.

It is important to note that federal domestic discretionary spending includes Centers for Disease Control & Prevention (CDC) HIV prevention programs like the Ending the HIV Epidemic (EHE), RWHAP, ADAPs, National Institutes of Health (NIH) HIV/AIDS research, and even Housing Opportunities for Persons with AIDS (HOPWA).[1] President Biden’s fiscal year 2025 budget request eliminates barriers for Medicaid recipients to receive PrEP and proposes a program to guarantee PrEP for all uninsured and underinsured.[1] It also requests a new $10 million program to improve equity and civil rights through a DOJ program to eradicate outdated criminal statutes that target PLWHA.

The evolution of HIV is not stagnant or flat, nor should its funding be. The lives of PLWHA and efforts to end the HIV epidemic are too important to be left on unstable funding grounds due to the politicization of disease and misappropriation of scarce resources. House Republicans have expressed the desire to cut as much as 11% of a bill that supports HIV programs.[7] Failure to increase and innovate funding will adversely affect the progress that has been made as well as lead to avoidable poor healthcare outcomes and increased costs.

[1]  HIV.Gov. (2024, May 13). Federal HIV Budget. Retrieved from https://www.hiv.gov/federal-response/funding/budget

[2] Whitehead, S. (2024, June 19). Americans are living longer. Federal spending isn't keeping up. Retrieved from https://www.medpagetoday.com/hivaids/hivaids/110714?xid=nl_mpt_DHE_2024-06-19&eun=g1964022d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily%20Headlines%20Evening%202024-06-19&utm_term=NL_Daily_DHE_dual-gmail-definition

[3] Health Resources and Services Administration. (2023, December). HRSA Ryan White HIV/AIDS Program Parts and Initiatives. Retrieved from https://ryanwhite.hrsa.gov/about/parts-and-initiatives

[4] HIV.Gov. (2024, June 4). Aging with HIV. Retrieved from https://www.hiv.gov/hiv-basics/living-well-with-hiv/taking-care-of-yourself/aging-with-hiv#:~:text=Health%20Issues%20and%20Aging%20with%20HIV&text=In%20addition%2C%20while%20effective%20HIV,%2C%20renal%20disease%2C%20and%20cancer.

[5] Gallant, J., Hsue, P. Y., Shreay, S., & Meyer, N. (2017). Comorbidities Among US Patients With Prevalent HIV Infection—A Trend Analysis. The Journal of Infectious Diseases, 216(12).

[6] KFF Health News. (2024, June 13). Funding instability plaques program bringing doctors to underserved areas. Retrieved from https://www.usnews.com/news/health-news/articles/2024-06-13/funding-instability-plagues-program-bringing-doctors-to-underserved-areas?src=usn_tw

[7] Burke, J. (2024, May 21). Press Release: New CDC HIV Data Demonstrates the Impact of Flat Funding. Retrieved from https://hivhep.org/wp-content/uploads/2024/05/CDC-HIV-data-press-release-5.21.24.pdf

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.