Showing posts with label HIV/AIDS Bureau. Show all posts
Showing posts with label HIV/AIDS Bureau. Show all posts

Thursday, April 24, 2025

HRSA Mired in Uncertainty, Instability, and Confusion; Patient Advocates Increasingly Concerned

By: Ranier Simons, ADAP Blog Guest Contributor

The Trump Administration's developing policies regarding population health and well-being continue to propagate uncertainty, instability, and confusion amidst entities that affect optimal health outcomes for all citizens. Notably, there is a concerted effort to dismantle infrastructure instituted by previous administrations that made the Ryan White HIV/AIDS Program (RWHAP) and other federal health programs more inclusive of the needs of marginalized communities. A recent Special Bulletin sent out by the Health Resources and Services Administration’s (HRSA) HIV/AIDS Bureau (HAB) does not immediately effect change. Yet, some stakeholders are concerned about its possible implications (Engels, 2025). But numerous things unfolding simultaneously have yielded chaos.

U.S. Department of Health & Human Services headquarters
Photo Source: CNS photo/Nancy Phelan Wiechec

The HRSA HAB special bulletin contained a 'Dear Colleague' letter from HRSA Administrator Thomas J. Engels addressed to RWHAP program awardees and stakeholders, which includes many national partners and federal colleagues. The letter began by extolling the virtues and successes of RWHAP and how it is a lifeline for people living with HIV/AIDS (PLWHA). It then proceeded to criticize RWHAP policies under the Biden administration. The letter states, “…under the previous administration, certain interpretations of RWHAP’s allowable uses, as outlined in prior communications, co-opted the program’s patient-centered mission in favor of radical ideological agendas and policies. Congress envisioned RWHAP as a lifeline for those battling HIV and AIDS, not as a vehicle for broader social or medical experimentation. More to the point, this politicized commandeering risks diverting resources away from HIV/AIDS patients, whose lives depend on RWHAP’s core medical services.” (Engels, 2025)

The letter contained a direct footnote in reference to what it described as ‘radical ideological agendas and policies’ (Engles, 202). The footnote was guidance from the U.S. Department of Health and Human Services (HHS) from December 2021, stating that RWHAP funds could be used to support gender-affirming care through RWHAP core medical and support service categories (Cheever, 2021). The 2021 guidance defined the appropriate services as those outlined in Policy Clarification Notice #16-02 Ryan White HIV/AIDS Program Services: Eligible Individuals & Allowable Uses of Funds (PCN# 16-02).

Some State AIDS Drug Assistance Programs (ADAP) have gender-affirming hormone therapy as part of their formulary. Holistic treatment of transgender individuals living with HIV also includes services such as mental health counseling for gender dysphoria, substance use disorder treatment, and even housing and case management services. These services are necessary to support anti-retroviral treatment adherence and positive HIV-related healthcare outcomes in transgender individuals, hence why the Biden administration issued the policy guidance (Cheever, 2021).

After the direct reference to transgender HIV care as a radical policy, the Special Bulletin further adds, “…HAB reaffirms that RWHAP funds shall be marshaled exclusively toward evidence-based interventions proven to combat HIV, sustain viral suppression, and improve the quality of life for those living with the disease.” It defines those as outpatient care and support services, including but not limited to providing HIV medications and housing assistance. Interestingly, the letter emphasizes that RWHAP funds are not authorized for things outside of the scope of PCN# 16-02, the same notice utilized by the Biden administration’s 2021 policy guidance, including affirming gender-affirming care under RWHAP (Engels, 2025).

Trump walking on transgender flag
Photo Source: The New York Times

Specifically highlighting gender-affirming care with the implication that it is radical and not authorized, utilizing guidance that defined it as appropriate, essentially to say it is not appropriate, is contradictory and nebulous. The Dear Colleague letter is not a policy implementation, yet it leaves enough doubt for many RWHAP recipients to be concerned about the services they are providing. According to 2021 data, 11,600, or 2.1 percent of RWHAP patients, are transgender (Cheever, 2025). That is a large population of vulnerable individuals potentially losing certain needed services.

The present HRSA RWHAP messaging emphasis on gender-affirming care is in alignment with the Trump Administration’s delegitimization of transgender lives and transgender health. Presently, the administration is appealing a block on its desired ban of openly transgender service members in the military (Pierson, 2025). The administration’s attorneys argue circularly that the ban is not based on transgender identity but on the medical condition of gender dysphoria. They purport that those who identify as transgender can still serve if they do not have gender dysphoria or openly live as a sex different than their sex at birth. 

The Centers for Medicare and Medicaid Services (CMS) issued a letter on April 11, 2025, addressed to state Medicaid Directors, urging states not to use Medicaid funds for gender-affirming care for minors, highlighting hormone treatments, puberty blockers, or surgeries (Snyder, 2025). The letter refutes the legitimacy of gender-affirming care for minors. It further adds that “State Medicaid programs have a responsibility to ensure that payments are consistent with 'efficiency, economy, and quality of care' under Section 1902(a)(30)(A) of the Social Security Act…CMS is committed to following the highest standards of care and adhering closely to the foundational principles of medicine, especially when it comes to doing no harm to America’s children.”

Additional alarm stems from the HHS FY2026 discretionary "budget passback" that was leaked last week. The budget passback is a draft document that gives an informed look at the priorities of the Trump Administration’s Office of Management and Budget (OMB) as it prepares a budget request for Congress. The Washington Post reported that while Congress typically ignores the President's budget request, given that the current political environment is not typical, it’s important to investigate its drastic transformative blueprint (Sun et al., 2025).

The Washington Post headline on internal HHS budget passback document
Source: The Washington Post

ADAP Advocacy contacted Tim Horn, Director of Medication Access for NASTAD, for insight on the 64-page documents' details associated with infectious disease programs. The leaked budget proposal includes provisions to formally eliminate the CDC’s Division of HIV Prevention, Ending the HIV Epidemic (EHE) funding across the government, all funding for Part F of the Ryan White/HIV AIDS Program, Minority AIDS Initiative Funding, and a significant amount of SAMHSA Substance Abuse Treatment Programs of National and Regional Significance (PRNS). The Washington Post also highlights that the proposal cuts the NIH budget by 40 percent, eliminating entities like the NIH National Institute on Minority Health and Health Disparities (Sun et. al, 2025).

Although the current flurry of activity is causing RWHAP great unease, Jen Laws, CEO of Community Access Action Network (CANN), offers insight for the immediate present. Concerning the HRSA Special Bulletin, he shared, “A ‘special bulletin’ is not formal guidance or policy of any kind. That would most assuredly constitute a final agency action and open the door to either adding this issue to existing suits regarding public health funding programs or a suit on its own. Here, RWHAP sub-recipients need to know that this is not binding guidance and that their service offerings should not be changed. Rather, it's a flag, a signal, if you will, on what the Administration intends to do.”

Ongoing RWHAP stakeholder stress is further exacerbated by the breakdown in infrastructural support offered to them. For example, HRSA abruptly cancelled the HAB National Partners meeting initially scheduled for April 14, 2025, without any explanation or details about rescheduling it. One provider stakeholder, speaking to ADAP Advocacy on the condition of anonymity, decried, "We're feeling very devalued and simply bracing ourselves for the other shoe to drop."

Vigilance is imperative in monitoring HRSA's navigation through the current administration's actions and possible changes to Medicaid. The lives of PLWHA and other marginalized communities and the health of the general population are at stake. Distinguishing enforceable actions from propagandized smoke screens will help maintain hope and enable sustained focus on targeted response.

[1] Cheever, L. (2021, December 2021). Dear Colleague Letter. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/hiv-care/gender-affirming-care-rwhap.pdf

[2] Engels, T. (2025, April 7). Dear Colleague Letter. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/about-program/letter-grantees-rwhap-4-2025.pdf

[3] Pierson, B. (2025, April 22). Trump administration pushes appeals court to enforce military's transgender ban. Retrieved from https://www.reuters.com/legal/government/trump-administration-pushes-appeals-court-enforce-militarys-transgender-ban-2025-04-22/

[4] Snyder, D. (2025, April 11). CMS Letter to State Medicaid Directors. Retrieved from https://www.cms.gov/files/document/letter-stm.pdf

[5] Sun, L., Johnson, C., Roubein, R., Achenbach, J., Weber,L. (2025, April 16). Internal budget document reveals extent of Trump’s proposed health cuts. Retrieved from https://www.washingtonpost.com/health/2025/04/16/hhs-budget-cut-trump/

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.

Wednesday, September 18, 2024

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

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.

Incarcerated male standing with look for reflection on his face
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]

Quality Housing and HIV

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.  

Thursday, December 7, 2023

Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report

By: Ranier Simons, ADAP Blog Guest Contributor

Effective population health monitoring, program evaluation, and decision-making requires quality data. To that end, in September 2023, the Division of Policy and Data, HIV/AIDS Bureau (HAB) under the Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services published the Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report.[1] The current iteration of this annual publication covers the years 2017 through 2021. The client-level data includes information such as demographics, socioeconomic status/factors, and service utilization.

Health Resources and Services Administration

ADAPs are in each of the 50 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and six U.S. territories, receiving funding from Part B of the Ryan White HIV/AIDS Program (RWHAP). Eligibility for ADAP services requires one to have a diagnosis of HIV, be of low income, defined as a percentage of the federal income poverty level, and meet residency requirements based on a particular state’s ADAP structure. The report includes a multitude of metrics grouped by age, race/ethnicity, gender, federal poverty level, and healthcare coverage status. What follows is an overview of some of the data. To view the report in its entirety, please click here.

According to the report, clients served numbers are on an upward trend. From 2017 to 2021, the client base grew from 268,174 to 289,289. These numbers describe those who specifically receive ADAP services and do not include clients who only receive non-ADAP RWHAP direct health care and support services. However, some ADAP clients partake of those services as well. Increasing yearly numbers indicate that ADAP programs are needed, and ongoing funding is necessary. Additionally, research shows that ADAP programs are cost-effective, and policies that stifle them are detrimental to the health and well-being of those dependent upon them and society overall.[2]

ADAP Clients Served, by Program Type
Photo Source: NASTAD

A few gender-related observations stand out as well. Most of the ADAP clients are male. In 2021, 78.6% were cis-gender male. This percentage and the overall gender ratio of male, female, and transgender patients served has remained consistent over the 2017-2021 timeframe. In 2021, the data shows a difference in poverty based on gender. There were more cis-gender female/transgender female ADAP clients than cis-gender male/transgender males living at or below 100% of the federal poverty level, though as a whole, half of all ADAP clients were below. The comparison was 54.1% cis-gender female and 65.6% transgender female in contrast to 44.7% cis-gender male and 51.4% transgender male. Gender differences were also noted in the status of healthcare coverage. In 2021, 36.5% of ADAP clients were entirely without health care insurance coverage. However, of that subgroup, 36.6% were male, and 34.95 were female. The numbers for transgender clients were higher, with 49.8% of transgender males and 51.2% of transgender females lacking any healthcare coverage. Complete lack of coverage means they did not even have Medicaid.

The report indicated a few standout metrics regarding race as well. The majority of ADAP clients are non-White. In 2021, seven out of ten were racial or ethnic minorities, with white clients comprising 30% of the client total. A further breakdown of the racial data indicates that in 2021 over half, 55%, of female ADAP clients were African American. By comparison, 24.1% were Hispanic/Latina, 18.1% were White, and less than 2% identified as Asian, mixed-race, American Indian/Alaska Native or Native Hawaiian/Pacific Islander. In contrast, 33.6% of male clients were African American, 33.3% were White, and 29.9% were Hispanic/Latino. A very notable racially varied metric involved age. Ethnic/minority ADAP clients are younger than White clients. In 2021, 62.1% of white clients were 50 years of age or older. This contrasts with the statistics of 39.9% being African American, 48.9% being American Indian/Alaska Native, 38.6% Hispanic/Latino, and 36.0% Asian. 

The observations are just a few of the many data points described in the report. Continued reporting of this nature is necessary for accountability in terms of the billions spent on ADAP each year and to continue to improve the services and the lives of those dependent on ADAP services. Whether examining the breakdown of various service utilization or how the distribution of services differs based on geographical region, continuing to create a robust repository of data is the best way to improve the health outcomes of the vulnerable ADAP population.

[1] Health Resources and Services Administration. (2023, September). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report 2021. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/data/hrsa-adap-data-report-2021.pdf

[2] McManus, K. A., Strumpf, A., Killelea, A., Horn, T., Hamp, A., & Keim-Malpass, J. (2022). Economic benefits of the United States' AIDS drug assistance Program: A systematic review of cost analyses to guide research and policy priorities. Preventive medicine reports, 29, 101969. https://doi.org/10.1016/j.pmedr.2022.101969

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.