Nearly 40 people — many of whom are HIV-positive — gathered for a meal in a former Methodist church in Bloomfield Friday evening.
Some had just attended a support group in an activity room that used to be the church’s nave, where a large sign that read, “See me, Feel me, Touch me, Heal me” hung between two stained glass windows — a reminder of the days when many feared touching an HIV-positive person. Others worked in the newly renovated commercial kitchen, equipped to prepare sit-down and take-home meals in large volumes.
Shepherd Wellness Community — which has served HIV-positive people since 1987 — hosts these community dinners three times per week in the building, which it transformed into a place where people who had been diagnosed could safely gather to socialize and share resources. It pays for these services with funding through Part B of the federal Ryan White HIV/AIDS Program, launched in 1990, which awards grants to organizations providing clinical and supportive services to low-income people with HIV.
Among the group were Aaron Schatzman, 43, and Don Anderson, 67. Both are enrolled to receive services through Ryan White Part B and Pennsylvania’s Special Pharmaceutical Benefits Program (SPBP), which helps income-eligible people access HIV medications and is administered by states. They were shocked when they found out the Pennsylvania Department of Health had implemented cuts that would eliminate or limit access to services they consider a lifeline.
In September, the department informed service providers — including Shepherd Wellness Community — that it would cut disbursements for Ryan White Part B by 25%. It also reduced income eligibility for SPBP and other Ryan White services from 500% of the federal poverty level ($78,250 for an individual) to 350% ($54,775).
Schatzman recently applied for housing through Part B — a process he described as quick and seamless when he first did so a few years ago. This time, “it’s been an absolute nightmare,” he said, explaining that caseworkers seem overwhelmed because of demand for Ryan White services. He’s been “stranded in a homeless situation” for the past two months while waiting for a housing placement. He’s currently staying at a branch of the YMCA of Greater Pittsburgh.
Anderson is a retired Pittsburgh Regional Transit maintenance worker and bus driver. His pension makes him ineligible for SPBP under the new income guidelines. His antiretroviral medications cost nearly $3,000 per month — an amount his Medicare plan won’t cover in full. He can’t afford the difference without his drug assistance, which is due to expire in March.
“I basically live check to check, so it’s a big worry,” Anderson said. “I’m getting older and starting to have normal aging [health issues]. HIV puts a different spin on all that stuff.”
The state attributes the eligibility changes to rising need and lagging funding.
In response to questions from Pittsburgh’s Public Source, department spokesperson Mark O’Neill wrote in an email that “federal funding available for this program has not kept pace with the increase in program enrollment and price of medications, and the rise in costs to the entire HIV care program across the state.”
One nonprofit leader told Public Source that the 25% reduction in Part B disbursements is devastating and unprecedented throughout the history of the state’s Ryan White services. Some are scaling back or ending services and programs they view as crucial, including one that served young LGBTQ+ people of color — one of the groups most at risk for HIV/AIDS. Called Project Silk, it was an education and outreach program operated by the clinical and human services nonprofit Allies for Health and Wellbeing. Launched at the University of Pittsburgh, it’s a 13-year-old effort to address racial disparities in HIV transmission and access to health services in the region. The three Allies staffers who ran the program, all queer people of color, were laid off when the program was eliminated.
HIV/AIDS service providers ‘shell-shocked’
Service provider organizations with Ryan White Part B contracts said the state gave them no early warning about the financial headwinds the program is facing. They were informed during a September meeting held by the Jewish Healthcare Foundation,* which is the fiscal agent for Ryan White funding in Southwestern Pennsylvania. The lower disbursement amounts left them with significant budget shortfalls they hadn’t expected when planning for fiscal year 2026, which started in July.
“We were all just sitting there you know … just shell-shocked,” said Richard Krug, the executive director of Shepherd Wellness Community, which is facing a $120,000 budget deficit due to the cuts. Two private foundations have agreed to “cover some of that” and he hopes more individual donors will contribute monthly.
In addition to food assistance, the group offers support groups and health and wellness education and activities. Krug expects it will have to scale back some of these services. It will still host dinners, but may not be able to offer as many take-home meals. And it will likely put on fewer events where HIV-positive people can be in community with each other. He fears the possibility of having to lay off some of its eight staffers or reduce their hours.
Krug said he and other service providers in the region voiced their concerns about the cuts during a listening session that state officials held last week. He feels compassion for the officials, who he believes “lost sleep” over the funding decision, but wondered if they could have anticipated these fiscal problems sooner.
O’Neill said the state Department of Health typically knows the total federal Ryan White award amount in advance and receives it in full before the grant budget period. But the money trickled in this time: The state received three partial awards for the April 1, 2025 to March 31, 2026 grant period, the last of which was disbursed in August.
The department also applied for and received funding for SPBP, but the award was lower than it anticipated for the state’s rising population of enrollees. Over the past 12 months, enrollment “hit an all-time high” of more than 8,200 during a given week — up from 5,500 in 2023, O’Neill said. That caused the total cost of medications to skyrocket from $72 million that year to $139 million today.
While Ryan White Part B and SPBP enrollment and expenses surged in Pennsylvania, federal funding “has remained steady or slightly decreased and state funding has remained level,” O’Neill said.
Shifting priorities under Trump
Funding for HIV/AIDS services and the Ryan White program in particular has remained flat for a long time, said Lindsey Dawson, an HIV policy expert. The exception was in 2019, when the first Trump administration rolled out its Ending the HIV Epidemic initiative to address stalled progress in HIV prevention.
But the initiative only provided a minor funding boost — $165 million for Ryan White in 2025 relative to the total $2.7 billion budgeted for the program. That’s “quite a small amount,” said Dawson, associate director of HIV policy and director of LGBTQ health policy at KFF, a San Francisco-based health policy research organization. “Programs are being asked to do more with less.”
Dawson pointed to a leaked Office of Management and Budget document, dated in April, that suggested eliminating the Ending the HIV Epidemic initiative and other significant scalebacks to the federal HIV response. That ultimately didn’t happen, but it signaled the administration’s priorities, she said.
“The actions in Pennsylvania seem to be the first out of the gate,” said Dawson, but state officials who administer AIDS Drug Assistance Programs across the country “are having conversations about what their budgets are going to look like and what these policy changes are going to mean for their ability to continue to serve their clients.”
Pennsylvania’s cuts will affect some local service providers more than others. The UPMC Pittsburgh Area Center for Treatment (PACT) — where Schatzman receives health care and case management — is funded through Ryan White components unaffected by the cuts: Part C, for outpatient primary care and organizational infrastructure, and D, for serving women, infants, children and youth. Most of its patients earn less than 350% of the federal poverty level and won’t be affected by the state’s new income guidelines for drug assistance, said Clinical Director Deborah McMahon, an infectious disease doctor. The clinic is determining how many patients will be affected and mitigating harm by helping them get insurance through Pennie, the state’s health insurance marketplace, and enroll in patient assistance programs offered by pharmaceutical companies.
McMahon said the clinic’s patients will be more impacted by the Trump administration’s other attempts to shrink the social safety net, such as delaying food stamp payments. “What we’re really concerned about right now is that we only have so much food assistance and places we can refer people to,” she said.
A pandemic-fueled delay in diagnoses?
New HIV diagnoses in Allegheny County have declined 54% from 2015 to 2023, according to an AIDS Free Pittsburgh report based on county data. The group aims to end the county’s epidemic and includes the county Department of Health, Pitt, large health systems and smaller organizations such as Shepherd Wellness Community and Allies for Health and Wellbeing.
Kristi Seemiller, the co-chair of AIDS Free Pittsburgh, pointed to a small spike in HIV diagnoses in Allegheny County in 2021. Eighty nine people were diagnosed that year — up from 79 in 2020 and 76 in 2019. People likely delayed getting tested and diagnosed during the early part of the pandemic, leading to an inflated amount of cases later on, she said.
“The world opened back up in 2022 and since then, there’s been a rise in people needing this assistance,” added Seemiller, the administrative director of Allegheny Health Network’s Positive Health Clinic, which provides primary care and specialized HIV services regardless of a patient’s ability to pay.
Like UPMC PACT, AHN Positive Health receives Ryan White funding through Part C and won’t be directly affected by the cuts, but will feel the ripple effects. When patients lose access to pharmaceutical benefits — which will happen gradually over the next year as they recertify their income — the clinic will absorb the cost of their medication.
Asked about the effects of the pandemic on SPBP enrollment, the state Department of Health spokesperson said the statewide rate of new HIV infections “has been steady.” He attributed the surge in enrollment to “individuals not having access to other coverage.”
‘Always the ones that get cut first’
Based in East Liberty, Allies for Health and Wellbeing offers clinical and supportive services including primary care, specialty HIV care, case management, legal services and therapy. It operates its “Allies Pharmacy” onsite, making it a one-stop shop for clinical and pharmaceutical services. The group’s history dates to 1985, when it was a group of volunteers serving HIV-positive people during the worst days of the epidemic in Pittsburgh and the country.
It celebrated that growth during its 40th anniversary in April, which made news of the cuts to its Ryan White Part B funding this fiscal year — and the resulting $800,000 budget shortfall — that much more devastating, said CEO Mary Bockovich.
“You never want to eliminate a person’s position,” she said, of the three Project Silk staffers who were laid off. “And we were basically given no alternative,” she added, noting the state gave Allies guidance on which services to prioritize amid the cuts, saying it would be “prudent” to eliminate the program.
O’Neill said the state is prioritizing services that have the highest impact on quality and access to HIV health care, such as medical case management and outpatient care.
Project Silk started in 2012 in response to an effort by Pitt and the state Department of Health to involve youth of color, among the highest-risk groups, in HIV prevention planning. Many were part of the local ballroom community and expressed frustration over the lack of resources and safe spaces available to them. Allies took over Project Silk in 2023.
In its most recent iteration, Project Silk was housed at the QMNTY Center in East Allegheny. The Center is jointly operated by TransYOUniting and Proud Haven, two nonprofits serving LGBTQ+ people, with a focus on youth, Black people and other people of color. The laid-off staffers coordinated the project’s weekly HIV testing, education and outreach, arts and crafts, community events and other programs, including a recently launched music composition and recording program.
“It was just a great program for young people in the Black TLGBQIA+ community,” said Dena Stanley, the executive director of TransYOUniting. “It’s really unfortunate that programs geared toward us are always the ones that get cut first.” She added that many queer Black people in the state benefit from Ryan White Part B and SPBP, and are likely to be disproportionately impacted by the cuts.
Venuri Siriwardane is the health and mental health reporter at Pittsburgh’s Public Source. She can be reached at venuri@publicsource.org or on Bluesky @venuri.bsky.social.
*The Jewish Healthcare Foundation has contributed funding to Public Source’s health care reporting.
This story was fact-checked by Rich Lord.
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