When Theodore Noel was a school-based service counselor in Oklahoma City, he noticed a pattern. Many students with behavioral issues or who were chronically absent had family members living with HIV. Some saw their diagnosis progress to AIDS because they weren’t receiving treatment.
Noel wanted to address these disparities. So, in 1999, he created Guiding Right – a public health nonprofit headquartered in Oklahoma City that offers free services like HIV and STI testing, counseling, case management and condom distribution.
Part of that work is funded by a federal cooperative agreement for community-based organizations, from which Guiding Right has received support since 2002. The U.S. Centers for Disease Control and Prevention (CDC) covers approximately 1,000 HIV tests annually, STI screenings and four employee salaries. It pays for access to PrEP, an HIV-prevention medication, and education about it. It also funds HIV testing, counseling and education at Langston University.
Guiding Right’s primary service population under the funding stream is Black, gay male individuals. Black Oklahomans made up 24.2% of new HIV diagnoses in 2024, despite comprising only 8% of the state’s population.
In a 2020 announcement for the five-year funding opportunity, the federal agency recognized groups like Guiding Right as important partners “because of their accessibility, history, and credibility in the community.” Noel said the providers are a beacon in their community – especially to individuals who are high-risk for contracting HIV and don’t have a connection to the formal healthcare system.
But the direct funding to community-based organizations will not be renewed for the first time in several decades. Instead, the CDC has made supplemental funding for HIV prevention available to state and local health departments. Eligible applicants are encouraged to support community-based organizations, but it isn’t mandatory.
The change, which reportedly came from the Office of Management and Budget, leaves Guiding Right and 95 other community-based organizations on the edge of a financial cliff with no warning or reason. The agency, which helps implement the president’s priorities through budgetary measures, did not respond to a request for comment.
Since 2021, Guiding Right has received over $2 million under the cooperative agreement. It got a temporary $110,000 extension through the end of September “at the eleventh hour.”
“It's one thing if I wrote a grant, and it just wasn't a good grant, it wasn't accepted. I can live with that,” Noel said. “But the federal government saying, ‘No, these funds are just going to go away. It is going to be redirected,’ then that's kind of a slap in the face.”
Lindsey Dawson, associate director of HIV policy at the independent health policy group KFF, said although the Trump administration hasn’t been explicit about the reason for the funding shift, it aligns with other changes affecting transgender individuals and people of color. These populations are impacted disproportionately by HIV and are often reached by community-based organizations.
President Donald Trump has issued several executive orders disputing the concept of gender identity, and his administration has worked to reduce funding directed at individuals or groups based on race and ethnicity.
Dawson said it is also worth noting this change comes as Trump continues an initiative his first administration started to reduce the number of new HIV infections in the U.S. by at least 90% by 2030. The goal, which he championed in his 2019 State of the Union address, is further contradicted by proposals to eliminate funding for several HIV programs in the first two budgets of his second term.
“Pulling back prevention funding could certainly make it harder to achieve goals related to that initiative,” Dawson said.
CDC guidance lists 59 state and local health departments as eligible for supplemental funding. It outlines anticipated award amounts for each department, ranging from under $300,000 to more than $11 million through May 31, 2027.
In some cases, health departments are expected to get less money than their states’ community-based organizations received. If they do allocate funding to these groups, it will likely be less robust and efficient, Dawson said.
“When we're looking at this whole period of funding, we're talking about over $200 million that went to community organizations. And some of these went to quite well-resourced organizations,” Dawson said. “But some of this funding went to smaller organizations for whom these grants would make up a considerable share of their revenue.”
The Oklahoma State Department of Health did apply for the new supplemental funding opportunity, said spokesperson Erica Rankin-Riley. It is anticipated to receive more than $1 million, according to the guidance.
The CDC encourages recipients to set aside a minimum of 10% of the funding for community-based organizations to provide, enhance and expand HIV testing and PrEP services.
Eligible parties in Ending the HIV Epidemic jurisdictions – which focus on areas or states with high HIV burden – are encouraged to provide a minimum of 25% to community-based organizations. Oklahoma is a priority state because rural parts of the state have disproportionately high rates of HIV.
The State Department of Health developed its application based on the updated guidance. Rankin-Riley said funding allocations have not been finalized because Oklahoma has not yet received an award notice. She added the guidance does not identify the new award as replacement funding for community-based organizations.
About 37% of the state’s anticipated award amount would have to go to Guiding Right to maintain its current service level.
Without funding, Guiding Right would lose support for several prevention services and the salaries of four full-time roles, President and CEO Noel said. That includes two HIV testers, a linkage coordinator, and a PrEP Navigator who also helps with HIV testing, as well as funding for part of Noel’s work.
Noel said he and his finance administrator have worked to see if they could make up for what they’re set to lose and retain those employees. He said, unfortunately, there will be one he can’t save.
“That’s heartbreaking – I get emotional just thinking about it,” Noel said. “They are committed to the work that they do; they're committed to Guiding Right, they’re great ambassadors of Guiding Right.”
Guiding Right has one location in Tulsa and three in Oklahoma City, including a clinic it started in 2021, nestled behind a gay bar. Noel opened the clinic based on community need – especially for patients newly diagnosed with HIV.
“They had to wait two or three months to be seen by a provider,” Noel said. “Unacceptable, totally unacceptable.”
Now, patients can access everything in one place, including medications at the clinic’s onsite pharmacy.
“I love Guiding Right because it helps our community, and it serves the [underserved] population and the population that gets overlooked,” said lead clinical case manager Sharitta Brown. “They can have all their services here. And it touches everything medically, like case management, treatment, the clinic, the pharmacy. It does exactly what it's supposed to do.”
On a Thursday in August, the clinic was alive with providers and patients. Their work continues despite the funding uncertainty.
Patients like 21-year-old Rowan are thankful for Guiding Right. Rowan, who asked to be identified by his first name because he discussed sexual health, has come to Guiding Right for a year. He said he used to have panic attacks because he was worried he might test positive for an STI. Now he can access care and medication.
He said he appreciates that Guiding Right prioritizes hiring people of color, and they helped him feel comfortable opening up about his health and identity.
“They'll be sure to check up on you – not only with your weight, your health, your mental state, but also just make sure that you are doing okay as a whole,” Rowan said.
Noel said that’s what the community stands to lose – culturally competent care that benefits those who need it most.
“The populations that we serve, they are very distrusting. ‘Are you the police? What are you doing? Are you from the health department?’ Or ‘I might not have legal status.’ We don't care about all of that. We're just here to provide the services: risk reduction, HIV testing, if you are positive, linking you into treatment and care. That's the biggest thing,” Noel said.
“Community-based organizations, we’re able to do things that a health department just can't.”
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