HIV care in the United States is one of medicine’s most impressive success stories. In the darkest days of the epidemic, a diagnosis was a death sentence. Today, with access to treatment, people with HIV are able to live long, healthy lives. But that achievement is not self-sustaining. It depends on a robust workforce and funding infrastructure. Right now, both are under significant strain. And the strain is putting patient care at risk in ways that are not yet fully visible to the public or to policymakers.
As a nurse practitioner (NP) with 14 years of experience specializing in HIV care – and as chair of the Northwest chapter of the American Academy of HIV Medicine – I see this every day. Here is what I need policymakers to understand.
The Workforce Crisis
NPs are central to the HIV care continuum. The NP profession was originally developed to meet primary care needs in underserved communities, and HIV care has always been one of the places that mission shows up most clearly. For example, we deliver screening in primary care settings; in Oregon and many other states, this is where most new HIV diagnoses are made. We prescribe HIV pre-exposure prophylaxis (PrEP) in community clinics, and we manage treatment for patients in rural areas where specialty care is often not accessible.
In the earliest days of the epidemic, when HIV care was largely palliative, NPs were at the bedside as well as seeing patients in clinics. That presence has deepened over four decades. Those first-generation HIV clinicians are now retiring, though, and are taking irreplaceable expertise with them. In recent years, I’ve watched as many of my mentors left the field. The pool of newer providers who want to specialize in HIV is not keeping pace. There is still a committed group of clinicians drawn to this work, but there are not enough of us to meet the need, and the pipeline is narrowing.
Two policy decisions are making this worse. First, proposed federal changes would restrict how graduate nursing education is classified, limiting access to student loan funding for NP programs. Graduate nursing education is expensive, and not everyone has tens of thousands of dollars in savings to pursue it. If we want a workforce that reflects the diversity of the communities most affected by HIV, we need accessible, affordable pathways into these programs. Second, in many states, NPs do not have full practice authority, meaning that maintaining an independent or community-based HIV practice requires finding and paying a physician supervisor. That adds cost and unnecessary complexity, placing barriers to care in exactly the settings where HIV services are most needed.
The Funding Cuts
At the same time that the workforce is shrinking, the funding that sustains HIV care is being cut or destabilized.
Cuts to Medicaid are already being felt. During the pandemic, Oregon extended Medicaid coverage broadly, and many patients remained enrolled without needing to renew their eligibility. Now, with federal pressure to tighten eligibility, patients are being told that their coverage has ended, often abruptly and without adequate warning. Beginning in 2027, eligibility will need to be renewed every six months, which is nearly impossible for many of my patients. Those who lose coverage must either reapply, navigate the marketplace, or go without. For people managing HIV alongside poverty, substance use, mental health conditions, or other complex circumstances, that navigation is not straightforward.
Proposed Medicaid work requirements will push more people out of coverage. Many of my patients who rely on Medicaid, though they are not formally classified as disabled, cannot reliably hold down employment. Being poor is time-consuming. Managing HIV is time-consuming. Requiring 80 hours a month of documented work or community engagement as a condition of health coverage will cause people to lose access – not because they don’t need care, but because the requirements are not designed with their realities in mind.
The Ryan White HIV/AIDS Program has been a recurrent target in recent budget cycles. This program, which pays only after all sources (including Medicaid) are used, is a lifeline for tens of thousands of people with HIV. It pays for their medications, their care, and the services that keep them engaged in treatment. Ryan White is administered by states, and Oregon has historically run a strong program. But its strength depends on federal investment, and that investment is at risk.
Changes to the AIDS Drug Assistance Program (ADAP) are adding another layer of vulnerability. Oregon’s ADAP used to offer insurance coverage for people who had concerns about HIV disclosure to an employer or a family member. That option has been eliminated due to pressure from the federal government. A person who cannot come out as HIV-positive now has one fewer pathway to confidential care. These are not hypothetical concerns; they come up often in clinic.
What This Means for Patients
Either of these issues alone would have significant impact. But a depleted workforce combined with reduced budgets puts patient care in real jeopardy. I have watched this play out in my own clinic in recent months.
One patient, a man in rural Oregon living with a life-threatening illness due to AIDS, unexpectedly lost his Medicaid coverage for several weeks earlier this year. He managed to stay on his HIV medications, but complications from his treatment required additional care that he could not afford out of pocket. He used a credit card to cover the costs while waiting for his coverage to be reinstated. He was able to manage this time, but it’s unclear what the future may hold for him and others in similar situations.
Another patient lost her Medicaid and fell off treatment entirely. She is a single mother with a child who has special needs. Navigating a coverage gap is not something she has the capacity to manage on top of everything else. She has been difficult to reach, and I worry she may fall out of care.
Neither of these cases is an anomaly; they are everyday occurrences.
The consequences extend beyond the individuals affected, as well. When people with HIV fall out of care and are no longer virally suppressed, transmission risk in their communities rises. In addition, people who cannot access outpatient care will eventually seek care through emergency departments, when they are much sicker and treatment is much more expensive. Cutting coverage does not make the virus go away; it just shifts the cost and multiplies the harm.
These dynamics are most acute in states where the political will to protect HIV funding is weakest. Oregon is relatively buffered, but many other states are not. What I see in my clinic is exponentially worse elsewhere.
What I want for all patients, and for the clinicians who care for them, is sustained, protected funding for HIV treatment. I want a pipeline of trained providers that can meet the need and practice environments that allow NPs to work at the top of their training. I want a health care system where we are not perpetually in crisis mode, defending things that should simply be part of keeping communities healthy.
The people who walk into my clinic deserve that. So do the clinicians who show up for them every day.
To learn how you can support HIV advocacy efforts, visit the Academy’s Advocacy and Policy page.
