Cuts are ‘permanently damaging’ CAP’s ability to provide services
This past weekend, the Portland Waterfront hosted thousands of rainbow-adorned celebrants of the city’s annual Pride festivities.
To an older generation, this level of open acceptance might feel a million years from 1988. That year, 863 Oregonians were living with AIDS and 114 had already died from the mysterious new medical condition. The Cascade AIDS Project, then five years old, planned an awareness campaign to promote safe sex. But the city’s newspaper of record, The Oregonian, refused to run the ads, which a columnist claimed promoted the “gay lifestyle.” Same with TriMet.
And though social stigma around sexual minorities has dissipated, at least in Portland, it’s once again an uncertain time for the Cascade AIDS Project, which is now one of Oregon’s largest nonprofits. And another crisis might not be far off.
CAP is currently without an executive director; its board of directors now reviewing finalists to replace Paul Lumley, who resigned last month after two years at the helm. And there’s been heated discussion over how to implement a new collective bargaining agreement with CAP’s largely unionized workforce.
With a budget of $40 million and 140 full-time equivalent positions, CAP serves approximately 3,000 clients annually, offering a range of health services -— including supportive housing, primary care (offered through its Prism Health clinic), HIV/STI testing, and comprehensive case management. About half CAP’s staff are primary care workers — including dozens of medical professionals like doctors, nurse practitioners and lab techs.
CAP receives federal funding primarily through contracts with three agencies — the Centers for Disease Control, Housing and Urban Development and Health and Human Services. It also receives a sizable chunk of its budget from the state government, either directly or passed through Portland-area county partners.
While much remains to be sorted out, the results of Trump’s budget will likely be negative for CAP as well as the thousands of clients it serves and the health care system writ large, according to Edgar Mendez, CAP’s director of prevention.
“Prevention” is a difficult thing to quantify, as Mendez explains, and CAP is now preparing to lose $500,000 annually for prevention services that historically came from the CDC, whose budget has been reduced by more than half by President Trump.
“The challenges we’re seeing go for the health care system as a whole, and we’re kind of the tip of the iceberg,” he says.
Mendez met with Oregon Business at CAP’s Old Town office to discuss the wide-ranging impacts expected from the Trump cuts.
This conversation has been edited for length and clarity.
We’ve been talking to nonprofit leaders in Oregon about changes coming from the Trump administration. How has CAP been affected? What is the expected future fallout?
I think there are two major prongs for us. There’s actual policy changes that have been enacted, and then there is the incredible uncertainty around what might potentially happen.
There have been a lot of delays in the administration of a lot of different types of grants. So HUD, CDC, HHS — for us to execute work under contracts from these government institutions, we need these contracts to be, like, executed and acknowledged and processed. We need there to be communication, and there’s been a lot of breakdowns in that pipeline. This is work that has been, in many cases, going on for decades, and people rely on [this funding] to get their medical care.
So there have been some policy changes that have already affected us, and then there’s been a lot of the lack of clarity around existing law. Is the budget from Congress for previous fiscal years going to be faithfully executed?
Dollars are being moved around, and the state of Oregon is having to make tough decisions about what direct health services will we continue to fund when we don’t know what the federal commitment is going to be in the future?
The last thing I’ll say is, this will create dependencies down the road. These are dollars that prevent the transmission of HIV and other diseases. When those services aren’t being provided, it creates externalities and much larger costs down the road. We know that a new HIV diagnosis results in approximately $1 million dollars in health care spending for that person’s care over the course of their life. So every case where we can prevent a transmission from occurring, is big for their quality of life, and it saves huge health care costs.
So is CAP budgeting for reductions to staff and services?
Yes. The newest federal budget proposes dramatic cuts to all of these services that we’ve been talking about. Those federal dollars are essential for people to continue on their health insurance to prevent the spread of these diseases, and to get care for the people who already are diagnosed with HIV. We don’t know what those exact numbers are yet. There are top-line numbers that have been moved through Congress as part of this budget bill and but there’s still a lot of appropriations that have to be done, and there’s still a lot of horse trading and negotiation about how those are divided up amongst programs at the federal government.
So will all this result in more infections?
Definitely. And we’ll also see people who are currently living with HIV, who are well-managed, who are on effective care, losing insurance, losing access to their medication, losing access to their medical provider and potentially interrupting their work and housing situation.
And all that has a lot of externalities and costs to the system. One of the biggest costs will be higher emergency room utilization, which a major concern a lot of our partners are experiencing.
So yeah, this will damage those people’s quality of life, and it’s also a really expensive way to handle the situation.
Will CAP try to find money elsewhere, and make do with less?
It’s going to have to be both, and we’re scrambling right now to achieve as much as we can.
That means really leaning into our private fundraising and the people who donate to organizations like CAP, and building up our revenue generating services, which are like our primary care and our residential services and the things that interact with insurance companies. [We’re] also thinking hard about what is the least painful thing to sacrifice. The organization is being as lean as possible. Less than 10% of our costs are used administratively right now.
We’re already kind of at the end of the road of many years of stagnant funding in the face of inflation. This is kind of a dynamic that’s been going on for a long time. And now, the pressure is really on to dig even deeper.
Is the word ‘crisis’ appropriate? I know that word has been associated with HIV/AIDS in the past, but is it appropriate here?
I think that that’s the direction we’re going. But it’s a crisis of the healthcare system more than it is a crisis of HIV. Because remember, the medication is extremely effective. If you’re able to get it and take it, then you’ll live a long, healthy life. The problem and the reason why there are new infections happening is because people don’t have an entry point to health care. And so if they lose insurance, or they don’t have a way to get tested, then they end up with those really negative impacts on their life.
An AIDS diagnosis is still for life, correct?
Yes. A person needs to continue taking [medication]. But what will eventually happen if they continue taking it every day is they’ll become what’s called undetectable or untransmittable. And that means that in a specimen of blood, you could zoom in on it and you wouldn’t find any HIV cells. The person still has some possible remnant of HIV in their body, and if they were to stop taking their medication, eventually that HIV would resurface.
There’s a lot of medical debate about this. There have been a few fringe cases of individuals who have arguably been totally cleared and have no HIV remaining. And those are kind of extraordinary cases. But the typical outcome that somebody can expect if you take your medication every day, you will live a long, healthy life.
I want to ask in the starkest terms possible. Will people die as a result of these changes?
Ultimately, if untreated, HIV is a fatal condition. It becomes AIDS, which means that a person has a compromised immune system. It means they will not be able to protect themselves from conditions like the common cold that we fight off every day. So in that sense, yes.
It also is a huge strain on our health care system. That means other people who are waiting for emergency care are going to wait longer; there are going to be fewer appointment slots available. It also is disproportionately uncompensated care. If a person is uninsured and has no income, they have no means of paying for their coverage. So that strains the insurance system, and the state of Oregon is put in a position of having to find emergency stopgaps to fund those costs federal programs used to fill.
So why should the federal government continue to support what you do?
I think the short answer is that it’s the most rational and efficient way to respond to the HIV crisis. Prevention is so much more cost-effective than treating HIV. HIV medication is extremely expensive, and people who are living with HIV often, especially at the beginning, especially before they know their status, have their life significantly interrupted because they’re dealing with severe side effects. When somebody is able to have medication, they live a long, healthy life, they live a productive life, and they’re able to provide for themselves in a lot of ways.
There’s been decadeslong bipartisan consensus that supported this prevention work and the research and the development of medication and tools for testing and diagnosis. And this is what’s being really unraveled now for the first time. It’s permanently damaging our ability to keep the people who provide these services. And it’s going to take years to rebuild those competencies once they’re lost.
And in the meantime, what we’re going to see is increased emergency room utilization, more people who are transmitting to others, and more people who discover their HIV diagnosis late when they come in really sick and need emergency, complex specialty treatment.
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