A laundry list of roadblocks—including funding challenges, partisan politics, and a full-scale attack against the LGBTQ+ community—have made progress toward the Ending the Epidemic in the U.S. initiative (EHE) modest at best. In this edition of “The Take,” Avita Chief Advocacy Officer Glen Pietrandoni talks to HIV and LGBTQ+ expert, advocate, and advisor Ace Robinson about the odds of hitting prevention goals by 2030. “We have to be prepared for what’s coming,” says Robinson. Read on to learn why.
Glen: Ace, we’ve been buddies for a while, and I appreciate your joining us today. To kick things off, tell me a bit about your role at PCAF (Piece County AIDS Foundation) and its mission.
Ace: I’m the proud CEO of PCAF. We are one of the last remaining service providers focusing specifically on HIV in western Washington. Our mission is to make sure we’re serving historically excluded communities and to provide culturally responsive and timely care.
When we say we are a health care refuge for historically excluded communities, we’re speaking about the communities that have been mistreated and maligned, not just in terms of HIV response, but in other modality responses as well. Specifically, Black and Indigenous populations, people of color, LGBTQ+ populations, people who use substances, people with unmet brain health needs, and people who have experienced being unhoused.
We have two brick-and-mortar buildings. Our headquarters is in Tacoma, Washington, and we have another office in Olympia, the state capital. We also provide rural health services. We’re expanding our catchment area seemingly every day.
The pressure of co-occurring epidemics
Glen: First question for you: When we look at the latest CDC data, there’s been a recent decrease in new HIV cases. However, many experts would argue that the data isn’t accurate because fewer people were tested during COVID-19. The data points out disparities for underserved communities, such as Black and Latino gay and bisexual men. What’s your team seeing in the community you all are serving?
Ace: It’s important to point out that we have co-occurring epidemics going on [in addition to HIV]. In the South Sound part of Washington state, we’ve unfortunately made the national news for fentanyl-related overdose deaths. The opioid epidemic has a strong foothold here. The STI epidemic also has a strong foothold here.
We also have all the pressures that come from the housing crisis in the Seattle-Tacoma area, where individuals are displaced multiple times during a short period. Many are dually displaced, which means they have been involuntarily relocated due to housing/rental costs or property tax costs twice in five years. We’re working through all these epidemics to serve our clientele.
The need to diversify quickly changing funding streams
Glen: Let’s talk about funding. Regarding your funding stream in Washington, are you seeing most of your resources coming from the state level, donations, or federal grants?
Ace: Upon my arrival in Washington state, PCAF was vastly funded, almost 90%, by the Washington State Department of Health. Since then, we’ve worked admirably to diversify our funding streams. Now that number is at about 70%. It’s not where we want it to be, but it’s where we are right now. We’re funded by the state, a few counties, some cities, private donations, and traditional fundraising. We’ll soon be moving into clinical care as well to provide care centered on MIPA principles. Not only because the clients need it but because it’s also a revenue source. There are all these pieces to make the business work.
The bigger conversation we need to have is about the overall state of HIV funding in the United States today. We’ve seen private foundations move away from supporting HIV-specific programming to fund more LGBTQ+-focused work instead. I remember seeing the writing on the wall when the Arcus Foundation stopped funding HIV work and expanded their funding of primates, the great apes. So, there’s this major drop-off in funding for HIV-focused work, and pharmaceutical industries have supplanted a lot of that funding.
We’re also seeing a reduction in private donors. The reality is that as the traditional donors are more removed from the clientele that we’re serving—the clientele who are not only acquiring HIV but are progressing and, unfortunately, dying from HIV—those are not necessarily the people who are in these donors’ friend circles. They are now literally the people they step around or over to get into the grocery store. So, that reduces the amount of funding that comes to our work.
Digging deep into the CDC data
Glen: Getting back to the latest CDC data, do we trust it? Is there anything changing in your community that isn’t reflected in the CDC’s data? Are we sending the wrong messages as a result?
Ace: The part of the CDC data that is of most interest to us covers the individuals who have advanced HIV upon diagnosis and individuals who are meeting additional challenges in accessing HIV treatment and preventative services. Upon diagnosis, people are being set at stage three or four, or what in the 80s and 90s we called AIDS—especially individuals who are younger or older.
When we say younger, per the CDC, we’re talking about the under-24 crowd. And when we say older, we’re talking about the over-55 crowd. Those individuals are being diagnosed with further advanced HIV compared to the folks who are 25 to 54. A serious concern for us is how to engage those two populations when their needs are so disparate. We must ensure we have the right mindset. We seem to be doing a relatively decent job of serving folks in their middle years but not as great a job for younger or more mature folks.
The success of HIV treatment depends on listening to the community
Glen: On that note, what do you think about the implementation of long-acting HIV therapy? I think it would be ideal for those two groups. How is availability and access to long-acting therapy coming to life in your community?
Ace: The qualitative data is overwhelming: If you’re under the age of 35, you want treatment that’s long-acting. Like, “I want my six injections a year and to call it a day.” If you’re over the age of 50, you want oral medication; “I want to pop a pill and call it a day.” And people in between are mixed. If we’re listening to the community in an appropriate way, we’re going to create [treatment] systems that work for individuals in a segmented pattern.
When it comes to long-acting injectables, implants, and so on, we need to ensure we’re gearing up to create systems that remove barriers for the under-35 crowd. And the barriers for the under-35 crowd differ from those for the over-50 crowd. If I’m a 25-year-old, my first barrier is whether I’m even aware that long-acting exists. Number two, where can I get it? Number three, can I get it when I’m available because I’m more likely to work an hourly job. And then, number four, will I be cared for by a clinician who will respect who I am as a person, whether I’m street-involved, no matter what my gender identity or race is, and so forth?
These are the things we must think about. We have to create systems that are responsive to what people are already telling us.
Ending the epidemic: “We know what works; it’s just whether or not there’s a will to do it.”
Glen: Moving on, let’s talk about ending the HIV epidemic. What needs to change? Now we’re hearing that some legislators want to defund specific initiatives, even though there’s so much more work to do. How do we fix this? We’re behind schedule.
Ace: We’ve seen places where EHE activities have been successful, like Baton Rouge, Baltimore County, and Cook County in the Chicago area. And then we’ve seen places that are utter failures. The difference is: What does the meaningful involvement of people living with and disproportionately impacted by HIV look like? The systems that have taken that to heart have seen a turnaround. It wasn’t even gradual. We saw drop-offs in HIV incidence and increased uptake and persistence around HIV prevention and care in real-time. The mathematical modeling says we will do X, Y, and Z and have this slow tapering of HIV incidences. But we saw that if you do everything appropriately, [the incidence rate] falls off a cliff.
When it comes to HIV-related morbidity, we’ve learned that when you bring in individuals who are reflective of the impacted communities, you reduce medical mistrust and myths. You increase the uptake and persistence of best clinical practices. We know what works; it’s just whether there’s a will to do it.
Moving the HIV advocacy needle: Having the right people in the right places
Glen: And then there is the political landscape we live in. What type of HIV-related advocacy is happening in Washington? Washington state is usually very progressive, right?
Ace: As you may have heard, Washington state has gone backward in its HIV-related policies. At one point, they were thinking about doing away with their 340B program. They almost got rid of the PrEP (pre-exposure prophylaxis) drug assistance program. We very quickly moved into the realm of problematic states. When it came to HIV care, we had people from the U.S. Congressional HIV/AIDS Caucus reaching out, saying, “What’s happening in your state?” because it was making the news in the most unfortunate way.
This goes back to; do you have the right people in the right places? At the Washington State Department of Health, we’re not seeing a high level of individuals who reflect the epidemic. Then HIV becomes an esoteric conversation as opposed to a personal conversation. We must move away from that, or we’ll keep making these missteps.
One example of an initiative we took to remove patient barriers was working with our legislature to end all prior authorizations for HIV-related care for anything that was approved up until January 1st, 2023. We must create models of care that center on patients. We know what works. We just need our public health policies to get in line so that people don’t face these barriers to a longer, healthier, and happier life.
Final thoughts: “We have to be prepared for what’s coming”
Glen: With the time we have left, I want to open the floor and give you an opportunity to voice other issues that are top of mind for you.
Ace: I think the big piece is that we’re looking at where we are as a country and which communities are being grossly attacked politically. The one that’s most overwhelming, of course, is our transgender/gender non-conforming community. The conversation we must have, and I’ve had these conversations with the CDC, is that we are where we are politically. Let’s not pretend this isn’t happening.
We know that trans kids are under attack. We know that in some states, trans adults are under attack. We know individuals’ health-seeking behavior is going to be compromised. And with compromised health-seeking behavior, we know what will happen with HIV incidence, progression, and potential morbidity.
We also have to prepare for what will happen in 10 years because Generation Alpha will probably be the most transphobic generation we’ve seen in the history of the United States. We’re talking about 10-year-olds who are currently being taught to hate people based on their gender identity across the United States. These 10-year-olds are seeing attacks against Black trans women, which has been going on forever, and noticing what’s happening with people not having access to jobs, clothing, and secure housing. All of this will impact our populations going forward.
That’s where we are. We have to be prepared for what’s coming, and it’s going to be an onslaught of HIV incidence, progression, and morbidity, specifically in the TGNC (transgender and gender non-conforming) communities.
What’s your take? Whether you have an idea for a future guest or topic for our series or would like to comment on the insights of one of our past guests, we’d love to hear from you! Reach out to us at [email protected].
About Ace Robinson
Ace is chief executive officer of Piece County AIDS Foundation (PCAF) in the South Sound of Washington State. An accomplished and well-respected health care administrator in the fields of HIV, STIs, hepatitis, mpox, coronavirus (COVID-19), cholera, chronic illnesses, and the behavioral impact of brain health biomarkers, Ace has proven success in procuring public and private funds to support research initiatives and leading progressive research policy agendas. He continues to demonstrate a successful track record of developing, implementing, and integrating the programmatic outputs of agency divisions under the auspice of one contiguous mission. Ace has informed knowledge of the health care market and is an active advisor to local, state, and federal governments with respect to the full implementation of the Patients’ Protection and Affordable Healthcare Act (ACA).
An experienced leader throughout a diverse set of health modalities including oncology, HIV, and behavioral health, Ace consistently demonstrates strong management and leadership skills with an excellent track record of improving employee output and efficiency through strategic communication and skills-building. He has an exceptional ability to forge and enhance relationships with major donors, funders, clientele, and other stakeholders.
About Glen Pietrandoni
Glen is chief advocacy officer at Avita Care Solutions, an award-winning pharmacy leader, passionate 340B program advocate, and internationally respected HIV and LGBTQ+ activist. He’s deeply engaged in Avita’s mission to advocate for health equity and the 340B Drug Pricing program and works to bring together stakeholders from the pharmaceutical industry and patient advocacy arenas. Through webinars, conferences, Avita’s thought leadership blog series “The Take,” and the organization’s engagement with multiple community and trade associations, Glen leads Avita’s educational and awareness efforts and acts as a voice for its covered entity partners and patients. He continually fights for continued access to the 340B program and advances stigma-free HIV, PrEP, LGBTQ+, and sexual wellness care for underserved patient populations.
Glen recently received Pharmacy Times’ Lifetime Leadership honor at the Next-Generation Pharmacist awards. He serves on the Board of Pharmacy for the State of Illinois, was formerly chairman of the Board of Trustees of AIDS United, and sits on the board of Community Voices for 340B (CV340B). He has earned American Academy of HIV Medicine and Apexus 340B certifications.