Community speaks of gap in HIV care, testing in Pierce County

More than six months after the Pierce County AIDS Foundation (PCAF) closed, community members and service providers say there is still a void for people in the county seeking testing and care for HIV/AIDS.

Pierce County has the second highest rate of people living with HIV in Washington, according to the Tacoma-Pierce County Health Department. Between 2015 and 2019, the county had 249 new cases, according to data from the Washington State Department of Health (DOH).

Before closing, PCAF offered HIV testing, nutritional programs, and social and supportive services for people living with HIV, including case management. 

The organization closed in October after the DOH pulled its contracts that helped finance care, amid a plethora of financial, personnel and management concerns, reported on extensively by the News Tribune, including letting go former CEO, Ace Robinson. In the months leading up to the closure, services already were lessened or had stopped, according to a former PCAF client and a former PCAF staffer.

“I think the absence of PCAF, an organization that really was a long-standing organization, central to coordination of care for folks with HIV, has really left a big void,” said Paul LaKosky, executive director of the Dave Purchase Project, a harm reduction organization that started as a clean needle exchange in the 1980s with an aim of stopping HIV transmission. 

Leaving people behind

University Place resident Rena Bird has found it difficult to connect with agencies and organizations that serve people living with HIV. Her daughter has been HIV positive since 2005.

“It’s been difficult for us as a family to stay connected to her care,” Bird said.

Bird’s daughter has a number of challenges that complicate her care. Keeping track of and supporting her daughter is a challenge for Bird and her husband.

“We just want to know that she’s safe, that she has the medications and the medical care that she needs, that she is sheltered and well fed,” Bird said. “You know, the things that any mother or father, any parent, wants for their child.”

For a time, their daughter’s case manager at PCAF assisted them. That person would get supplies to Bird’s daughter and regularly check on her. 

Since PCAF closed, Bird said she doesn’t know what services her daughter might have access to. She said that organization was the only one that gave her and her husband an opportunity to be partners in their daughter’s health.  PCAF helped with nutritional assistance for Bird’s daughter and allowed Bird to pick up meals to take to her.

“So now that they’re gone, it’s just evaporated,” Bird said of PCAF. “They were like a lifeline.”

Lack of community

Hugo Cruz-Moro moved to Tacoma over two years ago with his husband. Cruz-Moro has been living with HIV for 37 years. 

When he moved there, he sought case management through PCAF. Cruz-Moro eventually also used the program that granted clients gas cards so he could travel to Seattle for medical appointments.

Cruz-Moro said what he most misses is the community.

“What I miss is that sort of activity with peer HIV positive people,” Cruz-Moro said. “We were new to Tacoma. So, we were making a really nice group of new friends there.”

No place has replaced that sense of community for Cruz-Moro.

As an artist and educator, he hopes to bring art classes soon to the Tacoma Art Museum for community members living with HIV to harbor that sense of community and place. 

“That’s an important part of the maintenance of the recovery,” Cruz-Moro said. “That sort of community making.”

Some case managers were fired from PCAF before the organization closed, while others were rehired on a temporary basis by the DOH. Cruz-Moro is one of the clients whose case manager was rehired with DOH, so he said he hasn’t experienced any gaps in service, although he knows that is not the case for everyone. 

“I’ve always wondered what happened, if any more people fell through the cracks, and I’m sure they did,” Cruz-Moro said.

At community meetings, Cruz-Moro said he’s heard from family members and seen people he worries have been left behind in the wake of PCAF’s closure.

Even leading up to the eventual end of the organization, services ground to a halt. Rent checks, money for transportation, food and other social services disappeared, Cruz-Moro said.

While the basic services may be reinstated in the community, Cruz-Moro said the care will never be enough without more community-led work.

“It’s never community-based enough, as far as I’m concerned,” Cruz-Moro said. “This is a community issue.”

Workplace problems

Megan McNett-Firestone is one of the case managers fired by PCAF prior to its closure. 

She has described inner turmoil in the organization during a time when client needs were not being met. At the time of her dismissal, she was a case manager for 65 clients, she said.

McNett-Firestone said she and three of her colleagues submitted a report claiming alleged financial mismanagement by the organization’s leadership before they were fired. 

The phone number listed for PCAF is no longer in service. Contacts made to accounts believed to be associated with former PCAF CEO, Ace Robinson, were unanswered at the time of publication.

PCAF used to offer rental assistance and motel vouchers to meet clients’ housing needs, but, McNett-Firestone said whenever she would try to access those programs for clients, there was differing information about how much was available in funding. The News Tribune has reported on allegations of financial mismanagement. 

“We couldn’t really do anything,” McNett-Firestone said. “I mean, technically we were still case managers, but financial mismanagement was occurring, and there was literally no money for anything.”

She and three colleagues reported their concern to the organization’s board in May of 2023, but the reply was that nothing was wrong. Then, she said, PCAF fired her in August.

From conversations with former colleagues, McNett-Firestone said she understands that staff were given only two weeks’ notice of the October closure, and clients were not officially notified. She has heard from people working in other outreach services that former PCAF clients are still unaware of what happened to the organization and why they aren’t receiving services.

Referring to one client, McNett-Firestone said as recently as early 2024, that he didn’t know PCAF was closed and assumed his phone calls were just being left unanswered

While DOH has taken over some of that case management, McNett-Firestone said it is hard to access because she doesn’t have a phone number, website or email address she can point people to in need. Instead, she refers them to two former colleagues who she knows are still working in case management.

Closure and confusion

After PCAF closed, miscommunication led people to closed doors — literally. For months, people seeking HIV testing in the county would be directed to PCAF.

“It’s literally an empty building,” said Pierce County Councilmember Jani Hitchen. Hitchen said the most difficult part of the closure has been the lack of communication about where people could seek care.

While an internet search no longer points people seeking care to the closed PCAF location, there is still a lack of walk-in and free HIV testing in the county. Other providers require insurance or an appointment, which can be a barrier for some community members, organizations working with this population say. 

“It’s not like the need for HIV testing suddenly went away; it existed the entire time we were going through this change,” Hitchen said.

The AIDS Healthcare Foundation (AHF), an international organization that DOH began contracting with for testing in the county in January, now offers testing at the Rainbow Center Thursdays from 4 to 7 p.m. and with its mobile testing unit. 

Options for clinics that require appointments for HIV testing can be found here. 

Moreover, after DOH had finalized establishing AHF as a provider, there was still no testing. AHF was unable to begin testing until March 28. 

Spokespeople reached at AHF declined to respond for this story. The DOH said the agency is declining media interviews regarding this situation. 

At first, Hitchen said everyone was waiting for DOH to do something, such as select a new provider to contract with. When AHF was chosen, they couldn’t begin providing testing immediately.

“There really wasn’t testing happening because they were waiting for licensure,” Hitchen said. “People were in limbo, and when you’re talking about communities that don’t trust medical care, or don’t have access to medical care, you’re putting them at risk.”

How big a risk is unknown. Hitchen said she didn’t know if this gap in testing access possibly heightened HIV transmission in the county.

“I think it’s one of the worries, especially within the LGBTQIA community but also just in the general public,” Hitchen said.

HIV is an infection that can be spread through direct contact with bodily fluids. Experts say advances in medicine have made this a manageable condition, given proper treatment and support.

Barriers to service

The Dave Purchase Project also offers free HIV testing in partnership with AHF. The organization began testing with AHF in mid-April, LaKosky said.

Still, there is a difference between availability and accessibility of services, LaKosky said. While services might be available in a place, accessing those services might challenge individuals for a variety of reasons.

The interest in getting tested is a lot lower than it was in the 1980s and 1990s, LaKosky said. Among the population the Dave Purchase Project serves, LaKosky said there is not as much demand for testing unless organizations incentivize it. 

At the organization’s G street location, people who get a HIV test are given a $10 gift card.

A number of factors may prevent someone from seeking testing, but LaKosky said his organization always will offer it. 

Furthermore, AHAT Homecare has attempted to meet some of the care gaps in the wake of the PCAF closure, particularly for its clients, Hunter said. The housing organization has partnered with Virginia Mason Franciscan Health and Eloise’s Cooking Pot to provide hot meals to clients. Recently, Pierce Transit distributed ORCA cards for its transit system to AHAT clients to assist with transportation.

However, Hunter said, “We also need the community’s help, as well as the Department of Health in their current case management to help manage our clients and provide more resources to our clients.”

Since PCAF closed, some AHAT clients still lack medical case management. Hunter recently submitted a grant to get mental health care for clients, he said.

“My understanding is that the community wants to start a grassroots effort/call to action, similar to during the HIV/AIDS crisis in the ‘80s,” Hunter said.

During a town hall on April 13, which was not open to the media, Hunter said community members shared a desire for the AHF mobile van that offers testing not to advertise itself as a HIV mobile clinic, because of stigma around the disease. The hope would be that this would remove one barrier to testing, he said. 

Hunter shared that other takeaways included a desire for the new contracted provider to meet the community where people are and be brought to the heaviest impacted populations. From these conversations, Hunter said there is hope that this work can be more community-driven. 

Hitchen has written multiple letters advocating and asking state leaders to address these concerns. She said she has met with the DOH twice, including a meeting with Washington Gov. Jay Inslee. She said she hopes the county is now moving in the right direction to address these problems. 

“I think there’s a lot of people that are frustrated in our community, and rightfully so, but I truly believe we are on a path now to be in a better space with what has happened,” Hitchen said. “It just took way too long to get here; it definitely should have gone a lot smoother as far as I’m concerned.”

Because the DOH is finalizing a contract with additional service providers, Hitchen could not share what progress had been made. 

However, a big priority was to find a provider that could meet the continuum of care people living with HIV need, including housing, transportation, food and medication management.

Editor’s note: If you or a loved one has struggled to access care and supportive services while living with HIV, or has encountered trouble when trying to get tested, please reach out; we want to hear from you. You can reach reporter Lauren Gallup directly at lauren.gallup@wsu.edu, or always reach the news team at news@nwpb.org. Thank you.