Georgia on My Mind: ADAP Short-Term Success, Long-Term Issues Remain

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate 

In September 2020, the National Alliance of State and Territorial AIDS Directors (NASTAD) released details from their request for information from their members and partners regarding COVID-19 impacts on HIV prevention programs, hepatitis programs, and Ryan White HIV/AIDS Programs (RWHAP). While the findings were promising in terms of federal flexibilities, the details of impacts among Ryan White HIV/AIDS programs, in particular State AIDS Drug Assistance Programs (ADAPs), were quite concerning. Among reported impacts, NASTAD stated “A majority of respondents also reported anticipating increased burden to the RWHAP as people lose their health insurance and income due to the economic downturn.”

Georgia ADAP advocates took note and began investigating the status of the state’s ADAP. However, despite requests, the state provided no information until a November meeting. At that time, Georgia’s Department of Public Health (DPH) shared they anticipated an $11 million funding gap for the program. Similar to the situation in Texas, DPH cited a HRSA rule on state matching funds and an “increase in enrollment” in order to justify introducing cost containment measures (e.g., reducing formulary inclusion, lowering income limits for eligibility, waitlists). However, under closer scrutiny, advocates ran into a familiar problem: the state had not increased funding for ADAP in over a decade, despite the program having grown by about 130% since the last increase. So why now the issue?

Georgia, like every other state, is grappling with the economic impacts of COVID-19 on tax revenues and appropriately planning their budgets.

Artwork provided by The Feminist Farmwife

Highlighting Georgia’s new HIV diagnosis rates, efforts aimed at Ending the HIV Epidemic, and the necessity to provide HIV medications as both treatment and a prevention activity, Equality Georgia lead the effort of asking the state legislature to finally increase funding for the state’s ADAP. Legislators in the House were widely amenable to the necessary increases, but Senators were skeptical and required a bit more effort. State Senators visited service sites and spoke with providers and PLWH about the funding and program concerns. Senators found what advocates and PLWH already know: federally funded providers already maximize their federal dollars – the issue in Georgia isn’t the use of federal funds at the provider level, it is lack of regular program funding increases on both the state and federal level to match the needs of the moment. Indeed, no one is paying the same for medications or care as they did a decade ago.

Advocates also organized four days of community-based “lobbying” including phone calls and emails to members of the Senate appropriations committee before finding success. A key, they said, was being selective: focusing on messaging regarding longer term costs of failing to act now and only targeting Senators on the appropriations committee. 

Jeff Graham, Executive Director of Equality Georgia said, “It is the value of keeping people healthy and in many instances, that means that people are able to retain their jobs.

“People are able to continue to be productive members of society by having this support, and frankly, the cost of medications itself is far lower than the cost of providing the intensive medical care if people don’t have access to medications early on and get sick and get hospitalized,” he added.

Ultimately, advocates argue, this wouldn’t have been an issue if the state were maximizing its use of 340B rebate dollars and had expanded Medicaid – a talking point expansion advocates across the state would benefit from latching onto.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Houston, We Have a Problem: Texas ADAP Clients in Jeopardy

Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

**** ADVOCACY UPDATE BEGIN: February 23, 2021 ****

Texas HIV Medication Program - Spend Down Discontinuation Delayed for ADAP 

**** ADVOCACY UPDATE END ****

On October 16th, 2020, Texas Department of State Health Services (DSHS) let its HIV Medication Program Advisory Committee (THMP-MAC) know revenue cuts and the probability of a program budget shortfall and that they would provide more detailed information at the next quarterly meeting that was held January 29, 2021. A change local advocates and the state estimates will impact at least 2700 clients.

On January 5th, 2021 DSHS emailed THMP-MAC members of drastic changes to client financial eligibility that took effect on December 28th, 2020. 

Advocates summarize the previous spend down policy regarding eligibility as follows: “For decades, the state has taken into account the cost of medications when determining eligibility for the ADAP program. For instance, if an HIV positive individual was applying for the THMP program and was at 203% of the federal poverty limit, the cost of their medication would be deducted from their salary and they then could qualify for the program.” 

Artwork provided by The Feminist Farmwife

In making the move, DSHS cited a 2019 Health Resources and Services Administration (HRSA) audit finding the state "’making eligibility determination based on a factor that is not equal to all clients and is out of the client's control, such as the applicant's medication needs’ and therefore was not utilizing consistent eligibility standards”. However, during the January, 2021 THMP-MAC meeting, DSHS admitted the issue is far more dire and not necessarily the direct result of any HRSA finding.

In summary, the state of Texas, like many other states, is finding itself in a revenue shortfall as a direct result of COVID-19’s economic impacts. Facing higher than usual unemployment, thus more people being financially eligible for a wide range of state-funded assistance programs, and lower than usual revenue, the state has responded by cutting budgets across programs and adjusting programmatic parameters, including eligibility. The state’s ADAP is no exception…except the projected shortfall for THMP is $52 million dollars. DSHS officials cited a rising cost in certain single-pill regimens and a 28% higher than expected rise in client enrollment as the driving factors. Simply put, medications are more costly and more people need help getting them.

The state of Texas has already taken to adjusting THMP’s formulary and coverage; removing coverage of Hepatitis C medications, returning to in-person recertification requirements, requiring clients to pick up medications in person, and reducing ARV fills from 60 and 90 days to 30 days. Additionally, DSHS has made some internal transfers toward THMP, is requesting clarification on unspent CARES Act funding in terms of allowable expenses, using unspent dollars from previous years’ grant awards, and supplemental HRSA awards. If these moves fall through, the state may enact additional “cost-containment” measures as allowed under Texas Code; including reducing eligibility from 200% federal poverty level to 125% FPL or, most drastically, cease new client enrollment and return to an ADAP waitlist.

Most of the solutions suggested only work short-term. And there’s the rub…economists have projected some extremes in terms of the economic recovery, ranging anywhere between the end of 2021 or up to 5 years.

Long-term survivor, aaa+ member, and THMP-MAC vice-chair, Frank Rosas, speaking only in his personal capacity stated, “One of my biggest concerns about the ADAP eligibility changes in my State is that it will disproportionately affect marginalized people, especially people of color living with HIV and in rural areas. These proposed actions are not in alignment with national initiatives such as EHE(End HIV Epidemic) and Fast-Track Cities, which all of the major cities in Texas belong to.”

Indeed, in the age of “undetectable equals untransmittable”, with the knowledge lifetime costs of a mere 1% increase in new HIV diagnoses would outweigh any temporary savings, and with the national effort toward Ending the HIV Epidemic, these moves fail to meet their goal: there is no “savings” to be had by a state at the cost of client quality of life and access to medications for those most in need. Indeed, the most direct path toward state savings is the same path to Ending the Epidemic and meeting the humanitarian need of the moment: fully funding THMP.

State legislators would be better served advocating for the next federal COVID relief package to include specific earmarks for ADAPs and/or explicit allowable reimbursements from relief funds for ADAPs and appropriate allocations for the same. 

If COIVD has taught us anything, it should be that prioritizing access to care on the individual level serves the interests of public health, especially in the case of infectious diseases. We won’t beat this pandemic by sacrificing the survivors of the last.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

How is Covid-19 Impacting People Living with HIV/AIDS, Survey Asks

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Several advocacy organizations have teamed-up to ask an important question of people living with HIV/AIDS: How is Covid-19 impacting you? 

It is unknown how many people living with HIV/AIDS have tested positive for Covid-19 in the United States. The ADAP Advocacy Association, Community Access National Network, Community Education Group, HealthHIV and the Legacy Health Endowment are working in collaboration to gain a greater perspective on this issue.

The survey is available online at https://www.surveymonkey.com/r/KCWRSBT. 

The survey is designed only for people living with HIV/AIDS residing in the United States. It does include two qualifier questions for these two things. PLWHAs, regardless if they have tested positive for Covid-19, are asked to complete the survey.

It is a simple, brief survey (typical time spent on the survey is one minute and 32 seconds) but nonetheless an important first-step. "It will give us a glimpse into on how Covid-19 is impacting our community," summarized Bill Arnold, President & CEO of the Community Access National Network.

Are PLWHAs more susceptible to the virus? Are PLWHAs at-risk for greater complications if they test positive for the virus (early research suggests, yes). Not surprisingly, there are more questions than there are answers.

As such, future advocacy, education, and research will use the survey results as a baseline.

COMPLETE SURVEY HERE

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Spotlight on Bobbie Hondo: Trans Femme Dancer & HIV/AIDS Advocate (PART TWO)

By: Fernando Cerezo III, Queer Latinx Writer

<- Click here to read, "Spotlight on Bobbie Hondo: Trans Femme Dancer & HIV/AIDS Advocate (PART ONE)"

New York is a polarizing city, where the privileged brush shoulders with the impoverished. A city that promises to chew you up and spit you out, to test your will to stay. And the reward for sticking it out? Excess, temptation, accessibility and a city that honors the individual. At just 16, Bobbie was newly independent, to figure this city out on her own. After declining a dance program overseas and against her parents’ wishes, she landed in Queens, only a short train ride from Manhattan. She still held the struggles of her past on her shoulders, but it was a new day and Bobbie was determined to once again see her body as an instrument rather than a detriment. She briefly enrolled in Parsons School of Design and if she wasn’t in class, she was in doctors’ offices and clinics all over the city. “You have to be proactive or you will just become a ticket number.”

Bobbie arrived in New York unsure about her Cd4 count, the most important laboratory indicator of immune deficiency. She was taking Abacavir, an HIV medication that severely affects your REM sleep. But what six different hospital visits cost her in Texas was treated at a New York doctor’s office in just one afternoon. She learned about the AIDS Drug Assistance Program, a supplemental program that provided her free medications for treatment. She realized that the key to her health was specifying a formula that worked best for her. “If you’re trans and you’re taking hormone medication, then you have your HIV pills, then if you’re on psychotropics those pills all pile up… These are daily medicines and you feel them working in your body to help your cells function at half the degree they would.” So instead of the 12 pills she had taken for years, Bobbie found medications that were much lighter on her body. Her health was progressing, but she was lonely. Though during these routine visits to clinics, she met fellow patients who saw themselves in her. “I would go to all these AIDS clinics and I would get tidbits from these older queens who would give me books to read and songs to listen to. They wanted to help me grieve [the life I had] then celebrate the life I was taking on.” 

Photo by Marquale Ashley

Bobbie kept up with her health, signed up to a gym and started going out dancing in the West Village nightlife scene. Fatefully a 19 year old Bobbie came to befriend drag artists Mistress Formika, Joey Arias, Hattie Hathaway and the cheeky, southern-born, mother of Wigstock, Lady Bunny. “When I got to New York and saw them in real life my heart dropped… I was like ‘wait you’re the person from my TV set.” They saw potential in Bobbie and took her in, encouraging her to foster a relationship with drag. “I’d get to see and hear all these references and I’d just study these queen’s banter. I wanted to join the repartee but wasn’t ‘polished’ enough and they knew that… so they turned me out.” But there were queens that felt Bobbie was cramping their style and would go as far as blackballing her from gigs if she didn’t sleep with them. “Bobbie is here and she’s one of us” Bunny and Hattie testified. “I really believed I was worthless until Bunny was like, ‘do you know who the fuck you are? Show these motherfuckers how you do it!’...They gave me room to breathe for the first time, to help me get to a place where I can start creating my own history rather than being told [what to believe.]” Bobbie stepped in front of the mirror looking like a vision of herself, in voluptuous black hair, her glamourpuss face, wearing latex catsuits and Vivienne Westwood heels. 

In 2015, Lady Bunny thought it was time to bring Wigstock back. She was approached by HBO to do a contemporary look at the drag festival in the new documentary, Wig. Bobbie remembers the honor of Bunny choosing her as the cross generational gap for the film. Not only was this one of Bobbie’s wildest dreams realized but this also served as her coming out ball. She took the opportunity to share her experience with AIDS, in hopes of inspiring those who continue to struggle from lack of access and stigma.

Along with the boom in recognition, Bobbie received backlash from within her community. One older queen accused Bobbie of ruining the documentary by speaking about AIDS. “No one cares anymore. Why does everything new and gay have to be about AIDS?” she remembers him groaning. Bobbie was piercingly reminded of the exclusionary nature within the queer community.  “I spent a lot of years wearing the term faggot as a badge of honor. But when I came out as trans, suddenly all my gay friends were like ‘sorry sis you’re no longer in this circle group.’ It’s because I’m still too gay to be trans and too trans to be gay… I know a bunch of gay men and trans girls who hate me not because I’m a bitch but because I’m positive.” Some would go as far as outing Bobbie’s status in front of her and prospective lovers. They would say ‘Don’t think you’re something. You’re just AIDS on a stick’... I’m forced to realize I’m in this pocket bubble of living life one way that doesn’t scale to a large portion of people… I have been separated from the pack.” 

Romance was hardly any different. Anyone drawn in by her magnetism was swiftly repelled by Bobbie’s insistence that she wasn’t human and only the virus. So she began to date people who were also positive, who saw through her defenses and related to her trauma. As these relationships progressed, she found empathizing would fester into trauma ranking, differentiating their experience to hers. “The only thing we had in common is that we were both positive so there's a lot of shame associated there… It was very sad because you know what they’re going through and vice versa yet they’re choosing to perpetuate that self-hate.” Sex was even trickier, becoming a hotbed for insecurities. Intercourse, even consensual, was the ultimate trigger for conjuring up Bobbie’s dissonance with intimacy. During sex, Bobbie would only go on for so long before panicking and putting a stop to it altogether. These trauma attacks would come and go, lasting a couple minutes, maybe a few hours, sometimes lingering for a few days. She let go of these partners before they could inevitably abandon her. “They don’t see that side of the world; they’re not attuned to the same fears I have. For me, I really believed that I could not be loved so I left because of that fear.” 

With the uptick in education and forms of prevention, such as Truvada and PrEP, she’s seeing the veil of stigma gradually lifting. Language is changing with the current generation, differentiating “good bloods”: people who regiment their medications and “bad bloods”: for those who don’t. Living with HIV is no longer the death sentence it was in the 80s/90s. Bobbie remembers confiding her status to a lover whose response was “Well that’s what condoms are for, for people like you to have a chance at a normal sex life again.” This shift in social consciousness has allowed her access to a side of intimacy she’d felt was closed off to her. “Serodiscordant relationships I find are much easier now because people who don’t have the virus don’t seem to care. They don’t have these hang ups, so this gives you more room to not have hang ups either and to accept your whole self.” 

For so long Bobbie had been conditioned to believe her truth would be her undoing. “Tell someone you’re positive and they’re going to kill you,” was said by psychiatrists, teachers, doctors and Bobbie’s own parents. But when tasked to embrace herself wholly she’s learned that honesty is the key to loving and being loved. That to advocate for yourself means you’re advocating for others in the process. “You have to be honest about who you are in a way that is palatable for someone who doesn’t know about HIV, but in a way that’s comfortable for you.” At 26, Bobbie is diligent in reframing how we look at the reality of HIV/AIDS, to find deficiency in the stigma not the condition. “I hated when people would say ‘you’re going to have it forever.’ I always say, ‘you’re going to have it for a long time, so start learning about it.” 

Being a 12-year survivor, she has watched the pillars of stigma gradually crack under the tides of change. She raved about the pioneering work of Dr. Demetre Daskalakis, who’s made a reputation of radically preventing and controlling HIV/AIDS. She also boasts about Harlem United, a non-profit organization dedicated to offering social services to vulnerable populations. Bobbie looks forward to a new world that takes the power away from HIV stigma and uses it to uplift the stories of the present. “We’re so wrapped up in glamorizing the 80s AIDS crisis. We’re so subscribed to David Wojnaroqicz’s [work and AIDS advocacy] that we are refusing to acknowledge the voices of today to grow past the 80s. I love Wojnaroqicz but he died in 1992, AIDS didn’t stop when he died. But those seem to be the only stories we continue to hear. That’s why I’ve made it my mission to speak about [HIV/AIDS] as publicly and with as much candor as I possibly can because there is a whole new world out there.”

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.