An Expression of Support for Basic Human Decency
Earlier this week, ADAP Advocacy Association and Community Access National Network (CANN) issued a joint statement announcing an embargo of each respective organization’s patient advocacy and education activities within the state of Florida. Both organizations also cited a need to protect advocates and patients from outside of the state from the very real dangers associated with traveling to the state, while also emphasizing that both organizations will continue to support local advocates in the state as they work to create positive public policy changes for Floridians living with HIV. The decision to adjoin both the ADAP Advocacy Association and the Community Access National Network to the previously issued formal travel advisory by the NAACP wasn’t taken lightly because maintaining strong ties to the community is important in generating effective advocacy. The move wasn’t a political statement either, but rather an expression of support for basic human decency.
The announcement comes after the state’s governor, Ron DeSantis, signed into law a series of bills targeted toward harming Black, Brown, LGBTQ+, and immigrant people. The transgender community was probably singled out more viciously than any of the marginalized communities throughout this hate-inspired Florida Legislative Session. Make no mistake about it why this effort to enflame a “culture war” is an issue of organizational values and something quite personal to both of us. The non-trans guy here taking issue with the fact that the trans guy here now cannot take “a leak” without fear of being charged with a felony has nothing to do with politics and everything to do with basic human rights.
The fact is we both previously lived in the state for many years – it’s where we started our HIV policy work, even before we knew one another. It is where we met over a decade ago. Upon reflection, we still can regularly be found discussing mutual friends from Florida, those still living and those who have passed on, in different phases of their lives.
From recalling Bishop S.F. Makalani-MaHee's testimony to the Florida Legislature in 2016, against a bathroom bill (which failed that year), to his death on Transgender Day of Remembrance in 2017, part of this internal discussion was a reflection on the deep history he had with advocates serving both the Transgender and HIV communities of the state. What we’re witnessing right now in Florida is challenging for us, personally and professionally, but state-sponsored discrimination, hate, and stigma drew a line that cannot be ignored.
In 2017, Human Rights Watch published an important report, Living At Risk: Transgender Women, HIV, and Human Rights in South Florida and the very same year ADAP Advocacy Association published it’s issue paper, Transgender Health: Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS Under the AIDS Drug Assistance Program. Both of us worked on the ADAP project, and it was important for a transgender advocate (Jen) with lived experience to lead in writing model policies meant to serve Transgender People Living with HIV. The decision to issue a travel advisory in Florida for people living with HIV is rooted in disparities and areas of improvement emphasized in those two reports.
Much of our hearts belong to Florida for the dedication and innovation the people of this state can and do offer, despite every unnecessary public policy challenge they face. People like Mick Sullivan and Donna Sabatino (formerly with Tibotec Therapeutics), Connie Reese and her amazing work with Simply Amazing You Are (SAYA) in Miami-Dade County, Riley Johnson promoting trans equality in accessing medical care via RAD Remedy, Michael Ruppal’s leadership with The AIDS Institute, and the late Tiffany Marrero, who served to voice the experiences of vertical transmission patients and Black Women and only recently left us. Heck, Trelvis Randolph and Maria Mejia both reside in South Florida, and they serve on CANN’s board of directors. These folks not only are colleagues, but they are friends and expressing concern over traveling to a place once call “home” saddens us.
But some things are larger than us. Recognizing the inherent roots of racism, which has prompted the NAACP to issue a travel advisory, our joint statement read, in part:
The state of Florida's moves to harm Transgender people, Black and Brown communities, and immigrant families undermines the exceptional work the state's Health Department has done in the last several years and only serves to further existing health disparities affecting these communities, particularly as it relates to HIV. For example, according to Florida's own data, while Black and Hispanic/Latino communities make up about 15.6% and 26.7% of the state's population, respectively, these same communities represent 37.7% and 39.6% of HIV diagnoses. Put another way, in Florida, while white people experience a rate of HIV diagnoses of 8.5 per 100,000 people, that rate among Black communities is 51.8 and for Hispanic/Latino communities it's 31.7.
Similarly, Florida has, in years past, made extraordinary strides in ensuring transgender people can access HIV related care, specifically by integrating best practices and guidance from the Health Resources and Services Administration (HRSA) on integrating gender affirming care into HIV care provision. Indeed, as a result of these moves, transgender women represent some of the greatest successes in linkage to care, retention in care, and viral load suppression of any demographic in the state. Recently signed bills prohibiting state contracted clinics from providing gender affirming care will have a dramatic affect in reversing these long sought after wins.
Make no mistake, we are frustrated with an apparent lack of involvement from the federal agency charged with implementing the Ryan White HIV/AIDS Program. Because Ryan White program dollars are passed through the state and then contracted with counties, local areas, or directly with a provider, and because other health initiatives of the state are also part of how providers in Florida acquire funding to provide public health services, they may be prohibited from providing gender affirming care at all - regardless of where those dollars originate (state or Federal).
It is incumbent upon HRSA to provide guidance beyond ‘allowable’ uses and inform that state it has contractual, fiduciary responsibilities associated with its grant and subrecipient contracts to ensure these dollars serve these communities. HRSA must move beyond the language of ‘allowable’ uses to ‘expected integration of best practices.’
In many situations, we have been willing and able to confront harsh environments. Indeed, we recognize the need to be present in the spaces where political forces wish to silence us. However, Florida has crossed a line in becoming hostile to the very existence of Black and Brown and Immigrant and Transgender people, those same communities most affected by HIV. The people who enacted these hateful laws were motivated by hateful politics; our response is motivated by concern for the people we’re charged with representing in our community…many of whom feel silenced. This is a line which we cannot cross and still consider ourselves as living the values we espouse.
We came to the difficult decision that neither the ADAP Advocacy Association or Community Access National Network will host any advocacy or educational event in the state of Florida. We will continue to support local advocates and people living with HIV residing in the state, including scholarship support for intrastate travel by local advocates. We will continue to offer analysis on the state's activities. But we will not ask advocates from outside of the state to risk their mental health or physical safety to travel to the state.
Jen’s Half Cents: Attacks on Abortion and Trans Care are Attacks on Medication Access
Coming into HIV advocacy, I was quickly introduced to this idea that access to life saving and life improving medications is a human right, best public health practice, and a public policy goal, something all stakeholders, public and private, held “on high” and were working toward. Everywhere I turned, “we must ensure access to life saving and quality of life improving medications”. I mean everywhere. This mantra was hammered home to me because antiretrovirals are medications that both save lives and improve the quality of life for people living with HIV and, thanks to the advent of pre-exposure prophylaxis (PrEP), people at risk for acquiring HIV. It is often the firm position of HIV advocates that restricting access to these medications is threat to life and quality of life and any such restrictions are an assault upon our lives. We fight day in and day out for programs and policies that safeguard access to care (medication and services). Every advancement is a fight and we have to muster up the same, very old arguments about the value of a patient’s life always being greater than the dollar sign attached to a medication.
That core piece is access to medication.
As the previous presidential administration issued rules that restricted international funding for those entities providing abortion services or referrals, I got antsy. Increasingly nervous and frustrated. In 2019, quite predictably, advocates confirmed those rules found impact primarily by reducing international aid to HIV services. Those rules also included one that required international partners to pledge to “denounce” sex work, a rule the Supreme Court upheld. Similarly, a whole slate of domestic policy moves sought to limit access to non-discrimination protections provided to people who sought or had an abortion and those who provided or referred a patient to abortion services. Those same rules sought to exempt transgender people and our care from non-discrimination protections. Of an important note: most abortions in the United States are medication abortions, not surgical.
If you’re new to these issues, let me help some. One of the first and most prominent methods of gender affirming medical care is by accessing medications falling under an umbrella of “hormone replacement therapy”, almost all of those medications are approved by the Food and Drug Administration and none of them have a specific indication to include gender affirmation (even cisgender folks – here’s looking at every old, cis guy who uses testosterone to feel young again). However, because medical experts generally agree these medications meet the needs of patients experiencing a wide variety of conditions, these medications are typically able to be written “off-label” or outside of their FDA approved indication. After years of advocacy and some last-minute push from the Obama administration regarding the Affordable Care Act’s Section 1557 (the non-discrimination provision of the law) , most private payers began covering some very basic transition-related hormone therapies (they were covering cisgender men seeking testosterone and other medications related to sexual performance for decades prior). The same rule prohibited covered entities from discriminating against people who had abortions, wanted abortions, or performed abortions. But Reed O’Connor, a long-time villain in the fight to defend the ACA, said “no” on the last day of 2016 and the guys who left the White House in 2021 agreed with him.
So here we are with this groundwork, this public health understanding that when people need care, they need as comprehensive care as they can get – as close to “one-stop-shop” as possible. And that’s true especially for people and communities experiencing the greatest disparities in health outcomes. Well-known among HIV advocates are the disproportionate number of women of color and transgender people living with and being diagnosed with HIV. The one thing all of these people, these patients need is medication access.
I need to not mince words, access to abortion is absolutely an issue of life improving care for someone who isn’t ready or doesn’t want a child. Adoption is not an option for a person who does not wish to complete a pregnancy and forcing them to do so by criminalization or by way of policy is state-sponsored seizure of that person’s body. Forcing a trans person (youth or adult) by criminalization or by way of policy is state-sanctioned violence. Denying people access to the medications that help them maintain their lives and the lives they wish to live is, at its core, an egregious attack on medication access.
Indeed, the next process-driven attack on the ACA is being pursued by plaintiffs that claim “moral injury”, if they should have to cover PrEP or contraception – issues of medication access. Kelly v. Beccera is, once again, in front of our previously mentioned judge, Reed O’Connor. We already know how this is gonna go. Meanwhile, we’re waiting on SCOTUS to decide the fate of Roe v. Wade (and possibly Casey), states are in the middle of a fight to beat everyone else to the punch. From proposing legislation that would criminalize access to abortion pills, to passing laws that criminalize providing gender affirming care to people under the age of 18, to passing laws that protect a person’s right to abortion and several states proposing bills that would protect families seeking safe-haven in order to provide children with gender affirming care, the landscape of US health care is becoming very fractured and much like some horror story of a wild west shoot out. Take a moment to ask if a state passes a law designed similar to Texas’ S.B. 8, wherein a private actor may sue a person for seeking or performing an abortion, that person runs to a state protecting those rights – or a parent ensuring their child is getting gender affirming care – exactly where does that fall? That’s not conjecture – how many families do you personally know who can afford the legal fight over jurisdiction?
Sure, we know where the executive branch of the federal government is gonna fall on this, at least until early 2025. But what then? Hope for the best?
HIV service providers need to get good with identifying quality lawyers and establishing relationships with their local or state queer and abortion advocacy organizations. And HIV advocacy needs to leverage our power to assist and uplift, not usurp, this issue. At the core of our work, we’ve maintained access to life saving and life improving medication is a must. We must not fail that mission now.
A Call to Action: HIV Advocacy Must Affirm the Human Rights of Transgender People
The Community Access National Network (CANN) recently announced a campaign designed to promote transgender leadership in HIV advocacy. The campaign’s foundation is centered on a Values Statement on Affirming the Human Rights of Transgender People. Why?
Last year, after Terrence Higgins Trust of the United Kingdom united HIV advocacy and service organizations in providing a statement of support of the human rights of transgender people, William Arnold asked me, “Has anything like this been done here?” My answer was frank, “not precisely.” I explained what typically happens is HIV advocacy and service organizations issue statements of support independently of one another but often tend to lack defined actions, policy goals, or a commitment to more than words. Perhaps there’s programming our partners have but they’re often managed by cisgender peers or don’t speak to the actual needs of transgender people. Similarly, if they are grant-making entities, funding awards are often given to large umbrella organizations rather than smaller by/for organizations. This comes at the detriment of a diversified brain trust, unique employment offerings tailored to trans communities, and consolidates services and power outside of the reach of transgender communities…or at least, outside of our trust. Our power is often undercut because it is just easier to give funding to larger umbrella organizations.
“We should do something about that,” Bill told me. He always had the vision to understand that we cannot solve the health disparities in HIV without addressing the holistic needs of communities living with these disparities.
As 2022 politics offer this country a horrific but robust “trans panic 2.0” by way of more than 280 proposed pieces of state legislation and policy attacks, which often garner much less attention and have fewer remedies than campaigning against legislation or law suits, now is the time for HIV advocacy organizations, service providers, and funders to commit themselves to defending and advancing the human rights of transgender people.
A cornerstone of Bill’s personal mission was ensuring access to life saving medications for everyone who needed them. Such a mission is centered in a sense of justice and, frankly, love. It’s a mission, ultimately that all HIV advocacy, service organizations, and funders share. To that end, I need to be clear and to state that under no uncertain circumstances, gender affirming care is lifesaving care. Indeed, gender affirming care improves the HIV-related health outcomes of transgender people. In order to End the HIV Epidemic, in order to fulfill the promises many of us have made to our predecessors, our families, our loved ones lost in the fight against HIV… in order to fulfill our sacred promises, we must affirm and defend the human rights of transgender people in all aspects of life. We must do so in concert, in a fashion coordinated to support existing services and advocacy dedicated to transgender people and communities. We must do so with a unified and collaborative voice that uplifts, empowers, and invests in transgender people, communities, leadership, and rights.
On the issue of the human rights of transgender people, we can no longer act independently of one another or divorced from the transgender advocates already dedicated to this space. In order to act with the integrity this moment and movement needs, our partners must also commit to living the principles reflective of these human rights. Our houses must be in order as it were. In order to End the HIV Epidemic.
We are calling on all our partners to join us in support of affirming the human rights of transgender and gender diverse communities, to commit to the development of transgender leadership within our organizations and empower the self-determination necessary to End the HIV Epidemic.
Nonprofit organizations, community partners, and industry partners interested in lending their support to CANN’s campaign to promote transgender leadership in HIV advocacy, go to https://www.surveymonkey.com/r/XT8LCN7.