Anti-LGBTQ Laws are Propagating as Violence, Undermining Transgender Health

By: Ranier Simons, ADAP Blog Guest Contributor

As 2024 ends there is the painful reality that Donald J. Trump is returning to The White House, and with him promises of rolling back protections for LGBTQ people…and in some cases, even denying them care. The anxiety and fear are very authentic, and there is real world evidence of how discriminatory policies adversely impact already marginalized communities. One glowing example is how HIV prevention is undermined by LGBTQ-related attacks (legislation) and violence!

Photo Source: Le Monde

The concept of infrastructure does not always connote a physical embodiment of something. Infrastructure also encompasses societal structures, including culturally pervasive attitudes and legal policies. The problematic domestic and global infrastructure adversely affecting the lives of LGBTQ people is harmful to their well-being on many levels, including HIV prevention. The societal infrastructure set against LGBTQ contains aspects of physical violence as well as anti-LGBTQ legislation. The rate of violence perpetrated against LGBTQ in general, in addition to specific Transgender violence, is higher than the heterosexual general population.[1] Transgender violence and anti-LGTBQ laws and policies impede HIV prevention efforts, resulting in avoidable individual and public health adverse outcomes.

Over 500 anti-LGBTQ bills were introduced in the United States in 2023, almost tripling in number from 2022 to 2023.[2] This legislation is multi-focused, including attacks on health care, civil rights, public accommodations, and even education.[2] A recent study from the UNC Gillings School of Global Public Health found that there is a clear interconnection between discriminatory anti-LGBTQ legislation and HIV prevention.[3] Anti-LGBTQ legislation and policies adversely affect HIV prevention by increasing stigma and decreasing health care access.[3]

Photo Source: FiveThirtyEight

Many of the laws target transgender people and youth specifically, including efforts to deny gender-affirming care. This includes laws to prohibit the changing of gender or sex on identification or medical records. Some laws are purposed to ban the discussion of LGBTQ issues in schools. Regardless of the focus, the legislation contributes to LGBTQ stigma that even occurs in health settings.[4] This is due to a history of pathologizing LGBTQ identity, behavior, and desire in medicine.[4] Two-thirds of LGBTQ adults have experienced discrimination in the past year compared to four in ten non-LGBTQ adults.[4] The stigma fueled by anti-LGBTQ legislation is dehumanizing. It adversely affects the self-worth of individuals affected, which contributes to discouraging positive health-seeking behaviors and influences treatment when it is obtained.

Testing and PrEP use are significant tenets of HIV prevention. The UNC study showed that PrEP use was lower in states with more anti-LGBTQ legislation activity. Youth living in states with fewer anti-LGBTQ policies or counties with majorities of Democratic voters had higher levels of PrEP use. This positive increase in PrEP use was compounded for youth who lived in both a more progressive state and county.[4] Approximately 7.6% of U.S. adults identify as LGBTQ in 2024, and that number is increasing. Regular testing is a part of PrEP adherence. When stigma negatively affects access to testing, it simultaneously weakens the ability to maintain PrEP adherence even if PrEP is available.

Anti-LGBTQ laws are propagating concurrently as violence, specifically against transgender individuals, is an issue. One study out of San Diego, for example, showed that there were 229 documented cases of fatal violence against transgender women in the United States between 2013 and 2021.[5] The bulk of these cases, 78%, were Black victims, which included Afro-Latinas. Over half of these occurred in the South, followed in prevalence by the Midwest. This also reflects the number of recent anti-LGBTQ bills, with most being introduced in the South and the Midwest.[6] As of November 19, 2024, the Human Rights Campaign reports 372 transgender and gender-expansive victims of fatal violence from 2013 to the present.[7] These fatalities are only the reported ones. The actual numbers are estimated to be higher.

Prevention of violence against transgender people is a public health issue. Anti-LGBTQ policies and laws amplify the insecurity of daily existence that transgender individuals face. Adversity in dealing with daily survival is compounded by discrimination and lack of access to health care. Globally, on average, approximately 2/3 of transgender individuals are aware of their HIV status.[8] Also globally, the percentage of transgender individuals who avoid HIV testing due to discrimination and stigma is estimated to range from 47% to 73%. Additionally, those who have experienced discrimination in a healthcare setting are three times more likely to avoid seeking out healthcare than transgender people who have not experienced it.[8]

Photo Source: CDC

Social attitudes, the reality of violence, and anti-LGBT laws, including criminalization based on gender identity, contribute to the isolation of transgender people. Regardless of whether the isolation is externally or internally propagated, it adversely affects their mental health. Transgender individuals’ continuous exposure to harassment, bias, and discrimination contributes to poor mental health.[6] Poor mental health leads to things such as substance abuse and other detrimental patterns of behavior, which are barriers to effective HIV prevention, which includes medication adherence for transgender individuals living with HIV. 

Approximately one million people identify as transgender in the U.S., with 9.2% of those living with HIV. In addition to intravenous drug use, unsafe injection practices while injecting hormones can contribute to the increased likelihood of HIV transmission.[7] Sexual violence against transgender individuals also contributes to HIV transmission, especially since it is mainly unreported, and the victims do not seek out medical attention. Additionally, transgender people face housing and employment discrimination, which exacerbates challenges with maintaining proactive health maintenance, including HIV prevention.[7]

The adverse impact of HIV prevention challenges among people who identify as LGBTQ because of anti-LGBTQ laws and policies is significant. It is imperative to repeal toxic legislation and create beneficial policies that strengthen infrastructure to support HIV prevention and care. Legal protections and proactive policies will help fight against stigma and systemic structural barriers.

[1] Truman, J. L., Morgan, R. E., & U.S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics. (2022). Violent Victimization by sexual orientation and gender Identity, 2017–2020. In Statistical Brief. https://bjs.ojp.gov/content/pub/pdf/vvsogi1720.pdf

[2] Choi, A. (2024, January 22). Record number of anti-LGBTQ bills were introduced in 2023. Retrieved from https://www.cnn.com/politics/anti-lgbtq-plus-state-bill-rights-dg/index.html

[3] Kelly, N. K., Ranapurwala, S. I., Pence, B. W., Hightow-Weidman, L. B., Slaughter-Acey, J., French, A. L., Hosek, S., & Pettifor, A. E. (2024). The relationship between anti-LGBTQ legislation and HIV prevention among sexual and gender minoritized youth. AIDS (London, England), 38(10), 1543–1552. https://doi.org/10.1097/QAD.0000000000003926

[4] Dawson, L., Kates, J., Montero, A., and Kirzinger, A. (2024, September 30). LGBTQ Health Policy. Retrieved from https://www.kff.org/health-policy-101-lgbtq-health-policy/

[5] Halliwell, P., Blumenthal, J., Kennedy, R., Lahn, L., & Smith, L. R. (2024). Characterizing the prevalence and perpetrators of documented fatal violence against Black transgender women in the United States (2013–2021). Violence Against Women. https://doi.org/10.1177/10778012241289425 

[6] ACLU. (2024). Mapping Attacks on LGBTQ Rights in U.S. State Legislatures in 2024. Retrieved from https://www.aclu.org/legislative-attacks-on-lgbtq-rights-2024

[7] HRC. (2014, November 19). The Epidemic of Violence Against the Transgender & Gender-Expansive Community in the U.S. Retrieved from https://reports.hrc.org/an-epidemic-of-violence-2024#epidemic-numbers

[8] UNAIDS. (2021). HIV and Transgender and Other Gender-Diverse People: Human Rights Fact Sheet Series. Retrieved from https://www.unaids.org/sites/default/files/media_asset/04-hiv-human-rights-factsheet-transgender-gender-diverse_en.pdf

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. 

NHBS-Trans Sheds Light on HIV Prevalence Among Transwomen in the United States

By: Ranier Simons, ADAP Blog Guest Contributor

Transgender women have disproportionately higher rates of HIV. It Is estimated that 14% of transwomen in the United States are living with HIV. Numerous studies exist examining HIV in various populations and subgroups. However, data on the mechanisms of HIV in the transgender community is lacking. The Centers for Disease Control & Prevention (CDC) uses data to determine who is most at risk for HIV, and that data comes from healthcare providers. Unfortunately, for a long time, there was no mandate for providers to count transgender patients. Historically, transgender women were categorized as gay and bisexual men, although they have vastly different needs. The 2015 update to the National HIV/AIDS Strategy prioritized data collection for trans people, and its mandate went into effect in 2018. Recently, the CDC released data from a systematic biobehavioral study conducted to examine HIV risk factors among transwomen.[1,2,3]

Photo Source: CDC

The CDC developed a surveillance system named National HIV Behavioral Surveillance Among Transgender Women (NHBS-Trans).[1] The purpose was to gather data specific to transgender women regarding HIV prevention, risk factors, testing services, and other social determinants affecting HIV treatment and overall health. From 2019 to 2020, the study gathered data from 1,609 transgender women from seven U.S. urban areas: Atlanta, Los Angeles, New Orleans, New York City, Philadelphia, San Francisco, and Seattle.[1] Trained interviewers administered anonymous questionnaires utilizing computer tablets and offered free blood rapid HIV testing. The participants were selected through respondent-driven sampling. This means that after an initial seed group of participants was identified through a referral from a community-based organization, they were asked to go out into their communities and recruit others. The study revealed that many factors contribute to the high rate of HIV among transwomen, with discrimination being one of the leading causes.

Approximately 42% of the study participants tested positive for HIV. Among the black subjects, 62% were living with HIV, 35% of the Hispanic and Latino participants, and 17% of the white participants.[2,4] The study data showed that the disproportionately high rate of HIV was due to factors such as lack of access to PrEP, discrimination in employment and healthcare access, homelessness, and even violence and harassment.[2,4]

Among all the participants, 17% had no health insurance, 7% had not visited a health provider in the past year leading up to the study, and 63% had household incomes at or below the poverty level. Additionally, 42% had experienced homelessness in the previous 12 months leading up to the study, 17% had been incarcerated, and 34% had received money or drugs in exchange for sex.[4] Employment discrimination was intertwined with a lack of healthcare access. People usually get healthcare coverage through their employment. Over 32% of the participants reported having great difficulty finding employment, with 10% stating they had been fired due to being transgender.[3,4] Without employment, many were without healthcare insurance. Lack of health insurance results in no access or poor access to HIV care and treatment, lack of access to PrEP, and lack of access to gender-affirming care.

Photo Source: iStock | Rights Purchased

Participants who were on Medicaid in states where Medicaid did not cover gender-affirming care were twice as likely to have difficulty finding employment.[3] Lack of employment leads to homelessness and housing instability. Moreover, difficulty finding employment leads some transgender women into sex work for survival, which is a high-risk factor for HIV transmission as well as an avenue into possible incarceration.[4] Lack of gender-affirming care also adversely affects HIV treatment and prevention. Studies have shown that transgender women receiving gender-affirming care are less likely to contract and transmit HIV.[5] This is due to the health education they receive with the care. Additionally, meeting the basic needs of identity allows transgender women to focus on other aspects of their health. Without gender-affirming healthcare, some transgender women take non-prescription hormones, which are potentially damaging to their health. Improper dosages, poor quality of medication, and lack of medical guidance can result in additional poor health outcomes. Moreover, some participants reported not seeking out PrEP or being inconsistent with their medicines out of fear of drug interactions with their hormone therapy. The study highlights the need to couple gender-affirming care with HIV prevention and treatment.

The study also revealed data regarding abuse and harassment. Approximately 54% of the transgender women in the study reported verbal abuse or harassment because of their identity, with 27% reporting physical abuse.[4] Of those reporting physical abuse, 15% reported the abuse from a sexual or intimate partner. Lack of social support and healthy surroundings adds to the mental stress and instability of the lives of these transgender women, which can also lead to illicit drug use as a way to cope. Eighteen percent of the participants had suicidal thoughts. Seven percent had previously made plans, and 4% had attempted suicide.

The study is not genuinely national since the sampling is from specific urban environments. However, it does highlight the dire need for more research to gather robust data regarding transgender women and HIV. Potentially, data can influence policymakers to create policies to facilitate beneficial access to HIV and gender-affirming care that improves their lives and respects their identities. It is essential to provide safe spaces where transgender women can receive culturally competent care coupled with access to medically sound interventions, prevention, and treatment specific to their needs. Policy intervention is also needed to remove transgender discrimination regarding employment and housing.

[1] Kanny D, Lee K, Olansky E, et al. Overview and Methodology of the National HIV Behavioral Surveillance Among Transgender Women — Seven Urban Areas, United States, 2019–2020. MMWR Suppl 2024;73(Suppl-1):1–8. DOI: http://dx.doi.org/10.15585/mmwr.su7301a1

[2] Adamczeski, R. (2024, January 28). Transgender women have a higher risk of HIV infections. A new CDC report reveals why. Retrieved from https://www.advocate.com/news/transgender-women-hiv-infections-discrimination

[3] Adamczeski, R. (2024, January 29). The real reason trans women have high HIV rates. Retrieved from https://www.hivplusmag.com/transgender/trans-women-high-hiv-rates

[4] Centers for Disease Control and Prevention. HIV Infection, Risk, Prevention, and Testing Behaviors Among Transgender Women—National HIV Behavioral Surveillance, 7 U.S. Cities, 2019–2020. HIV Surveillance Special Report 27. Retrieved from http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html. Published April 2021.

[5] Owen, G. (2023, April 28th). Surprising study indicates trans women in gender-affirming care contract HIV less often. Retrieved from  https://www.lgbtqnation.com/2023/04/surprising-study-indicates-trans-women-in-gender-affirming-care-contract-hiv-less-often/

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. 

Stigmas Impact on ART Medication Adherence among Young Transgender Women & HIV-Positive MSM

By: Ranier Simons, ADAP Blog Guest Contributor

One of the most essential tenets of antiretroviral therapy (ART) is adherence. Consistent administration of HIV medication is the route to well-controlled HIV disease and ultimately undetectable status. Lack of adherence prevents viral suppression, resulting in advanced disease states, can result in medication resistance, and contributes to transmission. A myriad of challenges causes key populations of people living with HIV/AIDS (PLWHA) to experience ineffective adherence. A recent report on a study conducted in several countries of Africa reveals a lack of adherence among key populations of young people due to intersectional stigma. 

Photo Source: UNESCO

The Health Economics and AIDS Research Division (HEARD) of the University of KwaZulu, Kamuzu University of Health Sciences in Malawi, the University of Zambia, and the University of Zimbabwe collaborated for a three-year research project to examine how various stigmas influence anti-retroviral therapy (ART) medication adherence in young transgender women and HIV-positive men who sex with men (MSM).[1] The study of 156 participants consisted of interviews and surveys. The purpose is to explore the experiences of intersectional stigma, develop a conceptual change model, design an intervention to improve ART adherence based on the model, and document results to create guidelines for improvement of the status quo in the South African Development Community Region.[1] Overall, fear of the study population’s HIV status being revealed and depression from dealing with the social stigma attached to their sexual and gender minority status results in poor medication adherence. 

Fear of discovery amidst the study population was nuanced. Some participants skipped doses of their medication because their living arrangements did not allow them privacy to take care of their health. They feared their medication being discovered in their belongings or being seen taking medication. Some of the participants lived in communities with social stigma of PLWHA. These young people feared their family or friends discovering their HIV status. Others feared discovery by their relationship partners. They feared their partners would desert them upon discovery of their status. In this case, skipping medication means poor health outcomes for themselves and possible transmission to their partners. Some participants even reported HIV stigma within the LGBTQ community, which they felt would make it harder for them to find partners.[1]

Others dealt with a different fear. Some of the participants lived in communities where there was increasing normalization of more acceptance of PLWHA. However, in these communities, there is still a negative stigma towards homosexuality, and in some cases, it is criminal. For the youth who were already known to be homosexual, they feared discovery of their HIV status because these communities saw it as a punishment for their sexuality. Thus, they skipped medication often or did not seek out regular treatment in medical facilities for fear of being treated poorly for being HIV positive and homosexual. 

For both the transgender women participants and the MSM, social stigma due to their sexual and gender identity caused mental health issues that contributed to a lack of treatment adherence.[1] They reported being looked upon with disdain and sometimes verbal or physical violence; navigating society as proverbial ‘black sheep’ caused depression and even suicidal ideation that made it challenging to be consistent with the self-care of ART adherence.[1,2] This was especially true for those who reported alcohol and substance abuse as a way of coping. It’s a well-documented fact that substance abuse results in poor medication adherence. 

Photo Source: The Lancet

The research project is ongoing and in the stages of synthesizing intervention concepts. The discussion of the data has spawned several priorities. One priority is finding safe avenues of adequate care regarding HIV treatment. There need to be safe spaces to receive care and medication. Additionally, mental health resources for these young people are required. It is imperative to create safe spaces to talk about what is going on in their lives and how to cope. They need mental health professionals as well as safe peer group spaces to interact and support each other. Researchers also emphasized the importance of including the experiences and perceptions of front-line healthcare providers. The study cannot change external factors such as cultural prejudices and unfair criminalization. However, creating safe healthcare pipelines and infrastructure for psycho-social support will hopefully improve ART adherence and quality of life for the young sexual and gender minorities of Zimbabwe, Zambia, and Malawi.

[1] SADC. (2023, April). Regional Symposium Report. Retrieved from https://www.heard.org.za/wp-content/uploads/2023/06/SADC-Symposium-Report_final.pdf

[2] Govender, K., Nyamaruze, P. (2023, September 25). Young people with sexual or gender diversity are at higher risk of stopping their HIV treatment, research finds. Retrieved from https://medicalxpress.com/news/2023-09-young-people-sexual-gender-diversity.html

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.   

An Expression of Support for Basic Human Decency

By: Brandon M. Macsata, CEO, ADAP Advocacy Association & Jen Laws, President & CEO, Community Access National Network

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 was not 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.

Photo Source: ADAP Advocacy Association

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.

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.

HIV Advocacy Must Apply Denver Principles for Trans Communities

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

In July of this year, Terrance Higgins Trust issued a statement of unequivocal solidarity in support of rights for transgender people, representing the position of numerous HIV advocacy and service organizations located in the United Kingdom. The statement focuses on the health disparities transgender people face and the necessity to address these in order to meet public health goals of ending the HIV epidemic in the UK by 2030.

I often like to say, “integrity is the integration of stated values in action.” Over the last several years large, queer umbrella organizations have taken up the banner of both transgender advocacy and, more recently, HIV advocacy as pillars of their activities, rather than back burner issues. This mirrors certain advocacy from legacy HIV organizations and service entities taking up activities of transgender advocacy and community specific programming. Much of this shift can be attributed to a greater national spotlight on transgender people (often centered on bigoted policy moves from the previous administration) or because of any number of reports with newly released data finally being gathered on our population pointing toward extraordinary disparities requiring address. Numerous domestic HIV organizations have issued similar statements, mostly independently of one another, as that of the Terrance Higgins Trust.

As it turns out, all of this attention is quite profitable for advocacy and service organizations, regardless of their mission orientation (HIV or LGBTQ issues). Both public and private funders have issued notices of funding opportunities and grants focused on assessing and addressing the health needs of transgender people and extending cultural competency trainings for service providers. While these funds and their intended activities are absolutely necessary, they are a sore replacement for consistent, operations funding to by-for transgender and non-binary organizations – of which many would be greatly served by these funds and, likely, more affectual than offering funding to organizations with limited experience or token personnel.

Artwork provided by The Feminist Farmwife

That’s the problem, isn’t it? For a community of advocates and providers who have trumpeted the core values of the Denver Principles, HIV organizations have largely failed in integrating these principles in terms of advocacy and programming for transgender people. More importantly, these same organizations have few if any transgender or non-binary people in positions of program leadership or administration or on the boards of these organizations. Indeed, if we are to realize “nothing for us, without us” as critically necessary in order to adequately address the needs of a very diverse population of people living with HIV and AIDS, organizations seeking to represent our interests and meet our needs must include us in every stage of decision making – not just community advisory boards. 

Recently, Black AIDS Institute has provided an excellent example in ensuring leadership reflects the needs of combating the epidemic in appointing Ms. Toni Newman as interim chief executive officer. And funders should absolutely prioritize those organizations reflecting this value up and down their “food chain” including integration of these values in terms of compensation, plans of succession, hiring practices (ie. prioritizing lived experience over that of college experience), and human resource policies (including benefit designs – ie. if an organization does not ensure vocal training or comprehensive medical and pharmacy formularies in their benefit design, they are not “culturally competent” in their compensation offerings). In addition, funders should consider 5- and 10-year commitments of operations funding to by-for transgender and non-binary organizations equal to or exceeding that of shorter-term funding being offered to broader LGBTQ and HIV organizations.

Similarly, private funders – specifically foundations with massive granting power – should not prioritize funding larger, well-funded LGBTQ umbrella organizations based on their calls for HIV advocacy unless and until those organizations include partnership and shared funding to existing HIV organizations for these activities. 

Ultimately, lack of funders integrating the values behind the Denver Principles in their funding choices risks pushing out interests in advocacy wholesale. If those impassioned enough to take on these fights cannot pay their bills, feel respected for their expertise, see a path to promotion, and can realize their priorities in success through funder support, they will simply leave the field. Our funders should also readily recognize our interests intersect – our success is theirs – and, while some may argue the advocacy pipeline is broken, it can be fixed.

Lastly, coalition statements are more than welcomed. They signal an intention and frankly, we need more of them – across broader interest organizations. 

Integrity, like love, requires more than words. Integrity, like love, cannot exist in the absence of action. We need to see some integrity from HIV and umbrella queer organizations and funders.

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. 

Reflections from an HIV Advocate's Journey: Arianna Lint

By: Arianna Lint, President and Founder, Arianna's Center/ Translatina Florida

Today, I am a proud Trans Latina, openly living with HIV, but my journey to get here wasn’t easy. Originally from Peru, I knew that to live life as my authentic self, I would need to leave, and that’s why I came to the United States. My American life began in New York, and as a someone navigating my transition and unable to speak English my options were limited and so like many trans women, I survived as sex worker. For several years I struggled, enduring stigma, discrimination, and violence, while I saved my money as best I could. What kept me focused was that I had a dream.

That dream was I would move to Florida and start a new life. My HIV diagnosis came at a very difficult time as I was finally realizing my move to Florida. It was during the process of attempting to purchase life insurance that I found out that I was HIV-positive. I was devastated, lost, and felt very alone. My saving grace was the love and support of my family. I’ve always been incredibly close to my family, in particular my mother. Their support and acceptance have played a huge role in my life and after my HIV diagnosis I was at a loss for how to disclose my status to them. I experienced feelings of shame and was terrified of disappointing them, and so for almost 4 years I hid my status from them. 

When I found the strength to confide in my mother, she shared with me that she knew I was HIV positive. Apparently, she had found my HIV medications some years beforehand but had never said anything, instead waiting until I was ready to share my status with her. This was heartbreaking, knowing that she had been living with this knowledge for so long and knowing the worry she had been carrying with her. I’m one of the lucky ones though because she is my biggest supporter in everything I do. Not everyone in our community is so fortunate though and much stigma and rejection continue to exist particularly from transgender women of color living with HIV. 

Above all else it was the strength afforded to me by my mother that inspired me to become the unrelenting HIV advocate and transgender leader I am today. Her love and support along with that of my chosen family has helped me realize my dreams. I have a strong support system of traditional family and those friends and allies that have become “family” along the way. From opening my own agency, Arianna’s Center, which has been uplifting the lives of trans women of color for the last six years,  focused on providing services and advocacy from the trans community in Florida and Puerto Rico,  to becoming an international ambassador for the U=U campaign, to speaking and leading sessions at conferences throughout the country and Puerto Rico, and also being a recognized media spokesperson nationwide for trans issues, that love of my family, biological and chosen, has been my fuel for success.

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.  

New CDC Surveillance Reveals Risks Among Transgender Women, Including HIV

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

On April 15, 2021, the U.S. Centers for Disease Control released a new special report on HIV infection, risk, and tertiary issues impacting transgender women. The report included a literature review and community survey among 1,608 self-identified transgender women in 7 US cities (Atlanta, Los Angeles, New Orleans, New York City, Philadelphia, San Francisco, and Seattle), which was conducted between late 2019 and early 2020.

The findings of the report could be considered startling to those unfamiliar with HIV data among transgender populations. However, advocates for transgender equality have been shouting about this issue for years. Despite the CDC issuing guidelines for collecting data on transgender people in 2015, many state and local health departments were slow to implement this guidance; from debate on language to a grueling process in the massive undertaking to update official HIV screening forms. Further down the “food chain”, contract providers did not necessarily have the funding to reprogram electronic health records to reflect collecting this information or did not prioritize doing so. As a technical issue, this is the least of concerns in reaching out to transgender people. Cultural competency is lacking, programs directed toward transgender people may be managed by cis gender people, creating a disconnect between the experience of a target audience and program design. The Denver Principles demand “nothing about us, without us” and, even in HIV, this part gets forgotten about when establishing or operating transgender programs.

Photo Source: CDC

Back to the CDC’s findings.

The special report found an HIV prevalence of 42% among participants with a valid HIV screening within the last 12 months (note: 3% of participants did not have a valid HIV screening within the last 12 months, all findings are self-reported). Of those tested, along race and ethnic identity, the highest rates of HIV prevalence were among Black (62%), Hispanic/Latina (35%), and American Indian/Alaska Native (65%) transgender women. The cities with the highest prevalence were Atlanta (58%), New York (52%), and Philadelphia (51%). Of prevention activities, participants were generally well-educated regarding pre-exposure prophylaxis (PrEP) at better than 90% overall, however, uptake was lagging at around 30%. Participants cited medical mistrust due to incidents of transphobia in medical settings, lack of information regarding interactions with gender-affirming hormone therapies, and lack of trans oriented PrEP marketing materials. 63% of self-reported HIV-positive participants reported receiving HIV related care within 1 month of diagnosis and 89% having received care within the year prior to interview. 

The most stunning findings of the study include 63% of participants reporting living at or below the federal poverty level and 17% being uninsured. As a result, unsurprisingly, 42% of participants had experienced homelessness in the last 12 months. The statistic that should receive the greatest attention but - also unsurprising as 2020 was the worst year on record for anti-transgender violence in the US – 54% of participants reported having experienced verbal abuse or harassment as a result of their gender identity. Additionally, 15% of participants reported having experienced verbal threats or physical attack resulting in rape.* 

*Editor's Note: the report refers to “forced sex” – this author will not coddle this experience. “Sex” without consent, either by force, threat, or coercion, is rape.

Advocates, myself included, argue the Trump administration’s anti-transgender agenda released a social contagion of permission to enact violence against transgender people, Black transgender women in particular. Despite the precedent set by the Supreme Court’s Bostock decision in 2020, several states have decided to make 2021 a record-breaking year in introducing anti-transgender legislation. Again, experienced advocates expect this pattern to result in more violence against us. 

This is of particular note, given the CDC’s report cited medical mistrust due to experiences of transphobia in medical settings. 

Small, yet meaningful steps that can be taken in the immediate: both private and public funders must change the metrics in which they consider funding transgender programming and acceptable “competency”. Funded entities must conduct transgender cultural competency at onboarding of all staff and at least once annually and demand their staff satisfy a post-training assessment as part of their employment. Funders must require these metrics in order for an entity to receive funding. Entities should not be “developing” new transgender programs but courting existing trans led by-for organizations to manage trans oriented HIV programing. 

The Denver Principles were meant for all of us, every one of us, every piece of us. And beyond our status we have failed to implement these cornerstone values into our HIV prevention efforts and care programs. 

For providers seeking resources on trans oriented HIV prevention materials, the CDC provides model materials at no cost to providers via the CDC’s Let’s Stop HIV Together campaign. You can order these and other materials here.

Additionally, "TRANSGENDER HEALTH: Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program" are educational resources published by the ADAP Advocacy Association. They include an infographic, and a policy white paper.

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. 

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

By: Fernando Cerezo III, Queer Latinx Writer

The first time I saw Bobbie was on the dance floor at a New York nightclub, a nightlife watering hole for creatives and it people. I watched the sea of bodies darting their eyes, waiting for their liquid courage to kick in. Among them I saw a figure outfitted in black and pink latex, manicured nails with fingerless matching gloves and a long black ponytail held up with a headband of the same material. Her face was made up, highlighting her round Twiggy-esque eyes with hues of pink around her cheeks and temples. She was holding no drink, and her friends looked like they were trying to match her energy but didn’t yet have it in them. So, I watched her with curious enthusiasm as she grew more and more activated by the music, witnessing what I could only describe as her spirit. 

One weeknight over dinner with a handful of friends at Blue Ribbon Fried Chicken, East Village I heard “Fernando!”, called from behind me. Wearing an oversized leather jacket Bobbie embraces me warmly. She asks how I’m doing, her big eyes meeting mine from across the table as if we were the only people there. I introduce her to my bewildered friends, to whom she gives a friendly hello and a courtesy before bringing her eyes back to me. Recognizing her affinity for connection I insist we meet sometime one on one. That summer, in the Lower East Side, the two of us were dressed in all black despite the sweltering heat and walked over to the East River. Bobbie’s black wavy Joan Jett mullet encircles her fresh face. She reminds me of Brittany Murphy; skittish and eager but beaming with life. I look for a piece of myself in her to make sense of our unspoken kinship. We talked nightlife, our love of dancing, swapped dating misadventures, and realized we were born the same year. After sharing a few laughs and exchanging notes on managing adulthood, Bobbie starts to open up to me about her past. In late August, we got a chance to speak on the phone and with her permission I share it with you.

They say we’re all products of our environment, the triumphs and struggles of the children we were dictating the adults we soon become. In 2006, during a Bush era America, we find Bobbie as a curious 12-year-old in El Paso, Texas. She joined the all-girl cheerleading team and wore skirts to school against everyone’s wishes, dancing over the boundaries of the status quo. Born into a Mexican American community she was met with disapproving glares from adults, peers whispering about her in the halls, and evasion from strangers altogether. “It was unsafe to be queer, let alone be open about it [but] I wasn’t shameful. I didn’t subscribe to other people’s projections. I was going to live my life, wear what I wanted to wear, feel how I wanted to feel. Nobody was going to stop me.” Bobbie found solace at local gay bars, if not sneaking in, then peeking through the windows to catch drag performances and studying those she considered to be her people laughing, dancing and drinking, envisioning herself alongside them someday.

At 14, Bobbie earned her way into a summer dance program at Pacific Northwest Ballet School in Seattle, Washington. After days of vigorous training, Bobbie would sneak out to gay bars at night, where unlike El Paso she had an easier time getting in, despite being so young. “I didn’t know that I was being fetishized as this effeminate being and how that attracted certain characters into my orbit. I didn’t understand what a ‘tweaker’ looked like and I didn’t know what a ‘chicken hawk’ was.” It was 2009 and gay marriage hadn’t yet been legalized in most states, so homophobia permeated popular culture. These chicken hawks were men shrouded in secrecy who preyed on the young and impressionable. These were clergymen, CEOs and public defenders who had everything to lose, so in exchange for Bobbie’s discretion they offered her an affection she hadn’t felt before. One chicken hawk in his 50s, posing as a 9/11 firefighter, took Bobbie under his wing that summer, driving her around, filling her with alcohol and escorting her to “dad parties” where other men of the same breed would parade themselves with underage dates. But on their last meeting, Bobbie was lured to a bathhouse where the “firefighter” introduced her to meth. The next thing she remembered was waking up to a dozen of these tweakers abusing her 14-year-old body.

The following summer, Bobbie was back in Seattle but noticed a steep decline in her stamina during ballet class. She found herself in a doctor’s office, waiting pensively for the result of an HIV test. She can hear her mother’s warning echoing in her ears, that her behavior would only attract HIV and despair. The doctor came back with her result: positive. As the world drew silent Bobbie’s body had cemented. She looked blankly at the doctor, thanked them and solemnly walked back to class. Her fellow ballerinas detected something wrong, so Bobbie confided in them, “I have something called HIV.” After sympathizing with her, their word spread to their parents, who informed school administration and the state of Washington. It was rare for a child under 18 to be diagnosed with HIV and Bobbie didn’t get a chance to process what it all meant, the ignorance, fear and stigma. She made meaning out of the reactions from adults around her, showing concern for Bobbie with looks of terror and discomfort smeared on their faces. Amidst the dizzying chaos, Bobbie’s ballet director, Peter Boal, shared his experience of living in New York during the AIDS pandemic. “He could see me before I could see myself.” He assured her there was no better place to find access to proper care, maybe finding herself in the process. 

After getting pulled out of her program early, Bobbie was back in El Paso, sitting in waiting rooms after waiting rooms of medical professionals. Bobbie had contracted anal cancer from undiagnosed HPV and knew her body’s ability to dance was now in jeopardy. But in 2009, insurance companies and pediatricians could legally discriminate against children living with HIV/AIDS.  She had faced rejection from doctors of all kinds before landing in the office of one Dr. Rhonda Flemming. Dr. Flemming, an infectious disease doctor wasn’t trained in HIV care but after hearing Bobbie’s struggles she expressed compassion. So, Dr. Flemming trained herself in order to counsel and care for her. But HIV research was still severely lacking, which resulted in Bobbie’s new costly prescription of 12 intrusive, daily pills thought to suppress the effects of the virus. 

Bobbie returned to face her family and the changing dynamic of the house. Bobbie’s father, a local judge, took necessary measures to protect his child (and reputation) by enforcing the use of the HIPAA privacy act, restricting third parties from disclosing Bobbie’s medical records without consent. He was the most involved in seeking treatment, but he was emotionally blocked, dismissing her when she confided in him. Her mother acclimated no better. “I could be getting purses. But we have to spend money on your medication. So shut up, you don’t get to be upset,” Bobbie remembers hearing. She grew estranged from her three older siblings who only thought up ways to cure her queerness. Certain bathrooms became off limits. If Bobbie would join her family pool parties everyone would scurry out. She became a shut in to avoid facing her own flesh and blood recoiling from her. To this day, Bobbie struggles with her family’s unwillingness to talk about HIV. “I want them to say something so that I can move forward. We can grow together to get back to a time before AIDS was introduced to our lives because it does affect everyone around you.” The once curious, high spirited child had hardened and became a recluse.

The opening weekend of Twilight: New Moon, Bobbie snuck her mother’s car out for a drive. She passed the theater, flooded by her peers, drove past her high school and the gay bars she once frequented. Everything was different now. ‘We know what you have. You’re just going to be a tr*nny with AIDS,” students said to her. “Don’t talk to that person, they have the gift,” they whispered at the bars. There was nowhere to seek refuge, so to supplement her sorrow she started taking ecstasy every night. “I was driving, thinking ‘Am I going to face another year of fighting kids or am I just going to end it all now?’” So that night Bobbie made an attempt to do just that right off the nearest cliff. With the car severely damaged and her mental health slipping, her frustrated parents committed Bobbie into a mental institution without her knowing. Here she was not only encouraged but conditioned to make lying a habitual practice, to lie about her status to any and everyone she meets.

Bobbie survived the public shaming, spiraling drug use and her dance with death and was convinced she was meant for more. “No one would rise to save me until I finally decided--not to quote Donna Summer and Barbra Streisand but I’m going to--‘Enough is enough.’” She took to the then two year old website, YouTube seeking any sliver of queer history, immersed herself in gay texts like City of Night and Dancer in the Dark and, though information was sparse, she took to outlets such as “Susan’s Place” to better understand her trans femme identity. A summer film series spearheaded by queer TV channel Logo had broadcast such films as But I’m a Cheerleader, Mambo Italiano and a lifetime staple of Bobbie’s, Wigstock. The 1995 documentary highlights the irreverent talents of the New York drag festival featuring high spirited queer performers such as Joey Arias, Lipsynka and of course the Lady Bunny, and touched upon the AIDS pandemic. “That’s where I first saw these insanely vibrant personalities and their struggles as LGBTQ+ people,” she tells me passionately. While her environment was failing her, she found hope in Dr Flemming, Peter Boal and her newfound Wigstock idols. There was only one solution. Goodbye, El Paso. Hello, New York City.

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

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. 

Love in the Time of COVID-19

By: Riley Johnson, Executive Director, RAD Remedy

As many readers may know, COVID-19 is a novel coronavirus for which there is currently no vaccine available in the United States. But what folks may not know is that many state public health departments managing COVID-19 do not collect data on sexual orientation and gender identity, meaning there is minimal public health data available about the impact of COVID-19 on transgender people, including trans folks living with HIV. Like non-pandemic times though, trans organizations are able to provide an understanding of not only the ways in which trans folks are impacted but also how grassroots mutual aid efforts continue to sustain us.

Trans Lifeline recently reported that between March and July 2020, they experienced a 40% increase in calls, and that number continues to climb (Fowers, 2018). Outside of COVID-19, trans people already experienced mental health issues at nearly four times the rate of the general population (Wanta, 2019). In addition, trans people can face increased risk for COVID-19 due to several issues: trans communities’ higher rate of smoking - 50% higher than the general population (National LGBT Cancer Network, 2020) - access to care barriers leave us less likely to get medical care, and existing health disparities mean more of us live in a state of compromised health, which can leave us more vulnerable to COVID-19 infection. Trans people also at times use binders and/or corsets which, while helpful presenting aids, can restrict breathing. Trans folks have also faced unexpected consequences of hospitals and surgical centers trying to cope with COVID-19. Transition surgeries have been classified as non-emergency and have been cancelled after trans patients have already waited months or even years, causing even more stress and depression. Trans Lifeline counselors also report many callers have talked of being forced to quarantine with families or partners who were unsupportive or abusive. Prior to COVID-19, many trans people engaged in sex work and street economies due to stigma and underemployment, and with the onset of the pandemic, many are continuing to do so to meet survival needs despite the increased risk of COVID-19 transmission due to lack of social distancing. And not insignificantly, many trans people are also reporting an increase in misgendering due to the use of masks for COVID-19, which, while helpful for prevention, may limit gendered visual cues such as facial hair and make-up.

At the same time, trans folks also have been targeted politically like never before, including a reinstatement of the trans military ban, an attempt to remove nondiscrimination protections in Section 1557 of the Affordable Care Act which would allow medical personnel to refuse to care for trans patients, proposed regulations that would all but ban LGBTQ asylum seekers, and proposed modifications to the Housing and Urban Development’s Equal Access Rule that would require trans folks who are houseless to stay in shelters associated with their assigned sex at birth. To be honest, dear reader, all of this oppression on top of the pandemic has been a bit much even for me.

So I began to ask myself - what does love and resilience look like in a time of COVID-19?

From a self-care and community care perspective, many trans people are looking after each other by reminding each other to unplug from social media and news cycles, to drink water and eat, and sharing quality goat and puppy content and curbside drop-offs of food. These small graces remind us that while the pandemic is ongoing and the world seems to be on fire, there is goodness, kindness, and adaptation too. Like we have for decades, trans people are still thriving and resilient in the face of uncertainty. On September 2, 2020, a federal district court issued an injunction which immediately blocks the Department of Health and Human Services’ attempt to allow discrimination against LGBTQ people on religious grounds. Grassroots mutual aid projects have also blossomed all over the U.S., including the TGNC Peoples COVID Crisis Fund of Louisiana, the Okra Project, and the Heavenly Angel Fund which assists Black trans women in getting tested for COVID-19 and provides care packages for those who have been tested. These are just a sample of the many efforts by and for trans people to uplift each other and help those who need it most. For a truly fantastic deep rabbit hole of mutual aid during COVID-19, check out COVID-19 Collective Care (http://bit.ly/covid19collectivecare). As Vivian Topping, a peer support facilitator at Trans Lifeline puts it, “Trans folks push really hard to support our people and be resilient. There’s still beauty. There’s still joy. There’s still a life to keep looking forward to .”

I’d like to leave you with a quote from Dr. Lourdes Ashley Hunter, Executive Director of Trans Women of Color Collective: “Every breath a trans person takes is an act of revolution. Everyday, you will wake up in a world designed to destroy you, invalidate you and tell you that you don’t belong and that you have to assimilate to be accepted. Everyday you will also wake up with great purpose to dismantle that shit. Ashé.” Breathe deeply, sanitize, and mask up, friends. Whether it’s a pandemic or policy designed to oppress us, we are resolute, resourceful, and stronger than we know. 

About RAD Remedy: RAD Remedy is a national grassroots organization dedicated to connecting trans, gender non-conforming, intersex, and queer (TGIQ) folks to accurate, safe, respectful, and comprehensive care. The Referral Aggregator Database (RAD) is a comprehensive and nationally-collaborative database that combines the referral lists of trusted community organizations and the detailed reviews of TGIQ clients. In addition to the organization's database activities, RAD Remedy provides community-informed policy and practice guidance and consulting to organizations, agencies, and individual providers looking to help TGIQ communities thrive. Donate to RAD Remedy.

References:

• Fowers, Alyssa, and William Wan (2020, August 18). "The volume has been turned up on everything': Pandemic places alarming pressure on transgender mental health. Washington Post. Retrieved online at https://www.washingtonpost.com/health/2020/08/18/coronavirus-transgender/?arc404=true.
• National LGBT Cancer Network (2020). Coronavirus Information. Retrieved online at https://cancer-network.org/coronavirus-2019-lgbtq-info/.
• Wanta, Jonathan, et. al. (2019). Mental Health Diagnoses Among Transgender Patients in the Clinical Setting: An All-Payer Electronic Health Record Study. Transgender Health. Retrieved online at https://www.liebertpub.com/doi/pdf/10.1089/trgh.2019.0029.

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. 

Reflections from an HIV Advocate's Journey: Jen Laws

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

There’s a long way to go from being 19 at Covenant House in north Philadelphia to being 34 and a public health policy consultant going back and forth between New Orleans and South Florida.

That 15 year path includes a great deal of good luck, a persistent outlook of good will, and a commitment to patient centered systemic change.

“You’ve got a brain like a computer and I intend to use it,” – Joey Wynn.

Having dabbled in fundraising and being deeply involved in a sex-positive community building culture, I was gifted with a chance to subcontract about a decade ago. Over a few months I expanded my knowledge of payment systems, in particular those changing due to the then recently passed Patient Protection and Affordable Care Act. It was a stroke of luck, opportunity meeting preparedness, that became my basis of knowledge and involvement on policy matters affecting people living with HIV and, in particular, transgender people. Soon after, joining South Florida AIDS Network and becoming half of a dynamic duo, Mr. Wynn saw an opportunity in me he regularly seeks out and fosters – the “next generation” of advocate.

You should know, he bit off more than he could chew.

“I’m gonna need you to watch your language,” – Brandon M. Macsata.

Six years later, deeply immersed in advocating for systemic changes in Florida and regularly offering commentary on legislative and regulatory policy changes aimed at demystifying the process for community members and reminding policy influencers of the need to focus on patient experiences, I had the distinct pleasure of being invited to join the board of directors for ADAP Advocacy Association. I’ve gained a reputation for being frank and sometimes profane in urging funders and influencers to remember the human nature of where HIV thrives and the programming needs to ensure patients thrive. “We’re never going to end any epidemic if we keep sanitizing our programming, our language, and ignoring or avoiding sex.” This is true even for ADAPs. Effective outreach and education of available assistance programs must also speak to the holistic experiences of patients.

“Promoting Access to Care Among Transgender Men and Women Living with HIV/AIDS” became the first major project I got to work on for the ADAP Advocacy Association. Teaming up with RAD Remedy, the white paper, infographic, and Twitter chat aimed to shift the conversation around treatment priorities for transgender people living with HIV. The project is something I’m still deeply proud of and have used in advocating for systemic change. Along with informing the Human rights Watch project “Living at Risk: Transgender Women, HIV, and Human Rights in South Florida”, Florida’s ADAP program recently added certain hormone replacement therapies to their formulary, recognizing that an effective program doesn’t seek to prioritize care for a patient, but empowers a patient to prioritize their own care – reducing barriers and increasing access.

“I’m glad you exist,” – Tiffany Stringer

Systems change begins with humanizing the very real experiences of frustration and sometimes impossible barriers people living with HIV face in seeking the care we need to survive. PLWH are more than our lab work but we rarely acknowledge that in policy success metrics. Essential to patient driven changes is an oft forgotten notion of empathy; not the concerted sigh and nod but the willingness to take a chance – a risk of investment.

I still find myself in awe anyone cares much what I think much less seeks out my opinion on matters. And yet, at state meetings and in planning, I get a great deal of “what do you think?” I like to think it’s because I’m stubborn and bold. There’s no harm in asking and if I get told “no”, I’m back in the same spot I was before asking. Pointing out needs to planning bodies in states with bans on syringe funding as we approach the age of injectables, the logistical needs for staffing, opportunities to extend education via lab hours (hopefully solving both needs in “one swoop”), and informing policy positions and goals by leveraging existing payment systems – all of this work is my passion because it serves as a reminder “the boat rises from the bottom”. Until those with the least means, the most affected, are safe and happy and healthy, all of us face the risk of losing. Our systems cannot be devoid of the humanity they seek to affect.

As much as my colleagues hound me about pursuing an advanced degree, I’ve refused. In a nation with a seemingly impossible student loan crisis on the horizon, why would I seek additional debt? Every ounce of payment systems education I have, from 340B to ADAPs to ACA implications and implementation, is self-taught; webinars, fact sheets, diligent reading and memorization of statute, ruling, and regulation, case studies, pilot projects, endless listening to committees. I’m a voracious reader with a talent to translate lawyered language and legalese into plain, digestible, applicable language – a necessary tool for community engagement and education. I stand on this position as a matter of principle as well as the well-studied fact most people learn the necessary skills for their employment on the job. In an environment of advocacy, where a need for diversity of thought matters, it is an issue of principle to demand that if an employer or potential contract wishes for me (or anyone) to have an advanced degree, they include that as part of the offered compensation. We’re never going to break the molds laid before us and reach our goals by training out different approaches to problem solving. Additionally, integration of lived experience and work experience matters in patient advocacy and in much of non-medical service provision. I will absolutely die on the hill that demands our funders and our advocacy and service organizations hire from affected community and stop demanding an unreasonable and unnecessary institutional educational background. Employment and housing are the core issues PLWH face as barriers to care. So take this recount of my history as a reminder, should you be a funder or in a position of hiring for an organization, that your greatest opportunity to take a risk and “win” is all around you.

As the US has plateaued in declining HIV transmission rates, as our own federal government has given a weak nod at “Ending the HIV Epidemic”, I’d like to take a moment for the agencies, funders, and influencers reading this:

Take risks. Read the room, if you will. Today’s environment, in the age of COVID, our work hasn’t stopped; to the contrary, it’s more important now than ever. But our organizations are also struggling now more than they have in years. As we face a mounting jobless and eviction crisis, our community and industry’s historical positions will be exacerbated.

So leap. Take a big jump and hire someone interesting you wouldn’t traditionally hire. Fund the idea or agency who submitted a rushed grant proposal. Find and fund contractors who have left aging agencies due to their refusal to adapt and modernize.

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I wanted to include some background as to how this profile came about and what I find important in my work.

Brandon tells me I’ve provided leadership on trans issues and advocated for meaningful, systemic changes in access to care, providing program and policy insights and analysis. He’s been asking me to write this profile 3 months. Never one to decline a writing opportunity, I had to ask myself why I avoided this one.

There’s likely a whole post-doctoral class to be written on trans guys who maintain cultural standards of survival cisgender women are acculturated to, from doubting the impact of one’s work to prefacing expertise with “I think”. And while there’s some of that mixed up in my hesitancy to talk about myself, there’s more and I think…know it’s important to share with the advocates reading this.

You matter more than you know. Your humility and reminder to remain empathetic and ethical is critical to ensuring PLWH drive our own determination. Your story matters and you need to make sure someone else isn’t telling it for you. You get to talk about the “by chance” moments without viewing your work as “less than”. We all got here by a series of chances – some great, some not so great – and a great deal of hard work. Touting your successes is something you’ve earned. And not sharing them isn’t an issue of humility. It’s doubting your value because in this world, if we struggle, we are taught to doubt the earned nature of our successes and fear the rug being pulled out from underneath us should be “brag too much.”

You don’t have to do that. You deserve and have earned your success. Brag a little.

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.