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. 

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. 

Biden & Science Win; Trump & Stigma Lose

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

On Saturday, November 7th at 11:25 AM Eastern Standard Time, people living with HIV/AIDS breathed a collective sigh of relief as the Associated Press called the 2020 Election, and recognized Joseph R. Biden, Jr. as the 46th President-Elect of the United States. In that very moment, science bested stigma. The electoral landslide turned the page on a dark chapter in this nation's history. As a 501(c)(3) nonprofit organization the ADAP Advocacy Association stayed neutral during the election for obvious reasons, but we welcomed the news with open arms!

Soon to be gone are Donald J. Trump's constant attacks on vulnerable populations disproportionately impacted by HIV/AIDS - such as the LGBTQ community, Muslims, racial & ethnic minorities, and immigrants. They will be replaced by compassion, empathy, and a keen understanding that sound public health policies are rooted in science.

Since 2016, HIV-related stigma was fueled by government sanctioned healthcare discrimination, eliminating most non-discrimination protections, and the discharge of military service members living with HIV/AIDS, only naming a few. Not to mention there were numerous misguided public health changes harmful to the HIV community driven by politics rather than sound policy, such as drug importation, pro-insurance co-pay accumulator regulations, raiding Ryan White funding for immigrant deportation, and proposed budget cuts. And don't forget how Trump’s anti-FDA Tweets undermine public health!

And that doesn't even consider the nearly 250,000 deaths due to COVID-19 resulting from Trump's lack of presidential leadership. But our nation's poor response to the coronavirus didn't come as any surprise considering that Trump tapped anti-LGBTQ, anti-science Vice-President Mike Pence. After all, Pence was the same guy who, as Indiana's Governor, oversaw one of the Hoosier State’s worse HIV outbreaks in the state's history.

But all of that darkness is about to change...

Starting on January 20, 2021, a brighter future awaits the LGBTQ community under the Biden-Harris Administration's commitment to advance equality. This change alone is significant, considering how new HIV-infections continue to disproportionately impact much of the LGBTQ community. Since the 1990s, President-Elect Biden has been a strong supporter of the Ryan White HIV/AIDS Program and its AIDS Drug Assistance Program, as well as a staunch ally of President George W. Bush's President’s Emergency Plan for AIDS Relief (PEPFAR). 

Jirair Ratevosian, M.P.H., who served as the Legislative Director for HIV/AIDS Caucus Co-Chair Rep. Barbara Lee, summarized Biden's support for HIV-related causes (The Body, 2020):

"The vice president’s prioritization of HIV/AIDS programs continued after his Senate career. The Obama-Biden administration delivered major advances in prevention and treatment efforts for people living with HIV. The Affordable Care Act (ACA) assisted Americans living with HIV by eliminating preexisting conditions and provided them with much-needed health insurance. In addition, the Obama-Biden administration eliminated the entry ban for tourists and immigrants living with HIV; ensured HIV testing would be covered under the ACA; implemented a comprehensive National HIV/AIDS Strategy; and directed federal agencies to examine the intersection of HIV with violence against women and gender-related health disparities. The programs under ACA had an important impact on addressing HIV prevention and treatment in communities of color."

Biden has made his intentions clear: "You deserve a partner in the White House to fight with conviction and win the battles ahead. Together we’ll pass the Equality Act, protect LGBTQ+ youth, expand access to health care, support LGBTQ+ workers, win full rights for transgender Americans, recommit to ending the HIV/AIDS epidemic by 2025, advance LGBTQ+ rights around the globe, not just at home" (Artavia, 2020). 

Women - especially women of color - will also have a brighter future under the Biden-Harris Administration. Vice-President-Elect Kamala Harris will be well-positioned to ensure more is done for African American women and Latina women, who as we all know are disproportionally impacted by HIV/AIDS in the United States.

Biden's record on public health isn't perfect, but it is far better than what we've witnessed the last four years. The ADAP Advocacy Association stands ready to aid the Biden-Harris Administration's efforts to return our nation's HIV epidemic response to science-based policies.

References:

• Artavia, David (2020, September 25). Joe Biden Recommits to Ending HIV, Passing Equality Act, LGBT+ Rights. Out. Retrieved online at https://www.out.com/politics/2020/9/25/joe-biden-recommits-ending-hiv-passing-equality-act-lgbt-rights. 
• Ratevosian, Jirair (2020, July 27). Joe Biden Is Our Strongest Option to End the HIV Epidemic. The Body. Retrieved online at https://www.thebody.com/article/joe-biden-strongest-option-to-end-hiv-epidemic.

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. 

Coronavirus-Related Blood Shortages Lead to Blood Donor Reforms, But Discrimination Remains

By: Sarah Hooper,  intern, ADAP Advocacy Association, and rising senior at East Carolina University

Since the outbreak of Coronavirus, decisions have been made within the government on many topics including financial relief for students, unemployment and others. One of these decisions involves blood donations. On April 2, the U.S. Food and Drug Administration ("FDA") revised their guidelines which previously banned gay men from donating blood for a year after sexual intercourse with another man.

In these new guidelines, the FDA has instead recommended a three month wait period for these men. This will remain in place throughout the course of COVID-19 or within 60 days of the emergency being lifted, according to The Hill.

The national blood supply has been critically low, according to The Red Cross. Pleas for donations from healthy donors have been made within the past years, but with the recent outbreak of COVID-19, the need is much greater now.

According to their website, the American Red Cross provides roughly 40% of the nation’s blood and blood components, all volunteer based. Group O- blood is the most highly sought-after blood group, because it is universally accepted by other blood types.

The recent change in FDA guidelines to allow men who have sex with men to donate blood after 3 months may seem as better than the previous guidelines, which it is. However, this recent guideline change has revealed many issues with the blood donation program in America.

It was only in December of 2015 that the FDA moved their lifetime ban on gay and bisexual men donating blood to a one year wait period.

“Blood centers nationwide screen potential donors by asking a set of questions written to determine risk factors that could indicate possible infection with a transmissible disease, such as HIV or hepatitis. According to the FDA, this pre-screening eliminates up to 90% of donors who may be carrying a blood-borne disease,” the Human Rights Campaign said.

This raises the question: if screening donors is already a universal concept in blood donation, why should gay men have to wait a period of time to donate blood? Even if a gay man had sexual encounter with an HIV positive person, if they went through the pre-screening process for blood donation and reported either they had sex with another man who they were unsure of their sexual history and/or they had sex with a man who they are sure is HIV positive, wouldn’t that eliminate the risk there?

The American Red Cross tests all donated blood after donations for infectious diseases, but it may not be 100% effective in donors who may have been infected with a blood-borne pathogen recently.

However, if a gay man has taken the necessary precautions to protect against transmission of blood-borne diseases such as HIV or hepatitis, I see no reason as to why they cannot safely donate blood- especially in a time of crisis and a national shortage.

In an article written for USA Today, David Oliver spoke on issues he’s faced as a gay man attempting to donate blood amid Coronavirus.

“The first and only time I donated blood; I hadn't had sexual contact with another man. Heck, I hadn’t yet come out. I was 21 years old and passed out shortly after doing it. Over the six years since then, it has been too easy for me to throw my hands up and say: "Well, I can't even donate anyway." But during this time of crisis, I would give anything to help,” Oliver said.

This narrative is all too common among LGBTQ+ men. The need for blood is greater than ever, and if screening processes are taken and donors are open about their past possible exposure to pathogens, I see no reason as to why this blood shortage could not be addressed by all Americans.

Photo Source: Change.org

“The American Red Cross believes blood donation eligibility should not be determined by methods that are based upon sexual orientation. We are committed to working toward achieving this goal,” The American Red Cross said.

The goal of blood donation eligibility not being based upon sexual orientation is an achievable one. Americans must look past their ignorance and outdated ideas of LGBTQ+ men and blood donation to help the greater good.

References:

• Blood Needs & Blood Supply. (n.d.). Retrieved from https://www.redcrossblood.org/donate-blood/how-to-donate/how-blood-donations-help/blood-needs-blood-supply.html
• Human Rights Campaign. (n.d.). Blood Donations and the LGBTQ Community. Retrieved from https://www.hrc.org/resources/blood-donations
• LGBTQ Donors. (n.d.). Retrieved from https://www.redcrossblood.org/donate-blood/how-to-donate/eligibility-requirements/lgbtq-donors.html
• Oliver, D. (2020, March 30). Red Cross is asking for blood donations amid coronavirus. Because I'm gay, I'm excluded. Retrieved from https://www.usatoday.com/story/opinion/voices/2020/03/20/coronavirus-let-lgbtq-men-donate-blood-amid-shortage-column/2876677001/
• Weixel, N. (2020, April 2). FDA loosens restrictions on gay men donating blood amid pandemic. Retrieved from https://thehill.com/homenews/administration/490824-fda-loosens-restrictions-on-gay-men-donating-blood-amid-coronavirus#.XoYgEQB4AkA.twitter

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.

'Conscience Rule' Dead...For Now

By: Sarah Hooper,  intern, ADAP Advocacy Association, and rising senior at East Carolina University

In early November 2019, a federal district judge voided the ‘Protecting Statutory Conscience in Healthcare’, declaring it was unconstitutional, in a defeat for the Trump Administration. The former rule had allowed healthcare workers to refuse to perform lifesaving medical procedures on patients based on their personal moral and religious beliefs.

The CEO of the National Women’s Law Center, Fatima Goss Graves, released a statement shortly after the ruling was announced, stating: “We are thrilled that the court saw the Trump-Pence refusal of care rule for what it is- unlawful, discriminatory, and an unconscionable attack on our health care.” (News@Jama)

The U.S. Department of Health & Human Services ("HHS") promulgated the regulation, which delved into hot topic issues including abortion and assisted suicide.

Photo Source: MedPage Today

"This rule ensures that healthcare entities and professionals won't be bullied out of the health care field because they decline to participate in actions that violate their conscience, including the taking of human life," said HHS Office of Civil Rights Director Robert Severino after the initial law was brought up. (NPR)

Had the law been ruled constitutional, it would have applied to both state and local governments and public and private healthcare. Those under Medicare of Medicaid would have been affected as well, impacting nearly 74 million people in the United States. (Statistica)

The final ruling would have allowed health care professionals to deny services constitutionally protected, such as abortion, treatment to the LGBTQ+ community, and others. The ruling would have allowed parents to object care on religious or moral grounds for their children- including suicide prevention, child abuse prevention, and vaccines.

For the many people, this is not the first time their access to healthcare has been threatened. Since the HIVAIDs epidemic first took place in the 80s, doctors and communities alike have alienated patients from treatment for fear of transmission. Since then, medical practices have improved care for HIV-infectio drastically, but the HHS law threatened to endanger more lives.

Currently a federal court case in Wisconsin is claiming violation of federal and state anti-discrimination laws. When an HIV positive woman sought treatment for a necessary gallbladder surgery, the surgeon denied the surgery because he was worried about HIV exposure to his medical team. Another hospital then removed her gallbladder in a “routine surgical procedure, which includes universal precautions taken to prevent the transmission of bloodborne pathogens such as HIV,” said the AMA Journal of Ethics. (AMA)

According to a study conducted by the National Women’s Law Center, approximately 8% of LGB individuals, nearly 27% of transgender and nonconforming individuals, and almost 20% of HIV-positive individuals report being denied needed healthcare outright. In another case, a 53-year old man was denied a kidney transplant by his insurance company because of his HIV-positive status, putting his life at risk. (NWLC)

“A patient with HIV who was admitted to a hospital reported that after he disclosed that he had sex with men, the hospital staff ignored him, refused to allow his family to visit, and did not honor his requests for his HIV medication.16 The doctor at the hospital told the patient’s personal doctor, “This is what he gets for going against God’s will” and “You must be gay, too, if you’re his doctor.”17 Despite explaining to the nurses the importance of taking his HIV medication, the patient missed five doses.18 Because some HIV medications are highly time-sensitive, a missed or delayed dose can make the medicine less effective or even completely ineffective,” said NWLC.

“Two judges in two days have recognized the Denial of Care Rule for what it is, an egregious and unconstitutional attack on women, LGBT people and other vulnerable populations. The Denial of Care Rule targets some of our most marginalized and vulnerable communities and deserves to be relegated to the dustbin of history,” said Jamie Gliksberg, a senior attorney at Lamda Legal, after the law was ruled unconstitutional.

References:

• Anderson JD, Bebe J. (December 2019). HIV Stigma and Discrimination Persist, Even in Health Care. AMA Journal of Ethics. Retrieved online at https://journalofethics.ama-assn.org/article/hiv-stigma-and-discrimination-persist-even-health-care/2009-12. 
• Gever, John (2018, November 6). Federal Judge Voids 'Conscience Rule' - Policy would have allowed providers to refuse care because of "moral objections". MedPage Today. Retrieved online at https://www.medpagetoday.com/publichealthpolicy/healthpolicy/83166?xid=NL_breakingnewsalert_2019-11-06&eun=g1295317d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=ConscienceAlert_110619&utm_term=NL_Daily_Breaking_News_Active. 
• Gostin, Lawrence O. (2019, May 15). JAMA Forum: The “Conscience” Rule: How Will It Affect Patients’ Access to Health Services? JAMA. Retrieved online at https://newsatjama.jama.com/2019/05/15/jama-forum-the-conscience-rule-how-will-it-affect-patients-access-to-health-services/.
• Kodjak, Alison (2019, May 2). New Trump Rule Protects Health Care Workers Who Refuse Care For Religious Reasons. NPR. Retrieved online at https://www.npr.org/sections/health-shots/2019/05/02/688260025/new-trump-rule-protects-health-care-workers-who-refuse-care-for-religious-reason.
• Mikulic, Matej (2018, October 26). Medicaid - Statistics & Facts. Statista. Retrieved online at https://www.statista.com/topics/1091/medicaid/. 
• National Women's Law Center (May 2014). Health Care Refusals Harm Patients: The Threat to LGBT People and Individuals Living with HIV/AIDS. Retrieved online at https://nwlc.org/wp-content/uploads/2015/08/lgbt_refusals_factsheet_05-09-14.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.

Mandating Treatment for HIV-Related Lipodystrophy: The Massachusetts experience and a call for national action

By: Ben Klein, Senior Attorney and AIDS Law Project Director, GLBTQ Legal Advocates & Defenders

There is a debilitating and disfiguring side effect of early HIV medications that causes profound suffering among our longest-term survivors of the HIV epidemic. For some, it is so severe that they do not leave their homes and become shut-ins, depressed, and suicidal. For others it causes chronic physical pain and structural damage, including spine and neck problems. And for many it is an involuntary public disclosure of HIV, still the most stigmatized health condition in America. Most public and private insurers refuse to cover the simple, inexpensive, and effective medical treatments available to remedy it.

This condition is called lipodystrophy. It is one of the most underappreciated and unattended challenges of the HIV epidemic. Massachusetts just became the first and only state in the nation to mandate insurance coverage for lipodystrophy. And we hope that the experience of the Treat Lipodystrophy Coalition in Massachusetts will become a national model for advocacy and legislation to end this unnecessary suffering.

The word “lipodystrophy” is unfamiliar to many people, even within the LGBT and HIV communities. Lipodystrophy is a consequence of the first wave of HIV medications in the late 1990s, which transformed HIV into a chronic and manageable disease. It is a metabolic disorder characterized by the abnormal distribution of fat in the body. People with lipodystrophy experience a range of disfiguring body shape changes with colloquial names like “buffalo hump” (an abnormal fat pad on the back of the neck) and “horse collar” (abnormal fat growth in the front and side of the neck and under the chin). It also causes severe wasting in the face and limbs. The effects can be devastating.

Several years ago, my organization - GLBTQ Legal Advocates & Defenders (GLAD), a legal group that fights discrimination on the basis of sexual orientation, gender identity and expression, and HIV status - began to hear from people who had been unfairly denied medical care by insurers on the specious grounds that treatment for lipodystrophy is “cosmetic.” It was through representing these individuals in their insurance appeals that I came to fully appreciate the profound physical and psychological harm caused by lipodystrophy – and to understand advocating for treatment as a true life and death matter. What we discovered was that the few people who had the capacity to lawyer up, get letters from physicians and psychologists, file an appeal citing the established medical literature about lipodystrophy, and threaten to sue, were often able to get the medical care they needed. But the very nature of the disease meant that the majority of people suffering from lipodystrophy were unlikely to be able to take on this kind of self-advocacy. It became clear that systemic change was needed.

The path to successful legislation in Massachusetts began with a conversation about the challenge of untreated lipodystrophy with Carl Sciortino, then a state representative and now the Executive Director of the AIDS Action Committee. He first raised the idea of introducing a bill and stepped up to be the original sponsor. At that time, no other legislator had heard of lipodystrophy. Most people in the HIV community, and many physicians treating them, simply assumed that coverage was impossible. Few people even bothered to try.

GLAD formed the Treat Lipodystrophy Coalition, which was made up of people living with HIV, physicians, and HIV advocacy and service organizations. We knew that to have a chance at passing an insurance mandate, we would need to find and present the stories of people whose experience living with untreated lipodystrophy would shock legislators in Massachusetts into understanding this as a critical health care issue. It was a daunting task. The shame and stigma of lipodystrophy is so powerful that many people would not meet with us and still others were not able to come forward publicly.

But with painstaking work, we were able to find a number of courageous individuals who allowed us to share their stories in the form of a book we produced called “Treatment for Lipodystrophy Denied: Sound and Compassionate Healthcare for People with HIV.” Those stories galvanized both legislators and our own community into action. We met a man named John Wallace from South Boston, whose lipodystrophy was so severe that he became hopeless and depressed and never left his home. He told us: “I’ve thought about suicide many times. But it goes against my Catholic faith.” We told the story of Mark S., who described being called “freak” and “monster” just steps from the Massachusetts State House. There is George Hastie, who recounted being denied coverage for a three-pound pad on the back of his neck that resulted in permanent spinal damage. And Andrew Fullem, who described being a “walking advertisement for HIV.”

Our first legislative hearing in March 2014 was a transformative moment. Legislators who had never before heard about lipodystrophy were close to tears. With the storybook and that powerful initial testimony as a springboard, we continued to gain traction throughout 2015 and 2016 - organizing community members, enlisting the support and expertise of respected medical professionals and healthcare agencies, engaging local and statewide media coverage, developing compelling messages and disseminating clear, concise fact sheets to legislators. We had three main messages we hammered away at:

• Cost is the foremost legislative concern with insurance mandates. We countered by demonstrating that lipodystrophy not only affects a very small number of long-term survivors, but also is a fixed and shrinking population. It is an historic problem. And the treatments, generally liposuction to remove excess fat and facial fillers to remedy wasting, are inexpensive. Here’s a postcard we delivered to all legislators:

• We always referred to lipodystrophy as a “disease” that requires medical care to counter the fallacy that treatments are “cosmetic.” Since when do we not treat a diagnosed disease? 

• Refusal to cover lipodystrophy treatments is discrimination. Insurance companies cover restorative procedures for the consequences of other diseases, such as breast reconstruction and testicular replacement for cancer patients. We don’t let insurance companies say that’s cosmetic! Refusing to treat the consequences of lipodystrophy disease is unfair discrimination against people with HIV.

When we began this process, nobody believed we had a chance at passing this bill. We were fortunate to have champions in the legislature, Representative Sarah Peake and Senator Mark Montigny, who took up the cause and pushed for passage. The law will go into effect November 9 (“An Act Relative to HIV-Associated Lipodystrophy Syndrome Treatment,” Chapter 233 of the Acts of 2016).
To be sure, HIV/AIDS advocacy and service organizations have had unrelenting and crucial battles to fight over the decades: access to testing and treatment; prevention, including PrEP and clean needles; discrimination and stigma; and the shameful criminalization statutes that still exist in a majority of states, to name just a few.  But I hope we can all agree that it is intolerable to let our longest term survivors of the HIV epidemic suffer from untreated medication side effects. Here’s hoping that the Massachusetts experience begins a national call to action to address this indefensible insurance discrimination.

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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.

North Carolina Approves ADAP Premium Assistance

By: Lee Storrow, Executive Director, North Carolina AIDS Action Network

This year, North Carolina took a big step forward to increasing access to health insurance for individuals on our state’s AIDS Drug Assistance Program (ADAP).

For years, the HIV advocacy community has been concerned about the state’s failure to provide premium assistance for individuals who purchase their own health insurance. The majority of states across the country have such programs in place, which help subsidize the cost of health insurance for ADAP eligible patients so they can receive a broader array of health services instead of just medication. Our state took a small step forward by providing co-payment assistance for medication in 2014, but the governor’s administration claimed they were prohibited from going any further.

We knew that if we were going to gain premium assistance in North Carolina, we needed to start speaking up.

In 2015, we began preparing for a robust campaign for premium assistance for ADAP. We met with leadership at the Department of Health and Human Services that December to share information with them and make sure they understood the importance of this topic to the advocacy community. Because of changing federal guidance, the state stood to lose millions of dollars in pharmaceutical rebates that helped keep the program fully funded, which gave increased urgency to our campaign.

We built a diverse team of stakeholders who could speak up on this issue, including local Health Directors, individuals living with HIV, representatives from the pharmaceutical industry, and health care providers. We started meeting with state legislators who were members of the Health and Human Services Appropriations Committee. Everything was lined up, and although I had some skepticism that we would be successful in 2016, was cautiously optimistic.

Then on March 26th, the General Assembly passed HB2.

HB 2 was passed in response to an ordinance passed by the Charlotte City Council to protect the LGBTQ community from discrimination. Prior to the ordinance’s passage, the Governor and leadership of the General Assembly voiced their opposition to the ordinance and passed HB2 to strip Charlotte’s (and other cities in North Carolina) power to pass nondiscrimination ordinances. HB2 gained national notoriety for also requiring trans individuals to use the bathroom of the gender they were assigned at birth.

HB2 inspired significant media attention and protest, and the bill has continued to dominate statewide and national media. The business community came out strongly against the bill, and national associations and performers cancelled conferences and concerts. All of the noise started to make me nervous about our premium assistance campaign. NC AIDS Action Network supported the Charlotte ordinance; we know that LGBTQ discrimination and HIV stigma are closely linked. Though we know that HIV impacts everyone, it’s no secret that it has a disproportionate impact on the gay and trans community, and I feared that our policy change could get caught up in the tense political environment around LGBTQ rights.

Under these adverse conditions, we stayed true to our original message. Premium assistance was good health policy that would increase access to a wide range of services for low-income individuals and was good economic policy to secure needed funding to keep ADAP solvent. We generated media attention across the state and continued to meet with legislators to discuss the importance of this policy shift.

I still remember where I was when I saw the first copy of the House’s proposed budget.

Rep. Josh Dobson was a co-chair over the Health and Human Services Appropriations Committee in the House, and we had been trying to meet with him for several weeks. We finally got a couple minutes, and I sat down with him ready to make a fast pitch about why premium assistance was vital for our state. We anticipated the proposed budget would be released that week, possibly that day. After I spoke for a couple minutes, he stopped me, pulled out a copy of the draft budget, and pointed to the section that included language authorizing premium assistance for ADAP. “Is this what you’re talking about?”

I quickly realized I didn’t need to explain any more, and thanked him for his support. He explained that several of his colleagues we had already met with spoke well of this proposed change, and he was happy to support it.

From there, everything fell into place. The House budget passed without changes to our provision, and the Senate included it in their proposed budget, as well. The General Assembly passed the final state budget at the end of June, and the Governor signed it on July 14th.

I know for many states this might seem like a very small victory. The vast majority of states in the United States have already implemented premium assistance administratively without having to run a legislative campaign. We didn’t have that path in North Carolina, and we can’t help but feel victorious of the victory we achieved this year. We were lucky to have bipartisan support for this provision and leadership that understood that this was good for public health and good for the state’s economic bottom line. We now move to implementation, and supporting the Department of Health and Human Services in making premium assistance a reality for North Carolina.

From left to right- Allison Rice, Alicia Diggs, and Lee Storrow

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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.