2018 National Ryan White HIV/AIDS Program Part B & ADAP Monitoring Project Annual Report

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

The National Alliance of State & Territorial AIDS Directors ("NASTAD") earlier this year released its annual report on the AIDS Drug Assistance Program ("ADAP"), 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report. It includes state-level program-related major findings, tables, with data, and thus it provides the most comprehensive snapshot on all 50 states, District of Columbia, Puerto Rico, U.S. Virgin Islands, and the six U.S. Pacific Territories. It is a must-read for ADAP stakeholders!

Photo Source: NASTAD

Upon releasing the 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report, NASTAD issued the following statement:

"Building on the 22-year history of reporting on the AIDS Drug Assistance Program (ADAP), the National ADAP Monitoring Project, including the Annual Report, has evolved to include the program under which ADAP falls – the Ryan White HIV/AIDS Program (RWHAP) Part B program.  The Annual Report has thus been renamed and reimagined.  The 2018 National RWHAP Part B and ADAP Monitoring Project Annual Report (The Report) includes narrative and findings that span the totality of the RWHAP Part B program and reflect the reality that the achievements of ADAPs and other elements of the RWHAP Part B programs are inextricably linked."[1]

The report includes relevant information about ADAP's funding and structure, as well as key programmatic details — such as number of clients served, viral load suppression rates, and medical program expenditures. This year's report also includes important sections on structural inequities and the changing health care landscape. Infographics once again accompanied this year's report. In addition, a glossary of key ADAP terms can be found on the NASTAD website.

In FY2017, Congress appropriated $1.4 billion for RWHAP Part B programs, with $898.8 million appropriated to ADAP specifically. Funding was also allocated to 24 Part B Supplemental grants, 9 Part B ADAP Supplemental Treatment grants, and 9 ADAP Emergency Relief grants. Additional funding sources included Part A contribution allocated to Part B (2), State contributions (31), drug rebates (46), and other State/Federal funds (23).[2]

Some key findings include:

• Fourth open enrollment period via Affordable Care Act insurance marketplace ended on April 30, 2017[3]
• Part B estimated drug rebates = $193,335,704[4]
• ADAP estimated drug rebates = $723,825,912[5]
• $398.2 million in estimated expenditures insurance purchasing/continuation[6]
• 48% ADAP clients served by full-pay prescription program only[7]
• 38% ADAP clients served by ADAP-funded insurance program only[8]
• 14% ADAP clients served by ADAP-funded insurance and full-pay prescription programs[9]
• 273,680 RWHAP Part B & ADAP clients enrolled[10]

Other key component of the report include valuable information about clients co-infected with HIV and Hepatitis C ("HCV"), incarcerated and formerly incarcerated populations, aging populations (and related morbidity and mortality), and clients impacted by substance use. As is customary, NASTAD should be applauded for their amazing work on pulling together all of this information for ADAP stakeholders.

To download the 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report, go to https://www.nastad.org/PartBADAPreport.

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[1] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report. Retrieved from https://www.nastad.org/PartBADAPreport.
[2] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 9). Retrieved from https://www.nastad.org/PartBADAPreport.
[3] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 11). Retrieved from https://www.nastad.org/PartBADAPreport.
[4] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 15). Retrieved from https://www.nastad.org/PartBADAPreport.
[5] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 15). Retrieved from https://www.nastad.org/PartBADAPreport.
[6] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 25). Retrieved from https://www.nastad.org/PartBADAPreport.
[7] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 27). Retrieved from https://www.nastad.org/PartBADAPreport.
[8] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 27). Retrieved from https://www.nastad.org/PartBADAPreport.
[9] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 27). Retrieved from https://www.nastad.org/PartBADAPreport.
[10] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 30). Retrieved from https://www.nastad.org/PartBADAPreport.

Why Our Annual ADAP Leadership Awards Are More Than a Shiny Plaque

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

The ADAP Advocacy Association earlier this week announced the Call for Nominations for its 2018 Annual ADAP Leadership Awards. The awards recognize individual, community, government and corporate leaders who are working to improve access to care and treatment for people living with HIV/AIDS - notably under the AIDS Drug Assistance Program (ADAP). Whereas the honorees are awarded a shiny plaque, more importantly they receive the acknowledgment and appreciation for their meaningful contributions to ending the epidemic impacting the 1.1 million people in the United States who are living with HIV/AIDS.

Submit a nomination at https://www.surveymonkey.com/r/F52YKT3.

Nominations are solicited annually from the community, and honorees are selected by an Awards Committee comprised of our board members, as well as other ADAP stakeholders (including former award honorees). The awards are presented to the honorees during our Annual ADAP Leadership Awards Dinner, which is held at the conclusion of our Annual AIDS Drug Assistance Program Conference in Washington, DC. This year's awards dinner is slated for Friday, September 21st and it will be headlined by the one-and-only Josh Robbins, who is "one of the coolest HIV-positive patient advocates in the history of the world."

The award categories focus on community-based advocacy, social media advocacy, and grassroots advocacy. Additionally, individuals are recognized for their contributions with the "William E. Arnold" ADAP Champion award, Emerging Leader award, and Lawmaker award. Other awards are also part of the annual celebration of the grit, grind, satisfaction, and tribulations associated with fighting the epidemic.

2018 represents the eleventh year that the ADAP Advocacy Association has publicly thanked honorees for their leadership, and since 2010, it has been done at our awards dinner. We invite you to nominate someone today at https://www.surveymonkey.com/r/F52YKT3.

National Survey on State of ASOs/CBOs Identifies Key Trends

By: Brian Hujdich, Executive Director, HealthHIV & Marissa Tonelli, Senior Capacity Building Manager, HealthHIV

AIDS Service Organizations and Community-Based Organizations ("ASOs"/"CBOs") need more financial support to expand services, diversify funding, integrate clinical services, and improve fiscal processes in order to remain relevant in the dynamic healthcare landscape, according to HealthHIV's inaugural State of ASOs/CBOs National Survey.

Key survey findings indicate that:

• Over 75% of ASOs/CBOs increased service offerings in the past three years in response to client needs.
• Nearly all ASOs/CBOs offer HIV testing and counseling; however, only 49% offer PrEP services to clients and only 44% offer HIV care and treatment.
• 33% of ASOs/CBOs report that funding comes from only government sources and 1 in 8 (12%) rely on a single source of funding to maintain HIV programs.
• Over 33% of ASOs/CBOs have changed or expanded their missions in the past year and 25% developed a shared services partnership with another agency.
• ASOs/CBOs need training and technical assistance on fiscal sustainability areas such as revenue generation/diversification, unit cost calculation for services, and performance-based payment models.

The most common word that ASOs/CBOs used to describe the state of ASOs/CBOs was 'challenging', which illustrates how organizations are struggling through the uncertain times. ASOs/CBOs must continue to evolve to remain relevant since they play a vital and necessary role in ending the epidemic. We hope the survey data will assist in guiding stronger, resilient organizations.

The report of HealthHIV’s inaugural State of ASOs/CBOs in the US(TM) survey (right) includes data reported from over 500 ASOs/CBOs and provides insights on how ASOs/CBOs are responding to the current HIV and healthcare landscapes, including impacts on workforce development, service coordination, fiscal sustainability, partnership development, and strategic planning. Survey findings emphasize the need for more diverse interdisciplinary training and technical assistance opportunities.

ASOs/CBOs across the country are reaching the most vulnerable populations at highest risk for HIV infection. Survey results indicate that these organizations are largely reliant on government funding for their HIV services; putting them at financial risk in the dynamic healthcare landscape. Now, more than ever, ASOs and CBOs need training and guidance to ensure sustainability of HIV programs by increasing fiscal diversification and demonstrating the impact and value of their HIV programs.

In conjunction with the survey, HealthHIV and the Test Positive Awareness Network (TPAN) launched an online National ASO/CBO Directory 2018 to create a national resource on the availability, breadth and depth of HIV services available to health care consumers. The Directory is searchable by services categories and location, and serves as a repository for organizations to initiate partnerships and streamline service delivery in their jurisdictions.

HealthHIV's State of ASOs/CBOs in the US survey report can be viewed on HealthHIV.org. The National ASO/CBO Directory 2018 is at HealthHIV.org/Directory. The online directory is a searchable repository of HIV prevention, care, and support services provided by ASOs/CBOs in the U.S. To add an ASO or CBO to the National ASO/CBO Directory 2018, complete the online form.




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.

Mainstream News Media Has a Long History of Failing the HIV Community

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

The New York Times recently issued a meā culpā for its disastrous failure to adequately cover the emergence of the AIDS crisis in the early days of the epidemic. In many ways the newspaper helped to fuel the stigma still lingering today with their coverage that often included incorrect information or unsubstantiated claims about the disease. Its news miscarriages also included not reporting timely on the emerging crisis as it unfolded, or tucking the stories in the back of the newspaper.[1] Unfortunately, aside from the positive (pun intended) emergence of today's HIV-focused news outlets — such as The Body, HIV Plus Magazine, POZ Magazine, to name a few — people living with HIV/AIDS have continually been let down by the mainstream news media.

"The New York Times had a spotty record of covering the AIDS epidemic in the early 1980s — and gay culture in general. Times staffers reflect on the paper’s past, and what we can learn from it today."[2]

Larry Kramer, one of the most iconic figures in the fight against HIV/AIDS, described the Times' coverage in the early days as nothing less than homophobic. In fact, Kramer's assessment of the newspaper included a blistering indictment because "many millions are dead from a plague that the Times wouldn’t warn the world about.”[3]

Photo Source: NY Magazine

The New York Times wasn't the only culprit fueling HIV-related stigma among the mainstream news media in the 1980s, as was recently documented by HIV Plus Magazine's exposé on the infamous "patient zero" myth. The article, 'Patient Zero': Correcting the Record on a Media-Made Gay AIDS Villain, systematically dissects how Gaëtan Dugas was created into a monster by legacy news outlets, such as Time® Magazine, CBS News' 60 Minutes, and the New York Post.

The 1990s would prove no different. Who could forget the spotty, stigma-fueled news reporting on the HIV diagnosis of the legendary NBA basketball player Earvin “Magic” Johnson in 1991, as well as the death of the Godfather of Gangsta rap, Eric Lynn Wright (better known by his stage name Eazy-E) in 1995.

The long history of checkered reporting by the mainstream news media made it more difficult to dispel the myths surrounding the disease. It fact, systemically poor so-called "reporting" enabled bigots like former U.S. Senator Jesse Helms to demonize people living with HIV/AIDS in the 1980s-1990s, and Vice President Mike Pence to propose morally bankrupt ideas in 2000.

Photo Source: Andrew Kaczynski's Twitter Feed

In 2010, only crickets could be heard when over 10,000 people living with HIV/AIDS in 13 states were placed on waiting lists to access their life saving medications under the AIDS Drug Assistance Program ("ADAP"). Why? Because the mainstream news media barely addressed the public health crisis. At the time, not a single national television broadcast segment by ABC, CBS or NBC covered the ADAP Crisis, as it would be termed. If not for some mainstream news media journalists, such as op-ed columnist Charles M. Blow, then the advocacy to secure the necessary funding would have been even more difficult.

The trend has continued today, with virtually no reporting on the discriminatory design behind HIV treatment in the Affordable Care Act ("ACA") marketplace. Whereas overall people living with HIV/AIDS have been well-served by the ACA, there are still many shortcomings not being covered by the mainstream news media.

It is hard to look back over the years and not come away with the conclusion that the mainstream news media has a long history of failing the HIV community. As a result it has made advocacy even harder!

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[1] Soller, Kurt (2018, April 27). Six Times Journalists on the Paper’s History of Covering AIDS and Gay Issues. The New York Times. Retrieved from https://www.nytimes.com/2018/04/27/t-magazine/times-journalists-aids-gay-history.html.
[2] Soller, Kurt (2018, April 27). Six Times Journalists on the Paper’s History of Covering AIDS and Gay Issues. The New York Times. Retrieved from https://www.nytimes.com/2018/04/27/t-magazine/times-journalists-aids-gay-history.html.
[3] Artavia, David (2018, May 4). The New York Times Apologizes for Ignoring AIDS. HIV Plus Magazine. Retrieved from https://www.hivplusmag.com/stigma/2018/5/04/new-york-times-apologizes-ignoring-aids.
[4] Broverman, Neal (2018, May 15). 'Patient Zero': Correcting the Record on a Media-Made Gay AIDS Villain. HIV Plus Magazine. Retrieved from https://www.hivplusmag.com/stigma/2018/5/14/patient-zero-correcting-record-media-made-gay-aids-villain.

Would You Like Some Carolina Sweet Tea with Your Felony Charge?

By: Jonathan J. Pena, intern, ADAP Advocacy Association, and rising junior in social work, North Carolina State University

When the time came to move out of New York City, I set my sites on moving down South. I have always heard that the South was very welcoming and full of charm, so I was naturally very exited to replant my roots in North Carolina. The southern charm of being in North Carolina was short lived because up until recently the state had an outdated HIV criminalization laws that required individuals living with HIV to disclose their HIV status to any sexual partners.

Failure to do so, among other requirements under the law, would result in serious consequences like prosecution and jail time. According to the Sero Project, in North Carolina the maximum penalty for violation is two years in prison if convicted.[1] There are numerous and various cases of this including a man living with HIV being convicted and then sentenced to 35 years in prison for using a deadly weapon on a police officer… his saliva.[2]

As a man living with HIV it sets off all my alarm bells for various reasons. The first is that much of driving force behind the adoption of the HIV criminalization laws was the fear that surfaced during the early years of the epidemic. Thirty years ago, it was certainly a death sentence but modern medicine has changed that diagnosis with the great leaps in antiretroviral therapy. According to the Centers for Disease Control & Prevention, anyone living with HIV who takes anti-retroviral medication as prescribed, and who have an undetectable viral load, presents no risk of transmitting the virus to an HIV-negative person.[3]

Unfortunately, many things have not changed along side modern medicine, such as fear, misconceptions and uninformed beliefs and thought processes regarding HIV. Additionally what concerns me with HIV criminalization laws is that it continues to keep the stigma that is attached to being HIV-positive in place. There are numerous forces that put in enormous effort to diminish or eradicate stigma but these laws set back all of the progress that has been made over the years. What these laws ultimately do is create a level of fear that is dangerous for those who are HIV-negative and HIV-positive. For those who are HIV-negative the fear of prosecution from an HIV diagnosis keeps them from being tested when the real fear is not knowing or infecting others unknowingly. For those who are HIV-positive the stigma and fear of prosecution pulls them away from seeking treatment or continuing their care. The end result is detrimental to those in and out of the HIV community and completely counterproductive.

Luckily, the recent change to the HIV-criminalization law in North Carolina has changed the steering for us as a collective society to head in a different direction.[4] Under the new law those living with HIV no longer have to disclose their HIV status to sexual partners if they are virally suppressed for six months or longer. Along side these changes, the revised law also reflects a change in language, which replaces “a person infected with AIDS” with “a person living with HIV”. While these changes are small they have huge impacts in the fight against HIV and the stigma that is attached to it. This revision is aligned with the changes that have occurred since the beginning of the epidemic and reflect more accurately the realities of living with HIV and the consciousness that is needed in order to ensure that we, as a collective society, are informed appropriately and accurately. If we continue this upward pace then things will definitely start getting a little sweeter down here.

Photo Source: Western North Carolina AIDS Project

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[1]  The Sero Project. North Carolina. Data from the GNP+ Global Criminalization Scan. Retrieved from: http://www.seroproject.com/states/north-carolina/
[2] New York Times. (2008, May 16). Prison for Man With H.I.V Who Spit on a Police Officer. Retrieved from: https://www.nytimes.com/2008/05/16/us/16spit.html
[3] HIV Plus Magazine. (2017, October 22). CDC Officially Admits People With HIV Who Are Undetectable Can’t Transmit HIV. Retrieved from https://www.hivplusmag.com/undetectable/2017/9/27/breaking-cdc-officially-recognizes-undetectableuntransmittable-hiv-prevention
[4] Western North Carolina AIDS Project. (2018, Feb 20). HIV Criminalization Laws Change in North Carolina. Retrieved from: https://wncap.org/2018/02/20/hiv-criminalization-laws-change-north-carolina/

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/AIDS Fireside Chat Retreat in Tampa Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Tampa, FL among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS and/or viral hepatitis. The Fireside Chat took place on Thursday, May 17th, and Friday, May 18th. Although there was no fireplace in the room, there was plenty of heat generated by the fiery give-and-take.

Photo Source: Getty Images

The Fireside Chat included a series of three moderated white-board style discussions about the following issues:

• 340B Drug Pricing Program
• Opioid Epidemic & Impact on HIV
• Ryan White Program & Underserved Communities

Each of the white board discussions was facilitated by a recognized content expert followed by an in-depth dialogue among the retreat attendees. The discussions certainly couldn't be characterized as a Kumbaya, since vastly different perspectives were seated in the room. Rather the discussions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat.

The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

340B Drug Pricing Program:

The discussion on the 340B Drug Pricing Program was facilitated by Jeffrey R. Lewis, President & CEO of the Legacy Health Endowment based in Turlock, CA. Lewis also serves as co-chair of the newly-minted national commission taking a thorough and candid review of the 340B Drug Pricing Program, and making specific recommendations to Congress on how and in what ways the program should be strengthened. The discussion focused on why the program is important to the Ryan White Program and other covered entities, such as hemophiliac clinics and community health centers. Also discussed were the “tough choices” to reform the program, as well as the “opportunities” to expand the program (i.e., Corrections), and why?

The following materials were shared with retreat attendees:

• Overview of the 340B Drug Pricing Program, by the Medicare Payment Advisory Commission (MedPAC)
• Consequences of the 340B Drug Pricing Program, by Sunita Desai, Ph.D., and J. Michael McWilliams, M.D., Ph.D.
• Market Distortions from the 340B Drug Pricing Program, by Adam J. Fein, PhD
• The Ugly Co-Pay Surprise, infographic by the Alliance for Patient Access
• Community Access National Network Tackles Challenges Facing the 340B Drug Pricing Program 

The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey R. Lewis for facilitating this important discussion.

Opioid Epidemic & Impact on HIV:

The discussion about the ongoing intersection between the opioid epidemic and HIV was facilitated by David Fawcett PhD, LCSW. It focused on opioids among at-risk populations, but also the growing crystal methamphetamine use. Also discussed were health disparities and access to care, and harm reduction strategies — such as Syringe Exchange Programs ("SEPs") and medication assisted programs.

The following materials were shared with retreat attendees:

• Opioid Fact Sheet, by David Fawcett, Ph.D., LCSW
• Meth, the Other Epidemic, Poses a Real Risk for HIV, by Dr. David Fawcett
• Body & Soul: Combatting the Dual Epidemic of HIV-Infection and Substance Abuse, webinar with Dr. David Fawcett)

The ADAP Advocacy Association would like to publicly acknowledge and thank Dr. David Fawcett for facilitating this important discussion.

Ryan White Program & Underserved Communities (i.e., women, LGBT, formerly incarcerated, undocumented immigrants, etc.):

The discussion about underserved communities served (or potentially served) by the Ryan White Program was facilitated by Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center. It focused on the existing structure of the Ryan White Program and the program's essential roles, as well as evidence for the program’s success. Important questions raised included what are structural changes that could help the program to seize current or future opportunities to increase engagement in care and viral suppression, and should the program consider new roles (i.e. financing and delivering PrEP or financing HCV treatment for mono-infected individuals), among others.

The following materials were shared with retreat attendees:

• Protecting and Advancing HIV Public Health Gains During Health System Reform, by Jeffrey S. Crowley, Sean Bland, and Connie Garner
• HIV Prevention: Assessing Our Progress and Charting a Future Direction, by Jeffrey S. Crowley and Sean E. Bland
• Healthcare Coverage for HIV Provider Visits Before and After Implementation of the Affordable Care Act, Barry SA et al
• Affordable Care Act Qualified Health Plan Coverage: Association With Improved HIV Viral Suppression for AIDS Drug Assistance Program Clients in a Medicaid Nonexpansion State, by McManus KA et al
• Editorial Commentary: Affordable Care Act, Medicaid Expansion … or Not: Ryan White Care Act Remains Essential for Access and Equity, by Eaton EF and Mugavero MJ

The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey S. Crowley for facilitating this important discussion.

Additional Fireside Chats are planned in 2018.

Trump Administration Seeks to Re-Write Portions of 1557 Final Rule

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

When the Patient Protection and Affordable Care Act ("ACA"), or commonly called Obamacare, passed in 2010, of hot but limited debate was the potentially expansive nature of Section 1557 of the legislation. Considered to be a broad expansion of non-discrimination protections in health care, Section 1557 “prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs and activities.” Section 1557 is the first federal civil rights law to prohibit discrimination on the basis of sex in covered health programs and activities.

Despite citation of enforcement of this provision since 2010, the Obama Administration would wait until September 15, 2016 to issue a Final Rule outlining exactly how Section 1557 should be applied. Of particular note in the 380+ page rule, the U.S. Department of Health & Human Services ("HHS") gave guidance on translation service requirements, disability accommodation requirements, quality of care with regard to pregnancy history, and classified transition related care for transgender people as care protected on the basis of sex. HHS would cite certain legal precedent, including the Supreme Court decision in Price Waterhouse v. Hopkins (1989) and subsequent case law pertaining to “sex stereo typing” as it relates to gender identity and expression. In a somewhat surprisingly broad application, HHS’ Final Rule not only stated ability for government enforcement of Section 1557 but the right of private action by aggrieved patients. In short, patients were being extended the opportunity to sue certain private health care and insurance providers for refusing care to transgender people. To say this was a “big deal” would be an understatement. Transgender advocates went WILD with joy and celebration of a major win.

Vast portions of the Final Rule were to go into effect on January 1, 2017. On December 31, 2016, at the behest of five states and a group of Christian identified medical providers (including dentists…I’m not kidding), Judge Reed O’Connor of the U.S. District Court for the Northern District of Texas issued an injunction against implementation of portions of Section 1557 regarding transgender patient care protections and abortion related care. Judge O’Connor has a nasty history of him issuing rulings that marginalize LGBTQ Americans. This case, Franciscan Alliance, Inc. et al v. Burwell, was no different. The injunction prohibited the government from implementing and enforcing the Final Rule. It did not, however, prevent patients from seeking suit should they experience discrimination.HHS would reverse the position of defending the Final Rule after the administrative transitioned over to Donald J. Trump. In July, 2017 HHS submitted a brief seeking a stay while it “reconsiders” the policy, indicating an intention by new HHS leadership to walk back the nature of the protections offered by Section 1557. The stay was granted. It is of important note that HHS’ Office of Civil Rights is now lead by Roger Severino, an appointment widely opposed by equality organizations on the basis of Severino’s well documented and very public statements in support of discrimination against LGBTQ people.

The change has been haunting transgender advocates for almost a year. And here’s why:

• Broadly, prior to the ACA, transgender identity was considered a “pre-existing condition”. The prohibition of refusal of coverage on the basis of a pre-existing condition meant transgender people, for the first time, could not be refused coverage at the application process. Still, transgender people commonly faced notation that plans did not cover transition related care. The Obama Administration's version of the Final Rule explicitly outlined that insurance companies could no longer continue the practice of excluding transition related care, impose burdensome requirements to qualify for coverage through discriminatory plan design, or impose burdensome appeals processes due to automatic denials of care because of a “sex mis-match” in approval systems. While HHS was not prescriptive in telling insurance companies how to address these issues as the most common barriers to coverage transgender people face, the agency was clear: “care delayed is care denied”.

• Another unfortunately common experience transgender people faced and continue to face is “transgender broken arm syndrome”, a situation where a transgender person seeks routine medical care unrelated to their transition care but receives less than standard quality of care due to bias of providers. A real-life example I encountered in my advocacy includes a transgender woman seeking emergency care for trouble breathing. The patient was asked about her current medication use, including an estrogen, wherein she disclosed her identity as transgender. She was given two breathing treatments and sent home. The patient was not given a chest x-ray or other diagnostics to determine appropriate care. The patient returned the emergency room a few days later with pneumonia, a diagnosis she only received after having to insist on a chest x-ray. The Final Rule under the Obama Administration considered this type of treatment, no matter the setting, to be discriminatory in nature and a violation of the protections afforded under Section 1557.

• According to the 2015 US Trans Survey, a work product from the National Center for Transgender Equality, 25% of transgender people experienced being denied routine or transition related care by their insurance provider, more than half of those seeking coverage for transition-related surgery were denied, and 25% of those seeking coverage for hormone replacement therapy were denied. The same survey also found that 33% of respondents who saw a healthcare provider experienced refusal of care, being verbally, physically, or sexually assaulted, or having to teach their providers about transgender people in order to receive appropriate care. Because these experiences are known among this community, 23% of respondents did not see a medical provider when the needed to out of fear of being mistreated. These findings are particularly worse for transgender people of color. Compounding fears of discrimination, potential refusal of coverage, and discrimination in employment, 23% of transgender people did not seek care when they needed it because they could not afford care.

• In 2011, the Centers for Disease Control & Prevention ("CDC") revised HIV surveillance to include transgender people as a target population. In 2017, the CDC acknowledged transgender people as underserved and interventions for this community as understudied. The 2015 US Trans Survey found a self-reported rate of HIV among transgender populations of 1.6%, or FIVE TIMES that of the general population, with a self-reporting rate of 19% among Black transgender women.

• In October 2017, HHS issued a new Conscience Rule, specifically targeting abortions, assisted suicide, and transition-related care. While not even daring to mention the word “transgender”, the agency couched the discriminatory Final Rule under the language of “sterilization”. Transgender advocates rightly fear the impact of codifying sanctioned discrimination in health care under the current administration. Rolling back the reach of Section 1557 as a protective provision would open the flood gates of claims of “religious liberty” to deny care and coverage to transgender people.

HIV service organizations and advocacy groups hold a unique opportunity to advocate for this highly marginalized intersection of HIV-positive, transgender people. As transgender advocacy organizations take to legal action to slow the tide of discriminatory action by the current Administration, HIV advocates would do well to seek ways to support the fight ahead, institute model policy for both transgender clients and employees, and work to provide a backbone of social and medical support for this community.

From community based agencies to State AIDS Drug Assistance Programs, identifying and educating legislators to advocating for expansive formularies, covering transition related HRT in both Ryan White Part A and B (ADAPs), the power of partnered advocacy cannot be understated. We cannot “get to zero” without addressing the needs of transgender people and we cannot address those needs without strong protections, combating systemic discrimination against transgender people.




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.