Thursday, October 18, 2018

Policy Recommendations & Action: Transgender Advocacy

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

As advocates, we are asked frequently about the concrete steps we would like to see from our industry partners. Effective advocacy requires actionable items, clear direction, and tangible benefits for affected communities. With this in mind, we have established a few recommendations for our industry partners to consider when seeking to do “the next right thing” for Transgender populations. We chose to highlight Transgender and Gender Non-Conforming populations due to disparate impacts in health this population faces.

While reviewing, industry partners may notice certain common principles: leverage of positions of power in advocating for governmental recognition of personal dignity, protections of individual right to access to care, “centering” affected populations and population needs in funding and proposals, “filling” gaps in necessary medical knowledge with regard to the specific needs of affected population, partnership with smaller entities, more closely connected to or run by affected populations, and an introspective evaluation of our own operations. After all, leading by example empowers and invites other partners to join us in best practices.

Effective advocacy may require precision in action; it also requires broad understanding outside of traditional scope of one’s organization. In understanding the variety of socio-economic determinates in health, to effectively close the gaps of disparities, we must also work to affect change in areas outside of health.

Policy Recommendations and Action: Transgender Advocacy

  • Public comment on rulemaking:
    • Religious Freedom/Conscience: “Religious freedom” is currently being used as a beacon call for restricting the rights and/or protections of LGBTQ persons. While not always specifically naming Transgender persons, the Trump Administration has preferred to use language regarding “medical sterilization”, a coded effort targeting transition related care such as cross-sex hormone replacement therapy and gender confirmation surgeries. Oppose these changes.
    • Section 1557: The Trump Administration has chosen to not defend the reading of Section 1557 of the Affordable Care Act as interpreted by the Obama Administration. Government entities are enjoined from enforcing protections on the basis of gender identity and pregnancy history due to the Northern District of Texas ruling in December of 2016. The U.S. Department of Health & Human Services and U.S. Department of Justice has indicated the agencies will re-write the rule to exclude these protections. Oppose these changes.
  • Amicus Briefs: 
    • Employment and other rights as described under the Civil Rights Act ("CRA")of 1964: Case law has begun to recognize the inclusion of gender identity as covered by the prohibition of sex based discrimination in the CRA. The Obama Administration adopted an interpretation stemming from the Price Waterhouse decision on sex stereotyping: “but for” the sex assigned at birth/biological anatomy of a person, entities would respect the rights and protections of a person as their self-identified gender. The Trump Administration is seeking to codify into case law a strict reading of the “sex” provisions of the as “anatomical sex” as opposed to gender identity. Oppose these arguments where possible via amicus briefs and sign-on letters.
  • Funding and Programing:
    • Transgender specific organizations are often in competition for grant funding with larger LGBTQ organizations: Prioritize “by/for” Community Based Organizations ("CBOs") and projects when issuing Requests For Proposals for Transgender specific grants.
    • Expand funding in RFPs for Transgender-specific grants: Often, Transgender-specific grants are ambiguous in nature and limited in funding. Ensure each Transgender-specific grant RFP is large enough for 1 FTE and deliverables has measurable impact on Transgender populations. Consider seeking a Transgender consultant to help draft these grant RFP.
    • Ad Hoc Funding: Seek out Transgender-specific CBOs and ask what services they lack funding for.
    • Fully fund full-time and part-time internships: Transgender persons often lack formal education requirements for employment, most typically due to fears of harassment and increased poverty experiences. As a result, it is common for Transgender persons to seek “underground economy” work. Funding internships exempt from formal education requirements and accounting for previous work experience and lived experiences would provide an opportunity to reduce poverty among Transgender persons, ensure health insurance coverage, and position Transgender persons to build formal and meaningful work experience while also assisting funded entities on a variety of projects.
    • Fund Transgender-specific depression coping skills programming.
  • Internal Competencies:
    • Ensure local offices receive Transgender cultural competency training annually: Hire “by/for” organizations local to each office. This is especially important for community liaisons and sales staff.
    • Hire Transgender persons: Estimates show Transgender persons are 1-3% of the population. Perform an internal audit and ensure internal employment statistics reflect this population.
    • Ensure company sponsored health insurance covers gender affirming care: Many insurance carriers impose burdensome bureaucratic barriers to coverage approval for gender affirming care; ie. Gender marker changes on government identification or name changes as evidence of “living as the desired gender”. To fulfill either of these, requires a court order. Making gender affirming care the only type of standard medical care that requires a court order on a consistent basis. Ensure employee plan offerings do not impose such barriers.
  • Lobbying:
    • Lobby on behalf of Transgender rights protections legislation: Both on the state and federal level.
    • Lobby state insurance regulators to standardize policies for gender affirming care: Few states have a codified avenue for complaint when an insurance company refuses to cover or imposes burdensome requirements to gender affirming care coverage.
    • Lobby for Federal Qualified Health Center ("FQHC") infrastructure funding: Many Transgender persons rely on FQHC’s for their gender affirming care. Unfortunately, the federal government has not issued physical infrastructure support funding for FQHCs in 4 years. Work to ensure FQHCs are appropriately funded.
    • Lobby for mental health funding in schools: Limited to no funding is provided to include development of coping skills in children. Transgender children or children exploring their gender identity are prone to depression due to social and peer stigma. Work with education lobbying efforts to ensure funding and programmatic develop of effective empathy building and coping skills building.
  • Invest and research:
    • Invest in and include transgender persons in research for product development; including but not limited to clinical study, marketing, and Transgender-specific research. Develop research ethics protocols for including Transgender persons in clinical research. Ensure studies include socio-economic adherence barriers among Transgender populations and meaningful strategies to overcome.
    • Areas of interest may include hormonal impacts on mental health, efficacy of products among Transgender populations, hormone replacement therapy impacts on efficacy of products, and more.
  • Build Partnerships:
    • With Transgender-specific CBOs and Transgender serving CBOs.
    • With lobbying entities working on behalf of Transgender persons
    • With patient advocacy organizations working at the intersections of health disparities affecting Transgender persons; ie. HIV, STIs, addiction, etc.
Industry partners interested in learning more about implementing Transgender advocacy policy recommendations and action can contact us at

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.

Thursday, October 11, 2018

NPR Examines Health Disparities Facing Former Inmates Living with HIV/AIDS

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

The inadequate approach to linking formerly incarcerated inmates living with HIV/AIDS in the United State to timely access to care and treatment gained an important spotlight. This week, National Public Radio's public health feature by Heather Boerner, "After Prison, Many People Living With HIV Go Without Treatment," draws attention to formerly incarcerated people struggling to get health care and treatment for HIV on re-entering society.

The ADAP Advocacy Association has elevated the issue among its public policy portfolio this year, highlighted by its Correctional Health Project  which has included numerous blog posts, an infographic, and forthcoming policy white paper on the role of the State AIDS Drug Assistance Programs ("ADAPs") serving these people. As noted on July 5th by our intern, Jonathan J. Pena, "Programs do exist, such as State ADAPs, which are designed to assist these individuals. But the most recent National ADAP Monitoring Project demonstrates that ADAPs are assisting some of these individuals, it is also clear more can be done to assist them. The National AIDS Strategy also provides some guidance to help formerly incarcerated populations achieve viral suppression."[1]

After Prison, Many People Living With HIV Go Without Treatment
Photo Source: Kenyon Ellsworth for NPR

Boerner's article examines a recent study about post-incarceration release and the disparities that exist in gaining access to healthcare (including anti-retrovirals medications). Unfortunately, nearly one-third of the inmates tracked had fallen out of care within one year after being released from prison or jail.[2]

It isn’t to say that incarcerated and formerly incarcerated HIV-positive populations aren’t being served by the ADAPs. According to the National Monitoring Project’s annual report, services provided to recently incarcerated individuals in 2016 shows that 42% were receiving federal funds for ADAP-related services; however, 64% of those who were currently incarcerated in county or city jails were not being provided any services because the reach of ADAP doesn’t include jail divisions.[3]

Our forthcoming policy white paper aims to shed further light on the issue, with recommendations. We commend NPR and Boerner for covering this important issue on health disparities for former inmates living with HIV/AIDS.

[1] Pena, Jonathan J. (2018, July 5). Linkages to Care During Post-Incarceration. ADAP Blog. Retrieved from 
[2] Boerner, Heather (2018, October 9). After Prison, Many People Living With HIV Go Without Treatment. National Public Radion. Retrieved from
[3] National Alliance of State & Territorial AIDS Directors (2018). National Ryan White HIV/AIDS Program Part B & ADAP Monitoring Project Annual Report. Retrieved from:

Friday, October 5, 2018

Did Trump Pull the Plug on ONAP & PACHA?

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

The ADAP Advocacy Association has learned from a highly credible source that the Trump Administration will not fill the vacant director position at the Office of National AIDS Policy (ONAP), nor will appointments be made for the Presidential Advisory Commission on HIV/AIDS (PACHA). These important leadership roles have remained unfilled since President Barack Obama left the White House, or soon thereafter.

Angry looking photo of Donald J. Trump
Photo Source:
Earlier this year the ADAP Advocacy Association called for the appointment of an ONAP director after Amy Lansky, ONAP's last-serving director, stepped down. Subsequently, it has been an issue at the center of our advocacy efforts, including a previous ADAP Blog. It should really come as no surprise that the Trump Administration, which has proven itself to not be friendly to the HIV/AIDS community, would leave ONAP vacant. 

Equally troubling is how the Trump Administration solicited nominations for PACHA, only to file them in the trash. It begs the question: Is there no regard for our community’s input into this nation’s public health response to the ongoing epidemic here in the United States?

Thursday, September 27, 2018

Ryan White HIV/AIDS Program Funding Raided, Again

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

Over the summer the Trump Administration raided previously unspent Ryan White HIV/AIDS Program funding from Fiscal Years 2015-2016 to pay for its controversial "zero-tolerance" immigration policy. The ADAP Advocacy Association sounded the alarm not once, but actually two times over concern about the dangerous precedent established by transferring these funds. We warned if funding budgeted to provide supports and services to people living with HIV/AIDS could be diverted on one occasion, then what would prevent it from happening again? Unfortunately, our concerns were validated because more money is being taken away from these important programs to fund the immigration child detention centers on our southern borders.

Insert the phrase: "We were right!"

Hands off my healthcare
Photo Source:

The Trump Administration, rather than asking how we can ensure these funds are better spent as they were help meet the needs of the people living with HIV/AIDS more readily...has decided the epidemic is of less a public health concern than putting kids in cages.

We applaud AIDS United once again for leading the charge and holding the Trump Administration accountable for this thievery! We encourage you to read their recent action alerts in The Body:
Among other vital program funding being raided again, State AIDS Drug Assistance Programs ("ADAP") stand to lose $5.75 million in unspent funding from the current Fiscal Year. This isn't so-called "fake news" either. A letter to Congress from Alex M. Azar II, Secretary of the U.S. Department of Health & Human Services ("HHS"), spells it out in plain language.

Think about it; there was over $2.6 million taken from HIV prevention programs. Like we still don't have people at risk for contracting HIV, right?

Think about it; there was over $6.3 million taken from mental health and substance abuse programs. Like untreated mental illness isn't an ongoing issue, right? Or like there isn't an ongoing opioid epidemic, right?

Think about it; there was over one million dollars taken from viral hepatitis programs. Like we don't have an emerging Hepatitis C crisis, right?

The fact remains that the people living with HIV/AIDS who reply on ADAP — and who rely on other HIV-related programs being impacted by this move  are PISSED OFF! Let me repeat, they are PISSED OFF!

Whereas HIV-infection can now be characterized as a chronic illness, nearly 20,000 people annually receive an AIDS diagnosis.[1] And yes, people still die of AIDS in this country, including some who cannot access life-saving treatments. People living with HIV/AIDS are watching their brothers and sisters struggle to endure the challenges present with this illness, all while their government appears hell-bent on undermining the progress made under the previous four Presidents!

Mike Pence
Photo Source:|

Putting aside the inhumane nature of these immigration child detention centers (if that is even remotely possible, mind you), there is plenty of evidence available for people living with HIV/AIDS to be concerned over ongoing raiding of the funding from the Ryan White HIV/AIDS Program. The Trump Administration is infested with right wing, religious ideologues who frown upon people who are different from their WASP (White Anglo-Saxon Protestant) culture. Such evidence was on full display this week.

The sad reality is starring our HIV community squarely in the face. The Trump Administration doesn't care about people living with HIV/AIDS. There are simply too many examples to site, too. And far worse, there is no reasoning with the right-wing, religious ideologues who are pulling the strings behind the scenes. It's hard for our people to be tactful when their being punched in the face by bigots.

[1] U.S. Centers for Disease Control & Prevention (2018, August 6). HIV in the United States: At A Glance (AIDS Diagnoses). Retrieved from

Wednesday, September 19, 2018

HIV Stakeholder Surveys

By: A. Toni Young, Executive Director, Community Education Group

Community Education Group (CEG), a nonprofit located in Washington, DC  that is dedicated to ending HIV and related health disparities. CEG has a commitment to changing the way the world tackles public health in underserved communities. My colleague, Dr. Tyriesa Howard Howell, and I (A. Toni Young)  are conducting disseminating two surveys study to evaluate how nonprofit organizations around the world are preparing to ensure their sustainability. One participant from each survey who completes the survey in its entirety will be randomly selected to win a $200 gift card that will be electronically delivered by December 1, 2018.

  • Survey 1: Project Boundless

Throughout the 30+ years of the fight against HIV, medical advancements such as antiretroviral therapy (ARV) and pre-exposure prophylaxis (PrEP) have shifted the ways in which nonprofits (including CEG) have evolved in an effort to maintain the community's presence and engagement in HIV treatment and prevention. As a part of our evolution, community organizations have embraced our roles in Red Carpet linkage-to-care networks, transitioned from traditional behavior modification approaches by navigating community members to PrEP, and have expanded other areas in the services we provide. On the dawn of a new day in HIV service delivery, that being HIV cure research, we would like to learn more about your organization's preparation for the next phase of the fight.

The purpose of our study is to inform how to best establish a global dialogue among non-government and community organizations concerning the impact of biomedical HIV treatment and cure-related research. This research will also help us understand how finding an HIV cure may affect organizational sustainability.

Participants 18 years and older that are affiliated with nongovernmental, nonprofit and community-based organizations are being asked to participate.

Please complete our survey and share it with other colleagues on the frontlines of community-based HIV prevention and treatment.

This study was approved by the New England Review Board (Protocol No. 120180166).
  • Survey 2: The Equitable Access Survey

The Equitable Access Coalition (EAC) seeks to mobilize a diverse group of individuals and organizations reflecting persons of color living in rural communities in the South. We want to influence policy change and provide access to education affecting policy change at the state and county levels.

Our purpose is to:
1.   increase access to HIV prevention care and treatment with an emphasis on PrEP;
2.   increase access to HCV screening, education, and treatment; and
3.   increase access to family planning and health services for transgender men and transgender women.
4. identify local and state policy issues

We are interested in organizations located in the Southern United States:  including Washington, DC, Maryland, Virginia, West Virginia, Tennessee, Kentucky, Arkansas, North Carolina, South Carolina, Georgia, Alabama, Mississippi, New Orleans, Florida, and Texas.

Organizations and persons representing these key populations: people living with HIV and/or HCV, injection drug users, formerly incarcerated, harm reduction specialist, gender nonconforming individuals, transgender men, transgender women, same gender loving persons, persons with substance use disorders, heterosexual men, and heterosexual women.

Please complete our survey and share it with other colleagues.

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.

Thursday, September 13, 2018

3rd Annual National Monitoring Report on HIV/HCV Co-Infection

By: Marcus J. Hopkins, Consultant, Community Access National Network

The Community Access National Network (CANN) will be hosting its 3rd Annual National Monitoring Report on HIV/HCV Co-Infection on Wednesday, September 19th, beginning at 2:00 p.m. EST. This annual report provides valuable information on the state of Hepatitis C (HCV) treatment coverage, harm reduction measures to prevent transmission of HIV and HCV, and, new to this year, a brief focus on HIV and HCV testing and treatment for individuals currently incarcerated and post-incarceration.

Returning this year are yours truly (as the Project Director for the HIV/HCV Co-Infection Watch and Medicaid Watch), and Amanda Bowes, Manager on the National Alliance for State and Territorial AIDS Directors’ (NASTAD) Health Care Access Team. New presenters for 2018 include Ayesha Azam, Senior Director of Medical Affairs at the Patient Access Network (PAN) Foundation, and Jack Rollins, Senior Policy Analyst at the National Association of Medicaid Directors.

At last year’s National Monitoring Report, I focused on the increase in coverage options for both the Ryan White and Medicaid programs, showing how treatment options have expanded across the country since 2015 (when the HIV/HCV Co-Infection Watch began). Mrs. Bowes provided more detailed information available about coverage, as well as NASTAD’s efforts to expand coverage for Hepatitis C (HCV) Direct-Acting Antivirals (DAAs) within the nation’s AIDS Drug Assistance Programs (ADAPs).

This year’s event is sponsored by the ADAP Advocacy Association, Gilead Sciences, Merck, Quest Diagnostics, Walgreens, and the Pharmaceutical Research and Manufacturers of America (PhRMA).

The 3rdAnnual National Monitoring Report on HIV/HCV Co-Infection can be attended either in person at PhRMA Headquarters in Washington, DC, or remotely for non-DC residents. Registration is free and can be done online. While registration is free, there is limited seating for those attending in person and advanced registration is required to attend.

Learn more at

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.

Thursday, September 6, 2018

Older Adults with HIV: The Forgotten Majority

By: Tez Anderson, Founder & Executive Director, Let’s Kick ASS—AIDS Survivor Syndrome

Older Adults with HIV make up 60 percent of all people living with the virus in the United States. But the majority cohort continues to overlooked and ignored by HIV/AIDS care, services and community-based organizations, international and national AIDS conferences, and governmental bodies.

The median age of the people living with HIV in America is 58. Approximately 660,000 of the estimated 1.1 million women, men and transgender people living with the virus over age 50. A proportion that in 2020 will increase to 70 percent.

As HIV activists, we hear a lot about “key populations,” disparities” and “bridging the gaps.” The conversation usually revolves around gender, gender expression, race and poverty and the roles they play in people with HIV lives.

Current Care Policy Leaves Older Adults with HIV Behind

But the topic of Aging and HIV isn’t brought up. Why is it that the largest key population—Older Adults with HIV—is never included in these gaps? Why do older people with HIV receive the least attention, funding, and focus?

It would be easy to point the finger at discrimination based on age, or ageism. While that is undoubtedly part of the problem, there is more to it.

For one, HIV has all but disappeared from the mainstream headlines in the U.S. It was once a fatal disease and is now a “chronic manageable disease,” ignoring the fact that without daily medications it is still deadly. Most long-term survivors scoff at the idea that it is easily managed. HIV/AIDS is no longer on most people’s mind.

For another, the HIV care community and conferences have overoptimistically focused a cure (which remains elusive) and being “AIDS-Free” by some arbitrary date. It was once in 2020, and now it is 2030.

The people and agencies providing our care are more focused on the future while older adults are regarded as relics of a bygone era. Our lives are defined by mass causalities, enormous loss, caretaking, illness, and ensuing trauma. We hear little about the astounding resilience of the first generation of people with HIV/AIDS. We do not think of individuals living with this virus for 20 and 30-plus years are the pioneers of the AIDS epidemic. We are survivors of the worst epidemic in history. Alas, too often we are just thought of as old.

Examples of the indifference include the U.S. Centers for Disease Control & Prevention ("CDC") is aging data from 2013, old statics which vastly under-represents the present-day reality. September 18 is National HIV/AIDS and Aging Awareness Day. But the folks that originated the day have all but abandoned it. The website has not been updated years. If there’s a theme for 2018, I can’t find it.

This ongoing in indifference has an impact on the health and well-being of older adults. Lost in the apathy are the complexities and nuances of HIV and aging. What about our lives right now?

For instance, the differences in quality of life for long-term survivors and those older adults who have acquired HIV more recently. These facets matter.

Polypharmacy is a big word for the number of medications we take for “non–HIV comorbidities.” We appear to be aging at an accentuated rate too. Older adults with HIV are more likely to exhibit characteristics of people in their 60s, 70s or even 80s. In other words, 60 is the new 70 for those living with HIV for decades.

I often wonder if part of the problem is the aim established by the CDC and UNAIDS which states the “ultimate goal is achieving viral suppression.” They don’t have a vision for what happens next. What is beyond viral suppression for a population aging with HIV?

What about those living with HIV who are who’ve been undetectable for years. Then what? It seems to be the end of a conversation not the start of another dialogue about. How about we focus on what it will take to change the narrative to what it will take for healthy aging with HIV? How does that look? Isn’t that a worthier goal?

Aging is not on the agenda. It is time to change this. It will take us demanding it and not put up with invisibility. We are the ones that changed the face of healthcare advocacy for all diseases. Are we up for doing the something to envision an agenda for aging with HIV?

Some communities around the country are taking matters into their own hands and holding dedicated HIV and Aging Conferences. I’ve spoken at some of these conferences, and they are incredible. But are we not worthy of an “aging track” or the spotlight on the main stage at expensive AIDS conferences?

The thing I hear most from older adults and long-term survivors is they feel forgotten and invisible. If this is how we treat our aging population what’s the message we are sending to young people living with HIV?

It seems the focus is on “ushering in an AIDS-Free generation” and a concerted effort to End AIDS by, first it was 2020, now it is 2030. What does “ending AIDS” mean to those of us living with AIDS for decades? Most of us finishing it “after I’m dead.”

I know we can walk and chew gum at the same time. We can envision an AIDS-free generation and ensure that our health care system and services are empowering the first generation to live meaningful and healthier lives.

Learn more about Let’s Kick ASS—AIDS Survivor Syndrome online at

What is AIDS Survivor Syndrome? And why you need to know.

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.