Thursday, September 29, 2016

Magnifying How ADAP Provides Treatment For People Living With HIV/AIDS

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

On September 23rd and 24th, "Magnifying How ADAP Provides Treatment For People Living With HIV/AIDS" took center stage at the ADAP Advocacy Association's 9th Annual ADAP Conference in Washington, DC.  The conference convened numerous ADAP stakeholder groups — including patients, service providers, health departments, pharmacies, pharmaceutical companies, and advocacy organizations — to discuss the current and emerging public policy issues confronting the AIDS Drug Assistance Program (ADAP), as well as exchange ideas and develop strategies for effective patient self-advocacy.

The conference kicked off with some exciting news about the organization's flagship program; the ADAP Directory. The ADAP Directory — which was launched in 2014 — takes an innovative approach to linking people living with HIV-infection to the information, resources, medical care, and treatment options. Now, it offers an interactive feature called the ADAP Eligibility Calculator powered by PillPack.

The opening keynote was delivered by Dr. Mike Magee, President of Positive Medicine, who is a longtime friend of the ADAP Advocacy Association (Editor's Note: It was 2007, when Dr. Magee delivered the opening keynote at the organization's first annual conference). His remarks, "Blending Positive Leadership and Advocacy: A Case for Advanced Professionalism," drew heavily from a book published by his son, Michael,  some years earlier, entitled “Emancipating Pragmatism: emerson, jazz, and experimental writing.” Dr. Magee's keynote conveyed several key points. Among them are positive leadership, and islands of common stewardship. To read Dr. Magee's recap of his experience in his blog post at Health Commentary, CLICK HERE.

Tweet to mike magee

The conference offered up seven panel discussions, each playing an important role in magnifying how ADAP provides treatment for people living with HIV/AIDS. The conference leveraged an Oprah-style format designed to promote a “conversation” rather than a traditional presentation-type session; therefore, the panelists were encouraged to speak from the heart rather than using scripted remarks/presentations.

The conference panels included:

  • HIV & Aging: Building a Focus on Healthy Aging for Older Adults Living With HIV/AIDS
  • Affordable Care Act: AIDS Drug Assistance Programs & Qualified Health Plans
  • Affordable Care Act: Marketplace Cost Sharing & Barriers to Healthcare
  • Linkages to Care: Social Workers & HIV Community Resources
  • Linkages to Care: 340B Program & HIV Continuum of Care
  • HIV & Marginalized Communities: Delivering Culturally Competent Care
  • Co-Infection: Integrating HCV Services into HIV Prevention/Care Settings
The conference attendees were provided an abundance of supporting materials, which can be downloaded online here. By the time the conference had concluded there were numerous take-aways that will be orchestrated by the ADAP Advocacy Association over the coming weeks and months.

Thank you to all who supported the conference, presented at it, and most importantly, attended it!

ADAP Advocacy Association 9th Annual Conference







Friday, September 16, 2016

Annual National Monitoring Report on HIV/HCV Co-Infection

By: Marcus J. Hopkins, Project Director, HIV/HCV Co-Infection Watch, Community Access National Network (CANN)

The ADAP Advocacy Association is sponsoring an important community roundtable on September 22nd in Washington, DC, hosted by the Community Access National Network (CANN). The pressing issue at hand: HIV/HCV Co-Infection. The First Annual National Monitoring Report on HIV/HCV Co-Infection will present findings on the state of human immunodeficiency virus (HIV) and hepatitis C (HCV) co-infection in the United States, including a summary of the HIV/HCV Co-Infection Watch, as well as the HealthHIV/HealthHCV recently published report, State of HCV Care National Survey.

The event will be held at the Pharmaceutical Research and Manufacturers of America (PhRMA) Headquarters, located at 950 F St., NW Suite 300, Washington, DC 20004. It will be held from 3:00 PM – 5:00 PM (EST). Gilead, Merck and Walgreens are also sponsoring this event, along with PhRMA.

While both HIV and HCV are significant health issues on their own, co-infection poses a serious threat to persons living with HIV. Treating HCV in conjunction with HIV can be difficult, as many of the most popular HIV combination therapies (such as Stribild) may have serious drug interactions with some of the components of newer Direct Acting Agents (DAAs) currently available to cure HCV.

Recent spikes in HCV infections related to Injection Drug Use (IDU) have led physicians in affected areas to screen also for HIV. Perhaps the most well-publicized case involved an outbreak in Scott County, Indiana, was caught due to a sharp increase in HCV infections amongst IDUs. The outbreak also led the state’s conservative legislature to approve emergency Harm Reduction measures – namely Syringe Exchanges – in counties designated as having public health emergencies. The sixth such emergency Syringe Exchange will be opening in Clark County, this fall. Clark County, which neighbors Scott County, has seen a 63% increase in fatal drug overdoses since 2013, with 49 confirmed fatal overdoses, and another 20 pending since the beginning of the year (Maher, 2016).

The HIV/HCVCo-Infection Watch released its inaugural Report in January 2015, originally focusing only on HCV drug coverage in AIDS Drug Assistance Programs (ADAPs) and Medicaid programs. Now, nearing the end of its second year in publication, the Watch has expanded to include coverage information for the Veteran’s Affairs (VA), Harm Reduction measures (including Syringe Exchanges) to prevent the spread of infection, and regional trends, which focus on issues of drug coverage, co-infection, and legislative efforts to combat the spread of HCV. Each Report also contains the latest news in HCV science, opioid/heroin addiction, pharmaceutical updates, and HIV/HCV-related news.

HIV/HCV Co-Infection Watch

 HealthHIV’s report on the State of Hepatitis C Care National Survey was released in February 2016, and presents the findings gathered during the survey process. The inaugural survey, conducted in 2015 in conjunction with Medscape, LLC., collected data on both providers and the patient populations they serve, and made policy recommendations and observations related to increasing access to HCV care both outside and within the HIV care continuum.

HealthHCV HCV Care Survey

 While the National Monitoring Report on HIV/HCV Co-Infection event is free to attend, seating is limited. Advanced registration is required, which can be done at the following web address: https://www.123signup.com/event?id=njrck.

________

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 1, 2016

Californication and the Battle Over Drug Pricing

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

POLITICO reported this week that California's controversial Prop 61, entitled the "California Drug Price Relief Act," is likely to get the green light from voters at the ballot box this November, according to a recent poll. Nearly three quarters (73%) of those polled indicated that they support Prop 61, compared to only 13% who are opposed to it -- with approximately 14% of the survey's respondents remain undecided. The ballot initiative appears to have the strongest support among registered Democrats (77%), but also 70% of registered Republicans and 68% of unaffiliated voters.[1]

Ballot with "Yes" marked
Photo Source: Moyers & Company

According to Californians for Lower Drug Prices, which is supporting the ballot initiative, (verbatim language from the Yes on Prop 61, Californians for Lower Drug Prices, with major funding by AIDS Healthcare Foundation and California Nurses Association PAC) "The Drug Price Relief Act would require the state of California to negotiate with drug companies for drug prices that are no more than is paid for the same drugs by the U.S. Department of Veterans Affairs (DVA).  Unlike Medicare, the VA negotiates for drug prices on behalf of the nearly 22 million veterans it serves, and pays on average 20-24 percent less for medications than other government agencies, and up to 40 percent less than Medicare Part D.  The Drug Price Relief Act empowers the state, as the healthcare buyer for millions of Californians, to negotiate the same or an even better deal for taxpayers, saving the state billions."[2]

The poll was conducted by Tulchin Research, among 800 likely voters conducted from July 21-24, 2016. According to a Tulchin Research memorandum obtained by the ADAP Advocacy Association:

"The survey finds that nearly three-quarters of voters would vote yes in support of Proposition 61 (73% yes with leaners, 66% without leaners) when presented the measure’s title and summary, including four out of 10 (41%) who say they would definitely vote yes, while just 13% of voters would oppose the measure (12% without leaners) and 14 percent are currently undecided."[3]

Prop 61 has been endorsed by a long list of organizations -- including the AIDS Healthcare Foundation (AHF) and the American Association of Retired Persons (AARP) – California Chapter. To view endorsements, go to http://www.yeson61.com/endorsements/.

But not everyone is behind the ballot initiative. Aside from groups expected to oppose such a measure -- such as the Pharmaceutical Research and Manufacturers of America (PhRMA) -- it is being opposed by some other heavy hitters. Among them; the Veterans of Foreign Wars, the California NAACP, and the California Medical Association. To view opponents to Prop 61, go to http://www.noprop61.com/who.

Interestingly enough, some national and state HIV/AIDS organizations are opposing the ballot initiative; and other organizations -- such as Project Inform and the San Francisco AIDS Foundation -- are staying on the sidelines. The chief complaint against it is...it won't actually save the state any money. In fact, "highly uncertain" is how the California Legislative Analyst’s Office characterized the impact of the ballot initiative, should it pass in November.[4]

The state's analysis found, "Even if the initiative were to result in cost savings to the state, it is unclear whether or not lower prices would be realized for consumers. The initiative does not include any provisions that would lower the cost of prescription drugs for consumers who are increasingly having difficulty accessing treatment, both because employers and insurers are passing on more of the cost to employees and consumers, and because more restrictions to access are being placed on higher-cost drugs."[5]

Summarized Eddie Hamilton, with the ADAP Educational Initiative, "The current convulsed, inconsistent system across the country compounded with the widespread conflicts of interest is hurting access more than any state Proposition could ever do. That is what had created the breeding ground for that ballot initiative."

And for now, voters in California are moving in the direction of the "Yes" forces during this contentious battle in the Golden State! Stay tuned...

___________
[1] POLITICO, "New poll shows strong support for landmark drug pricing ballot measure,"  August 2, 2016; available online at http://www.politico.com/states/california/story/2016/08/new-ca-poll-shows-strong-support-for-landmark-drug-pricing-ballot-measure-104415#ixzz4IqofRI5q
[2] Yes on Prop 61, Californians for Lower Drug Prices, "Californians for Lower Drug Prices Launches TV Ad Campaign," June 7, 2016; available online at http://www.aidshealth.org/#/archives/27268.
[3] Tulchin Research, "California Statewide Survey Shows Strong Support for Proposition 61, the Ballot Measure to Lower Prices on Prescription Drugs," July 28, 2016.
[4] Hemmelgarn, Seth, The Bay Area Reporter, "Prop 61 targets drug prices," August 25, 2016; available online at http://www.ebar.com/news/article.php?sec=news&article=71839
[45 Hemmelgarn, Seth, The Bay Area Reporter, "Prop 61 targets drug prices," August 25, 2016; available online at http://www.ebar.com/news/article.php?sec=news&article=71839

Thursday, August 25, 2016

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:
1 cent to 10 cents per member per month covers the cost of the treatment for lipodystrophy
  • 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.

________

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, August 18, 2016

Love yourself…Live Well Beyond HIV

By: Wanda Brendle-Moss

Well Beyond HIV participant and ADAP Advocacy Association board member, Wanda Brendle-Moss, shared her incredible story of surviving and thriving after an HIV diagnosis with Sixty and Me. Read more about her journey and the importance of never giving up on yourself here: http://sixtyandme.com/being-wanda-one-womans-story-of-surviving-and-thriving-after-an-hiv-diagnosis/.

Wanda Brendle-Moss
Photo credit: Gianna Haley
________

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, August 11, 2016

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


________

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.

Friday, August 5, 2016

Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program (ADAP)

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

The ADAP Advocacy Association announced earlier this week that it has launched a new project to improve access to care and treatment for transgender men and women living with HIV/AIDS. The project – “Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program (ADAP)” – aims to raise awareness about issues confronting transgender men and women living with HIV/AIDS who also access care and treatment (or whom could benefit from such care and treatment) under ADAP, as well as provide useful resources and tools to the communities serving them.

According to the Centers for Disease Control & Prevention (CDC), transgender communities in the United States are among the groups at highest risk for HIV infection.[1] The CDC reports the following key demographic data:[2]

  • Highest percentage of newly identified HIV-positive test results was among transgender people (2.1%), compared to HIV-positive test results among males (1.2%), and by females (0.4%);
  • Among transgender people in 2010, the highest percentages of newly identified HIV-positive test results were among racial and ethnic minorities:
    • Blacks/African Americans comprised 4.1% of newly identified HIV-positive test results;
    • Latinos comprised 3.0%;
    • American Indians/Alaska Natives and Native Hawaiians/Other Pacific Islanders (both 2.0%);
  • 73% of the transgender women who tested HIV-positive were unaware of their status; and
  • HIV prevalence for transgender women was nearly 50 times as high as for other adults of reproductive age.

Among male-to-female and female-to-male transgender persons, there exists a high prevalence of clinical depression (44.1%), anxiety (33.2%), and somatization (27.5%).[3]  The Department of Family Medicine and Community Health, Medical School, University of Minnesota concluded that the minority stress model necessitated education to “…confront social structures, norms, and attitudes that produce minority stress for gender-variant people; enhance peer support; and improve access to mental health and social services that affirm transgender identity and promote resilience.”[4]

Furthermore, transgender persons experience numerous healthcare-related disparities. The extent of this barrier to health care is unknown, since “U.S. health surveillance systems infrequently include measures to identify transgender respondents or monitor the health of this underserved and marginalized population.”[5]

A cross-sectional, clinic-based sample in Massachusetts between 2001-2002 yielded some interesting findings between transgender and non-transgender adults. Among them:[6]

  1. the prevalence of HIV, substance abuse, and smoking did not differ significantly for transgender and non-transgender patients; 
  2. transgender patients were more likely to endorse a lifetime suicide attempt and ideation compared to non-transgender patients (p<0.05);
  3. transgender patients disproportionately reported social stressors (violence, discrimination, childhood abuse) relative to non-transgender patients (p<0.05).

Despite spotty data, agreement exists on the following:[7]

  • Studies reveal high HIV prevalence rates among transgender women in the United States.
  • Black/African American transgender women are more likely to have HIV than transgender women of other races/ethnicities.
  • Many social and structural factors pose challenges to preventing HIV among transgender people.

The CDC concluded, “Insensitivity to transgender identity can be a barrier for those who are diagnosed with HIV and seek quality treatment and care services. Research shows transgender women with diagnosed HIV infection are less likely to be on antiretroviral therapy (ART) or achieve viral suppression. Furthermore, few health care providers receive adequate training or are knowledgeable about transgender health issues and their unique needs.”[8]

There is no concrete data on the number of male-to-female and female-to-male transgender persons, nor gender-nonconforming persons living with HIV-infection accessing services under ADAP. That said, extrapolating data from the National ADAP Monitoring Project measured against CDC data suggests there is a need for gender-variant, culturally competent awareness and guidelines designed to better serve this underserved community enrolled in ADAP (as well as those persons eligible, but not enrolled).


Whereas excellent resources exist to promote transgender HIV testing, [11] as well as available programs, faith communities, and healthcare services, [12] presently nothing exists specific to ADAP serving the transgender community. There exists a need to raise awareness among key stakeholders – among them, ADAP Directors, community service providers, and state/local advocacy organizations – about existing and emerging issues confronting the transgender community. Furthermore, there is a need to model existing best practices[13] to ADAP across the 50 states and territories in the United States.

“It is important to focus on discussing and identifying competency measures that would aid in providing solid data collection in this area – especially with respect to the number of transgender individuals accessing services under ADAP – as well as expanding access for same by way of competency,” summarized Jen Laws, an independent policy consultant specializing in various aspects of healthcare policy and focusing on the needs of the HIV affected and transgender communities. “The ADAP Advocacy is committed to improved cultural competency for the transgender community in healthcare, in general, and what that means for the population accessing ADAP, specifically.”

The purpose of the project – “Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program” – is to raise awareness about issues confronting the transgender community accessing care and treatment under the AIDS Drug Assistance Program, as well as provide useful resources and tools to the communities serving them. 

To that end, key elements of the project include:

  1. Infographic on Ryan White/ADAPs & Serving Transgender Community;
  2. Community Forum on Transgender Health & Provider Friendly Care;
  3. Educational Webinar on Ryan White/ADAPs & Transgender Health;
  4. White Paper on Model Policy for Ryan White/ADAPs Serving Transgender Clients; and
  5. Twitter Chat on Ryan White/ADAPs & Transgender Health.


To learn more about the ADAP Advocacy Association's Transgender Health Project, please email info@adapadvocacyassociation.org

__________
[1] Centers for Disease Control & Prevention, “HIV Infection among Transgender People,” August 2011; last viewed online at http://www.cdc.gov/hiv/transgender/pdf/transgender.pdf. 
[2] Centers for Disease Control & Prevention, “HIV Among Transgender People,” December 17, 2015; last viewed online at http://www.cdc.gov/hiv/group/gender/transgender/index.html. 
[3] American Journal of Public Health, “Stigma, mental health, and resilience in an online sample of the US transgender population,” May 2013; last viewed online at http://www.ncbi.nlm.nih.gov/pubmed/23488522. 
[4]  Sari L. Reisner, MA, ScD, et al, LGBT Health, “Transgender Health Disparities: Comparing Full Cohort and Nested Matched-Pair Study Designs in a Community Health Center,” April 10, 2014; last viewed online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4219512/. 
[5] Sari L. Reisner, MA, ScD, et al, LGBT Health, “Transgender Health Disparities: Comparing Full Cohort and Nested Matched-Pair Study Designs in a Community Health Center,” April 10, 2014; last viewed online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4219512/.
[6] U.S. Centers for Disease Control and Prevention, “HIV Among Transgender People,” Apri 18, 2016; last viewed online at http://www.thebody.com/content/63509/hiv-among-transgender-people.html?ap=1200. 
[7] U.S. Centers for Disease Control and Prevention, “HIV Among Transgender People,” Apri 18, 2016; last viewed online at http://www.thebody.com/content/63509/hiv-among-transgender-people.html?ap=1200.
[8] American Journal of Public Health, “Stigma, mental health, and resilience in an online sample of the US transgender population,” May 2013; last viewed online at http://www.ncbi.nlm.nih.gov/pubmed/23488522.
[9] National Alliance of State and Territorial AIDS Directors (NASTAD), “National ADAP Monitoring Project: 2016 Annual Report,” page 16, February 1, 2016.
[10] National Alliance of State and Territorial AIDS Directors (NASTAD), “National ADAP Monitoring Project: 2016 Annual Report,” page 17, February 1, 2016.
[11] The Center of Excellence for Transgender Health, University of California, San Francisco, “Transgender HIV Testing Toolkit,” April 11, 2016; last viewed online at http://transhealth.ucsf.edu/trans?page=ev-nthtd-2016. 
[12] Transcending Transgender Program and the Alameda County Office of AIDS Administration, “Transgender Resource Guide,” 2016; last viewed online at http://www.acphd.org/media/269820/transgender_resource_guide.pdf. 
[13] JoAnne Keatley, MSW, YMSM+LGBT Center of Excellence, “Transgender People - Exploring Diversity and Health Service Needs,” August 28, 2015; last viewed online at https://vimeo.com/141821792.