Thursday, December 6, 2018

Transgender Reflection & Remembrance

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

The ADAP Advocacy Association would like to honor our transgender brothers and sisters by recognizing the tragic losses, as well as victorious gains affected populations experience throughout the year.

In light of the New York Time’s report the Trump administrations is seeking to create a unified, yet exceptionally limited definition of “sex” to the exclusion and limitations of civil right protections for transgender people, we’d like to recognize our industry partners who vocalized opposition to this move.

Transgender Awareness
Photo Source: Stopstreetharassment.org

In addition to ongoing work in policy and grants support the following actions were taken by key industry partners:
With the recent observance of the annual Transgender Day of Remembrance (November 20th), this year, in the United States, 22 documented transgender people were murdered and countless transgender lives lost to suicide. We take the time to honor the lives of our community’s losses and encourage our partners to join us and their local communities in recognizing these lives and the struggles transgender people face every day.
  • Christa Leigh Steele-Knudslien, 42, was the first known case of deadly violence against the transgender community in 2018. A local news outlet reports that she was found dead in her home on Friday night in North Adams, Massachusetts. She was a trans beauty pageant organizer. According to reports, Leigh Steele-Knudslien's husband, Mark, turned himself in Friday night, admitting to killing his wife. January 8, 2018.
  • Viccky Gutierrez, 33, is the second reported transgender person killed in the United States in 2018. She died after being stabbed and her apartment in Los Angeles was set on fire while she and her dog were trapped inside. Kevyn Ramirez, 29, of Los Angeles was charged with murder and arson after admitting to stabbing Gutierrez in her home after a dispute and then setting fire to the apartment January 12, 2018.
  • Tonya Harvey, 35, is the third known transgender person to be murdered in 2018. Harvey was shot to death shortly before 5:30 pm in Buffalo, New York.
  • Celine Walker, 36, was shot to death in Jacksonville, Florida on February 4, 2018. Sources claim that Walker's body was found with fatal gunshot wounds in an Extended Stay America hotel at about 8 p.m. and pronounced dead at the scene. Additionally, Walker's family and friends publicly shared their disgust toward Jacksonville Sheriff's Department and the Florida Sun Times-Union misgendering her
  • Phylicia Mitchell, 45, was shot in the chest around 6 p.m. outside her home on West 112th Street near Detroit Avenue, in the Cleveland's Edgewater neighborhood.
  • Zakaria Fry, 28, was found dead in the town of Stanley, New Mexico, on February 19, 2018. She went missing in New Mexico in mid-January, and her body was later found 40 miles outside of Albuquerque on February 19. Rancher Fidel Montoya found one body in a trash bin along the road, and another body was recovered about two miles away. Police confirmed them to be Fry and her roommate Eugene Ray on Tuesday, February 27, 2018.
  • Amia Tyrae Berryman, 28, suffered multiple fatal gunshot wounds outside of a motel in East Baton Rouge, Louisiana on March 26, 2018.
  • Sasha Wall, 29, is the eighth known transgender person to be murdered in 2018. Sasha was fatally shot on April 1 in Chesterfield County, South Carolina. Her body was found with multiple gunshot wounds and slumped over her car's steering wheel on Sunday, April 1, 2018.
  • Carla Patricia Flores-Pavon, 18, was strangled to death in her Dallas apartment May 9
  • Nino Fortson, 36, a transgender man fatally shot multiple times during an argument May 13 in Atlanta.
  • Antash'a English, 38, known to friends as Antash'a, died June 1, 2018 in Jacksonville, Florida
  • Gigi Pierce, 28, a transgender woman fatally shot dead in a hotel on the Southside of Jacksonville, Florida on June 24, 2018.
  • Diamond Stephens was 39 years old Black transgender woman who was shot to death on June 18 in Meridian, Mississippi.
  • Keisha Wells,was 54, died in a parking lot due to a gunshot wound to the abdomen on June 23 in Cleveland.
  • Sasha Garden was 27-year-old transgender woman, was found dead in Orlando on July 19
  • Dejanay Stanton was 24, was shot to death early in the morning of August 30 on the south side of Chicago
  • Vontashia Bell was 18, suffered a fatal gunshot wound August 30 in Shreveport, Louisiana
  • Shantee Tucker was 30, was shot to death September 5 on a Philadelphia street by someone firing from inside a pickup truck.
  • London Moore was 20, was found shot to death September 8 in North Port, Fl.
  • Nikki Enriquez was 28, of Laredo, Texas, was found dead near Interstate 35 in south Texas September 15.suspect is Juan David Ortiz.]
  • Ciara Minaj Carter Frazier age 31, of Chicago, Illinois, was found dead with stab wounds on October 3, in the West Garfield Park neighborhood.
The ADAP Advocacy Association remains committed to providing valuable resources to better serve and advocate for transgender people affected by HIV. Community & industry partners interested in learning more about implementing Transgender advocacy policy recommendations and action can contact us at info@adapadvocacyassociation.org.


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, November 29, 2018

Can The HIV Community Beat President Trump?

Guest Blog By: Josh Robbins, imstilljosh.com

Reprinted with Permission from Josh Robbins, imstilljosh.com

How to continue to survive Trump if you are living with HIV

Photo of President Trump with fire burning in the background
Photo Source: imstilljosh.com

The Trump Administration is weirdly disinterested in the HIV epidemic in the US. And that’s the biggest understatement that I have ever written. 

President Trump fired the remaining members of the Presidential HIV Council one year ago. The Office of National AIDS Policy has been empty since the beginning of his administration. (I called the day Trump was inaugurated to see if the office was still open and I left a voicemail. I have not received a return call. Shocker!?!?)

Money intended for funding the US fight against the epidemic at home and internationally has been chipped away and it appears that HHS is just trying to be quiet about it all—almost fly under the radar. Who can blame them? They are probably doing the best thing at the moment, honestly.

I inquired to HHS about PACHA (Presidential Advisory Council on HIV/AIDS) and the status of Kaye Hayes.

Here were my questions: 
  • Is Kaye Hayes still the executive director of PACHA?
  • How many members are currently on PACHA? Who are they?
  • What is the current status of PACHA?
  • When was the last time that PACHA provided guidance or input to the administration? Can I receive a copy of that?
  • When is the next planned meeting?
  • And if no members are currently on the council, is there any guidance being given to the current administration? If so, by whom?
Here’s the official response by the HHS spokesperson: 

“Kaye Hayes is still the executive director of Presidential Advisory Council on HIV/AIDS (PACHA), as well as Deputy Director of the HHS Office of HIV/AIDS and Infectious Disease Policy. In response to your other questions, we do not have any new information to share with you at this time, but we will contact you as soon as we do.”
Photo Soure: imstilljosh.com

I interpret this as no news. And silence. Not good!

This Is Not Going Well

When you think about the administration’s ‘less than friendly’ welcoming of immigrants and those seeking asylum in the U.S., or those visiting from other countries and remembering the nightmare Trump has put many through by changing travel rules and instituting immediate travel bans—it’s just so damn overwhelming. Honestly, I can’t even remember all the bad stuff.

Here’s the real tea about it: It’s only been two years! Can we all make it two more years?

YES! Yes, we can. And we will.

When Trump became President, I wrote about the best ways for us all to survive. Other popular websites in the HIV space called it the Trump-apocalypse.


So, how we continue to survive this administration?
  1. We are not the victims. We are must never view our advocacy as such. We are strong, healthy, and marginalized. But we will survive!
  2. We must engage the administration at every opportunity—not just complain. We were caught off our game when he was elected. We better prepare better for the 2020 election. 
  3. We must have a message of hope, based in science and demonstrate what we are advocating for—to live well. #UequalsU
  4. We still need to support national ASOs and organizations like ADAP Advocacy Association. 
  5. We need some of our leadership to change. We must identify new leadership to be our community voices. And we must stop allowing a small caucus to say they speak for us when they have missed the boat largely with U=U. 
  6. We must lean on each other when we need it. Sean McKenna calls it a buddy program. Get a buddy!!! 
  7. We must recognize disparities and work together to end them… and we must make room at the table for others who have been silenced or ignored. But we must not allow this to drive wedges within our community. We need to work together as one unit! 
  8. We need to ask for personal help when we need it. We are advocates and many are long term survivors. But we must allow our pride to disappear when we need help.
It has been a hell of two years, but it’s been a hell of an epidemic and we are going to make it!

I love you all!

Let’s do this!!!

[Check out the original blog post by Josh Robbins online at imstilljosh.com]



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, November 8, 2018

Three Red States Expand Medicaid – What That Means for ADAP

Guest Blog By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

The 2018 midterm election was remarkable in several ways: over 47% of registered voters participated in this election – the highest turnout since 1966 which saw 49% (Domonoske, 2018); the Democratic Party regained control of the House for the first time since 2011; a record number of women won seats in the House (Watkins, 2018); two women became the first Native American women elected to Congress (Watkins); two other women became the first Muslim women elected to Congress (Watkins); Jared Polis became the first openly gay man to be elected governor of a state in Colorado. But something else historic happened, as well – Idaho, Nebraska, and Utah joined Maine in begin the only states to expand Medicaid under the Affordable Care Act (ACA) via a ballot initiative (Pramuk, 2018). And these states are pretty deeply Red.

Governor Paul LePage
Photo Source: Political Dig

For those unfamiliar with Maine’s Medicaid debacle, here is a quick rundown: Maine votes adopted a Medicaid expansion via a ballot initiative in November 2017 which required the submission of a state plan amendment within 90 days and implementation within 180 of the measure’s effective date (which would have been April 03, 2018). Maine’s famously cantankerous and curmudgeonly outgoing Governor Paul LePage (see pictured above) – who vehemently opposed expanding Medicaid – failed to meet that deadline, illegally ignoring the will of the voters – he famously stated he would go to jail before allowing Maine to expand Medicaid (Miller, 2018), and took the issue to court where he has been repeatedly smacked down by judges who insist that he comply with the law and implement the expansion. Governor-Elect Janet Mills – who campaigned on following the law and authorizing the Medicaid expansion and was elected in the 2018 midterm elections – appeared in court on Wednesday, November 07, to listen to arguments in an advocacy group’s case against the Maine Department of Health and Human Services (Bleiberg, 2018).

What is troublesome about the myriad refusals of LePage to abide by the law is that it may have just been a prelude to how Republican governors in these Conservative states may attempt to thwart the will of the voters in Idaho, Nebraska, and Utah. To be fair, two of these governors has in some capacity stated they will abide by the will of the voters: Governor-Elect Brad Little (Idaho) has stated that he will implement the initiative (Guilhem, 2018); Governor Pete Ricketts – just elected for a second term – though a vocal opponent of the measure, has previously stated that if expansion made it onto the ballot, it would be up to the voters (Quinn, 2018). Governor Gary Herbert of Utah vocally opposed Utah Proposition 3, which not only orders the expansion of Medicaid, but implements a prohibition against any changes that would reduce coverage, benefits, or payment rates below policies in place on January 01, 2017.

While these responses are not full-throated endorsements of expansion, they are likely the best we can expect from members of a political party that has vehemently opposed the expansion of Medicaid at almost every turn. The problem with their opposition, however, is that Medicaid expansion – and, in fact, Universal Healthcare in general – are highly popular; even amongst Republican voters, support for Universal/Single-Payer/Medicare-For-All healthcare provided by the government is growing steadily as healthcare costs continue to rise well above the rates of inflation and wage growth.

So, what does Medicaid Expansion mean for the AIDS Drug Assistance Program? Well, a few things:

What we have seen in states that implemented Medicaid Expansion under the ACA is that a significant percentage of ADAP/Ryan White recipients have been shifted off of the Ryan White Program and over to Medicaid. This has had various impacts, both positive and negative, for those who have traditionally relied upon Ryan White and ADAP for payment and coverage of the HIV treatment and medications. Depending upon the way the patient’s state implements Medicaid, they may now be required to pay premiums, deductibles, and/or co-pays for doctor visits and medications that were previously covered by Ryan White and ADAP. That said, Ryan White funds canbe used to cover those costs (HIV/AIDS Bureau, 2014).

Patients living in states that have not expanded Medicaid often have to wait for an AIDS diagnosis in order to qualify for Medicaid coverage, even if they meet the income threshold. Additionally, certain states may also require that patients’ Viral Load or CD4 T-Cell numbers meet a specific threshold, as well, meaning that, if a patient’s Viral Load falls below or CD4 T-Cell count rises above the designated threshold for approval, they may lose their eligibility for coverage. This was my case in West Virginia before the state expanded Medicaid. Expanding Medicaid means that people living with HIV no longer have to wait for an AIDS diagnosis in order to qualify for Medicaid coverage (so long as their income is below the threshold).

The shifting of these patients off of Ryan White ADAP budgets has resulted in lower expenditures on drugs and other HIV treatment costs, which allowed the Ryan White Program to begin providing payment for private health insurance for all Ryan White clients using Ryan White funds through insurance assistance. Only three states do not provide this service – Texas, Idaho, and Mississippi. With the expansion of Medicaid in Idaho, this may allow the program the resources to begin doing so.

In order to shift clients off of Ryan White and onto Medicaid, a client’s income must fall within the specified percentage of the Federal Poverty Level (FPL) respective to each state’s guidelines. In most expansion states, that threshold is 138% of the FPL ($16,753.20 per year for an individual). This percentage for eligibility for Ryan White ranges from 200% (Idaho, Iowa, and Texas) to 550% (South Carolina), which is much more forgiving than the Medicaid requirements.

An additional issue can arise with patients who have been shifted onto Medicaid, as well. While the Ryan White Program was designed solely to focus on the needs of people living with HIV, Medicaid – which is the largest payor for HIV services in the United States – was not designed specifically with the needs of HIV patients in mind. There may be something of a barrier to care and treatment that exists when patients who are used to dealing with Ryan White staff who are familiar with the social, psychological, and medical needs of HIV patients are suddenly expected to communication with Medicaid employees who may not be sensitive to or accommodating of the unique needs of people living with HIV. While it may seem small, that simple communication barrier can lead to lower adherence to medication regimens, missed appointments, and falling out of the continuum of care. The National Alliance of State and Territorial AIDS Directors (NASTAD) holds numerous Technical Assistance conferences and meetings throughout each year where Medicaid directors and staff can attend various workshops and plenary sessions that teach them better ways to approach people living with HIV and to increase cultural competence when dealing with this population.

In general, Medicaid expansion has been a boon for the Ryan White and ADAP Programs. Hopefully, the transition to expanded Medicaid coverage in Idaho, Nebraska, and Utah will be smooth, and people living with HIV will gain access to more options to treat their disease and lead happier, healthier lives.

References:


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, November 1, 2018

HIV Patients Co-Infected With HCV Face Higher Mortality Rates

Guest Blog By: Marcus J. Hopkins, Consultant, Community Access National Network (CANN)

Reprinted with Permission from the Community Access National Network

A ten-year follow-up study has found that people living with HIV who are co-infected with Hepatitis C (HCV) face an increased risk of mortality by 4.3%, even when receiving treatment for HIV (Bender, 2018). The same study found that treatment with HCV Direct-Acting Antivirals (DAAs) resulted in a lower risk of mortality than those whose HCV went untreated, but that the harm caused by HCV still resulted in increased risk.

'Sensational' Hep C Response Rates in HIV Coinfection Trial
Photo Source: medscape.com

One of the primary consequences of untreated HCV infections is damage to the liver – damage that is no immediately repair itself once the virus is successfully treated. Liver fibrosis – scarring of the liver that prevents the organ from properly functioning – is not healed by HCV treatment, and depending upon the severity of the scarring, the liver may never completely regenerate. Those whose livers are cirrhotic – those with late-stage liver scarring – will likely never fully recover optimum liver function and may become dependent upon other prescription medications and dietary restrictions to aid in liver functions such detoxifying substances in the body, purifying blood, and making vital nutrients (Welch, 2017).

This issue is one that receives far less attention than it deserves and is part of why there is so much opposition against including Fibrosis Scoring in treatment determinations. While it may seem financially prudent in the short-term to limit treatment of HCV to those who are “sick enough” to be treated, the long-term negative health impacts of liver scarring are far costlier in the long-term. For those living with HIV, liver function is of critical concern as that is where most HIV medications are metabolized. If liver function is impaired, the drugs may not properly metabolize, making the treatment of HIV less effective.

References:


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, October 26, 2018

BIO's 2018 Patient & Health Advocacy Summit

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

The ADAP Advocacy Association has long prided itself on building advocacy partnerships, and thus it is fitting that our organization's leadership — including board members Wanda Brendle-Moss and Jen Laws, as well as myself — was invited to attend the Biotechnology Innovation Organization's (BIO) 2018 Patient & Health Advocacy Summit in Washington, DC. What makes the annual event useful is it assembles the advocacy community, industry partners, regulators, academia, students, and of course, patients.

Susan Stein, MPH, who serves as CEO of the E4 Health Group, shared a simple, yet powerful characterization: "Partnerships between patient advocacy organizations and industry are more important than ever."

Hello Name Badge
Photo Source: FierceAdvocate

The BIO 2018 Patient & Health Advocacy Summit brought together over 200 key stakeholders for two days of programming to discuss current policy issues, share best practices, and exchange ideas. Nearly two-thirds of the attendees represented the patient advocacy community. The BIO Summit also provided an invaluable opportunity to advance partnership among stakeholders in the healthcare ecosystem. Whereas the ADAP Advocacy Association's participation represented HIV/AIDS, there were many other disease groups in attendance, such as Psoriasis, Arthritis, Muscular Dystrophy, Metachromatic Leukodystrophy, and many more.

The BIO Summit immediately addressed the 800 pound gorilla in the healthcare ecosystem with an important pre-summit workshop on best practices for engaging with industry. As the patient perspective plays a more central role in the drug development process, it is recognized that clearer conflict-of-interest policies and best practices would better serve all stakeholders. The patient voice has moved beyond simply participating in clinical trials, and as a result industry and regulators are engaging patients earlier in the process. The 21st Century Cures Act includes a commitment to patient-focused drug development ("PFDD"). It amends the Federal Food, Drug, and Cosmetic Act to require the Food & Drug Administration to establish processes under which patient experience data may be considered in the risk-benefit assessment of a new drug.

HHS Secrertary Alex Azar

The timing of the BIO Summit couldn't have been planned any better with the Trump Administration's latest announcement under its blueprint for prescription drug reform. The latest proposal would set up an international pricing index in an effort to drive down prescription drug costs under Medicare Part B, which in turn, could also drive down patient out-of-pocket costs. The U.S. Department of Health & Human Services ("HHS") Secretary Alex Azar discussed the "pro patient access proposal" at the BIO Summit, only hours after it was announced.

HHS's decision to announce an Advance Notice of Proposed Rulemaking ("ANPRM") translates into the patient advocacy community having ample time to weigh-in on it. It could very well be the case that the public comment period represents one of the times where the patient advocacy community and industry view things differently, but that is a good thing.

For a policy brief on the ANPRM, please visit: https://www.hhs.gov/about/leadership/secretary/priorities/drug-prices/ipi-policy-brief/index.html.

For a fact sheet on the ANRPM, please visit: https://www.cms.gov/newsroom/fact-sheets/anprm-international-pricing-index-model-medicare-part-b-drugs.

Comments on the ANPRM will be accepted until December 31, 2018 and may be submitted electronically through the CMS e-Regulation website at: https://www.cms.gov/Regulations-and-Guidance/Regulations-and-Policies/eRulemaking/index.html?redirect=/eRulemaking.

The ANPRM can be downloaded at: https://www.cms.gov/sites/drupal/files/2018-10/10-25-2018%20CMS-5528-ANPRM.PDF.

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 info@adapadvocacyassociation.org


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 https://adapadvocacyassociation.blogspot.com/2018/07/linkages-to-care-during-post.html. 
[2] Boerner, Heather (2018, October 9). After Prison, Many People Living With HIV Go Without Treatment. National Public Radion. Retrieved from https://www.npr.org/sections/health-shots/2018/10/09/655890525/after-prison-many-people-living-with-hiv-go-without-treatment?utm_campaign=storyshare&utm_source=twitter.com&utm_medium=social.
[3] National Alliance of State & Territorial AIDS Directors (2018). National Ryan White HIV/AIDS Program Part B & ADAP Monitoring Project Annual Report. Retrieved from: https://www.nastad.org/sites/default/files/Uploads/2018/2018-national-rwhap-partb-adap-monitoring-project-annual-report.pdf