HIV/AIDS Fireside Chat Retreat in Boston Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Boston, Massachusetts among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS and/or viral hepatitis. The Fireside Chat took place on Thursday, November 8th, and Friday, November 9th, and it built on the previous retreat held in Tampa, Florida earlier in the year.

Photo Source: Getty Images

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

• HIV & Aging
• Drug Importation
• Ryan White Program Reauthorization

Each of the white board discussions was facilitated by a recognized content expert followed by an in-depth dialogue among the retreat attendees. The discussions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat.

The following represents the attendees:

• Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome)
• William E. Arnold, President & CEO of the Community Access National Network (CANN)
• Marcus Benoit, Ryan White Regional Liaison & Eligibility Coordinator, Houston Regional HIV/AIDS Resource Group, Inc.
• Brandon Cash, Theratechnologies
• Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center
• Tishna Dhaliwal, Director, Healthcare Policy & Strategy, Johnson & Johnson
• Edward Hamilton, Executive Director & Founder of ADAP Educational Initiative
• Hilary Hansen, Executive Director, Advocacy & Strategic Alliances (US) at Merck
• Stephen R. Hourahan, Executive Director, AIDS Project Rhode Island (APRI)
• Lisa Johnson-Lett, Treatment Adherence Specialist / Peer Educator, AIDS Alabama
• Brandon M. Macsata, CEO of the ADAP Advocacy Association
• Julie Marston, Executive Director, Community Research Initiative (CRI)
• Tim Miley, Associate Director, State Government Affairs – Northeast, Gilead Sciences
• Theresa Nowlin, advocate
• David Pable, Community Co-Chair SC HIV Planning Council
• Samantha Picking, PharmD, RPh, AAHIVP, Healthcare Specialty Supervisor, Walgreens
• David Reznik, Chief, Dental Medicine, Grady Health System Infectious Disease Program
• Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
• Shabbir Imber Safdar, Executive Director, The Partnership for Safe Medicines
• Carl Sciortino, VP of Government & Community Relations, Fenway Health

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

HIV & Aging:

The discussion on HIV & Aging was facilitated by Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome) based in San Francisco, CA. Anderson has coined the phrase, AIDS Survivor Syndrome, to address the litany of issues facing HIV/AIDS long-term survivors. Adults over 50 make up the majority of people living with HIV/AIDS in the United States. By 2020, it will increase to 70%. According to Anderson, "Aging populations present challenges to the healthcare system, and providers are ill-prepared for an aging population. We are going to have be creative in devising new strategies for providing integrated HIV and geriatric care, and for meeting the long‐term needs of clients with increasingly complex needs."

Since aging with HIV is not a monolithic, retreat attendees dived into accentuated aging, living with co-morbidities, HIV-related enteropathy and/or peripheral neuropathy, as well as other issues affecting quality of life for the aging HIV population.

The following materials were shared with retreat attendees:

•  National HIV Curriculum: HIV in Older Adults

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

Drug Importation:

According to Shabbir Imber Safdar, Executive Director, The Partnership for Safe Medicines, there are a wide variety of options for addressing financial impediments to healthcare access. The healthcare supply chain is convoluted and two people that receive the same treatment, test, or medicine often pay wildly different amounts. Not all of these are equally safe for patients.

Shabbir challenged the retreat attendees with a series of questions. First, we must understand the supply chain. How does it work in the US vs other countries? When it fails, how does it fail? What examples of failure exist that we can learn from? How do counterfeits get into our supply chain? Is our drug supply safer or more polluted than other countries? Why is that?

The discussion about the dangers involved with drug importation, including what exactly is the risk of patients breaking the supply chain? Is it just a loss of financial resources? Is a counterfeit that's just a placebo really that dangerous? And beyond the potential dangers, then other issues emerge when obtaining medicine from other countries domestic drug supply. Do they have shortages of their own? Are there other countries large enough to supply medicine to us?

The retreat attendees were also asked, so what's the answer? Can we judge different proposals on the basis of patient safety? Is there any time we want to sacrifice patient safety for access?

The following materials were shared with retreat attendees:

• How Did That Canadian Pharmacy Medicine Get To Me?
• Betty Hunter’s Death Illustrates Danger Of Fake Drugs
• FORTY-THREE STATES AND COUNTING: The Deadly Combination of Imported Fentanyl and Counterfeit Medicines
• Comment: Importing Canadian Drugs Could Harm HIV Patients
• Drug Importation Policy Is A Hard Pill To Swallow
• The Case Against Canada Drugs
• U.S. Drug Importation: Impact On Canada’s Prescription Drug Supply
• Exportation Of Pharmaceuticals From Canada To The United States

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

Ryan White Program Reauthorization:

The discussion about underserved communities served (or potentially served) by the Ryan White Program was facilitated by Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center. The world has changed since the 2009 reauthorization, as Jeffrey noted during this discussion. Research trials definitively have confirmed the benefits of immediate treatment, and the clinical guidelines have also changed. The use of care continuum and monitoring of durability of viral suppression continue to highlight gaps in care. The enactment of the Affordable Care Act (32 states and 62% of the HIV population lives in states that have expanded Medicaid) has changed the healthcare landscape. The 340B Drug Pricing Program is under pressure.

Some of the emerging issues/needs identified included the ongoing role of Ryan White in larger insurance system; early treatment and rapid start of ART/better supports for re-engaging people in care; addressing the needs of an aging HIV population; role of Ryan White in covering PrEP and PEP; Ryan White as a model for or its role in curing HCV and addressing the opioid crisis; and new technology is coming: preparing for long-acting agents.

Finally, Jeffrey led an all important dive into the risks in not reauthorizing versus the risks in reauthorizing the Ryan White Program. The Democrats regaining control of the U.S. House of Representatives certainly changes the dynamics surrounding possible reauthorization. 

The following materials were shared with retreat attendees:

• Coverage and Care Pathways for People with HIV: A New Baseline
• HIV and the Opioid Epidemic: 5 Key Points
• Long-Acting HIV Treatment and Prevention are Coming

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

Additional Fireside Chats are planned in 2019.

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.

Photo Source: Stopstreetharassment.org

In addition to ongoing work in policy and grants support the following actions were taken by key industry partners:

• Gilead celebrated Transgender Awareness Week by issuing a distinct statement reinforcing support of the transgender community
• Johnson and Johnson, Glaxso-Smith-Kline, and ViiV Healthcare signed on to the industry statement in entitled “Businesses for Transgender Equality”

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.