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.

HIV/AIDS Fireside Chat Retreat in Tampa Tackles Pressing Issues

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

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

Photo Source: Getty Images

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

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

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

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

340B Drug Pricing Program:

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

The following materials were shared with retreat attendees:

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

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

Opioid Epidemic & Impact on HIV:

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

The following materials were shared with retreat attendees:

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

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

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

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

The following materials were shared with retreat attendees:

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

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

Additional Fireside Chats are planned in 2018.