Fireside Chat Retreat in Philadelphia, PA Tackles Pressing Public Health Issues

By: Brandon M. Macsata, CEO, ADAP Advocacy

ADAP Advocacy hosted its "Health Fireside Chat" retreat in Philadelphia, Pennsylvania among key stakeholder groups to discuss pertinent public health issues facing patients in the United States. The Health Fireside Chat convened Thursday, September 21st through Saturday, September 23rd. The growing threat to public health from the spread of medical misinformation and disinformation, reforming the 340B Drug Pricing Program to better serve patients rather than providers, and the effective implementation of longer-acting HIV treatment and prevention programs were evaluated and discussed by the 20 diverse stakeholders.

The Fireside Chat's “ice breaker” activity included some fun and games at Dave & Buster's with their pool tables, video games, carnival challenges, and virtual reality. Attendees enjoyed some bonding and laughter before collectively rolling up their sleeves and taking a deep dive into the policy discussions.

Photo Source: Getty Images

The Health Fireside Chat included moderated white-board style discussion sessions on the following issues:

• Public Health Alert: Medical Misinformation Can be Dangerous to Your Health — moderated by Rick Guasco, Acting Editor-in-Chief and Creative Director at Positively Aware
• 340B Drug Discount Program: The Issues Spurring Discussion, Stakeholder Stances, and Possible Resolutions? — moderated by Tim Horn, Director, Medication Access at NASTAD
• Long Acting Injectables: Effective Implementation of Longer-Acting HIV Treatment and PrEP Requires Delivery System Innovation — moderated by Jeffrey Crowley, Distinguished Scholar/Program Director, Infectious Disease Initiatives at the O'Neill Institute/Georgetown Law

The discussion sessions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Health Fireside Chat. The following represents the attendees:

• Ninya Bostic, National Policy and Advocacy Director, IDV, Johnson & Johnson
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Theresa Daugherty, Patient Advocate
• David Gana, Patient Advocate
• Alexander Garbera, Co-Chair, New Haven Mayor’s Task Force on AIDS, City of New Haven, CT
• Dusty Garner, Patient Advocate
• Rick Guasco, Acting Editor-in-Chief and Creative Director at Positively Aware
• Tim Horn, Director, Medication Access at NASTAD
• Riley Johnson, Founder, RAD Remedy
• Thomas Johnson, Executive Director, Alliance to Save America’s 340B Program
• Jen Laws, President & CEO, Community Access National Network
• Darnell Lewis, Program Coordinator, RAO Community Health
• Brandon M. Macsata, CEO, ADAP Advocacy
• J. Maurice McCants-Pearsall, Government Relations Director (Southeast), ViiV Healthcare
• Aisha McKenzie, Patient Advocate
• Warren O’Meara-Dates, Founder & CEO, The 6:52 Project Foundation
• Brian Smith, Alliance Development and Strategic Advocacy
• Matt Toresco, CEO & CPO, Archo Advocacy LLC & Elavay
• Stacey L. Worthy, Director, Healthcare Policy & Strategy, Johnson & Johnson
• Joey Wynn, Chairman, Florida HIV/AIDS Advocacy Network

The Covid-19 pandemic is still ongoing. Covid-19 cases and hospitalizations are both on the rise again, according to data by the Centers for Disease Control & Prevention (CDC) With that in mind, ADAP Advocacy implemented strong Covid-19 safety protocols for the Health Fireside Chat, which included proof of vaccination/booster, robust self-administered testing (prior to travel, upon arrival, and after returning home), complimentary rapid self-test kits and hand sanitizer for each of the attendees, as well as guidelines for masks on commercial travel to the event, and optional masks during the sessions (which some attendees exercised without feeling shunned).

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

Medical Misinformation:

The first policy session, “Public Health Alert: Medical Misinformation Can be Dangerous to Your Health”, lead by the Positively Aware Magazine’s Rick Guasco, challenged guests to evaluate their own role in potentially sharing medical misinformation without even knowing it. Guasco highlighted that everyone can do something about misinformation, starting with being cognizant of how people can potentially spread it. A little information is a dangerous thing. Medical misinformation is information that is false, inaccurate, or misleading. A little misinformation can become the building block of lies and ignorance. As such, medical disinformation is misinformation with a purpose. According to the Kaiser Family Foundation's recent poll, most Americans encounter health misinformation, and most aren’t sure whether it’s true or false local TV.

Drawing on KFF's Misinformation Pilot Poll, KFF released three follow-up reports examining exposure to, and belief in, health misinformation among Black adults, Hispanic adults, and rural communities.

Guasco shared what he viewed as the best three ways to combat medical misinformation and disinformation. They included 1) promoting the truth by proactively talking about health literacy, 2) pre-bunking fake medical news by putting counter-arguments out in anticipation, and 3) de-bunking fake medical news, but it is more difficult because it is harder to change minds once the misinformation and disinformation is spread. Significant conversation centered around lingering medical mistrust in the Black community after the Tuskegee Airmen experiments. Rev. Alexander Garbera offered an excellent quote to summarize how to combat the dangers associated with medical misinformation and disinformation: "Combat fear with empathy."

Photo Source: Florida International University

The following materials were shared with retreat attendees:

• Ex-JAMA Chief: Cut the Hype, Spin in Published Studies — Howard Bauchner, MD, says researchers want to report accurately, but "they too have their biases" via MedPage Today
• Doctors who put lives at risk with covid misinformation rarely punished via The Washington Post
• Abortion health information via National Library of Science
• Science Communication in the Age of Misinformation via CROI 2023

ADAP Advocacy would like to publicly acknowledge and thank Rick Guasco for facilitating this important discussion.

340B Drug Discount Program:

As a backdrop to the discussion over the 340B Drug Discount Program, an opinion piece dropped calling out the hypocrisy behind the forces fighting reform. NASTAD's Tim Horn kicked-off the discussion with an overview of the program, including an analysis on how 340B intersects with the Ryan White HIV/AIDS Program, including State AIDS Drug Assistance Programs (ADAP). In that, some challenges were addressed – such as explosive program growth, lack of transparency, and calls for more oversight. There was particular focus on ADAPs and their specific programmatic use of the 340B dollars exclusively for patient care, and that in many ways it represents the "gold standard" among Covered Entities participating in the program. The discussion also centered around some of the pros and cons associated with ongoing reform proposals; they included contract pharmacy restrictions, discriminatory reimbursement laws, and possible federal legislation (e.g., ASAP 340B). The conversation touched the rising medical debt crisis in the United State (of which, most medical debt is actually hospital-associated debt), declining charity care among hospitals, as well as the adverse impact on patients via provider consolidation. Ongoing scrutiny over the lack of transparency in the program continues to grow, evidenced by the Request for Information (RFI) issued by a group of bipartisan senators, including Senator John Thune (R-SD), Senator Debbie Stabenow (D-MI), Senator Shelley Moore Capito (R-WV), Senator Tammy Baldwin (D-WI), Senator Jerry Moran (R-KS), and Senator Benjamin Cardin (D-MD). Read the joint statement by ADAP Advocacy and CANN, here.

Photo Source: Positively Aware

The following materials were shared with retreat attendees:

• ADAP Crisis Task Force Fact Sheet via NASTAD
• Principles for Ensuring the 340B Program Benefits Patients and True Safety-Net Providers via ASAP 340B
• Creating Long-Overdue Clarity Around Patient Definition in the 340B Program via ASAP 340B
• Estimated Changes in Manufacturer and Health Care Organization Revenue Following List Price Reductions for Hepatitis C Treatments via JAMA Network
• 340B-Where Do We Go From Here? via JAMA Network 
• Pharmaceutical Manufacturer 340B Price Restriction Policies and Exemptions Summary. Ryan White Clinics for 340B Access via RWC340B
• HIV Prevention and the 340B Drug Pricing Program via The New England Journal of Medicine
• The 340B Drug Discount Program Exceeds #100B in 2022 via IQVIA
• 340B and Ending the Epidemics via National Coalition of STD Directors
• 340B: A Critical Program for Health Centers via National Association of Community Health Centers
• A Syndemic Approach to STD 340B Correctional Facility Partnerships for Health Department Prevention Programs via NASTAD
• Best Practices for Shared ADAP and Other 340B Covered Entity Clients via NASTAD
• Association of 340B Contract Pharmacy Growth with County-Level Characteristics via American Journal of Managed Care
• How a Hospital Chain Used a Poor Neighborhood to Turn Huge Profits via The New York Times

ADAP Advocacy would like to publicly acknowledge and thank Tim Horn for facilitating this important discussion.

Editor's Note: The ADAP Advocacy Association has offered opinions on 340B over the last several years, including Industry’s Changes to 340B Drug Discount Program (April 2022), 340B – Reply Hazy, Try Again (January 2020), The Federal 340B Program: A Call to Order (March 2019), and 340B Program: Don't Throw the Baby Out with the Bathwater (March 2017)

Long-Acting Injectables:

The O'Neill Institute for National and Global Health Law recently published a brief, Effective Implementation of Longer-Acting HIV Treatment and PrEP Requires Delivery System Innovation. The O'Neill Institute summarized long-acting injectables:

"Scientific advancements resulting from our long-term national commitment to HIV research have begun producing new products both for HIV treatment and prevention that do not require daily dosing. The first standalone longer-acting (LA) FDA-approved products are delivered by intramuscular injection every 1-2 months, but future products may require far less frequent injections or could come in other forms such as small implants under the skin or oral medications. These products represent exciting advances because they give users more options to stay engaged in the HIV treatment or prevention continuum. While many patients and providers speak of how transformative these products can be, access to these products is limited and a myriad of barriers prevent individuals from accessing them. Deliberate policy actions are needed to ensure that these innovations do not bypass the individuals and communities that stand to benefit the most from them."

Read the brief and its related materials. 

Jeffrey S. Crowley led this important discussion. While early in the implementation of these products, several barriers have arisen that must be overcome.  Among these are:

1. Adapting our current clinics and health care programs to allow for greater scale;
2. Overcoming insurance and financing barriers to access;
3. Addressing regulatory and financing barriers to new delivery models, such as greater use of pharmacies, mobile clinics, or self-administration; and,
4. Ensuring that innovations in HIV services delivery reduces rather than increases equity.

Some perspective was also shared on the work done by the O'Neill Institute in this area. Dusty Garner offered his perspective on some of the challenges he has encountered accessing his LAI treatment. Additionally, several members of the ADAP Advocacy's ADAP Injectables Advisory Committee, including Jen Laws, Riley Johnson, and Warren O-Dates, offered their perspectives on LAIs and the challenges being faced by patients.

Photo Source: European AIDS Treatment Group

The following materials were shared with retreat attendees: 

• Big Ideas Brief: Effective Implementation of Longer-Acting HIV Treatment and PrEP Requires Delivery System Innovation via O'Neill Institute
• Quick Take: Equitable Access to New HIV Treatment and Prevention Options is Needed Across Payers via O'Neill Institute
• Quick Take: New Options for HIV Treatment and Prevention are Here via O'Neill Institute
• Cabenuva (cabotegravir & rilpivirine extended-release injections) Considerations for AIDS Drug Assistance Programs via NASTAD
• Pipeline Report 2023 via Treatment Action Group
• Long-Acting Injectable Cabotegravir for PrEP: Understanding Results of HPTN 083 & 084 and key areas for advocacy via AVAC
• Long-Acting Injectables Antiretrovirals for Treatment and Prevention via AVAC

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

Additional Fireside Chats are planned for 2023 in New Orleans, Louisiana.

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.