Fireside Chat Retreat in Charleston, SC Tackles Pressing Public Health Issues

By: Brandon M. Macsata, CEO, ADAP Advocacy

ADAP Advocacy hosted its Health Fireside Chat retreat in Charleston, South Carolina among key stakeholder groups to discuss pertinent public health issues facing patients in the United States. The Health Fireside Chat convened Thursday, April 25th through Saturday, April 27th. An analysis of the collaborative relationships between patient advocacy organizations and drug manufacturers, patient perspectives about long-acting injectables for HIV treatment and prevention, and the dark side of state-sanctioned prescription drug affordability boards were evaluated and discussed by the 21 diverse stakeholders.

Photo Source: Getty Images

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

• Patient Insights: How Patient-Industry Collaboration Can Elevate Healthcare Reform — moderated by Brandon M. Macsata, CEO, ADAP Advocacy
• Patient Perspectives: How Long-Acting Injectables Can Improve Access to Care —moderated by Riley Johnson, Project Lead, Long-Acting Injectables Project, ADAP Advocacy
• Patient Context: How Prescription Drug Affordability Boards Impact Access to Care — moderated by Jen Laws, President & CEO, Community Access National Network (CANN)

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:

• Maggie Blunk, Communications Manager, North Carolina AIDS Action Network
• La’Donna Boyens, Patient Advocate
• Erin Bradshaw, EVP for the Advancement of Patient Services and Navigation, Patient Advocate Foundation
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Erin Darling, Associate Vice President and Counsel, Federal Policy, Merck
• Hunter Fasanaro, Director of Strategic Partnerships & Healthcare Initiatives, Archo Advocacy
• Hilary Hansen, Global Public Affairs Head, Oncology, Sanofi
• Patrick Ingram, Community Outreach and Prevention Programs Supervisor, Hennepin County 
• Lisa Johnson-Lett, Peer Support Specialist, AIDS Alabama
• Riley Johnson, Founder, RAD Remedy
• Jen Laws, President & CEO, Community Access National Network
• Michael Luciano, Peer Treatment Educator, Palmetto Community Care
• Brandon M. Macsata, CEO, ADAP Advocacy
• Judith Montenegro, Program Director, Latino Commission on AIDS
• Necaela Penn, Patient Advocate
• Kalvin Pugh, Senior Advisor on Community Engagement, International Association of Providers of AIDS Care
• Donna Sabatino, Director State Policy & Advocacy, The AIDS Institute
• Larry Scott-Walker, Executive Director, THRIVE SS Inc
• Dafina Ward, Executive Director, Southern AIDS Coalition
• Katie Willingham, Blogger, The Well Project
• Marcus Wilson, Senior Director, Community Engagement and Patient Advocacy, Gilead Sciences

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

Patient-Industry Collaboration:

The first policy session was Patient Insights: How Patient-Industry Collaboration Can Elevate Healthcare Reform, which was led by ADAP Advocacy's CEO, Brandon M. Macsata. With both patients, patient advocacy organizations, and industry partners all in the room, it represented an opportunity to discuss their collaboration. Macsata provided some background on why such collaborative relationships exist, as well as how they are perceived – including how some characterized the relationships through a negative lens. In general, and not speaking specifically to drug manufacturers money, Macsata noted several commonly accepted reasons why donors give money to organizations or causes. Donors are purpose-driven; donors trust your organization; donors understand their impact; donors have a personal connection to your purpose; donors want to be part of something meaningful; donors are engaged; and donors appreciate tax benefits.[1] He further noted industry partners providing memberships, sponsorships, or charitable grants to nonprofit patient advocacy organizations are no different.

Whereas the group agreed an fair examination of these relationships is a good thing, characterizing the support from industry partners as "dark money" or "tainted money" or "bribes" is disingenuous to the patient advocacy groups who receive it. The implied "quid pro quo" narrative is nothing more than "guilt by association" smear tactic that completely discounts the valuable work being done on public policy. The reality is often time the interests of the patient advocacy community and the interests of the drug manufacturers align, as has been the case numerous times over the years pushing back against attempts to weaken Medicare's six protected classes of drugs. 

Industry partners participating in the discussion shared their perspectives on the difference between transactional support and transformative support. The latter is designed to impact systems change, rooted in further empowering patients to end the HIV epidemic. Without industry partner support, it would be even more challenging – if not impossible – to advocate for greater access to HIV long-acting injectables, or repealing draconian HIV criminalization. All of the impudent exposes published by the likes of the KFF Health News or Axios failed to recognize that fact.

The group concluded with a lengthy assessment of the status of patient advocacy, which included calls for more transparency among these groups.

The following materials were shared with retreat attendees:

• Our Commitment to Transparency, 2023
• Our Commitment to Transparency, 2021
• Our Commitment to Transparency, 2018
• 340B Hypocrisy: The Inconvenient Truth Behind Why We Need to Reform This Vital Safety Net Program
• 340B Covered Entities’ Revenue Witnessed Huge Executive Compensation Increases, Alarming Charity Care Decreases
• Pharma's influence on patient advocacy
• Patient Advocacy Groups Take In Millions From Drugmakers. Is There A Payback?

ADAP Advocacy would like to also call attention to how this very conversation is happening among academia, evidenced by the recent report featured in The Crimson: ‘Deal with the Devil’: Harvard Medical School Faculty Grapple with Increased Industry Research Funding.

Long-Acting Injectables:

Riley Johnson, who serves as ADAP Advocacy's Long-Acting Injectables (LAIs) Project, presented initial themes and findings from the project's research methods – including a quantitative survey, a qualitative focus group, and an examination of data – across two populations – those who are HIV-positive (the use of LAIs for treatment) and those who are HIV-negative (the use of LAIs for prevention). This project was made possible by support from Gilead Sciences, Merck, and ViiV Healthcare. A final report will be issued in May 2024.

ADAP Advocacy’s LAIs Treatment Survey had 262 respondents and the focus group had 8 participants, whereas the Prevention Survey had 184 respondents and the focus group had 8 participants. Key themes in the focus groups included provider barriers, supply chain issues, medical mistrust (both historical accounts/community trauma as well as current individual feelings), and insurance coverage barriers.

Discussion at the Fireside Chat focused on patients’ ability to navigate health environments and insurance processes as well as Fireside Chat participants sharing best practices for wraparound services that help patients address some of the more tangible issues they face when pursuing LAIs (e.g. providing documentation to assist with Family and Medical Leave Act (FMLA) requests, transportation assistance, etc.)  The final report of this iteration of the Long-Acting Injectables Project is slated for release later this month.

The following materials were shared with retreat attendees:

• Advocacy Needed to Reduce Barriers to Accessing Long-Acting Agent Therapies
• Barriers to Uptake of Long-Acting Antiretroviral Products for Treatment and Prevention of Human Immunodeficiency Virus (HIV) in High-Income Countries
• Cost-effectiveness of Cabotegravir Long-Acting for HIV Pre-exposure Prophylaxis in the United States
• PrEP, a Key HIV Prevention Tool, Isn’t Reaching Black Women
• MAKING A SPLASH: For people living with HIV who are experiencing homelessness or unstable housing, long-acting injectable treatment holds great promise—how Ward 86 makes it work
• Evidence Suggest Long-Acting Injectables Game Changer for Adherence
• The State of Long-Acting Injectable Medicaid Coverage

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

PDABs:

The Community Access National Network (CANN) action center on Prescription Drug Affordability Boards (PDABs) served as a focal point for this discussion, which was led by CANN's President & CEO, Jen Laws. While there are ten states with established boards, each operates slightly differently, with some of those including power to establish an "upper payment limit" (reimbursement ceiling) for selected medications. Because of a variety of public health funding mechanisms, specifically rebates utilized to fund Medicaid programming, federally qualified health centers and other 340B grantee entities, and State AIDS Drug Assistance Programs, these reimbursement caps are a threat to the sustainability of certain programming and efforts supporting health equity and tackling health disparities. The value of these rebates are found in the "spread" between the reduced acquisition cost and the reimbursement rate — meaning the lower the reimbursement rate the lower the value of the rebate and the fewer dollars 340B grantee entities have to reinvest in programs and services. Further, federal matching dollars for the Medicaid program are based upon reimbursement rates. Reduce the reimbursement rate and the federal matching dollars are therefore reduced.

Additional conversation centered on what medications were being reviewed for selection by PDABs, and who the target beneficiaries of any action should be (patients vs. systems). Laws pointed out that while the political marketing behind PDABs focuses language on patients and "commonly used" medications, those medications being selected are those treating rare and chronic conditions, some of which have no alternative or for which there is a contraindication for any alternatives (ie. genotype specific ARVs), and discussion is increasingly focused on so-called "savings" for the systems, rather than patients. The bait and switch on actions from the "sales point" raises serious alarms.

Further still, other layers of complication include the regular and routine concerns voiced by non-chain, independent pharmacies already facing under-reimbursement threatening their ability to serve their communities and the fact that wholesalers and distributors are often located outside of a particular state, meaning the acquisition is very likely to remain the same, regardless of reimbursement rate, threatening access to care for patients in multiple ways.

These varied concerns are ultimately why several states ended up not taking on PDAB legislation this year. Effective advocacy both pre- and post-legislation is necessary to inform these boards and ensure patients guide in a process that's supposed to be about patients. One last tidbit: all board establishing legislation contain conflict of interest provisions which otherwise prevent patient representation on these boards. In HIV, there is a commonly-accepted theme, "nothing about us without us", and yet, that's exactly what these boards are premised on doing.

The following materials were shared with retreat attendees: 

• NASHP Model State Legislation
• CANN PDABs Action Center
• Health Plans Predict: Implementing Upper Payment Limits May Alter Formularies And Benefit Design But Won’t Reduce Patient Costs
• NMQF Webinar: State Prescription Drug Affordability Boards & Health Equity
• Ripple Effect: How PBMs and Counterfeit Drugs Threaten Patients
• Prescription drug affordability boards do more harm than good

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

Additional Fireside Chats are planned for 2024 in Houston, New Haven, and New York City.

[1] Bonterra (2022, February 20). 7 reasons why donors give + how to appeal to their motives. Retrieved online from https://www.bonterratech.com/blog/7-reasons-why-donors-give

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.