HIV/AIDS Fireside Chat Retreat in California Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Monterey, California among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS. The Fireside Chat took place on Thursday, March 28th, and Friday, March 29th. The 340B Drug Discount Program, Medicare's Six Protected Classes ("6PC"), and the Ryan White HIV/AIDS Program ("RWHAP") were dissected by 20 diverse leaders in the fight against the HIV/AIDS epidemic.

Photo Source: Getty Images

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

• 340B Program Reform: The Issues Spurring Discussion, Stakeholder Stances and Possible Resolutions, moderated by Jeffrey R. Lewis
• Medicare’s Part D Six Protected Classes: Proposed Changes Could Harm the Most Vulnerable Patients, moderated by Tim Vaske
• Ryan White Program: Ensuring the Sustainability of Community-Based Programs, moderated by Robert Skinner

The discussion sessions 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:

• Evelyn Alvarez, Chronic Disease Prevention Coordinator, Monterey County Health Department (**unable to attend**)
• Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome)
• Guy Anthony, President & CEO, Black, Gifted & Whole Foundation
• Jovan Antunovic, Senior V.P. and Chief Commercial Officer, Theratechnologies
• William E. Arnold, President & CEO of the Community Access National Network (CANN)
• Noel Chavez-Guizar, Medical Case Manager, Servicios de La Raza
• Hilary Hansen, Executive Director, Advocacy & Strategic Alliances (US), Merck
• Andrew Herbert, Policy Team, Gilead Sciences
• Hema Kapoor, MD, Medical Director, Infectious Diseases/Immunology, Quest Diagnostics
• Jeffrey R. Lewis, President & CEO, Legacy Health Endowment
• Shayna Linov, Fiscal Health Manager, HealthHIV
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Kassy Perry, President & CEO, Perry Communications Group
• Robert Skinner, President & CEO, Valley AIDS Information Network
• Brian Smith, Government Affairs, Biotechnology Innovation Organization 
• Kristen Tjaden, Community Government Relations Director, ViiV Healthcare
• Tim Vaske, Senior Director for Advocacy and Strategic Alliances, PhRMA
• Jennifer Vaughan, Founder, Facebook Women’s HIV+ Support Group
• LaWanda Wilkerson, patient advocate
• Marcus A. Wilson, National Policy & Advocacy Director, Johnson & Johnson

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

340B Program:

The discussion on the 340B Drug Pricing Program (hereafter "340B program") was facilitated by Jeffrey R. Lewis, who co-chaired the Community Access National Network's 340B Commission. Unlike all other federal health programs, the costs of the 340B program are born by the pharmaceutical industry. The 340B program requires pharmaceutical manufacturers that participate in Medicaid and Medicare (Part B) programs to provide discounts on covered outpatient medicines to nonprofit healthcare providers (Covered Entities) licensed to provide care under the 340B program. When the 340B program was created, many uninsured patients used hospital emergency rooms for primary care; nonprofit hospitals were often paying for the needed medications to keep the patient from showing up again; and, the cost impact on the hospitals was rising. Congress wanted to ensure that nonprofit healthcare providers could stretch limited dollars. So, the 340B program was designed to aid that effort.[1]

Much has changed in the healthcare landscape since the inception of the 340B program. As such the issues discussed included clarifying the purpose and intent of the 340B program. It asked tough questions, such as should Covered Entities be accountable for how they use 340B program savings, and has the program grown too rapidly or is it too large? It reviewed the growth of Contract Pharmacies, as well as duplicative discounts, and payer discrimination. What authority is needed to better manage the 340B program, and what about updating the patient definition (who are 340B patients) were also questions on the table.

The following materials were shared with retreat attendees:

• CANN 340B Commission’s final report 
• CANN 340B Commission’s background materials

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

6PC:

Tim Vaske, Senior Director for Advocacy and Strategic Alliances with the Pharmaceutical Research and Manufacturers of America ("PhRMA") opened the discussion with an analogy to Article V of the NATO treaty, whereby an attack on one member is considered an attack on all. The same can be said for 6PC!

Photo Source: The National Council

In Medicare Part D, the six protected classes policy protects vulnerable seniors and low-income beneficiaries with serious and complex health conditions, while also allowing Part D insurance plans to use the tools they need to control costs. Medicines for some of the sickest patients in Part D are covered within the six protected classes, including those for cancer, epilepsy, HIV/AIDS and mental illness.  Many of these conditions require patients to attempt a variety of therapies before they and their doctor settle on the most appropriate treatment, so there is no one-size fits all medicine for these conditions.[2]

Some background information was reviewed, including a description of the proposed rule and some of the rationale used by the U.S. Department of Health & Human Services ("HHS"), overview of prior authorization, and step therapy. The discussion challenged whether the price controls within the proposed rule which would potentially restrict access for patients, and asked about the impact the proposed rule could have for people stable on their medications, including people taking medications for HIV and/or mental illness. Finally, there was speculation about the potential timeline, if finalized.

Significant attention was dedicated to the ongoing 6PC advocacy efforts, especially since there is broad opposition to the proposed rule. Additional discussion focused on how the 6 PC proposed rule is counter to other Administration action around HIV prevention and treatment, as well as identified engagement opportunities.

The following materials were shared with retreat attendees:

• Partnership for Part D Access – Fact Sheet: CMS Proposal Erodes Patient Protections for Medicare’s Six Protected Classes
• Partnership for Part D Access – Comment Letter
• RealClearHealth, “Providers Should Call The Shots In Mental Health Care, Not Insurers” – Patrick Kennedy (3/6) 
• Miami Herald, “Trump Wants To End HIV Transmission By 2030. That Means, He Should Withdraw Proposal That Undercuts Treatment” – Smith & Acosta (2/19) (Equality Florida)

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

Ryan White Program:

The Ryan White HIV/AIDS Program and Ryan White-funded supports and services have been the cornerstone of the public health system assisting underserved populations living with HIV-infection. Yet, Ryan-White-funded AIDS Service Organizations ("ASOs") and Community-Based Organizations ("CBOs") have increasingly found themselves challenged to remain financially solvent in today's rapidly changing healthcare environment. The unevenness of the Affordable Care Act's ("ACA") Medicaid expansion has made the challenge even more cumbersome.

The discussion centered on how ASO’s and CBO’s have the potential to play a significant role in changing from a disease model to a wellness model, with respect to the HIV care continuum. With that in mind, it asked what kinds of system changes are needed to incorporate more client concerns and improve service delivery? What pushback would result?

It is essential that Ryan White-funded ASOs and CBOs find new ways to thrive in a changing environment. Some of the conversation focused on what would these changes look like, as well as where they are already underway. Finally, some attention was directed to Administration’s recently unveiled plan to eliminate HIV/AIDS, while at the same time calling for an end to the ACA.

The following materials were shared with retreat attendees:

• Enhancing the Sustainability of Ryan White-Funded AIDS Service Organizations and Community-Based Organizations
• Health Systems Integration: Provider Sustainability
• HRSA: Goals and the Future of the Program 

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

Additional 2019 Fireside Chats are planned in Detroit, Michigan, and Richmond, Virginia, and New York, New York.

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[1] Lewis, Jeffrey R. & William E. Arnold. (2019, March 28). The Federal 340B Program: A Call to Order. ADAP Blog. Retrieved online at https://adapadvocacyassociation.blogspot.com/2019/03/the-federal-340b-program-call-to-order.html.
[2] Johnson, Juliet (2019, January 31). New Research Shows Changes to the Six Protected Classes Would Harm Most Vulnerable Patients and Are Unnecessary. ADAP Blog. Retrieved online at https://adapadvocacyassociation.blogspot.com/2019/01/new-research-shows-changes-to-six.html.