HIV/AIDS Fireside Chat Retreat in Virginia Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Richmond, Virginia among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS. The Fireside Chat took place on Thursday, September 12th, and Friday, September 13th. Medicaid Expansion, Ryan White HIV/AIDS Program ("RWHAP"), and Patient Assistance Programs (PAPs) were dissected by 23 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:

• Medicaid Expansion: Implications for Access to Care & Service Delivery for PLWHA in Virginia — moderated by Dr. Kathleen A. McManus, Department of Medicine,University of Virginia
• Ryan White Program: Impact to Service Delivery under Trump's Plan to Eliminate AIDS by 2030 — moderated by Jeffrey S. Crowley, O'Neill Institute for National and Global Health Law, Georgetown Law
• Access to Care: How Patient Advocacy Groups & Patient Assistance Programs Fill Treatment Gaps for PLWHA — moderated by Alan Richardson, Patient Advocate Foundation

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:

• Carnelle Adkins, Lead Case Manager, Capital Area Health Network
• William E. Arnold, President & CEO, Community Access National Network (CANN)
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Dawn Patillo Exum, Director, Public Policy, MERCK
• Kathie Hiers, President & CEO, AIDS Alabama
• Lynea Hogan, Virginia Consumer Advocate
• Lisa Johnson-Lett, Treatment Adherence Specialist /Peer Educator, AIDS Alabama
• Diana Jordan, Director of Disease Prevention, Virginia Department of Health
• Darnell Lewis, Local Coordinator ACCELERATE, TCC Group
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Kathleen McManus, Physician, University of Virginia
• John Minneci, Regional Account Executive, ViiV HealthCare
• Herminia Nieves, Assistant Director of Medication Access, Virginia Department of Health
• Theresa Nowlin, Massachusetts Consumer Advocate
• Juan Pierce, Virginia Consumer Advocate
• Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
• Josh Robbins, Owner, BNA Talent Group & The BRANDagement
• Kimberly Scott, Director of HIV Care Services, Virginia Department of Health
• Matt Sheffield, Director, Government Affairs, Thera Technologies
• Robert Skinner, President & CEO, Valley AIDS Information Network
• LaWanda Wilkerson, North Carolina Consumer Advocate
• Marcus Wilson, National Policy & Advocacy Director, Johnson & Johnson
• Jennifer Zoerkler, Executive Director, VHO

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

Medicaid Expansion:

Dr, Kathleen McManus summarized how Medicaid expansion under the Affordable Care Act has played a major role in the uninsured rate declining from 18% to 14% among people living with HIV/AIDS. In Medicaid expansion states the decline was event more visible, down from 14% to only 7% (with Ryan White clients classified as uninsured clients). In Virginia, for example, Medicaid eligibility was one of the most restrictive programs in the nation.

That said, barriers remain under Medicaid expansion. Sometimes more restrictions exist under Medicaid, such as closed drug formularies (often times more restrictive than ADAP drug formularies), mail-order pharmacy requirements, or providers being out-of-network. The ongoing challenges also remain with insurance carriers dropping plans under the ACA's marketplace. Some potential strategies to combat challenges created by the uncertain insurance market included state health departments leveraging existing relationships with insurance carriers, as well as increasing peer-to-peer education. The National Alliance of State & Territorial AIDS Directors ("NASTAD") has made available several important resources to help state health departments and Ryan White Programs navigate the Medicaid expansion landscape.

Medicaid expansion in Virginia has raised some important questions, including transitions for existing ADAP clients, access to care with Medicaid Managed Care Organizations, and upcoming Medicaid work requirements. “The Graying of HIV” was central throughout the Medicaid expansion discussion.

The following materials were shared with retreat attendees:

• Kaiser Family Foundation: Medicaid and HIV
• The Body: What Medicaid Work Requirements Might Mean for People With HIV
• Daily Press: It will be years before Virginia Medicaid program makes people work, and Republicans aren’t happy (May 22, 2019)
• HIV/AIDS Bureau Policy: Clarifications Regarding the Use of Ryan White HIV/AIDS Program Funds for Health Care Coverage Premium and Cost Sharing Assistance

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

Ryan White Program:

The Ryan White HIV/AIDS Program was discussed as a follow-up to the Michigan Fireside Chat, mainly as it relates to the Administration's plan to End the Epidemic by 2030 (EtE) initiative. As a foundational point for this discussion, some important facts were shared on why is the Ryan White Program needed if people with HIV have health insurance coverage, especially its role in leading the way in getting people with HIV virally suppressed by ensuring stable access to HIV primary care and medication, along with critical support services. Some of the issues touched upon included the impact of the uneven Medicaid expansion landscape from state-to-state, ADAP-funded insurance premium assistance, and mental health.

The EtE's targeted approach focuses on 46 counties in the United States, which account for over half of the new infections (there are over 3,000 counties nationwide). It was widely recognized that the plan does include a significant down payment to fund the initiative, but concerns linger over the ongoing assault on the Affordable Care Act. The Administration's plan also provided the opportunity to evaluate the ongoing rise in sexually transmitted diseases, which include worrying trends (22% increase in Chlamydia, 67% increase in Gonorrhea, and 80% increase in Syphilis). Additionally, PrEP was discussed as a way to improve population-level outcomes.

Photo Source: CDC

Finally, there was considerable discussion over the emerging controversy surrounding the use of cluster detection to pinpoint HIV hotspots. Whereas many health departments and public health professionals applaud using cluster detection (described as a tool), many patient advocates and people living with HIV/AIDS are increasingly alarmed over it. Emerging concerns include privacy, stigma, and criminalization.

The following materials were shared with retreat attendees:

• What is ‘Ending the HIV Epidemic: A Plan for America’?
• HRSA Congressional Justification, FY 2020: See Ryan White Program section, pages 228-265
• ACHIEVING SUFFICIENT SCALE OF PrEP USE IS CRITICAL TO ENDING THE HIV EPIDEMIC
• THE US STI CRISIS
• USING CLUSTER DETECTION TO END THE HIV EPIDEMIC

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

Patient Assistance Programs:

Earlier this year the Patient Advocate Foundation ("PAF") blogged about Navigating the Costs of HIV Care – Conversations, Resources & Patient Experience, which summarized two online survey assessments of patients to identify root causes of financial toxicity including preferences towards cost conversations, degree and sources of financial stress. These surveys provided an important backdrop of this discussion about patient assistance programs ("PAPs").

The complexity of the nation's healthcare system and safety net programs often create "gaps" and the potential for patients to fall through them, thus losing access to timely, appropriate care and treatment. PAPs often provide the necessary resources to fill many of the care and treatment gaps. Some of the programs discussed included co-payment relief programs, case management services, and patient navigator programs.

Photo Source: PAF

Questions asked included what are manufacturer free drug programs and how do they operate, what are Coupon Cards and how do they work, and what is the difference between a manufacturer free drug program and charitable co-pay programs? Aside from the services provided by PAF, other patient resources offered by different organizations were also discussed, including the PAN Foundation, NeedyMeds, and PhRMA.

The following materials were shared with retreat attendees:

• Who Provides Patient and Health Advocacy?
• Ten Key Skill Sets of Health Care Advocates
• How a Patient Advocate Helps You Navigate the Medical System
• Patient advocates’ role expands to meet healthcare’s increasingly complex demands
• Patient Advocacy for Beginners
• HIV, AIDS & Prevention CareLine
• Hepatitis C CareLine

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

Additionally, a special thank you is extended to Diana Jordan, Kimberly Scott and the entire Virginia Department of Health for their assistance during our stay in Richmond, VA.

Additional 2019 Fireside Chats are planned in New York, New York.