When the Rubber (ACA) Hits the Road (ADAP)

By Anna Meghan Nunn
Intern from the University of North Carolina at Wilmington, Department of Public and International Affairs

The ADAP Advocacy Association, in conjunction with the Community Access National Network's Hepatitis: Education, Advocacy & Leadership (HEAL) project, held their fourth annual summit in Washington D.C. last week. The event entitled, "The Intersection Between the ACA and ADAP," was held on Monday, April 14th - Tuesday, April 15th, 2014. The summit's purpose was to “assemble stakeholders to discuss the Affordable Care Act as it relates to individuals living with HIV/AIDS and individuals living with Viral Hepatitis, especially the law’s impact on services and supports funded under the AIDS Drug Assistance Program.”

The summit was open to the public and included a variety of stakeholders from the public health, advocacy, medical, pharmaceutical and government sectors, as well as numerous patients currently receiving services under the AIDS Drug Assistance Program (ADAP). Thirty invited panelists attended, eight of which gave presentations that focused on current issues and enduring questions within the HIV/AIDS community. The presentations included:

• “A Year of Change: ADAP’s Successes and Challenges Implementing the Affordable Care Act”— Emily McCloskey, Manager, Policy and Legislative Affairs, National Alliance of State & Territorial AIDS Director (NASTAD)
• “Update on ACA Medicaid Expansion”— Matt Salo, Executive Director, National Association of Medicaid Directors
• “The Continuing Role of ADAPs as Health Insurance Coverage is Expanded by the Affordable Care Act”— Jeff Crowley, Program Director, National HIV/AIDS Initiative, Georgetown Law, O’Neill Institute for National and Global Health Law
• “ADAPs & Wrap Around Services in Marketplace Plans”— Glen Pietrandoni, Senior Director, Pharmacy Services, Walgreens & Joey Wynn, Community Relations Director, Empower U
• “Update on Blue Cross Blue Shield of Louisiana & Discriminatory Marketplace Exchange Practices”— Scott Schoettes, HIV Project Director, Lambda Legal
• “Mind the Gap: Ensuring Appropriate Care for Incarcerated Patients Transitioning Back Into Their Communities”— A. Toni Young, Executive Director, Community Education Group
• “Co-occurring Challenges: Leveraging ADAP and ACA to Address Hepatitis C and Substance Abuse Disorders”— Daniel Raymond, Policy Director, Harm Reduction Coalition

To view the individual presentations, click here.

Michael Shankle, with HealthHIV, facilitated the discussion, guiding participants through the lengthy and thoughtful conversations that helped make the summit a success.  He opened the summit by asking each panelist to use one word to describe the ACA/ADAP intersection; he used the responses to generate a word cloud.

The summit kicked off with an overview from Emily McCloskey, NASTAD. The presentation addressed the following points:

• Medical Homes
• Treatment incentives
• ADAP co-pays 
• Drugs
• Drug co-pays Possible elimination of combo drugs 
• HRSA- Purchasing insurance must match ADAP formulary

This information laid the foundation for the day’s discussion.

Matt Salo, National Association of Medicaid Directors, gave the next presentation which addressed the issues surrounding Medicaid Eligibility Expansion and the ACA. Key points from this discussion included:

• State Strategies
• In need of tools
• Patient vs. Politics
• Politics wins as state Medicaid directors are often forced to tow the line of their Governor’s agenda
• Risk pools increase cost
• Young and healthy are not enrolling 
• Private option more expensive
• Medicaid does not factor in risk pools 
• Private--> marketplace--> diversifies risk pool 
• Need 400% FPL enrollment 
• Do substitutions make plans more affordable 100% FPL to 133% FPL
• Supportive Services
• Medicaid staff with HIV-specific experience decreased
• States deliver the most medications to the most people
• Leveraging resources 
• Sub-optimal therapies
• Cheapest isn’t always best
• Essential role of community providers
• Continuity of care

Salo’s presentation allowed for a rich discussion of how Medicaid and the ACA impact Ryan White providers and State ADAPs.

Next,  Jeff Crowley, Georgetown Law's O’Neill Institute for National and Global Health Law, focused on how the ACA has expanded the role of ADAPs as insurance providers. Main points that were brought up in the discussion included the following:

• Focus on individuals 
• Falling through the cracks
• Need to provide education about available plans
• Need to educate providers
• Collecting better data
• Healthcare reform is about integration
• How do we thoughtfully distribute the funding
• How to educate new leaders 
• Develop "champions"
• Treatment as prevention
• Reauthorization needs to address funding (e.g., formulas)
• Fairness (where located)
• Must have community input
• Equity equals decreased competence 
• Emergency focus and examination
• Non-expansion states increased disparities 
• Need to create a balance between incentives and punishment of states
• Difficult conversations are necessary
• People respond  to success
• Broaden coalitions 
• Nurture younger voices
• More consumer engagement 
• Responsibility of consumers
• Agency engagement
• Consumer drive

Crowley’s presentation opened the floor to a lengthy and important conversation about the ACA and ADAP.

The afternoon began with presentations from Glen Pietrandoni, Walgreens, and Joey Wynn, , Empower U. These presentations dealt with issues related to wrap-around services in the Marketplace exchange. The discussion yielded the following points:

• Expand role providers and pharmacists
• Tools need to be developed using local assumptions and factors
• Help consumers pick plans with models and make informed decisions 
• How states make payments
• Streamline process
• Provider needs on plan
• Not always plan but office manager/system barriers
• State by state breakdown in medications
• Programs negotiate pricing based on contracts 
• Rebates vary 

These presentations spawned much debate over the role of ADAPs in these wraparound services. Many panelists contributed to this conversation, allowing for exchange of ideas among the diverse organizations represented at the event.

Scott Schoettes, Lambda Legal, followed with an update on the lawsuit against Blue Cross Blue Shield (BCBS) of Louisiana. His engaging presentation followed up on an emerging issue previously reported in February 2014. The issue involves a case by Lambda Legal in response to the discriminatory practices by BCBS of Louisiana in which the insurance company denied third-party payments, including Ryan White grantees. Schoettes’ presentation provided background information on this case, as well as information regarding the outcome. As it stands now, BCBS of Louisiana has agreed to continue accepting third-party payments from Ryan White funds through the end of the calendar year. The Centers for Medicare and Medicaid Services (CMS), in the meantime, issued a final interim rule mandating that the insurance giant reverse their policy. Schoettes’ presentation was enlightening and became a catalyst for great discussions about the need to stay vigilant against discriminatory practices in how the ACA is applied moving forward.

A. Toni Young, Community Education Group discussed the need for appropriate care for people living with HIV/AIDS who are transitioning back into the community after incarceration. Young’s presentation focused on the need for HIV testing in the lower-income areas of Washington D.C. She made a point to note that most infections happen in the community rather than in penitentiaries and jails. She stressed the importance of helping individuals gain access to healthcare upon release. Her agency's progressive plans include empowering these individuals to re-enter their communities, take control of their healthcare, and assist in HIV testing in their neighborhoods.

The final presentation of the day was delivered by Daniel Raymond, Harm Reduction Coalition, on the comorbidity of HIV, Hepatitis C, and substance abuse. The talk focused on leveraging ACA and ADAP to address these co-occurring issues. Key points that arose during the discussion include:

• AIDS still leading cause of death for people living with HIV/AIDS
• Co-infection treatment is coming 
• New drugs may be less complex than other older drugs (and more expensive)
• Drug rebates unclear 
• Re-infection and treatment rates
• Identify who should be tested/treated
• Completion of treatment is difficult (8 days to 2 weeks) 
• HCV treatment is usually not emergency
• Adherence assessment 
• Public health impact 
• Waiting for states to determine Medicaid benefit for HCV treatment
• Guidelines from national partners drive change and increase access
• Need for a structured formalized platform to discuss future of the Ryan White law 
• Model to assess formulary, out of pocket cost, provider network
• Minimize formulary STND needed for ADAP
• Access of social media in reaching target population 
• Follow up and more collaboration on discriminatory practices

These presentations summed up the first day of the summit. The second day entailed an in-depth conversation, whereby panelists and attendees came to the table to discuss the previous day’s topics and what can be done moving forward to ease the transition into the ACA. Some of the central concerns revolved around the need for more comprehensive data, the possibility of developing an “out-of-pocket cost calculator” for patients, and the need for greater consumer input. Further, attendees argued that as a community we must embrace and utilize social media and new technology to gather and disseminate information with regard to the ACA and ADAPs.

There was serious concern expressed over the Obama Administration’s proposal to merge Ryan White’s Part C and Part D, as well as the premature introduction of legislation to reauthorize the law. At the center of the concern over Ryan White reauthorization is funding may be on the chopping block in the future as a result of the implementation of the ACA. The general consensus among the group was that Ryan White funds are still very critical to affording healthcare, medications, and wraparound services. Everyone in attendance agreed that we must remain cautious and keep a watchful eye on this matter as the ACA rollout continues.

In closing, panelists agreed on the following:

• Need for more centralized, aggregated data
• Fresh faces and new blood- innovative and new ideas
• More holistic patient perspectives
• More access to information
• Community consensus around Ryan White is necessary to keep the funding 
• Collaboration and not duplication 
• Increases in engagement and volunteering

The ADAP Advocacy Association will use the summit as a spring board for its 7th Annual Conference, being held in Washington, DC on August 3-5, 2014.

Interested in a patient's perspective on the summit? Go to HEAL blog, "ADAP Summit on the Intersection Between ACA & ADAP"