Washington Representatives Retreat Helps Set NHC’s 2020 Policy Priorities


By Maddie Mason, Associate, Policy

The National Health Council’s (NHC) annual 2019 Washington Representatives Retreat (WRR) took place last week in Annapolis, MD. This conference is designed to give NHC member public policy and government relations professionals the opportunity to discuss major policy developments, provide input on the NHC’s 2020 priorities, and network with colleagues. The Retreat had more than 70 senior government relations and health policy staff from NHC membership organizations in attendance.

Here is an overview of what was discussed at the Retreat:

NHC: 2019 Accomplishments & 2020 Policy Matrix

The NHC’s Vice President, Policy & Government Affairs, Eric Gascho, reviewed the policy advocacy accomplishments of the patient community. Gascho specifically alluded to the following accomplishments:

  • Ensured access to care for millions of seniors and the decrease on the overuse of step therapy;
  • Maintained the Six Protected Classes in Medicare Part D plans;
  • Pushed Congress to create a maximum out-of-pocket (OOP) costs limit for Medicare Part D, including creating a smoothing mechanism;
  • Provided continued leadership to reauthorize the Patient Centered Outcomes Research Institute (PCORI); and
  • Offered opportunities for NHC members to help the NHC draft comments on the FDA’s second Patient Focused Drug Development (PFDD) draft guidance.

WRR attendees also had the opportunity to provide feedback on the NHC’s proposed 2020 Policy Matrix. The 2020 Policy matrix will be released to members pending Board approval.

Patients over Paperwork Initiative

Mary Green, MD and Leslie Flaherty from the Centers for Medicare and Medicaid Services (CMS) discussed CMS’s Patients over Paperwork Initiative. This program is designed to reduce administrative burden on providers, allowing them to spend more time and resources delivering care. Dr. Green and Flaherty emphasized the importance of getting input from the external community. CMS wants to determine which of their rules interfere with certain processes and wants to get the patient community involved in solving this issue. One issue that was discussed at length was streamline the prior authorization process to ensure patients receive appropriate care in a more timely manner.

PCORI Reauthorization

Andrew Hu from PCORI, gave an overview of the current status of PCORI reauthorization and discussed the bipartisan bill that recently was introduced. It is currently unclear if a long-term deal will be done, but reauthorization was included in the most recent continuing resolution. The hope is that strong bipartisan support in both the House and Senate will push things forward. Currently, PCORI is not funding any new research projects in 2020 and beyond due to the uncertainty of reauthorization. For more on NHC’s involvement in PCORI reauthorization, read our blog.

Coverage and Reimbursement for New and Innovative Therapies

Michelle Drozd, Gilead Sciences; John Glasspool, MIT Center for Biomedical Innovation; and Vadim Lubarsky, Novartis, participated in a panel moderated by Eleanor Perfetto, PhD, NHC.

The panelists all discussed the promise of new types of therapies and the challenges of getting them to patients. While these new therapies have changed the treatment course for many people, they come at high costs, which necessitates innovative strategies to facilitate access.

Fireside Chat on Drug Pricing: HHS Perspective

John Brooks, JD, US Department of Health and Human Services (HHS), sat down with NHC’s Eric Gascho to discuss HHS’ perspective on drug pricing. Brooks claimed HHS is dealing with issues such as transparency, interoperability, and physician burden reduction. HHS is also looking into areas such as opioids, initiatives to end HIV, and financing and improving the delivery of care in all health areas.

When Gascho asked about the Part D OOP cap for Medicare Part D, Brooks said he believed it made sense for patients, and he is glad to see that it has bi-partisan support.
Brooks made it clear that HHS is determined to get a drug pricing deal done, and that for this to happen it must have bipartisan support.

Overview of Prescription Drug User Fee Act (PDUFA) & PDUFA VII

Gascho gave a brief overview of the history behind PDUFA and reminded the audience that stakeholder meetings for PDUFA VII will begin next year. The NHC has begun to meet with patient groups and companies in membership as well as preliminary discussions with the FDA. The NHC’s priority areas include standard core clinical outcomes assessments (COAs), real-world evidence (RWE) pilots, digital clinical trials, knowledge management system, and increasing FDA staff capacity.

Best Practices in Patient Focused Drug Development (PFDD)

Adam Amdur, American Sleep Apnea Association; Steve Roberds, PhD, Tuberous Sclerosis Alliance; and Pat Wildman, Lupus Foundation of America; participated in a panel moderated by Elisabeth Oehrlein, PhD, NHC.

The panelists each discussed their organization’s unique experiences with PFDD. Wildman stressed that there are many ways we can bring patients into the drug development process, and it is important to remember that not all types of the same disease are the same, so it is a community effort to find the voice of the patient.

When asked about how to engage the patient community, Dr. Roberds said it is important to start by engaging the FDA because they are interested in listening and are very receptive to the patient community.

Coverage of Durable Medical Equipment (DME)

Alexandra Bennewith, United Spinal Association and Peter Thomas, JD, Powers, Pyles, Sutter & Verville discussed coverage of durable medical equipment on a panel that was moderated by Jennifer Dexter, Director, Policy at the NHC.

Thomas discussed how many changes to coding, coverage, and payment have been made in this category, which has caused a lot of challenges. However, this is not a top priority issue for CMS, so many of the problems in this category are not being fixed.

Bennewith talked about wheelchair coverage and how various types of wheelchair features are coined “accessories,” which leads to them not being covered.

Surprise Medical Billing

Manuel Bonilla, American Society of Anesthesiologists and Claire McAndrew, Families USA participated on a panel that was moderated by Anna Hyde, Arthritis Foundation.

McAndrew discussed the devastation that surprise medical bills place upon families. This is not a new problem and has caused a huge issue for health care access and affordability.

Even planned medical visits to an in-network provider can consist of a surprise bill. She discussed the need to focus on policy solutions that will not increase premiums.

Bonilla claimed that while 90% of anesthesiologists’ bills are in-network, there are still some bad actors, especially in urban areas. It is important to hold insurers accountable, and work on increasing network adequacy.

Seven Unexpected and Counterintuitive Lessons from my 25 Years of Congressional Advocacy

Christopher Kush, Soapbox Consulting, ended the first day of the retreat with a presentation on how to make the most out of congressional advocacy opportunities. Kush discussed the importance of strategically planning advocacy efforts so that they are most effective. He gave examples of innovative approaches to advocacy conferences to increase attendance and impact.

Social Determinants of Health & Health Equity

Merrill Friedman, Anthem and Lauren Shweder Biel from DC Greens sat on a panel that discussed social determinants of health that was moderated by the NHC’s Jennifer Dexter.
Friedman and Biel discussed how social determinants of health negatively impact the health conditions. Biel specifically focused on food insecurity and how it leads to health conditions such as diabetes and heart disease. The two panelists gave an overview of their organizations’ partnership to increase access to healthy food.

Keynote Presentation: A View from the Press Gallery

Adam Cancryn from POLITICO was the Retreat’s keynote speaker. Cancryn informed the audience that his main focuses have been the status of the ACA, opioids, e-cigarettes, drug-pricing, surprise medical billing, drug importation, and the International Pricing Index (IPI).

Cancryn emphasized the importance that patient advocates have in shaping narratives. He shared the importance of forging connections with the reporters covering the issues advocates care about because a story is more impactful with a personal touch. Hard data is important, but the context around the data, including patient stories, is what policymakers care about. This adds compassion to the stories told by health care reporters.

Affordable Care Act (ACA) Marketplaces – Challenges and Opportunities

Jeremy Sharp, Waxman Strategies, and Rodney Whitlock, PhD, McDermott+Consulting, participated in the final panel of the retreat that was moderated by Kelly Brantley, Practice Director at Avalere Health.

Brantley asked Sharp and Whitlock questions regarding the current status of the ACA and what should be the role of patient organizations. Sharp said it is important to keep the pressure on the state level to ensure there are adequate protections. He also informed patient organizations that they need to know what their priorities will be in a post-ACA world, depending on a potential upcoming Supreme Court ruling.

Brantley also shone light on how coverage of pre-existing conditions is important to everyone in the room and asked how it should be explained to the average voter. Sharp said his policy on this is that insurance companies should not be allowed to determine coverage cost or access based on any pre-existing condition. Whitlock said not covering someone with a pre-existing condition isn’t an option in 2019.