NCCN Convenes Summit to Address Evolving Role of State Health Policy in Cancer Care

On June 27, 2019, NCCN convened a policy summit at the National Press Club. The NCCN Policy Summit: The State of Cancer Care in America: The Impact of State Policy on Access to High Quality Cancer Care explored the role of federal waivers, shifting regulatory authority, trends in cancer care policy at the state level, and other ways that state policy is having a growing impact on access to high-quality cancer care. The summit included a keynote from the Deputy Majority Leader of the Connecticut State Senate, Matthew Lesser, a cancer survivor, who described his work on state-level health reform legislation.

“Ongoing changes to the balance between federal and state power over healthcare policy can have a significant impact on the way people in America access healthcare, now and in the future,” said Robert W. Carlson, MD, Chief Executive Officer, NCCN. “States have more flexibility than ever before in how they structure their insurance markets, but implementation is highly variable and it’s not clear how patients with cancer fare in some of these novel approaches. We convened this summit to explore some of the innovative concepts for improving healthcare delivery, and also to highlight areas of difficulty that could contribute to growing inequities.”

The first panel focused on an overview discussion of the various tools the federal government is allowing states to experiment with, including waivers, CMS guidance, work requirements, premium contributions, and block grants. Speakers also described specific initiatives that are taking place within various states.

“The Healthy Indiana Plan (HIP) is a consumer-driven alternative to traditional Medicaid that has provided coverage to over 400,000 Hoosiers, including many patients with cancer who might not otherwise have access to health insurance,” said John R. Edwards, MD, Indiana Blood and Marrow Transplantation. “Many patients with cancer are exempt from certain innovative aspects, such as the Gateway to Work program which provides and requires job training or other education, community engagement or work opportunities to able-bodied participants. Yet changes in coverage, reassignment, and delays in authorizations and approvals remain logistically challenging and are particularly impactful to our at-risk patients with cancer. Improving systemwide efficiency for HIP patients and healthcare providers remains a daunting challenge for complex, costly patient care.”

The second panel drilled down further into what is working well for individual states and where potential problem areas may arise. Speakers were particularly concerned with how an individual’s ZIP code can impact the health services they have access to, and whether the so-called “birth lottery” can result in widening disparities between states.

“Massachusetts has been at the forefront for ensuring broad coverage for its residents. In 2006, Massachusetts passed a law that served as the foundation for the Affordable Care Act (ACA) that passed 4 years later. 97% of state residents now have health coverage,” said Anne Levine, MEd, MBA, Dana-Farber Cancer Institute. “After achieving near universal coverage, in 2012 the state passed another sweeping bill that focused on affordability. The Massachusetts legislature has long-supported public health and cancer control priorities and has passed bills on oral chemotherapy parity, tobacco 21, and restrictions on tanning salons. During the current legislative session, the state is considering bills to require access to fertility treatments for women with cancer, ban the sale of flavored tobacco products including e-cigarettes, reform the insurer practice of Fail First (also known as step therapy), and ensure access to cancer screening without copayments.”

“Texas, and multiple other states, have viewed the idea of expanding Medicaid under the ACA through a budgetary lens,” explained John Cox, DO, MBA, Parkland Health and Hospital System, UT Southwestern. “The greatest policy issue that states control is the philosophical decision regarding the role of state and local governments in ensuring access to care to the residents of the respective states. The fear of budgetary consequences has resulted in restricting access to routine and specialty healthcare rather than expanding it.”

Several panelists also noted the role healthcare providers and their patients can play in advocating for policies that can affect their lives.

“Provider, researcher, and physician involvement in advocacy activities creates a catalyst for change, and it is important that they know how the work they do every day can make an impact in the legislative arena,” said Jennifer Carlson, OSU Wexner Medical Center. “Making sure our policy makers and other community leaders understand how state legislative and regulatory reform efforts impact access to quality healthcare is crucial. By demonstrating the values of cutting-edge research, ground-breaking initiatives, and exemplary patient care, advocates can influence those reform efforts.”

Efforts to keep healthcare affordable across the continuum of care were addressed multiple times throughout the summit. Panelists voiced concerns over narrow network health plans as well.

“Pricing and healthcare plan structures can make it difficult for many of our patients to access cancer therapy,” said Shiven B. Patel, MD MBA, Huntsman Cancer Institute at the University of Utah. “Changes in policy that ultimately improve the accessibility of cancer treatments for our patients will make a dramatic difference in their outcomes.”

The panels were moderated by Clifford Goodman, PhD, The Lewin Group, and included the following additional speakers:

  • Joel Beetsch, PhD, Celgene
  • Keysha Brooks-Coley, MA, American Cancer Society Cancer Action Network
  • Bob Donnelly, MPP, Johnson & Johnson
  • Lee Jones, Patient advocate
  • Nina Owcharenko Schaefer, The Heritage Foundation
  • Ronald S. Walters, MD, MBA, MHA, MS, The University of Texas MD Anderson Cancer Center, Chair, NCCN Board of Directors

The next NCCN Policy Summit will take place on September 12, 2019. It will focus on various stakeholder perspectives for defining, paying for, and ultimately measuring quality cancer care.

Visit to learn more, and join the conversation online with the hashtag #NCCNPolicy.

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