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NCCN policy summit aims to safeguard quality care despite challenging regulatory environment
By Terrell Johnson, MPA, and Alyssa Schatz, MSW
The National Comprehensive Cancer Network recently hosted an NCCN Policy Summit on the effects of state policy on access to high-quality cancer care.
The summit strove to answer how patient access to quality cancer care can be safeguarded amid increasing state regulatory authority over health care policy.
Stories and ideas shared at the policy summit emphasized that every concerned citizen can have a role in advocating for a system in which people with cancer can live better lives. That includes local lawmakers finding innovative solutions to challenging health care dilemmas; federal regulators ensuring flexibility doesn’t mean failure; patients sharing their personal struggles; and health care providers, administrators and researchers sharing data on what works and what does not.
Adding perspective to policy
Speakers agreed that one of the most important actions policymakers can take is to incorporate the perspectives of people with cancer into health care policies.
That came naturally to the keynote speaker, Connecticut state Sen. Matthew Lesser, who is deputy majority leader of the Connecticut Senate and also a cancer survivor.
The Democratic lawmaker described his own care journey and the fertility preservation laws he fought for as a result.
Lesser also explained how one of his constituents, Melissa Thompson, improved the coverage landscape in Connecticut by sharing her personal story.
Thompson was a 34-year-old single mother when she was diagnosed with advanced breast cancer. As a former Goldman Sachs analyst with an MBA from Columbia Business School, she had the financial acumen to make a compelling economic argument in favor of expanding coverage. Thanks to her account of her experience, the Connecticut State House and Senate unanimously passed legislation requiring insurance companies to cover fertility preservation treatment for people with cancer, and the law took effect in 2017.
“Melissa changed the way we talked about the issue, in part because of her tenacity,” Lesser said. “This one Connecticut resident reached out to every single member of the state Senate. She recorded a video which she [shared with] each of the 36 members of the state Senate. She went and talked to the Republican and Democratic leaders. She told her story, and she wouldn’t give up.”
Regulation waivers
Panelists also discussed how various waivers are increasingly shaping America’s health system in unforeseen ways.
Under the Affordable Care Act, states are using an exemption known as “Section 1332 innovation waivers” for various initiatives, such as reinsurance programs or allowing some Medicaid-eligible adults to enroll in Medicaid or remain in the ACA marketplace with access to premium tax credits.
Also, “Medicaid Section 1115 waivers” — a demonstration mechanism available to states for decades — have dramatically increased in use over the past decade.
States have applied for 1115 waivers to implement projects that pose both promising outcomes and potential harm to Medicaid enrollees with cancer, including work requirements, increased cost-sharing, lockout periods, delivery system reform and new models of long-term care services.
For instance, Arizona, Arkansas, Indiana, Kentucky, Michigan, New Hampshire, Ohio, Utah and Wisconsin are implementing or attempted to implement work requirements within their Medicaid programs. This may create additional paperwork burdens and coverage barriers for people with cancer and their caregivers.
At the same time, Connecticut and the District of Columbia are expanding eligibility for their Medicaid programs even beyond the federal expansion rates of 133% of the Federal Poverty Level (FPL). Connecticut extends eligibility to parents with incomes up to 155% of the FPL, whereas the District of Columbia covers parents with incomes up to 221% and other adults with incomes up to 215%. These divergent coverage policies could widen disparities and, ultimately, impact patient access to high-quality cancer care.
“You have 50 different experiments going on out there, but what’s going to happen to the patients in those states that have unsuccessful experiments?” Lee Jones, a patient advocate from Virginia, asked during the summit. “It shouldn’t be a roll of the dice where the state you live in determines the level of cancer care you end up getting.”
The idea that where you live shouldn’t determine whether you live is a guiding principle for NCCN.
The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) provide expert consensus on treatment recommendations based on the latest evidence. Those recommendations are shared free of charge for noncommercial use with cancer care providers worldwide in hopes of elevating baseline care for everyone, while also preventing overtreatment. NCCN Guidelines function as a clinical safeguard, enabling clinicians to apply circumstantial context and clinical judgment to care scenarios while protecting evidence-based treatment thresholds.
Many speakers at the NCCN Policy Summit supported the idea of federal policies that similarly ensure guardrails are in place around health care access, possibly by utilizing professionally created resources like the NCCN Guidelines as a roadmap for acceptable care.
Some panelists presented the idea that states can function as a laboratory for innovation, suggesting state governments should have freedom to innovate new approaches that fit the needs, philosophies and histories of their unique populations. Sometimes those ideas work so well, they become models for the entire country.
However, to safeguard against failure, some panelists indicated they would like to see the federal government establish regulations that prevent the enactment of any policies that would result in reduced access to quality care.
“If you’re going to put states in charge of innovation and have the proper guardrails around that, then give them a chunk of money to manage their health care and let them figure out what best serves the needs of their population,” said Ronald S. Walters MD, MBA, MHA, MS, professor of clinical medicine in the department of breast medical oncology and associate vice president of medical operations and informatics at The University of Texas MD Anderson Cancer Center, as well as chair of NCCN’s board of directors. “I know diabetes, heart failure [and similar conditions] are common to everybody, but there might be some unique needs that states have [to which] they really would like the ability to devote special funds. ... It makes a lot of sense [to provide states with federal block grants] as long as there’s a guarantee that it will be utilized in a fashion to improve the health of their population.”
About the summit
The NCCN Policy Summit took place June 27 at National Press Club in Washington. It included an introduction from NCCN CEO Robert W. Carlson, MD, and a keynote address from Sen. Matthew Lesser, deputy majority leader of the Connecticut State Senate. It also featured the following panelists: Joel Beetsch, PhD, of Celgene; Keysha Brooks-Coley, MA, of American Cancer Society Cancer Action Network; Jennifer Carlson, of The Ohio State University Wexner Medical Center; John Cox, DO, MBA, FACP, FASCO, of Parkland Health & Hospital System and UT Southwestern Medical Center; Bob Donnelly, MPP, of Johnson & Johnson; John R. Edwards, MD, of Indiana Blood & Marrow Transplantation; Lee Jones, of Cancer Action Coalition of Virginia; Anne Levine, MEd, MBA, of Dana-Farber Cancer Institute; Shiven B. Patel, MD, MBA, FACP, of Huntsman Cancer Institute at The University of Utah; Nina Owcharenko Schaefer, of The Heritage Foundation; and Ronald S. Walters, MD, MBA, MHA, MS, of The University of Texas MD Anderson Cancer Center and chair of NCCN’s board of directors. The discussion was moderated by Clifford Goodman, PhD, senior vice president of the Lewin Group. To learn more, visit NCCN.org/policy, and join the online conversation with the hashtag #NCCNPolicy.
For more information:
Terrell Johnson, MPA, is a policy and advocacy fellow with NCCN. He can be reached at NCCN, 3025 Chemical Road, Suite 100, Plymouth Meeting, PA 19462; email: tjohnson@nccn.org.
Alyssa Schatz, MSW, is policy and advocacy director for NCCN. She can be reached at NCCN, 3025 Chemical Road, Suite 100, Plymouth Meeting, PA 19462; email: schatz@nccn.org.
Disclosures: Johnson and Schatz report no relevant financial disclosures.