The current shifting regulatory authority from federal to state governments can have a major, positive impact on patients' access to high-quality cancer care, according to speakers at a summit sponsored by the National Comprehensive Cancer Network (NCCN) at the National Press Club in Washington, D.C.
Because of these shifting patterns, states now have greater authority over the way Americans access health care, said Robert W. Carlson, MD, CEO of the NCCN. The organization convened the summit to explore innovative ways of improving health care delivery, as well as to “highlight areas of difficulty that could contribute to growing inequities,” he noted. These problems include changes in insurance coverage resulting in short-term plans and insurance delays in treatment authorizations and approvals.
In a keynote address, Deputy Majority Leader of the Connecticut State Senate Matthew L. Lesser, a testicular cancer survivor, described his efforts on behalf of state-level health reform legislation. Lesser, who was 29 when he was diagnosed and is now 7 years cancer-free, said his experience woke him up as a legislator and patient to the realities of how patients cope with the medical, financial, social, and emotional toll of their cancer.
Calling states a “laboratory of democracy,” Lesser said, “states are really trying to do things” regardless of what happens on the national level. “I think we're going to see a lot more of that.” In the State Senate, Lesser is Vice Chair of the Public Health Committee, Chair of the Insurance and Real Estate Committee and a member of the Appropriations, Education, Energy and Technology, Judiciary, and Labor and Public Employees Committees.
In researching fertility preservation, Lesser discovered that no Connecticut insurance company would cover this procedure, which he felt was an option cancer patients should have. Lesser drafted and introduced a fertility preservation bill in the Connecticut State Senate for 4 years, and it failed. But on his fifth try in 2017, in partnership with persuasive advocate and breast cancer survivor Melissa Thompson, the bill passed. This Connecticut state bill, which received unanimous approval from the state legislature, extends fertility coverage to those who have been diagnosed with cancer or other illnesses that threaten their fertility.
Citing the power of advocacy on the state level, Lesser said, “A lot of what we're hearing about are the experiences of ordinary people.” He noted that often when one state passes legislation, other states copy it. In the past Connecticut state legislative session, Lesser helped pass paid family leave, raising the age to purchase tobacco products to 21, and the expansion of Medicaid coverage in Connecticut.
Connecticut is one of the states that has taken advantage of expanding Medicaid and receiving matching federal dollars under the Affordable Care Act (ACA), which gave states the voluntary option of expanding eligibility for Medicaid coverage, including access to the preventive and screening tests that can lead to early detection of cancer and other serious illnesses. As previously reported by Oncology Times, this expansion opportunity has had a positive impact.
For example, low-income adults in Arkansas and Kentucky, which expanded Medicaid, had significant improvements in health care access and affordability compared to low-income adults in Texas, which chose not to expand Medicaid. The lack of Medicaid expansion in Texas literally puts a lot of patients who cannot afford their care on the street, said John Cox, DO, MBA, FACP, FASCO, Medical Director of Oncology Services at Parkland Health and Hospital System, UT Southwestern, and Past-President of the Texas Society of Medical Oncology.
As of this writing, the ACA, also known as Obamacare, is being challenged in courts of law. While many Republicans in Congress want to repeal all or parts of this law, both Republicans and Democrats have stated that they want to preserve a key aspect of the ACA: protection for people with pre-existing conditions such as cancer.
Positive State Programs
Medicaid expansion and innovative state Medicaid programs are indeed improving the health of low-income patients, confirmed speakers at the NCCN Summit. Currently, more states are leveraging their administrative flexibility through waivers that allow them to occasionally depart from a federal standard.
There is an ongoing effort to give states more leeway to design their own plans tailored to their populations, said Ronald S. Walters, MD, MBA, MHA, MS, Associate Head for the Institute for Cancer Care Innovation and a breast cancer oncologist at the University of Texas MD Anderson Cancer Center, as well as Chairman of the Board of NCCN. “Care occurs at the local level,” he emphasized.
The Healthy Indiana Plan (HIP) is an example of such an innovative state program. HIP is “a consumer-driven alternative to traditional Medicaid that has provided coverage to over 400,000 Hoosiers, including many cancer patients who might not otherwise have access to health insurance,” said John R. Edwards, MD, Co-Medical Director of Indiana Blood and Marrow Transplantation in Indianapolis and Past-President of the Indiana Oncology Society. “Many cancer patients are exempt from certain innovative aspects, such as the Gateway to Work program that provides and requires job training or other education, community engagement, or work opportunities to able-bodied participants.”
He said that at this time states are better stewards of tax dollars than the federal government, which is hampered by gridlock.
Agreeing was Nina Owcharenko Schaefer, Senior Research Fellow in Health Policy at the Heritage Foundation's Institute for Family, Community and Opportunity. “We have states now fighting on these issues because of the gridlock in Washington,” she noted.
Exemption from the Medicaid work requirement via state initiatives can be essential for cancer patients, said Keysha Brooks-Coley, MA, Vice President of Federal Advocacy and Strategic Alliances with the American Cancer Society Cancer Action Network (ACS CAN), and Executive Director of the Patient Quality of Life Coalition, established by ACS CAN in 2013.
“From our perspective, work requirements cause potential harm to our patients,” she said, noting it often happens that a physician will tell a cancer patient not to work for a prescribed period of time because of specific treatment goals which “are the difference between life and death.”
Massachusetts has been a pioneer of health care access and in 2006 passed a law that served as the foundation for the ACA, said Anne Levine, MEd, MBA, Vice President of External Affairs at the Dana-Farber Cancer Institute. She noted that today 97 percent of Massachusetts residents have health insurance. In 2012, the Massachusetts legislature passed a law that focused on affordability, and it has passed bills on oral chemotherapy parity, “tobacco 21,” and restrictions on tanning salons.
New state legislative efforts include bills to require access to fertility treatments for women with cancer; banning the sale of flavored tobacco products including e-cigarettes; reforming the insurer practice of step therapy (also known as fail first), which mandates that patients start with older, cheaper treatments, and if these are ineffective, they “step” to other treatments; and ensuring access to cancer screening without co-payments.
While states have more flexibility in health care policy and delivery today, there are still many unresolved problems and challenges on the state level, said speakers. These include the potential harms of short-term, limited-duration insurance plans. These plans, which are offered to anyone on the market, are not adequate, Brooks-Coley warned.
In many cases people don't understand what they are purchasing. If they are diagnosed with cancer, they often discover that they may be potentially liable for very high costs for their care. With insurance plans purchased under the ACA health insurance exchanges, in contrast, patients can be confident that their plans are adequate, she said.
Walters agreed, noting that federal requirements for insurance plans under the ACA act as protective guard rails. “When you get sick, you have to have the guard rails in place,” he said.
Speakers at the summit also decried administrative burdens at the state level in delivering care.
“If you think the federal space is tough to operate in, just try the states,” said Clifford Goodman, PhD, Senior Vice President at the Lewin Group, a national health care and human services consulting firm.
These administrative burdens include delays due to insurance plan changes and the need for prior authorization and approvals for treatment, which can be devastating for a cancer patient, Edwards noted. He cited the day-to-day reality in oncology practice—“...changes in coverage, reassignment, delays, and authorizations and approvals remain logistically challenging and are particularly impactful to our at-risk cancer patients. Improving systemwide efficiency for HIP patients and health care provides remains a daunting challenge for complex, costly patient care.”
Agreeing on this administrative burden was Shiven B. Patel, MD, MBA, FACP, Assistant Professor in the Division of Oncology in the Department of Medicine at the University of Utah School of Medicine and an investigator at the Huntsman Cancer Institute. In addition to decrying the large amount of time spent on prior authorization for cancer patients, he criticized insurance plans that require step therapy, which he said “limits our ability to individualize care.” Patel said his institution has had to hire a pharmacist to handle the administrative demands of prior authorization and help cancer patients qualify for and get into drug assistance programs.
Regardless of how patients are covered, summit participants agreed that adequate health insurance coverage should be available to all.
“Insurance is something you hope you never have to use,” colon cancer survivor and patient advocate Lee Jones, MBA, told Oncology Times. A patient advocate member of the SWOG Cancer Research Network Survivorship Committee, the PCORI Clinical Trials Advisory Panel, and the Cancer Action Coalition of Virginia, among other groups, Jones said that too many cancer patients are heading into bankruptcy because of the high costs of cancer treatments. Even with insurance, he noted that deductibles and co-pays can place a heavy burden on patients. He agreed with Cox and Levine that the diagnosis of cancer should be a catastrophic illness which is covered in full.
Peggy Eastman is a contributing writer.