State legislatures are working to address access issues for patients with rare cancer diagnoses who are subject to narrow provider networks under Medicaid and health insurance exchange plans.
A new law in New York and a bill advancing in California will require insurance companies that administer Medicaid and exchange plans to enter into payment negotiations with National Cancer Institute-designated Comprehensive Cancer Centers, which often are left out of networks because of cost.
In New York, Gov. Kathy Hochul (D) enacted the law in April that enables New York residents with Medicaid or exchange policies to receive in-network services from Memorial Sloan Kettering Cancer Center in New York City and other NCI-designated centers in the Empire State. In California, the state Senate unanimously approved a similar measure in May and the state Assembly is expected to pass it this week.
The California Association of Health Plans, which represents insurers including Cigna, Elevance Health, Molina Healthcare and UnitedHealthcare, initially objected to the measure. After some revisions, including the removal of a provision that would have allowed the state to set payment rates, the trade group rescinded its opposition.
These policies seek to bring advanced cancer care services in-network for patients on Medicaid or exchange plans when they receive referrals from medical oncologists. This policy also makes low-income patients eligible for clinical trials testing new treatments, genomic testing or specialized care that is only offered at certain facilities, said Dr. Joe Alvarnas, a hematologist-oncologist and lobbyist at City of Hope Comprehensive Cancer Center, an NCI-designated facility in Duarte that supports the California bill.
The California legislation would require Medicaid managed care carriers to notify enrollees with rare cancers of their right to request referrals to cancer centers. The bill is projected to cost "hundreds of thousands to low millions of dollars," according to a fiscal note from the Legislature. If passed, the law would take effect on Jan. 1.
"This reduces the number of barriers patients and families have to navigate to get to the right place at the right time. Especially for those types of cancer where the standards of care are wholly inadequate to meet the needs of the person," said Alvarnas, who is vice president of government affairs at City of Hope.
In California, nearly 180,000 people are diagnosed with cancer per year. According to the California Department of Public Health, approximately 20% of those patients will have a rare form. Medi-Cal, as Medicaid is known in the Golden State, provides health insurance for nearly one-third of the state's population. According to a University of California, Davis study, cancer patients in the safety-net program experience far worse health outcomes than those with commercial insurance. Black patients, who represent a disproportionate share of Medi-Cal enrollees, were more likely to be diagnosed with cancer at later stages.
Regulating insurance networks like this isn't new, according to Sabrina Corlette, co-director of the Center of Health Insurance Reforms at Georgetown University McCourt School of Public Policy. But there has been momentum in recent years as insurers shifted strategies.
Especially since the Affordable Care Act became law in 2010, insurers have tried to rein in costs by creating narrow networks of less-costly providers. Because the ACA forbade some other cost-cutting methods, such as rejecting applicants with pre-exisiting conditions or charging them higher premiums, insurers had to look elsewhere, Corlette said.
"Reducing what you pay to providers is one of the few tools left in the insurance company toolbox to bring their costs down," Corlette said. "If you're an insurance company and you're trying to compete in the marketplace, you really need to keep your cost structure tight so that you can offer a competitive premium. The most obvious way to do that is to have a really tight, narrow network."
Those networks may be sufficient for patients' ordinary needs but they prevent low-income people with complex cancer needs from receiving the most advanced care, even when it's their only clinical option, Alvarnas said. "When those networks are constructed, they're not constructed principally to address the very unique needs of cancer patients," he said.
Cancer patients with narrow-network Medicaid or exchange plans who need advanced care face financial and bureaucratic barriers, said Anna Howard, principal of policy development and access to and quality of care at the American Cancer Society Cancer Action Network.
"If you are in a plan where they don't cover an NCI-designated cancer center, you are probably going to have to go through an appeals process in order to get coverage, and that can be an onerous process, particularly for somebody who's dealing with cancer," Howard said. "You think about the parent whose kid has just been diagnosed with a rare cancer and is told the only way that they are going to get coverage is through an appeals and acceptance process, which may or may not work out to your favor."
Earlier this year, the Centers for Medicare and Medicaid Services updated its network adequacy standards for plans sold on the federal health insurance exchanges serving 33 states. The new rules include time-and-distance rules that require insurers to create networks that are accessible when and where their patients need them, for instance.
Large-group employer-sponsored health insurance plans aren't subject to these network adequacy standards and the rules vary among states for other types of private insurance and for Medicaid.
"The state laws on network adequacy are kind of all over the map. Some of them have fairly clear and strict time-and-distance standards or provider-to-enrollee ratio standards. Others are loose and kind of up to the carrier insurance company to decide what's a reasonable network to have," Corlette said.
In 2014, the National Association of Insurance Commissioners, which represents regulators, tried to standardize provider network regulations designed to prevent insurers from limiting provider access. But the work is unfinished and state laws don't adequately address the importance of access to a variety of specialists and sub-specialists, according to the American Cancer Society Cancer Action Network.
"Cancer is not just one disease. It's 100 different types of diseases. An oncologist that specializes in breast cancer isn't the oncologist that's going to be able to treat somebody for pediatric cancer," Howard said. "We want to make sure that as states are developing their network adequacy requirements, that they're not lumping all oncologists together, that there is a difference between medical-surgical oncologists and radiation oncologists."
The approach California and New York are taking situates patients with rare cancer similarly to those who get organ or bone marrow transplants, Alvarnas said. These policies could be a national model applied to several other diseases, he said.
"What we're accomplishing here, I think, has the potential to resonate deeply across the country," Alvarnas said. "And this idea that patients who are Medicaid beneficiaries have to be relegated to care that doesn't always fully meet their needs, that should be one of the first and easiest challenges to transcend."
