'There's a gulf between coverage and real access'

Cancer is the second leading cause of death in California, behind only heart disease. This year alone, the state will tally an estimated 189,000 new cancer cases and close to 61,000 deaths.

Yet while patients often need specialists, treatments and the chance to participate in clinical trials, that access is not equitable throughout the state. It typically depends on where they live, and sometimes on their health insurance.

Lower-income cancer patients — and especially those in rural places — tend to fare worse. Studies have shown that patients with Medi-Cal, the health insurance program for low-income residents, are less likely to get the recommended treatment and have lower cancer survival rates compared to people with private insurance.

This disparity is at the crux of a California bill recently signed into law by Gov. Gavin Newsom that supporters say will make it at least a little easier for Medi-Cal patients to access cancer subspecialists, treatments and clinical trials.

The new law, which goes into effect in January, requires Medi-Cal insurance plans to "make a good faith effort" to contract with cancer centers recognized by the National Cancer Institute — which often have access to the latest treatments — or other qualifying cancer centers.

Authored by Democratic Sen. Anthony Portantino of Glendale, it was originally drafted to mandate that Medi-Cal plans add at least one of these cancer centers to their provider networks, but negotiations resulted in a scaled-back version, only requiring health plans to try to add a cancer center.

The law also requires Medi-Cal plans to notify enrollees with complex cancers about their right to request a referral to any of these centers, even if it's out of their plan's network. Whether a patient can be treated at one of these centers, however, depends on whether the plan and the out-of-network provider can hash out a payment deal. This referral notification, supporters say, is critical: Patients can't ask for something they don't know is an option.

Supporters say that even if limited, this law will be an important step in helping low-income cancer patients get specialized care.

"I think making incremental change has the ability to save lives and that's what we're trying to do here," Portantino said.

Too often patients from underserved communities arrive at these specialized cancer centers very late after their diagnosis, said Dr. Joseph Alvarnas, a hematologist-oncologist and vice president of government affairs at City of Hope, one of eight California cancer centers with a National Cancer Institute designation, and a sponsor of the law.

"The conversation begins with 'If I could only have gotten here sooner', or 'My family and I fought tooth and nail to get here,'" he said.

Alvarnas said that historically, City of Hope used to see more Medi-Cal patients, but that changed as the state has largely moved its Medi-Cal program from a fee-for-service model (in which patients could see any provider who accepted Medi-Cal and the state paid providers for each service rendered) to managed care (considered a more cost-effective model in which the state pays health insurance companies a fixed amount per enrollee).

"In managed care, part of the way that model works is it includes narrower clinician networks and more limited hospital choices," Alvarnas said. "If you have high blood pressure or you've got a condition that can be cared for by many types of doctors, that's an OK model.

"But when it comes to cancer care, your network of clinicians may not have an expert in leukemia or relapsed myeloma."

Hospitals sometimes must send some of their sickest patients to cancer centers like City of Hope – as was the case for Patrick Nandy of Whittier. In 2008, during his senior year of college, he was diagnosed with acute lymphoblastic leukemia, a cancer of the blood and bone marrow that can progress very quickly. Nandy said that when oncologists at St. Jude Medical Center could no longer treat him, he was transferred to City of Hope, where he participated in a chemotherapy clinical trial and a cord blood stem cell transplant.

"I think about how lucky I am," Nandy said. "Doctors said two more weeks and I probably would have been gone."

These are the types of therapies that should be available to all patients with complex or aggressive cancers, but that's not always the case, Alvarnas said.

A 2015 analysis by the University of California, Davis, found worse outcomes for cancer patients with Medi-Cal compared to people with other types of insurance. Among some of the findings: 39% of breast cancer patients on Medi-Cal were diagnosed at an early stage compared to 61% of those who were privately insured.

The study also found Medi-Cal patients diagnosed with early stage lung cancer had a 48% five-year survival rate, lower than the 65% five-year survival rate for those with private insurance. Medi-Cal patients also were less likely to receive the necessary therapies or treatments for several cancer types.

The law will apply to people with rare or complex cancers, including advanced stage brain cancer, lung cancer, colorectal cancer, leukemia and lymphoma, among others, Alvarnas said. The sought- after treatment and research centers include City of Hope, University of California Comprehensive Cancer Centers, Stanford Cancer Institute, as well as a number of Kaiser Permanente sites and Cedars Sinai's Cancer Institute.

While the law as passed had no registered opposition, it was watered down during negotiations involving providers, health plans and the California Department of Health Care Services, which oversees the Medi-Cal program.

Health insurance plans initially opposed Portantino's bill because requiring plans to contract with centers, they warned, comes with new administrative hurdles that could disrupt or delay patient care.

Linda Nguy, an advocate with the Western Center on Law and Poverty, said her organization withdrew its support after the bill was narrowed. "Actually requiring plans (to contract with cancer centers) — that would have brought some meat to the table," Nguy said. "From our understanding, plans already make efforts to contract with as many providers as possible, but it comes down to a reimbursement issue."

Medi-Cal, which covers about a third of Californians, pays providers a lower rate than other insurance types. While lower reimbursement rates make the program more cost efficient, low payments can deter providers from participating in Medi-Cal.

The debate over cancer care equity shows the complexities of achieving true access even in a state that has expanded insurance coverage to more people. California is scheduled to become the first state in the country to offer Medi-Cal coverage to all income-eligible people regardless of immigration status. Last week, Gov. Gavin Newsom's office announced that 286,000 undocumented people aged 50 and older had started to receive comprehensive coverage in May. In 2024, California will open the Medi-Cal program to approximately 700,000 more people ages 26 to 49.

"The state has worked very hard over the last decade to improve health care coverage," Alvarnas said. "The issue, though, is there's a gulf between coverage and real access, because there is also a focus by the state to make sure that health care costs are somewhat controlled."

While the bill fell short of what supporters initially aimed for, the work to make cancer care more easily accessible will continue, said Autumn Ogden-Smith, director of state legislation for the American Cancer Society Cancer Action Network, another sponsor of the bill. For instance, how to more easily get a patient into one of these cancer centers if they don't live nearby is a priority, she said.

"If you pull up a map, you'll see these centers tend to cover certain areas: San Diego, Los Angeles, San Francisco, Davis-Sacramento," Ogden-Smith said. "We're going to have to focus on how we get the people in Northern California and in the middle of the state" to cancer centers.

Ana covers health policy and the COVID-19 pandemic. She joined CalMatters in 2020 after four years at Kaiser Health News. She started her reporting career at McClatchy's Merced Sun-Star. Her work has also appeared in The Washington Post, the Los Angeles Times, USA Today and many other state and national news outlets.