A new California law promises access to high-quality cancer care for underserved communities. Although much work still needs to be done, advocates of the legislation hope that it will bring much-needed changes to patient care for complex cancers—including hematologic malignancies.
Signed into law by California Gov. Gavin Newsom in September 2022, the California Cancer Care Equity Act (SB 987) went into effect in January 2023. It addresses the issue of access disparity for patients enrolled in Medi-Cal, the state’s Medicaid program, who have been diagnosed with complex cancers. The law seeks to improve access to patient care, outcomes (survival), and experience by enhancing referrals to designated specialty centers.
Similar legislation has been passed in New York and is being considered in other states. In this legislative update, Blood Cancers Today explores the background and implications of this groundbreaking law and interviews some of the advocates and medical professionals involved in developing it.
Disparities in Access to Health Care
Approximately 84 million people in the United States are enrolled in a state Medicaid program, which serves children, low-income individuals and families, and individuals with disabilities.1 For many enrollees, the Medicaid program is their only source of long-term health coverage, with the majority lacking access to other affordable health insurance.2
What happens when patients who are enrolled in Medicaid are diagnosed with a complex cancer such as multiple myeloma (MM)? In theory, the patient would work with a team of health care professionals to develop a treatment plan and receive supportive care.
In practice, however, these patients face a daunting array of challenges, including limited access to care and support services, affordability of treatment, limited health coverage, and difficulty navigating the system to find providers and get treatment authorizations. Lacking financial resources, they may be unable to afford transportation (especially in rural areas), child care, and other daily living needs, which can make it difficult for them to attend appointments and follow through with treatment plans.
Joseph Alvarnas, MD, a hematologist-oncologist and Vice President of Government Affairs at the City of Hope, explained that certain barriers to care are universal.
“If you look at barriers created by social determinants of health—having gas money, issues of health literacy, poverty, geographic distance from centers with appropriate expertise—I think those kinds of issues are found throughout the country,” he said.
Even in California, known for progressive health care policies and its aggressive implementation of the Affordable Care Act and expansion of Medi-Cal, patients in underserved populations still face significant hurdles to care.
An unintended consequence of the state’s expansion of universal health care coverage was the creation of narrow provider networks that were not equipped to handle complex cancer cases. Patients and families found themselves facing numerous barriers and battles just to access the care they needed, Dr. Alvarnas explained.
“What we found was that you could have coverage but not actually have access to care,” said Dr. Alvarnas. “The challenge was that as Medi-Cal expanded, one of the things that it used as a means of controlling costs was the managed care model. Those [models] weren’t designed with cancer in mind, and one of the unintended consequences is that, in fact, you create networks that may have no one with particular expertise in leukemia, or in very advanced and refractory cancers, or in genomics.”
California Cancer Patients Bill of Rights
The origin of SB 987 lies in the California Cancer Patients Bill of Rights, which was passed in 2021. Sponsors of the bill called it “a first of its kind in the nation.”3 The bill enumerated six core patient rights, including access to cutting-edge treatments and clinical trials and the right to contract with top cancer centers.4
Although both houses of the California State Legislature unanimously approved the Cancer Patients Bill of Rights resolution in 2021, it carried no force of law.
SB 987: California Cancer Care Equity Act
Enter SB 987. At the heart of SB 987 is the issue of disparity in cancer outcomes in cases of complex diagnoses, which include hematologic malignancies such as acute leukemia, non-Hodgkin lymphoma, or MM for communities of color and low-income populations. The bill ensured that underserved communities in California have access to the care they need, regardless of whether the cancer is newly diagnosed, relapsed, or refractory.
“SB 987 was conceived to figure out a way in which those core principles could translate into meaningful, actionable change for the most vulnerable members of our society,” Dr. Alvarnas said.
Prior to the passage of SB 987, patients on Medi-Cal had no access to high-quality care, according to Ernie Davis, Regional Director of Government Affairs at the Leukemia & Lymphoma Society (LLS).
“Blood cancers are very complex cancers, and access to high-quality cancer care, if you are an individual on Medi-Cal prior to the passage of this legislation, did not exist,” Mr. Davis said.
One in three Californians is enrolled in Medi-Cal, and Mr. Davis estimates that 70% of those enrollees are minorities.
“When you’re talking about the dynamics of Medi-Cal, you’re talking about public health coverage that covers one in three Californians, which is huge, and it’s also the primary insurance provider for individuals between the ages of zero to 18 years.”
Mr. Davis hopes that the law will give access to high-quality cancer care to those who were previously lacking it. A big part of making care more accessible to these patients is referrals, a crucial provision of SB 987.
The law asks medical plans caring for low-income patients to make a good-faith effort to contract with at least one designated specialty center such as a United States National Cancer Institute (NCI)-designated Comprehensive Cancer Center or a qualifying academic cancer center. It also requires Medi-Cal managed care plans to notify all enrollees when they are diagnosed with cancer of their right to request a referral to a specialized cancer center. Mr. Davis said that LLS is able to help patients with this process.
“Our hope is [that] through the LLS network, folks can call in and ask for advice when they get a blood cancer diagnosis,” said Mr. Davis, adding that when patients from California contact the LLS network, they’ll be directed to the legislation to make those patients aware that they now have access—and the right to request a referral—to a specialized cancer center in California if they’re a Medi-Cal recipient.
Although the bill has been passed, Mr. Davis estimates that implementation will take six months to a year as there are administrative and back-end processes that need to be completed.
LLS helped pass similar legislation in New York, and Mr. Davis became involved with the California bill after working on the New York bill. The organization is planning for similar legislation in other states but is still assessing which states would be a good fit.
The Road Ahead
“This bill is important, but its impact on the state of California is still uncertain,” said Thomas G. Martin, MD, Associate Editor of Blood Cancers Today and Clinical Research Director of Hematologic Malignancies at the University of California, San Francisco Helen Diller Family Comprehensive Cancer Center. “The bill aims to increase access to health care for managed Medi-Cal patients who may not have the greatest access to care. It’s important to provide care to all patients, regardless of where they live or their socioeconomic background.”
Dr. Martin explained the need for the law to provide resources and financial support to ensure that these services are available to patients in all areas of California, not just the big cities.
“I think it’s a good bill to enhance diversity in care for these patients, but how it will actually work is a challenge,” he said. “There are questions about where patients would be referred and how they would get there, especially for those who live a long distance from an NCI-designated center. We need to make sure that treatments, including clinical trials, are available to all patients, including those on Medi-Cal plans. But we also need to have resources to help patients get there, as they have to come back recurrent times, and that can be financially challenging.”
SB 987 is still a first step—if only a small step—in the right direction, according to Dr. Alvarnas.
“SB 987, I think, is a win, but it’s an incremental win. It’s the first step. I expect us to do a lot more work to move this forward—a lot more work,” he said.
Leah Sherwood is the Managing Editor of Blood Cancers Today. Cecilia Brown, Assistant Editor, contributed to the reporting.
- October 2022 Medicaid & CHIP enrollment data highlights. Medicaid.gov. Accessed February 10, 2023. https://www.medicaid.gov/medicaid/program-information/medicaid-and-chip-enrollment-data/report-highlights/index.html
- Rudowitz R, Garfield R, Hinton E. 10 things to know about Medicaid: setting the facts straight. Kaiser Family Foundation. March 6, 2019. Accessed February 10, 2023. https://www.kff.org/medicaid/issue-brief/10-things-to-know-about-medicaid-setting-the-facts-straight/
- Marquez L. California assembly passes Cancer Patients Bill of Rights. City of Hope. August 19, 2021. Accessed February 10, 2023. https://www.cityofhope.org/breakthroughs/california-assembly-approves-cancer-patients-bill-of-rights
- California legislature passes first-in-the-nation Cancer Patients Bill of Rights resolution by Senator Susan Rubio. Senator Susan Rubio. August 30, 2021. Accessed February 10, 2023. https://sd22.senate.ca.gov/news/2021-08-30-california-legislature-passes-first-nation-cancer-patients-bill-rights-resolution