By Letisia Marquez
The California State Assembly has unanimously passed the Cancer Patients Bill of Rights, joining the state Senate in adopting this resolution. The Cancer Patients Bill of Rights, which is the first of its kind in the nation, calls for six rights that every cancer patient in California should have from the moment of diagnosis to ensure they have access to the care that they need. The campaign was supported by Cancer Care Is Different, a coalition-based campaign effort led by City of Hope to improve patient access to advanced cancer care in California.
The Centers for Disease Control and Prevention list cancer as the second-leading cause of death in California. Thanks to extraordinary medical breakthroughs, a cancer diagnosis is no longer a death sentence for many patients. But too many Californians cannot benefit from these lifesaving treatments due to one-size-fits-all policies that prevent access to the cancer care they deserve. As a result, cancer patients in California are currently divided between the “haves” and “have nots”: Californians insured with Medi-Cal suffer much worse-than-average outcomes for several cancer diagnoses, including lung cancer, rectal cancer, colon cancer and breast cancer.
Cancer Is Different
Providing health care for cancer is different than for any other disease. Cancer is now recognized not as one condition, but as multiple conditions. With the emergence of genomic sequencing technology, cancer may soon be viewed as potentially hundreds of conditions. That means that cancer is a highly personal disease that differs from individual to individual.
However, hospitals and physician groups have widely varying levels of experience in diagnosing and treating the various types of cancer, much less how those types may manifest uniquely in individuals. Community oncologists can see up to 30 patients in a day, each with a different kind of cancer. It is simply impossible to keep up with the pace of innovation across the entire cancer care spectrum.
“The need for access to the proper expertise is heightened by the reality that cancer is a rapidly evolving field, one that requires ongoing access to the most recent therapeutics and technology. The consequences of limited or delayed access to state-of-the-art diagnostics are significant, leading to misdiagnoses that can often mean unnecessary exposure to toxic chemotherapy agents, suffering or avoidable death,” said Joseph Alvarnas, M.D., a hematologist-oncologist who serves as vice president for government affairs at City of Hope.
Narrow networks assume that for each cancer patient, the needed expertise is ubiquitous. This may be the case for some common, early stage cancers. But, for other rare or complex cancers, such as acute leukemia or other blood cancers that require highly specialized interventions, a limited network may deny a patient access to the expertise available at a comprehensive cancer center. Many of these patients lose their lives or live a shorter lifetime of chronic illness, pain and suffering. When it comes to cancer survival, access to specialists may be everything.
Access To Research Helps Patients
Cancer is an evolving field, one that requires ongoing research and access to the most recent data and technology. Many times, the best treatment choice for a cancer patient is a clinical trial that is offered in limited locations. When it comes to rare and complex cancers, patients need and deserve immediate access to providers who offer such clinical trials.
When patients with rare or complex cancers have access to care at a comprehensive cancer center, they often experience better outcomes at lower costs. Research has documented significant differences in outcomes, including survival, if a patient is seen at a community hospital versus a National Cancer Institute-designated comprehensive cancer center.
Ensuring access to promising new innovations, experts specializing in various cancer types and advances in personalized, precision cancer treatments are all critical components in improving outcomes and saving lives. The Cancer Patients Bill of Rights outlines six key principles, proclaiming that cancer patients have a right to:
● Understand fully their diagnosis and be informed about treatment options in culturally appropriate and understandable languages
● Transparent and timely processes that ensure access to contracting oncology specialists, diagnostic testing and accurate interpretations of those tests
● Contracting cancer subspecialists who have expertise in the treatment of their subtypes of cancer when complex decisions are needed
● Medical treatments for pain management and other services that support their overall health
● Contracting National Cancer Institute-designated comprehensive cancer centers and leading academic medical centers for the management of complex cancers that require multiple experts or high-risk or emerging therapies
● Relevant clinical trials, medical research and cutting-edge innovation, including evidence-supported precision medicine
“Cancer patients need appropriate, timely and equitable access to expert care,” Sen. Susan Rubio said. “That’s why it was important for the Legislature to vote for and pass the California Cancer Patients Bill of Rights. There have been remarkable advances in science creating more effective treatments and cures, and it’s unconscionable that people, particularly those most vulnerable and in disadvantaged communities, suffer from a lack of access to these saving medications. I am proud to be part of the work needed to address these barriers to access and help build a healthier California.”
According to a September 2020 survey conducted by Public Policy Polling, 82% of Californians believe it is very important for people with cancer to have access to specialized expertise or treatment regardless of their insurance plan limitations.
More information about the Cancer Patients Bill of Rights, along with other resources and patient stories, can be found at cancercarediff.org.