Protecting the rights of cancer patients

On August 30, 2021, California adopted the Cancer Patients’ Bill of Rights, the first legislation of its kind in the United States. This legislation gives cancer patients inalienable rights to help them achieve access and equity in their care.

Stanford Healthcare sponsored this legislation, and the Stanford Cancer Institute (SCI)?Office of Cancer Health Equity?(OCHE) is excited about what it could mean for the communities we serve. To gain insight into the legislation, we spoke with SCI leader Alyce Adams , PhD, Stanford Medicine Innovation Professor in the Stanford Department of Health Policy, Epidemiology, and Population Health, and by courtesy, Pediatrics, and associate director of the SCI-OCHE.

The six components of the Cancer Patients’ Bill of Rights

The?Cancer Patients’ Bill of Rights?outlines the following six rights for people living with cancer:

1. Cancer patients have a right to understand fully their diagnoses and be informed about treatment options in culturally appropriate and understandable languages.
2. Cancer patients have a right to transparent and timely processes that ensure access to contracting oncology specialists, diagnostic testing, and accurate interpretations of those tests.
3. Cancer patients have a right to contracting cancer subspecialists who have expertise in the treatment of their subtypes of cancers when complex decisions are needed.
4. Cancer patients have a right to medical treatments for pain management and other services that support their overall health.
5. Cancer patients have a right to 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.
6. Cancer patients have a right to relevant clinical trials, medical research, and cutting-edge innovation, including evidence-supported precision medicine.

The legislation aims to improve cancer patients’ access to specialists and innovative treatments.

Adams says, “There’s the acknowledgment that cancer is not like everything else in the sense that every cancer is a different cancer, so it’s not enough to assume that a specialist who the patient has access to via insurance knows their disease best. One of the goals of the bill is making sure that patients have access to people who actually understand their disease best.”

Adams discusses the need for cancer patients to have guaranteed access to National Cancer Institute (NCI)-designated cancer centers, such as the Stanford Cancer Institute, and other academic medical centers to receive top-quality care. However, there may be barriers preventing the patient from accessing this care, such as the patient lives too far from an NCI-designated cancer center or financially their insurance doesn’t cover these places to access this type of care, which is a barrier the bill aims to address.?

Access to clinical trials is another important area impeding health equity for cancer patients. Adams says, “Sometimes the only treatment that’s available is actually not yet approved. So patients who fail first on the guideline-recommended therapy may need to go to other therapies that are not yet proven.”

A final goal of the bill is to make sure that cancer patients have the right to medical treatments for pain management and other services. Adams notes the severity of the opioid crisis makes providers hesitant to prescribe opioids, but it and other pain medications may be appropriate for cancer patients.

Stanford’s role in supporting the bill

The City of Hope , an NCI-designated comprehensive cancer center, contacted Stanford in 2021 for support in getting legislation passed that addressed cancer patients’ unique needs, especially low-income patients, to improve health equity.

The proposed bill was reviewed at Stanford and the two organizations worked closely to finalize the six elements. The Stanford Cancer Institute Office of Cancer Health Equity reviewed the bill’s six tenants with the Stanford Healthcare Office of Government Affairs office and discussed the bill’s implications. Stanford Healthcare chose to sign on as a sponsor of the bill.?

The Stanford Cancer Institute Community Advisory Board

The?Stanford Cancer Institute Community Advisory Board?(SCI-CAB) is composed of community leaders in the areas the Stanford Cancer Institute serves and is integral in establishing and fortifying the SCI’s presence and outreach in local communities. Adams says that the Stanford Cancer Institute Office of Cancer Health Equity collaborated with the Community Advisory Board on input and feedback on the bill and that board members commented on behalf of their community organizations.?

In regard to other policy efforts, the SCI-CAB has noted that financial toxicity is an area of focus for cancer patients. Group members and a few Stanford research programs, including population science, radiation biology, and cancer immunotherapy, led a public webinar discussing the importance of financial toxicity and its impact on patients. Recently, the Office of Cancer Health Equity brought in two students to partner with Community Advisory Board members to develop a dashboard that could be used to better understand the distribution of community benefits in the SCI’s catchment area. Adams explains that all non-profit hospitals are required to provide community benefits, which includes medical financial assistance for patients who are unable to pay their medical bills and community-building initiatives that address the needs of underserved patients and communities.?

Their preliminary studies confirmed the findings from prior studies showing a mismatch between community benefit generosity and social needs. The findings were used as the basis for a National Cancer Institute proposal that started in November 2023. The project members, including patients, patient advocates, community organizations, community benefit leaders, and simulation modelers specializing in decision science, will meet to use a novel participatory simulation modeling process to identify all factors that contribute to the inequitable allocation of community benefits in this space. Adams says they’ll also explore what would be necessary to create a tool that community benefit providers could use to evaluate the impact of changes in their community benefit practices on the distribution of all community benefit offerings in the SCI’s catchment area and beyond. The group presented a poster about this work at the 2023 Cancer Community Impact Forum (CCCIF) Conference, and they plan to collaborate with other community engagement groups interested in community benefits distribution.

Adams says, “The Community Advisory Board is passionate about policy work. Leveraging their expertise has been critical to our accomplishments to date and to what we’re going to do in the future.”

As a next step, SCI-CAB members and other community stakeholders will convene at next year’s Stanford Cancer Institute Bridging the Gap Symposium, which seeks to bring community leaders and health experts together to innovate solutions in achieving health equity in the SCI catchment area. Dinah Trevil, MPA ?Dinah, MPA, executive director of the SCI-OCHE, says that one of the program’s aims is to translate research into policy and practice and that policy will be a component of the symposium, including having experts speak to the implementation of the bill.?

California Cancer Care Equity Act

The?California Cancer Care Equity Act?passed more recently, which is an outcome of the Cancer Patients’ Bill of Rights legislation, and articulates how the Cancer Patients’ Bill of Rights applies to recipients of Medi-Cal, California’s Medicaid program.

“This is important because Medicaid recipients in general have worse health and cancer outcomes than people who have other forms of insurance, including being diagnosed at a later stage of illness.”?

Adams notes that breast and lung cancer, two of the SCI’s priority cancers, particularly have poor outcomes for Medicaid recipients.?

The Cancer Care Equity Act actualizes the information in the Cancer Patients’ Bill of Rights by focusing on implementation. The act incentivizes the system so providers embrace innovation and access to improve patient outcomes and reduce inefficient spending. Under the act, Medi-Cal managed care plan enrollees must be notified when diagnosed of their right to request a referral to access care through an NCI-designated cancer center or qualifying academic medical center. Medi-Cal managed care plans must also make a good-faith effort to contract with cancer centers that provide specialist care for patients with a complex cancer diagnosis, which is defined as a diagnosis for which there is no standard Food and Drug Administration (FDA)-approved treatment, such as advanced leukemia and relapsed solid tumors. With this partnership, clinical trials that may have been inaccessible to these patients may now be available, offering them hope and potentially improving their odds of survival.?

Adams says, “The act is trying to counterbalance those incentives on the payment side that are conducive to high-quality care and innovation. It tears down the walls between institutions to facilitate the referral of patients who need care from an NCI-designated cancer center.”

She notes that implementation will need to be done by partnering with community centers and that the outcome of access will be seen earlier than health outcomes, which will take five to ten years to see. The evaluation methods will be tricky because it involves the entire population of Medi-Cal patients potentially having this benefit and there will be many different ways the act will be implemented. Researchers will need to figure out how to study the outcomes in a systematic way, and Adams points to community providers as being critical in helping in the evaluation process.

“Community providers are often the port-of-call for Medicaid patients, so we’ll need to work with federally qualified health centers and other community organizations to understand what pathways Medicaid cancer patients are using to get into the system. Then, for each pathway, we’ll need to understand what’s the best opportunity to study and what’s happening with those patients.”

Because California has a large number of Medicaid patients, it’s likely researchers will be able to use big data to look retrospectively and find out this information in a relatively rapid way, which Adams is excited about.?

Adams adds that researchers from diverse areas and students are attracted to this work since it involves both big data and health policy.?

“This work interests everyone from people in drug development who are worried about the cost of cancer treatment all the way through to population sciences. We’ll be keeping an eye out for opportunities to evaluate the impact and to provide insights into the implementation and practice. It’s a real opportunity for us to engage across research programs to identify opportunities to improve patients’ lives.”

December 2023 by?Katie Shumake

#HealthEquity?#HealthJustice #PatientRights #FinancialToxicity #HealthCareCosts