California set to adopt first-in-the-nation “Cancer Patients’ Bill of Rights”

According to Joseph Alvarnas, MD, vice president of government affairs at City of Hope, 55% of cancer patients in California don’t receive care consistent with clinical guidelines from national comprehensive cancer networks.

Alvarnas said cancer patients in California, with approximately 176,000 people diagnosed each year, need a bill of rights because of the issues many of them encounter seeking treatment.

 

 

A bill from Sen. Susan Rubio (D) that has been unanimously approved by both chambers of the California legislature aims to decrease this disparity by outlining six principles of treatment to which cancer patients in the state are entitled. Upon approving of the legislation last week, the Assembly lightly amended some of its language, which needs concurrence from the Senate before the resolution is officially adopted.

The six principles in the current version California’s first-in-the-nation Cancer Patients’ Bill of Rights (subject to the Senate’s concurrence of amendments) are:

“(a) Cancer patients have a right to understand fully their diagnoses and be informed about treatment options in culturally appropriate and understandable languages.

(b) 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.

(c) 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.

(d) Cancer patients have a right to medical treatments for pain management and other services that support their overall health.

(e) 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.

(f) Cancer patients have a right to relevant clinical trials, medical research, and cutting-edge innovation, including evidence-supported precision medicine; and be it further.”

In an Assembly Health Committee meeting last month, Alvarnas — whose organization sponsored SCR 11 — explained why California would benefit from a Cancer Patient’s Bill of Rights.

“The best chance of a cure is the first chance for a cure, which is why patients deserve information about treatment options and relevant medical research.

Each year, thousands of these cancer patients are either misdiagnosed, placed on treatment regimens that are inappropriate or ineffective for their condition.”

California cancer patients need better access to the ever-advancing developments in cancer treatment technology, he said.

“As cancer science advances and more effective treatments and cures are available, there’s a disconnect between those advances and patient access to good quality health care that can save lives.”

He said limited or delayed access to adequate treatments can result in severe consequences, like misdiagnosis and mistreatments. This can include unnecessary exposure to chemotherapy or preventable deaths. Members of historically underserved communities are particularly at risk of these consequences, he explained.

Improved cancer outcomes are often determined by patients’ participation in cancer trials, but only 8% of cancer patients actually participate in cancer trials, according to Alvarnas. He believes SCR 11 will promote increased access to these relied-upon trials.

“A review involving researchers from Columbia University and the American Cancer Society looked at 13 studies involving 9,000 cancer patients and found that over half of patients didn’t have a clinical trial available to them at their institution. But when available, a majority of cancer patients — 55.1% — agreed to participate in clinical trials.”

Rubio’s office told State of Reform that, although not set in stone, the Senate is likely to concur with the Assembly amendments on Thursday, clearing the way for the official adoption of SCR 11.