Coachella Today

The head of a California health care reform group said that copay accumulators are blocking patients from getting discounts on their prescription drugs.

“California boasts an impressive health care system, renowned for its quality and innovation,” wrote Julie Gill Shuffield, executive director of Patients Come First-California (PCF-CA), in a June 7 Desert Sun op-ed. “Yet, beneath the gleaming facade lies a stark reality: access to this quality care remains elusive for far too many Californians.”

“In a state that prides itself on progressiveness and inclusivity, the persistent gap between health care quality and accessibility is not just a disappointment,” wrote Gill Shuffield,” it's a failure of our societal obligation to care for all residents of the Golden State.”

Gill Shuffield referenced a tool used in California called “Quality Adjusted Life Year” (QALY). QALY is a measure of life expectancy and the supposed quality of life into a single index number. It’s used by some state and federal health care programs to assess the cost-effectiveness of medical interventions, policies, and treatments. 

The calculation involves adjusting the length of life based on a quality score, where a score of one represents perfect health and zero represents death.

QALYs “create value metrics that result in treatments being denied, which is discriminatory under federal law,” wrote Gill Shuffield. 

“The result is a health care system that exacerbates rather than alleviates inequality,” she wrote. “California must prioritize systemic reforms that prioritize equity, inclusivity and eliminate discrimination.”

At the federal level, a bill sponsored by U.S. Rep. Jason Smith (R-MO-8) that would prohibit federal health care programs from using QALYs, passed the U.S. House in March.

“Bureaucrats in Washington and across the country are trying to put a price tag on life,” said Smith in a statement following House passage of the bill. “The Protecting Health Care for All Patients Act, reaffirms that every life has value and stops individual Americans from being reduced to mere dollars and cents on a spreadsheet.”

“An individual has worth, regardless of someone’s age or whether they have a disability or other chronic ailment,” said Smith. 

The bill, H.R. 485, would prohibit “all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability, age, or terminal illness) to determine relevant thresholds for coverage, reimbursements, or incentive programs,” according to the bill summary.

Originally sponsored by U.S. Rep. Cathy McMorris-Rodgers (R-WA), HR. 485 passed the House on a vote of 211 - 208 and has been referred to the U.S. Senate Committee on Finance.

Tony Coelho, chairman of the Partnership to Improve Patient Care (PIPC) and a person with epilepsy, supported House passage of H.R. 485, saying in a statement that “the resulting barriers to care that come from assumptions that people with disabilities have a low quality of life and are not worthy of treatment are well documented.”  

“It is what drives me and so many in the disability community to advocate against the use of measures like quality-adjusted life years (QALYs) to determine how health care will be reimbursed and covered,” he said.

Gill Shuffield wrote that, “by embracing health care access and removing tools, like QALYs that only serve as barriers to care, the Golden State can redefine the future of healthcare.”

Announced as the director of PCF-CA in April, Gill Shuffield previously ran her own firm, Sutter Buttes Advisors, and founded Power of 100 Sutter Buttes Basin, a charitable community women's group. She was named Woman of the Year by U.S. Rep. John Garamendi (D-Fairfield) in 2019. Gill Shuffield also previously worked as director of regulatory and government affairs at AES Corporation and in external affairs for California ISO.