California NAACP Joins Fridreich’s Ataxia Research Alliance, Other Groups to Discuss Controversial Healthcare Bill

The Friedreich’s Ataxia Research Alliance (FARA) joined the California NAACP and other patient advocacy groups to listen to opinions and concerns about SB 1010 — a controversial California state bill that could potentially impact Friedreich’s ataxia (FA) care in the state.

Those opposed to the bill, sponsored by state Sen. Ed Hernandez, claim it “prioritizes paperwork and bureaucracy over research” and worsens patient access and healthcare affordability for California patients. The bill was scheduled to be heard by the California Assembly Health Committee on June 21.

The bill itself is an amendment to California’s Knox-Keene Health Care Service Plan Act of 1975, which regulated healthcare service plans and health insurers, requiring, among other things, they file specified rate information with the state’s Department of Managed Health Care (DMHC) or Department of Insurance (DOI) for healthcare plans and service plan contracts for small and large group markets in the state.

SB 1010 seeks to modify the reporting requirements for healthcare, with an emphasis on drug manufacturers to notify “state purchasers, healthcare service plans, health insurers, pharmacy benefit managers, and the chairs of specified Senate and Assembly committees if it is increasing the wholesale acquisition cost of the drug by more than 10% or by more than $10,000 during any 12-month period,” according to the bill’s most recent draft.

Opponents of the bill believe that the new requirements could ultimately lead to denying patients with chronic diseases, such as Friedreich’s ataxia, access to crucial treatments.

The list of organizations joining the NAACP include the California Chronic Care Coalition, California Senior Advocates League, Council for Citizens Against Government Waste, TechNet, California Hepatitis C Task Force, among others.

California NAACP President Alice Huffman said that SB 1010 might inadvertently threaten underserved patients’ access to medications. In a press release, FARA President Ron Bartek, whose son died of Friedreich’s ataxia, said that “SB 1010 could disrupt patients suffering debilitating or deadly diseases from receiving life-saving medicines, all while burdening our healthcare system by prioritizing paperwork, red tape, and bureaucracy over research and development.”

Those opposed to SB 1010 believe the bill promotes the hoarding of necessary medicines by large purchasers and encourages the growth of a medication “gray market,” where distributors may sell to the highest bidder.

Sara Radcliffe, California Life Sciences Association’s (CLSA) president and CEO, said that “this will increasingly lead to shortages and disruptions in treatments for patients in dire need of essential medicines, and any pharmacies, hospitals and patients who must go to a secondary distributor for a scarce medicine will no doubt see huge price mark-ups.”

“I know first-hand the importance of patient access to life-saving medicines, and the importance of having meaningful health insurance that covers the cost of that treatment,” added William Remak of the California Hepatitis C Task Force. “SB 1010 could be an obstacle for patients suffering from treatable, but potentially deadly diseases and put patient access to medicine at risk. We need comprehensive reforms that address all the key pressure points in our healthcare system that create bad outcomes for patients.”

There are also groups in favor of the bill. They claim that transparency in drug pricing will ensure affordable and accessible prescription drugs for Californians.

An editorial in the Los Angeles Times titled “Why are drug prices soaring? Policymakers aren’t sure. It’s time they find out,” suggests the bill has the potential to better inform policy makers about how to lower the high prices of medicines.

According to the editorial, Hernandez’s proposed bill “would require health insurers, which already have to reveal to state regulators detailed projections of hospital and physician costs, to include in those annual reports more information about what they’re spending on prescription drugs” in an effort to raise transparency in medical costs.

Patient organizations that support the bill include the AARP, California Alliance for Retired Americans, California Pan-Ethnic Health Network, California State Retirees, CalPERS, CALPIRG, Consumers Union, Courage Campaign, Health Access California (co-sponsor), National Multiple Sclerosis Society – CA Action Network, and Project Inform.