Last month, Gov. Gavin Newsom vetoed a bill that would have capped insurance copayments of insulin at $35 per 30-day supply. This decision comes after Senate Bill 90 received unanimous support from the state Senate and Assembly. Advocates living with diabetes in California have expressed disappointment following the veto, and are continuing work on passing legislation at the state and federal levels to make insulin accessible and affordable.
In his veto letter, Newsom noted how bringing down the cost of prescription drugs, especially insulin, has been a longtime priority of his, and said that individuals shouldn’t be forced into debt due to high insulin costs. Newsom cited the CalRx insulin initiative, which is a statewide partnership with Civica Rx to create biosimilar insulins, costing no more than $30 per 10mL vial, or $55 for five 3mL cartridges.
“This is a fraction of the current price for most insulins, and CalRx biosimilar insulins will be available to insured and uninsured patients nationwide. With CalRx, we are getting at the underlying cost, which is the true sustainable solution to high-cost pharmaceuticals. With copay caps however, the long-term costs are still passed down to consumers through higher premiums from health plans,” stated the letter.
Each year, about 263,000 Californians are diagnosed with type 1 diabetes—an autoimmune disease where the pancreas is unable to produce insulin, requiring daily blood sugar monitoring and insulin administration—and about 4 million Californian adults live with diabetes. Individuals with diabetes, including the numerous types of diabetes that exist, rely on insulin doses daily to survive, but insulin prices have skyrocketed in recent decades: one in four individuals who take insulin reported rationing, or underusing the lifesaving medication, due to the high cost.
“It would’ve been such an easy win to set up these basic protections for people with insurance,” Kevin Wren, chapter leader for T1International’s California chapter, told State of Reform.
Wren joined the #insulin4all movement in 2018 and started T1International’s Washington chapter in 2019. Wren was diagnosed with type 1 diabetes in 2001, and has rationed insulin in 2009 and in 2018 due to the high costs.
Between 2012 and 2016, insulin spending for patients with type 1 diabetes increased from $2,900 to $5,700. Numerous deaths of members of the diabetes community in recent years have been directly tied to unaffordable insulin costs. Legislative findings from SB 90 show that diabetes is the seventh leading cause of death in the United States, and the primary cause of disabling and life-threatening health complications, like blindness, kidney failure, and heart disease, among others.
SB 90 would have prohibited health plans from imposing deductibles, coinsurance payments, or other cost-sharing methods for insulin prescription drugs. When health plans “reset” at the beginning of each year, patients must meet their deductibles before insurance coverage kicks in, which can cost thousands of dollars and prohibit diabetics from obtaining insulin—which they can die without in the span of 48 to 72 hours.
“I think for patients, it’s a missed opportunity to lower prices for those with insurance. It might not help everybody, like the uninsured, but it does help people better afford their medicine, which is what we should be doing instead of creating obstacles. It would have been great to have this, in addition to the Civica Rx partnership—just multiple ways that we can combat the affordability of insulin.”
— Wren
Earlier this year, State of Reform spoke with Allan Coukell of CivicaRx about the partnership. In 2024, Civica plans to file their first application for its first insulin—glargine, or a long-term acting insulin—which will be followed by clinical trials, manufacturing runs, and submission to the Food and Drug Administration for approval. While diabetics look forward to this new initiative, the biosimilar insulins will not be available on the market for years to come.
SB 90 sponsor Sen. Scott Wiener (D — San Francisco) expressed his disappointment with the veto in a press release.
“This veto is a major setback that will keep tens of thousands of diabetic Californians trapped in the terrible choice between buying insulin and buying food,” Wiener said. “This is a missed opportunity that will force them to wait months or years for relief from the skyrocketing costs of medical care when they could have had it immediately. We will continue to fight for straightforward, fast-acting measures to lower the costs of essential healthcare, including insulin.”
The American Diabetes Association, a diabetes advocacy nonprofit, sponsored SB 90 alongside Wiener.
“To see them lead was encouraging, but also disappointing because they’ve been working on this for two years, and it just gets vetoed. I get from a market standpoint, if you’re trying to get more people onto Civica Rx and Cal insulin, that you would not mess with the affordability of other branded medicines or competitive insulins,” Wren said.
Wren feels like California, and the United States as a whole, are stuck behind the times. He said that over 30 states have sought copay price caps for those with insurance coverage, yet individuals living with diabetes must navigate the expensive healthcare system without any safety nets or support.
“I’m helping the same amount of people every month get supplies or insulin, like meeting in Starbucks and parking lots to exchange stuff. So I haven’t seen any change, which, I always hope that maybe one of these policies will prevent one person from rationing, that I don’t have to go out and actually hand over insulin—but that isn’t the case.”
— Wren
Generally, Americans living with diabetes feel like they must keep each other alive through donating and sharing prescriptions because the healthcare system has failed them.
“Now that the veto has come through, we’re back to lobbying,” Wren said.
This and next month, Wren and the California #insulin4all chapter will lobby prior to the start of the 2024 legislative session. The chapter is focused on expanding price caps for diabetes supplies, because if an individual is rationing insulin, Wren said it’s likely that they’re rationing other diabetes supplies. While cutting-edge technology, like closed-loop insulin pump technology, exists, which creates better control and less risk for diabetes-related complications in the future, it remains costly.
Wren is holding conversations about establishing an Alec Smith Insulin Affordability Act—which was passed in Minnesota and Utah—to allow diabetics without insurance coverage to access a 30-day emergency insulin supply at little to no cost. Wren thinks this type of bill would have a greater impact on affordability than insurance copayment caps, since those who are uninsured are continuously met with the full list-price of insulin. Humalog insulin, for example, costs $274 per vial, and diabetics use numerous vials per month.
Alec Smith was 26-years-old when he passed away due to insulin rationing in 2017. During May of that year, Alec was removed from his mother’s health insurance. Due to his income, Alec did not qualify for state assistance and sought marketplace coverage options, which were limited. He found a plan with a high-deductible of $7,600 with $450 in monthly premiums, and chose to pay out-of-pocket for insulin and supplies.
When going to the pharmacy to pick up his insulin, Alec was met with a $1,300 total, which he could not afford, and went home without insulin. Alec rationed the insulin he had left, hoping to make it to his next payday. Alec died due to insulin rationing and high prices on June 27th—just three days before his next payday on June 30th.
In addition to statewide advocacy efforts, Wren is working to get insulin prices capped at the federal level. Wren will be testifying at a congressional hearing on Thursday in support of the Inflation Reduction Act, which allows the secretary of the Department of Health and Human Services to negotiate Novolog insulin prices for Medicare recipients.