To hear Jennifer Perkins tell it, losing her health insurance would be nothing short of a nightmare.
Like nearly 25% of people with diabetes, Perkins has had to ration her insulin, a dangerous practice that can potentially lead to blindness, kidney failure or even death. Yet, the drug's out-of-pocket costs forced her to rely on a friend's grandmother's supply to see her through.
"Grandmas cannot be our state's emergency insulin program," said Perkins, a nurse from Tacoma.
A bill, which passed the state Senate last week, would lower the cost of insulin in Washington. Should it become law, Senate Bill 5546 would set a copay cap of $35 per 30-day supply of the drug for everyone on state-regulated insurance plans, such as Medicaid and state employees. It wouldn't apply to private health plans.
The bill had a public hearing in the House committee on Health Care & Wellness on Thursday and House Majority Leader Pat Sullivan, D-Covington, called the bill's chances in the chamber "very good."
Nearly 1 in 8 adults in Washington live with diabetes, and roughly 1 in 3 use insulin, according to the state's Department of Health. A hormone produced by the pancreas, insulin helps the body process sugars and carbohydrates in food. People with Type 1 and Type 2 diabetes have trouble producing or processing insulin, making the drug critical for survival. A 2019 report from DOH identified diabetes as the seventh leading cause of death in Washington.
"Insulin is a life-or-death drug. We know that people have died because they could not afford insulin," said the bill's prime sponsor, Sen. Karen Keiser, D-Des Moines, during its public hearing Jan. 19.
Currently, 18 states have legislation capping insulin co-pay costs, and the issue has recently garnered national attention. President Joe Biden's Build Back Better agenda includes measures that would cap insulin copayments at $35 per 30-day supply for certain Medicare patients. The bill passed the U.S. House of Representatives in November and is currently undergoing negotiations in the Senate.
But self-funded group insurance plans, the kinds most common for large corporations, do not fall under the state's regulatory jurisdiction and would therefore not be subject to the new bill or its copay caps. Roughly 3 million Washingtonians, less than half the state, are enrolled in health plans that would qualify for the $35 copay cap, according to figures from Democratic Senate policy staff and the state Health Care Authority.
Many Washingtonians with diabetes say that state's bill doesn't do enough to address the root of the problem: complicated insurance plans and the pharmaceutical manufacturers benefiting from inflated insulin prices. According to the DOH report, the total cost of diagnosed diabetes in Washington was $6.7 billion in 2017.
"Having that experience where you're at the counter of your pharmacy and they have the lifesaving medicine that you need on the other side, and you cannot get it ... It'll make anyone cry," said Perkins. "You just need it."
Diabetes advocates say price caps, as opposed to copay caps, are a more effective way to increase insulin affordability by limiting all patients' out-of-pocket costs, regardless of what kind of insurance they have.
"Setting how much insulin could be sold for would really affect people with or without insurance," said Madi Johnson, leader of the Washington chapter of #insulin4all, a group of volunteer advocates.
Sen. Mike Padden, R-Spokane Valley, the committee's only nay vote, cited concerns about government attempts to set insulin price limits.
"As someone who has a family history of diabetes, I am very sympathetic towards the need for affordable access to insulin. I am also very supportive of efforts by pharmaceutical companies to provide insulin at reduced prices or free of cost. But experience has proven time and again that price controls do not work," said Padden in an emailed statement. "Big government is almost never the right answer."
In 2020, the Legislature passed Senate Bill 6078, setting a $100 out-of-pocket limit and establishing the Total Cost of Insulin Work Group, which was tasked with creating strategies to lower insulin costs. The $100 cap, which expires at the end of this year, was intended as an interim measure to give the work group time to find a more permanent solution, though the pandemic prevented the group from meeting before its funding expired.
Another bill, House Bill 1728, would again fund the work group, though some of its supporters are calling for amendments. They point out that of the group's 14 representatives, seven of them would be from pharmaceutical interests. Only one would represent an organization of patients living with diabetes.
Some supporters of the bill were disappointed to see a particularly impactful provision removed from the substitute bill that passed the state Senate. The original version of the bill would have directed the work group to look for ways to create a free, emergency 30-day supply of insulin, but that provision was removed because of difficulties negotiating with pharmacists, Keiser said at the bill's final Senate committee vote Jan. 24.
The provision was inspired by a 2020 Minnesota emergency insulin law, the Alec Smith Insulin Affordability Bill, which supplies at least 30 days' worth of insulin to those in urgent need for $35 or less. Insulin manufacturers must provide it to the program for free, or face fines.
"The emergency insulin supply was something that we were really passionate about because it could help folks who were uninsured. And, obviously, those folks are more likely to be people of color, BIPOC, and seniors, right?" said Johnson, referring to those who are Black, Indigenous and people of color. "It was a point of equity here to make sure that people who were uninsured are not left out of this equation."
The bill heads to a committee vote Wednesday.
