WASHINGTON — Lacy Mason was a 21-year-old graduate student in Atlanta when she started rationing her insulin. As a Type 1 diabetic, she needs to take insulin every day for survival. But when the cost surged to $960 a month, Mason could no longer afford it.
She had aged out of Medicaid and her student health insurance didn’t help. So she counted the vials she had stored in her refrigerator and did the impossible math of trying to figure out how to make her supply last until graduation. She was a year short.
“Things started kind of getting desperate, honestly,” Mason said.
Mason is one of many diabetics who have rationed the life-saving medicine as the cost of the four most popular types of insulin tripled over the last decade, according to the American Diabetes Association. In the United States, 1 in 4 people with diabetes have resorted to rationing their insulin, according to the group.
Congress in response is considering legislation that would cap insulin co-pays at $35 for Americans with private health insurance. The House passed a bipartisan bill in March, and aides for lawmakers working on the issue say it is a placeholder for what will be a bipartisan Senate compromise. They hope the Senate can vote on it as a standalone bill this summer.
But the House bill does not address what happens to people without health insurance, or do anything to curb the spiraling cost of insulin, health analysts say.
Mason, for example, worked weekends and connected with other diabetics in a “black market” for survival — she met people in parking lots to buy insulin, used expired insulin, and accepted leftover insulin from friends’ deceased relatives.
She is now able to afford insulin through a combination of employer insurance, coupons from insulin manufacturers and her full-time work.
But Mason wants the federal government to step in, so that she and all others whose lives depend on insulin do not have to worry if they can afford it in the future.
“The main thing that really bothers me with my story is it doesn’t really seem to matter what demographic or area you are in life, you can still fall into an underinsured or uninsured category and be left in a position where it is really hard to afford, and that is still happening,” Mason said.
The issue has gained some momentum on Capitol Hill. Sen. Raphael Warnock, a Georgia Democrat, introduced a bill in February that would cap insulin co-pays at $35. It has the backing of the American Diabetes Association and 35 Democratic cosponsors. Warnock has promoted the issue with events in Georgia and Washington, D.C.
His proposal could provide financial relief to at least 1 out of 5 insulin users with various kinds of private health insurance, according to an analysis of insurance claims data from the Peterson Center on Healthcare and Kaiser Family Foundation.
But the legislation would offer no additional relief for the uninsured, according to health policy analysts.
The House of Representatives passed its version of the bill, which Rep. Angie Craig, a Minnesota Democrat, introduced, at the end of March with unanimous support from Democrats and backing from 12 Republicans.
Now it sits in the gridlocked Senate. Senate Majority Leader Chuck Schumer has said he will try to advance the issue and placed the House bill on the Senate calendar at the end of May.
The procedural move does not guarantee that the Senate will ever vote on it but allows legislation to come to the Senate floor without going through the full committee process first.
Warnock sent Schumer a letter June 6, saying he was “deeply disappointed” the legislation had not received a vote and thanking him for this procedural step forward
“The time is now to finally act on this critical issue, and we can’t afford to wait any longer,” Warnock wrote.
Separately, Sens. Jeanne Shaheen, a New Hampshire Democrat, and Susan Collins, a Maine Republican, are co-chairs of the Senate Diabetes Caucus and the lead negotiators for a bipartisan effort in the Senate. Read more