Insulin should not be a luxury: INSULIN Act would support those who manage type 1 diabetes

Imagine you need to take a drug multiple times a day, where going even a day or two without it will make you sick. Going without it longer will be life-threatening.  

Now, imagine that this drug costs you as much as $1,000 each month.  

Unfortunately, this is the day-to-day reality for more than 7 million insulin-dependent Americans, including the nearly 1.6 million impacted by type 1 diabetes—thus far, an incurable autoimmune disease. 

When insulin is too expensive, people ration it—as many as one out of every four people, according to published data. The results of rationing insulin go beyond a few sick days: the lifelong impact for an individual can include devastating and costly long-term complications such as kidney failure, heart attack, stroke, blindness and amputation.  

Private-sector efforts such as Civica’s recent announcement to develop and distribute low-cost insulin and insulin pens by 2024 are an important step in the right direction, but there’s still more to be done. 

The INSULIN Act, a bipartisan proposal by U.S. Sens. Jeanne Shaheen (D-N.H.) and Susan Collins (R-Maine), will take several important steps to make insulin more affordable for the diabetes community.  

First, the bill takes steps to correct the broken insulin market, in which people with diabetes can pay up to $300 a vial for insulin but payers, such as insurance companies, get discounts of 70 percent or more.  

The INSULIN Act puts in place incentives for reform, with the goal for everyone—whether they have insurance or not—to have access to the same, lower prices.  

In addition, the bill includes a $35 co-pay cap for people on Medicare Part D or with commercial insurance. A recently released Kaiser Family Foundation analysis showed that this cap would lower insulin costs for nearly 20 percent of those covered by commercial insurance.  

Finally, many people struggle to pay for insulin when their insurance year resets, as they must shoulder the full cost burden of their insulin until they meet a deductible. This proposal fixes the problem by ensuring that insulin is fully covered regardless of whether a deductible has been met.   

JDRF, the leading global type 1 diabetes research, and advocacy organization, strongly supports the INSULIN Act proposal and calls upon the U.S. Senate to pass it in the coming weeks so that people with diabetes receive the relief they desperately need. 

Every day, the type 1 diabetes community does its part by constantly managing this difficult and devastating disease 24 hours a day, 7 days a week, and 365 days a year. They should not have to consider how they’ll pay for their insulin or be forced to choose between paying for life-saving medicine or other basic necessities such as food or rent.  

Insulin affordability is about more than politics and business deals; this is about valuing American lives, all lives—whatever their health, financial, or employment status.  

The federal government, pharmaceutical industry, health, and non-profit organizations must all do more to support those who manage this chronic, life-threatening disease every day and solve this dire problem. Enactment of the INSULIN Act would be a significant turning point and a step in the right direction. 

Cynthia Rice is Chief Mission Strategy Officer at JDRF, a leading nonprofit organization funding type 1 diabetes (T1D) research.