Next Step in Advocacy: Call to Support the INSULIN Act

31 Aug Next Step in Advocacy: Call to Support the INSULIN Act

Posted at 12:41h in Advocacy by The Helpful Type

Life is full of setbacks, opportunities to regroup, and compelling reasons to keep moving forward. The type one diabetes (T1D) community gets it. Our common narrative is living with challenges, expecting the unexpected, recalibrating expectations, and not giving in. This holds true for advocacy efforts, too.

The recently enacted Inflation Reduction Act includes provisions to improve insulin affordability for people on Medicare (HOORAY!), but it falls short of addressing skyrocketing costs for those on commercial plans and the uninsured.

It is heartbreaking and disheartening that 43 members of the U.S. Senate ultimately voted to strip from the budget bill a provision to cap insulin at $35 per month in commercial plans, but this is where we take stock, choose a path, and commit to action. In short, we keep fighting!

Call to Support the INSULIN Act — Call your U.S. Senators. Urge them to take up the INSULIN Act.

What the Inflation Reduction Act did (and did NOT do) to address insulin access…

For Medicare beneficiaries, the new law caps insulin at $35 per month, removes insulin from the deductible, and caps overall drug costs at $2,000 per year.

This is progress! We can celebrate it while acknowledging it’s not enough. People with type one diabetes (T1D) need insulin to survive. It’s as simple as that. Maybe that’s the only straightforward element of managing T1D and accessing insulin.

At least one in four insulin-dependent people with diabetes in the U.S. have rationed insulin because of its cost. It doesn’t have to be this way. There is still an opportunity to propose a cap on all out-of-pocket insulin costs and halt the terrifying trend of insulin rationing–the act of skipping insulin injections or not taking enough to prolong each dose. Year after year, the price of insulin has soared, even though significant changes have not been made to their formulas, and they cost only a few dollars per vial to produce.¹ In 1996, Eli Lilly’s Humalog insulin entered the market with a list price of $21 per vial.² Today that vial costs almost $275.³

Where we go from here…

We need to urge the U.S. Senate to take up the Improving Needed Safeguards for Users of Lifesaving Insulin Now (INSULIN) Act to address this issue and fix the broken insulin market. The INSULIN Act would cap out-of-pocket costs of insulin products at $35 per month for people with private health plans.

U.S. Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH) are co-chairs of the Senate Diabetes Caucus. Their bipartisan legislation is endorsed by the American Diabetes Association (ADA) and the Juvenile Diabetes Foundation (JDRF).

What you can do…

Call your U.S. Senators. Urge them to take up the INSULIN Act You’ll speak with a member of your senator’s staff or leave a message. A few helpful things:

Give your name (and telephone number with area code if leaving a message).
Identify yourself as a constituent and state your hometown.
Encourage the senator to vote for the INSULIN Act.
Tell your story. Do you have a loved one with T1D? Reiterate that T1D is auto-immune related, can’t be managed with diet and exercise, and requires insulin injections to live.

Why it matters…

Capping insulin at $35 per month in commercial plans is another step in the right direction. The INSULIN Act picks up where The Inflation Reduction Act failed to curb insulin prices for a broader set of the diabetes patient population, about 7.9 million of whom rely on insulin, according to new research from Yale University. The study found 14% of people in the U.S. who use insulin experience “catastrophic” levels of spending on the treatment. When normal housing and food expenditures are subtracted from their incomes, at least 40% of the remaining money is dedicated to paying for insulin.⁴

The cost of insulin can break people with diabetes physically and financially. The pandemic has made the need to act more urgent. COVID-19 is three times deadlier⁵ for people with diabetes and can trigger insulin resistance⁶, requiring larger doses of insulin to control blood sugar. Half-measures will not solve this crisis, but we must make progress where we can.

Our family advocates, organizes, and fights for Ellie. We also want to thank all the non-diabetics who read our posts, call elected officials, tweet, and re-tweet to advocate for insulin access. We need many voices to amplify our message. Thank you for adding yours.