Insulin Affordability

The INSULIN Act discussion draft was released last week by leaders and Diabetes Caucus Co-Chairs Jeanne Shaheen  (D-NH) and Susan Collins (R-ME).  JDRF helped draft this bill which contains several provisions for which we have long been advocating.

What does the bill do?

1. Caps insulin co-pays at $35 (or if lower, 25% of the net price paid by insurance) per month for people with Medicare or employer sponsored coverage.
2. Requires commercial insurers to exclude insulin from the deductible
3. Creates an incentive for manufacturers to lower the list price to 2021 Medicare Part D net prices. In exchange for lower list price, manufacturers will not have to pay rebates or other utilization management tools.
4. Broadly speaking, the INSULIN Act lowers the price of insulin for everyone, whether they have insurance or not.

A formal bill introduction and vote is expected in July. We will keep you updated, including House of Representatives activity, on legislative action as the process unfolds.
Stay tuned for an action alert in support of passing this bill!

ARPA-H (Advanced Research Projects Agency-Health)

ARPA-H is designed to fill a gap in the medical drug and device pipeline that currently doesn’t adequately support high-risk, high-reward ideas that could represent transformational changes to treating and curing diseases, including T1D.

There is bipartisan support for the concept, but there are a few issues at play for how to establish the agency. A bill introduced by Rep Anna Eschoo authorizes $3 billion for the agency and places the ARPA-H within the Health and Human Services.  The House will vote on this the week of June 20th.

In other health policy news, the Federal Trade Commission has opened an investigation into anti-competitive practices by PBMs. The Libre 3 was approved by the FDA recently and will be available before the end of 2022.

We know that some people don’t yet have insurance coverage for the Omnipod 5 but Insulet continues their work on contracting with insurers to get coverage. It takes time to update their contracts in the middle of plan years but we are confident that most insurers will cover this.

Promise Campaign

The Promise to Remember Me Campaign will launch in a few short weeks and run from July 11 – September 2 offering an opportunity for our local individuals and families to join in district Congressional meetings to share their experiences of life with T1D. As always we want to include a wide range of experiences, backgrounds, and stages of life among these patient voices. (From newly diagnosed families, to those who have aged into Medicare, people of ethnically diverse backgrounds, etc.)The key focus of this campaign will be seeking support for the renewal of the Special Diabetes Program which currently accounts for $150 million annually in T1D research funding through the National Institutes of Health.

Interested in joining a Promise meeting?

Email promise@jdrf.org.

Advocates in Action Council (AAC)

A new young adult group is being launched for ages 18-26 for those who are interested in actively supporting JDRF Advocacy, want to spread awareness of T1D in their communities and want to inspire youth to use their voices to drive meaningful progress that benefits the T1D community. Expectations of membership include joining a local Advocacy Committee, participating in campaigns, mentoring local youth interested in advocacy, and completing an annual community service project.  Leadership teams are forming now for general membership.  Applications are open September 1-November 30th.  The first class will be announced in January of 2023.  Email AAC@JDRF.org if you’re interested in applying!

Children’s Congress

The JDRF 2023 Children’s Congress application will officially launch on Tuesday, September 6 following the Labor Day holiday weekend, and remain open through November 30.

The event will take place June 26-28, 2023 in Washington, DC, and that all T1D youth ages 4 – 17 (at the time of the event) are eligible to apply.

• For more information, feel free to email cc@jdrf.org and visit the Children’s Congress website at cc.jdrf.org.