The Insulin Initiative Q&A in The Shot Newsletter
We talked to Emily Pisacreta with The Shot Newsletter about the Insulin Initiative.
Describe the vision of the Insulin Initiative.
The Insulin Initiative organizes and empowers people demanding federal action for affordable and accessible insulin in the United States. The Insulin Initiative’s efforts are focused at the federal level in order to make country-wide policy changes that impact all insulin-dependent diabetics.
Our initial projects are: 1.) A federal insulin list price cap; 2.) A coordinated push for the Federal Trade Commission (FTC) to investigate the insulin manufacturers for illegal price-fixing; and 3.) Removing the FDA’s prescription requirement for analogue insulin.
What separates the Insulin Initiative from other efforts, such as those put forth by state chapters of T1 International or by the Diabetes Patient Advocacy Coalition (DPAC)?
DPAC is funded by the insulin manufacturers. The Insulin Initiative is a politically focused group that actually works in the interest of insulin-dependent people with diabetes and will never accept funding from the healthcare industry.
There are two major items missing in this space that T1International is not taking on. 1.) A cohesive strategy to win on insulin in the U.S. and 2.) Local organizing everywhere to carry out that strategy. The Insulin Initiative aims to fill these gaps.
There are a lot of amazing T1International state chapters but there are also critical states, such as Virginia, that do not have one. We hope that the members of the strong state chapters will help carry out The Insulin Initiative’s vision, either through T1International or as independent patient advocates. We also hope the organizers in these chapters will work with us to develop more insulin organizers across the country.
Why do you think an initiative toward insulin price caps on the federal level hasn’t happened yet?
By patients? Because it is challenging to have a 24/7/365 chronic illness you have to work a full-time job with benefits to afford, while also doing the organizing, networking, and lobbying necessary to introduce federal insulin price cap legislation.
By diabetes organization? 99.9% of US-based diabetes organizations claiming to represent patients actually represent Big Insulin’s interests instead. Thus, we’ve seen piecemeal efforts at the state level to help certain categories of diabetics afford insulin without lowering insulin’s list price, which is the highest in U.S. history, and without affecting Big Insulin’s profit margins. These efforts fail to address the root of the problem – our federal government’s refusal and unwillingness to regulate Big Insulin’s pricing power. The Insulin Initiative will fight Big Insulin head-on by pushing members of Congress from both parties to institute federal insulin list price caps that apply to all insulin-dependent diabetics.
A lot of existing prescription drug price legislation makes a big deal about being “bipartisan” yet never seems to make it out of committee. Does Democratic control of both the House and the Senate change the calculus on getting legislation like federal price caps through?
Ultimately, no. Although chances are higher with a Democrat majority, there are still hurdles to overcome. One of which is pushing the Democrat and Republican lawmakers who accept healthcare industry money to support the bill. This is why our tactics are the same no matter what- we need both parties to adopt transformative insulin legislation. We cannot rely on only one political party to do the right thing.
Are any members of Congress already on board to draft or introduce a bill?
There is vastly increasing support among members of Congress for federal insulin list price caps, and The Insulin Initiative is in contact with those members.
Can you explain what the thinking is behind building a grassroots base around federal insulin price caps right now rather than a base geared toward comprehensive prescription drug price reform or even Medicare for All? In your minds are these efforts at odds or are they complementary?
The Insulin Initiative fully supports the ongoing fight for Medicare for All. We hope our organizing efforts will lead to a strong diabetic presence in that fight. Since insulin is unlike any other drug because we need it 24/7/365 to survive and over 25% of insulin-dependent in the United States ration insulin, time is of the essence.
Are you looking to model this initiative off of any existing or previous grassroots movements? If so, who is your biggest inspiration?
The Insulin Initiative is drawing from grassroots movements in healthcare and beyond. Implementing local organizing and reaching working class communities on the ground is inspired by DSA’s Medicare for All campaign and Rising Organizers. We are looking to places like Indivisible and Sunrise Movement regarding direct action tactics and infrastructure. Our biggest inspiration is ACT UP.
You say you’re building the framework for this work now. What do the next steps in this process look like?
We are currently building our strategy with other leaders across the insulin movement. This strategy will focus on politics and organizing, including strengthening the processes we need to connect and mobilize people across the country.