The Shot 1/25/21
An exclusive interview with the Insulin Initiative. Plus, 340B gets a wash in the spin cycle.
“Time is of the essence.” An Interview with the Insulin Initiative.
Close your eyes. Imagine going to the pharmacy and being able to get as much insulin as you need over the counter whenever you want. The amount owed costs less than a tank of gasoline. You turn on the news and the FTC announces they’re investigating the Big Three insulin makers. No more trips to Canadian pharmacies, no more GoFundMe, no more endocrinologists holding your prescription captive when you can’t afford the copay for a visit.
That’s the vision shared by a new collective of activists organizing under the banner of the Insulin Initiative. I sent some questions to the three co-founders of the new group: Laura Marston, Hannah Crabtree, and Samantha Leon, who were kind enough to share their thoughts.
None of these organizers are new to the fight to end the U.S. insulin crisis. Laura Marston, an attorney based in D.C., has long been a voice of moral clarity and laser-sharp focus on the issue, with her “daily reminder” tweets periodically turning the reality of life with diabetes into viral moments.
Hannah Crabtree, based in Virginia, has been no less a vital force building awareness of the insulin crisis and building momentum for change. Her Data For Insulin newsletter exposed the weakness of the state copay cap laws while media and mainstream diabetes advocates were falling over themselves in praise of them. Samantha Leon in California was among the early organizers building Mutual Aid Diabetes.
I asked these three co-founders about the work ahead for the Insulin Initiative, the political calculus they foresee, and how this work intersects with other fights for health justice.
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.
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What Exactly Did Biden Do to Insulin?
Remember when I said every politician wants to take credit for lowering the cost of insulin? The opposite is also true: everyone wants to paint their opponent as the reason insulin prices are still high. Couple that with the right’s eagerness to paint Biden as an out-of-touch elitist and we’ve got this week’s example of what could be a recurring series on here: Things That Didn’t Change the Price of Insulin.
If you’ve heard someone say or seen someone post about Biden raising the price of insulin and epipens over the past few days, here’s what really happened.
Late last week, the Biden administration announced they would be pausing the implementation of any new regulations introduced at the end of Trump’s term. That includes a December 22nd rule regarding 340B drug programs. The rule, which had not yet gone into effect and wouldn’t have until later in January, simply served to reinforce what 340B programs already are supposed to do — make these public safety net programs a key provider of insulin and epinephrine to low income patients. However, it would’ve made it harder for these safety net providers to charge any kind of small administrative or retail fee for the discounted drugs, making it more expensive to participate. The program is already imperiled by drug manufacturers announcing new restrictions on 340 contract pharmacies. In short, the Biden admin paused a rule that has been described as counterproductive and potentially harmful for people with diabetes who already get their insulin through 340B.
But the nuance of the rule is easy to miss — something the new administration arguably could have predicted — and an opportunity to dunk on Biden was too tempting to let go of for some. Cue Fox News publishing a story about it with a misleading headline, and a torrent of right-wing media personalities like George Papadopoulos and politicians like Rep. Dan Crenshaw (R-TX) slamming Democrats for “raising” the price of insulin.
While pausing this rule about 340B programs certainly doesn’t raise the price of insulin as some are claiming, there is still uncertainty about what, if anything, the Biden administration plans to do to lower it. Biden still had not released a plan specific to the issue, and the public is left to assume the worst about his approach to the pharmaceutical industry. People with diabetes are desperate for real action, and cynical co-optation of the struggle is only part of the problem when the actual policy agenda re: insulin is a mystery.
Small doses
Del. Lee Carter (D-VA), a state delegate running for Governor in Virginia, is proposing a budget amendment with an interesting new approach to expanding access to insulin: allowing the Virginia’s Medicaid program to cover insulin for all uninsured people with diabetes. He is also introducing an amendment to allow pharmacists to fill emergency insulin prescriptions in the absence of a doctor’s prescription (AKA Kevin’s Law in other states with similar measures).
Diabetes Mine spoke to a person with diabetes from Michigan who has successfully gone into Canada to purchase insulin since the border closure. It doesn’t sound easy.
Wood’s boyfriend traveled alone, but U.S.-Canadian customs didn’t want to let him in unless he’d quarantine for 14 days in Ontario. After “frantic phone calls and talking to customs,” Wood says everyone agreed to allow the local Canadian pharmacist to deliver the insulin straight to her boyfriend at the border.
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That’s all for today. As always, my inbox is open. >>> theshotnewsletter@gmail.com.
-Emily Pisacreta