Mutual Aid Diabetes Aims to Build a Community Fund and Resource
Over the past several years, informal mutual aid networks on social media have become indispensable for people with diabetes. Requests for extra insulin or funds to cover copays make the rounds on a near daily basis, with community members often scrambling to help one and other before anyone runs out of insulin and gets sick. Now several organizers are banding together in hopes of building a more robust and centralized platform to help sustain some of those efforts.
The new group, Mutual Aid Diabetes (MAD), hosted its first public information session on Zoom Sunday night, with the event reaching its capacity of 100 guests. MAD’s goal is to provide direct aid in the form of financial assistance to those in need (think: money to cover a copay or part of a deductible), as well as guidance toward insulin stability — “diabetic to diabetic.” They also want to build an information hub for things like navigating patient assistance programs, and in the longer term, they hope to gather and present data on the failures of the current system in an effort to influence public policy.
MAD is pledging to never affiliate or accept money from existing patient advocacy organizations or pharmaceutical companies. As one facilitator put it, the group has no desire to become “professional diabetics,” and hopes to cease existing sooner than later. They are, however, planning to seek 501c3 nonprofit status in the new year. One major point of discussion on the call was about this decision, which prevents the group from being able to facilitate the illegal but frequently lifesaving exchange of insulin that currently takes place within informal mutual aid networks. But some on the call expressed an interest in doing both — building a legitimate structure for legal, out-in-the-open help that may in fact reduce the need for any prescription sharing, as well as continuing to fulfill insulin needs in their personal capacities however best they can.
For now, MAD is in its early stages and looking for volunteers. If the info session was any indication, the group will face no shortage of either ideas or energy. As the January 1st deductible reset approaches, the community will face no shortage of need, either.
Biden Names Xavier Becerra, Critic of Pharma to Head HHS
Biden’s nominee to lead the Department of Health and Human Services appears to be California attorney general and former Congressman Xavier Becerra. I noted a few weeks ago that Becerra’s record includes joining other state AGs in a lawsuit against generic drug manufacturers on the issue of price-fixing. But there are other signs he may one day be willing to use the power of his office to curtail the industry’s power (should Biden ask).
On insulin specifically, he joined several other state AGs in seeking answers from the manufacturers and PBMs on soaring prices in 2017. On health care issues more generally, he’s most well known for leading a coalition of 20 states in defense of the Affordable Care Act in the Supreme Court case California v. Texas. When he was in Congress, he allegedly supported Medicare for All. As California AG, he criticized the FTC for allowing a major pharmaceutical merger between Abbvie and Allergan, and sued several companies over pay-for-delay and kickback schemes.
Most interestingly, in 2016 he signed onto a letter urging HHS to enforce march-in rights on drugs developed from federally funded research as a way to combat rising drug prices. Then earlier this year, he urged the same of Alex Azar when Gilead brought remdesivir to market for COVID-19. March-in rights and compulsory licensing are two legal mechanisms that the federal government can use to break drug patents without Congress. As HHS head, Becerra would be in the position to enact such interventions. Still, the Biden approach to pharma remains unclear.
Insulin Makers Restrict Discounts to 340B Hospitals
Novo Nordisk joins Eli Lilly and Sanofi in restricting the discounts it offers to hospitals through the 340B Drug Pricing Program. 340B is a federal program that requires pharmaceutical companies to provide discounted drugs to qualified hospitals and community health centers — places that serve low income, rural, or otherwise vulnerable communities. Novo Nordisk will no longer offer discounts to hospitals who dispense the drugs to patients via outside pharmacies, rather than in-house pharmacies. Advocates say the move will likely make it harder for patients who rely on the program to get insulin.
Catch Dr. Laura Nally, a pediatric endocrinologist and advocate with CT Insulin4All talking about insulin prices, 340B, and more on Connecticut Public Radio.
That’s it for today’s Shot. No “small doses” this week. Some weeks it’s all headlines. Be sure to reach out if you have feedback, questions, tips, etc >>> theshotnewsletter@gmail.com
-Emily Pisacreta