The Shot 4/20/21
Beyond Type 1 pens a controversial letter to Maine legislators
Beyond Type 1 Tells Maine Not to Bother With Insulin Assistance Program
Last Tuesday, April 13th, a Maine legislative committee held a hearing for a suite of five bills, including LD 673, which would establish a state-wide emergency insulin program similar to Minnesota’s Alec Smith Insulin Act. Maine #Insulin4All advocates, like Hilary Koch, had been preparing their remarks in support of the bill for weeks. But what they were surprised to see the morning of the hearing was a written testimony from Beyond Type 1 criticizing the bill.
“I was stunned,” Koch told me in a recent phone call. “There was something about it that made me feel like it was a personal betrayal, even though I don’t know if that’s even fair because it’s not like it was signed by Nick Jonas.”
Koch is the T1International Chapter Leader with the Maine #insulin4all chapter. Raising her son, Leo, who lives with type 1 diabetes and hydrocephalus, Koch tried to cultivate a sense that Leo could do anything — a vision embodied by Jonas, who co-founded Beyond Type 1 in 2015. Her sense of betrayal, while not stopping her from remaining focused on the hearing, was shared by many people in the diabetes online community who feel the move represents Beyond Type 1’s shift from representing patient voices to representing the interests of the insulin manufacturers.
In the letter, Christel Marchand Aprigliano, Beyond Type 1’s Chief Advocacy Officer, tells the Maine committee that a tool offered by Beyond Type 1, a website called GetInsulin.org, renders the Maine bill duplicative. GetInsulin.Org, which launched in October, aggregates patient assistance programs available based on your zip code, financial information, and medication list. It’s funded by donations from the insulin manufacturers.
It’s not totally clear from the letter whether Beyond Type 1 explicitly opposes the bill (neither Aprigliano nor a representative from Beyond Type 1 responded to my request for comment), but it does argue that GetInsulin.org and the patient assistance programs (PAPs) offered by the big three insulin manufacturers make it unnecessary to establish the state-based program laid out in the bill, and would unnecessarily burden patients and the state.
The bill would require pharmacies and other health care providers to administer a once a year emergency supply of insulin to Maine residents without adequate prescription coverage, allowing pharmacies to recoup payments from the insulin manufacturers. While it’s true that patient assistance programs have become more robust in the past year in response to the COVID-19 pandemic and its economic fallout, the programs, like Beyond Type 1’s GetInsulin.org, are voluntarily offered by the companies — often at no cost to them as PAPs are generally tax deductible. The Maine bill, like the Minnesota one that precedes it, locks the companies into providing assistance that patients would otherwise have no guarantee will exist tomorrow.
In her past role as CEO of the Diabetes Patient Advocacy Coalition (DPAC), Aprigliano testified about the insufficiency of PAPs to address the community’s insulin needs. One improvement the group recommended was increased PAP enrollment at the pharmacy counter — a solution that the Maine bill mandates.
Though Aprigliano states that Beyond Type 1 plans on hosting GetInsulin.Org “until such time that diabetes is cured or federal legislation is enacted to ensure that all people with diabetes have affordable access to insulin analogs,” trust in the organization to stick to its word is tenuous.
To many in the diabetes community, the letter from Beyond Type 1 represents the completion of the organization’s metamorphosis from hip, social-media-first community organization with an explicit policy of zero pharmaceutical funding, to yet another patient advocacy organization trading patients’ interests for pharma cash. The hiring of Aprigliano last July especially reflects that evolution, her resume consisting of senior positions at more than one pharma-funded patient advocacy organization, including DPAC and the American Diabetes Association.
Indeed, Aprigliano’s letter to Maine legislators bore striking similarities to the one submitted by Eli Lilly’s local Director of State Legislative Affairs, which also cited GetInsulin.Org as an existing solution that rendered the Maine bill unnecessary.
In February, Craig Stubing, host of the Beta Cell Podcast, penned an open letter to Beyond Type 1 resigning from their Leadership Council over the group’s unwillingness to publish financial information and its growing ties to pharmaceutical companies.
“There is no amount of good that can come from a relationship with insulin manufacturers that can overcome the damage it is doing to the type 1 diabetes community,” he wrote.
“Effectively, Beyond Type 1 has become agents for Pharma, acting on their behalf to dismantle any work our true advocates at @t1international International and the #insulin4all chapters are doing to help people get access to insulin,” wrote comic artist who goes by Miss Diabetes in a caption for her comic about the letter.
But there’s reason to believe that Maine legislators won’t be swayed by Beyond Type 1’s messaging — at least according to Koch, who expressed confidence in the legislature’s ability to identify the insulin manufacturers’ interest in GetInsulin.org. Plus, she’s excited about the other bills being introduced alongside LD 673, including one to prevent inordinate price hikes.
Still, she thinks patients are right to question Beyond Type 1’s ties to the insulin manufacturers.
“Similarly to what we’re saying here in Maine that lawmakers need to choose between Mainers and pharma, patients have every right to be asking organizations who they will choose: patients or pharma? Clearly now is the time to ask that question.”
_ Beyond Type 1 was not the only diabetes patient advocacy org to face outrage from the community last week. In the run-up to its annual gala, the Tennessee chapter of JDRF took to social media to praise the generosity of each of its corporate sponsors — including CoreCivic, a company that operates private prisons. While many people would object (rightly, in my opinion) to JDRF accepting money from anyone who makes their money from incarceration and detention, what’s worse is that CoreCivic has been sued for horrific treatment of people in their facilities who have diabetes. In response to social media posts excoriating JDRF for the partnership, the organization announced — rather unceremoniously in a tweet response — it would sever ties with CoreCivic.
_ Is this the insulin price cap legislation we’ve been waiting for? The End Pricey Insulin Act, or “EPI Act,” introduced by Sen. Kennedy (R-LA), would cap out of pocket costs at $50 for all patients, insured and uninsured alike.
_ The World Health Organization launched the Global Diabetes Compact. Part of the compact seeks to increase access to insulin in low- and middle-income countries, first through its program of “pre-qualification insulin” — sponsoring generic insulin production for use explicitly by WHO.
_ Charles Booker, a Kentucky state rep who lives with type 1 diabetes, is exploring another run for Senate — this time against Rand Paul. Here he is on Mehdi Hasan’s show talking about his experience rationing insulin.
_ Designer and developer Kathryn Yu made a game based on the real life story of Mutual Aid Diabetes and NY #Insulin4All activist Allie Marotta and her experience having to ration insulin.
_ Tired of rationing insulin? Ever wonder how you too can become an insulin oligarch? Luckily, Eli Lilly wrote a handbook 100 years ago.
_ Stu Sherman, a candidate for City Council in New York City, is hosting an event this Friday, April 23, that he’s calling The People's 100th Birthday Celebration of Insulin.
That’s it for today. Wish I’d stop writing about patient advocacy organizations and start writing about ____? Fill in the blank and let me know! Send tips, feedback, memes, or whatever to firstname.lastname@example.org or reply to this email.