Beyond Type 1, the diabetes nonprofit, found itself in hot water recently after the organization sent a letter stating its apparent opposition to LD673, a proposed bill for an insulin safety net program in Maine. The Maine bill is modeled after Minnesota’s popular Alec Smith Insulin Affordability Act, and guarantees that people with diabetes can access inexpensive insulin in an emergency.
The letter stated that LD673 would “create not only administrative burdens to the Maine government and pharmacies in the state, but also unintended additional out-of-pocket expenses to people living with diabetes.” The organization seemed to argue that its own GetInsulin.org program, a partnership with the major insulin manufacturers, rendered further legislation “duplicative” and unnecessary.
Some diabetes advocates were outraged at Beyond Type 1’s stance, and accused the nonprofit of favoring the big pharmaceutical companies over people with diabetes.
Late last week, the organization appeared to modify its stance with a new letter, this one explicitly supporting Maine’s new bill. Was it all just a misunderstanding, or did rowdy online activism cause Beyond Type 1 to change its tune?
Alec Smith, the Minnesota bill’s namesake, died of diabetic ketoacidosis (DKA) in 2017, at the age of 26. At the time, he had recently aged out of his parents’ health insurance plan, and the cost of his insulin had skyrocketed to about $1,300 a month, around half of his total earnings.
Smith’s mother believes that he died because he could not afford to pay for the insulin that he needed to live. She has become a noted insulin activist, and helped turn his death into a major rallying cry for people protesting the nation’s outrageously high insulin prices.
Minnesota signed the Alec Smith Insulin Affordability Act in April 2020, to widespread acclaim in the diabetes community.
The new bill in Maine, named An Act To Create the Insulin Safety Net Program, would similarly aim to provide cheap, emergency insulin to those with an urgent need. The emergency insulin would carry a maximum cost of $35 for one month’s supply. The bill also mandates standards for the insulin manufacturers’s otherwise voluntary patient assistance programs (PAPs).
In the letter that would cause an uproar, Beyond Type 1 never explicitly stated opposition to the new legislation. Whatever its intentions, however, it’s fair to say that the organization strongly implied its opposition.
The letter argues that state-level legislation such as LD673 is no longer necessary, because nationwide circumstances have changed dramatically since the Alec Smith act was passed in Minnesota:
At the time of its passage, GetInsulin.org did not exist, nor did the urgent need programs offered by the manufacturer. Additional insulin copay, cash pay, and patient assistance programs became available after the Minnesota bill became law that insulin manufacturers’ patient assistance programs (PAPs) are enough to fill the gap in assistance, and that the state statute is not needed.
While insulin is still disgracefully expensive in most of the US, it is true that there are now more avenues for patients in need than there were only a few years ago. Part of that is due to the success of advocacy efforts, such as the one that coalesced around Alec Smith’s death, that turned insulin affordability into a political hot topic. The Covid-19 pandemic has also shined a spotlight on healthcare inequities, pushing the insulin manufacturers to expand their affordability programs in the last year.
The Beyond Type 1 letter also concentrates heavily on extolling the GetInsulin.org website. GetInsulin.org is essentially a user-friendly portal for the PAPs, aggregating the information from all three major insulin manufacturers in a single space. The website was created in partnership with the big pharmaceutical companies and is at least partly funded by them, facts that raise the suspicions of many people with diabetes, who are often inclined to see Big Pharma as an adversary rather than a partner.
Are PAPs Really Good Enough?
Patient assistance programs can be valuable and even life-saving resources for people struggling to afford insulin. In some cases, PAPs may even provide more generous support for patients in an emergency than that mandated by the Alec Smith Act and Maine’s proposed law. And because these patient support programs have a reputation for being difficult to access and navigate, there’s no reason to doubt that GetInsulin.org provides a valuable public service.
For insulin affordability advocates, that’s not nearly good enough. The Shot, a weekly digest of insulin affordability news, put the case plainly:
While it’s true that patient assistance programs have become more robust … 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.
The PAPs are only reliable as long as the manufacturers don’t dilute them in the future (or disband them entirely). Given that many Americans now feel that insulin is practically a byword for medical exploitation, one can hardly be surprised when people with diabetes regard these programs with suspicion.
The big three – Eli Lilly, Novo Nordisk, and Sanofi – are reliable opponents of government efforts to cap insulin prices. And it would seem that PAPs owe their recent expansion more to the immense public relations pressure that manufacturers have lately had to endure than to any one corporation’s sense of generosity or public service.
Experts do agree that insulin manufacturers do not alone bear the blame for high insulin prices. Manufacturers, pharmacy benefit managers, insurance companies, and pharmacies all benefit from high insulin prices, and our byzantine healthcare market incentivizes all of them to push for price increases. Patients can’t easily vote with their wallets, and are therefore left with little recourse to effect meaningful change.
Insulin affordability continues to be a disaster in the diabetes community. Insulin rationing due to high cost is widespread in the United States, a situation that has probably only gotten worse since the dawn of the pandemic and the economic devastation that has followed.
The upshot of Beyond Type 1’s argument to the Maine legislative committee was that the PAPs, as accessed through GetInsulin.org, are pretty much good enough. If this wasn’t what the organization intended to communicate with its letter, it made a bad mistake – and on an electric issue.
Insulin access advocates discovered the letter online, and were outraged. Several accused the organization of corruption and betrayal:
Suggesting that the same patient assistance programs that denied Alec Smith his life are a substitute for the emergency insulin provided by the bill named after him is shameful. #Insulin4all
— Beta Cell (@betacellpodcast) April 23, 2021
When Beyond Type 1 started they said they supported #insulin4all and realized why it was important to refuse pharma money.
Then they took pharma money.
Now they’re opposing a law in Maine to create an insulin safety net program
THE 💰ALWAYS HAS STRINGS https://t.co/Iwi8PsJlPA
— James Elliott (@Jandelliott) April 15, 2021
Twitter personality Miss Diabetes illustrated a particularly devastating comic, featuring a caricature of Beyond Type 1 co-founder Nick Jonas:
A little context: when Beyond Type 1 was founded in 2015, the organization avowed a principled refusal to accept money from the pharmaceutical industry. Things have changed. Now, according to their website, “Beyond Type 1 partners with pharmaceutical companies, including insulin manufacturers, when the organization finds that doing so furthers mission and impact.”
This isn’t unusual. Most other prominent diabetes nonprofits also accept Big Pharma money (#insulin4all campaigner T1International is one notable exception). Nevertheless, Beyond Type 1’s position on this issue seemed unusual. The American Diabetes Association, for example, took the opposite stance and penned a letter in support of the bill.
Despite the controversy, Beyond Type 1 kept silent for weeks, further disappointing some in the diabetes online community.
In response to a request for comment, a Beyond Type 1 spokesman told Diabetes Daily that the original letter was written not to oppose the legislation but “with the intent of providing information to legislators about existing programs and tools for people with diabetes who are insulin-dependent.”
Additionally, the spokesman said, “Our team has followed the community response closely, and we know some have interpreted our testimony as one of opposition.”
Soon thereafter, the organization sent a new public letter to Maine’s legislative committee, claiming that it did support LD673, and that it always had:
We’re writing today to clarify and state unambiguously that Beyond Type 1 does support the passage of this legislation. This legislation will help individuals in Maine who may be struggling under urgent or ongoing circumstances to access affordable insulin due to high list prices. Our hope is that people with diabetes who need financial assistance to pay for this life-essential drug may find it through existing programs or potentially those created through Maine’s efforts.
After news of the new letter broke, Hilary Koch, a Maine resident and a Policy Manager for T1International, declared victory on Twitter – but also qualified her celebration with a reminder of how much work needs to be done to achieve universal affordable insulin access.
One can only guess as to the effect that Beyond Type 1’s clarification might have the bill’s chances. Lawmakers may well have already been inclined to support the bill. Just last year, Maine passed more sweeping legislation capping insulin costs for those with state-regulated insurance.