A couple of weeks back Congress approved a temporary extension of funding for the Special Diabetes Program, which funds studies at the National Institutes for Health. It funds programs known as TrialNet and TEDDY, along with other research related to diabetes. We call and tweet our Washington contingent regularly as diabetes funding reaches the floor, and hope you do the same.

To the extent that there is a community of those with Type 1, there is a grim joke among them about how a cure is always only 5 years away. A press release goes out…there may be a couple of anecdotes that make the news, but there is seldom significant progress toward “curing” Type 1. This is a shame, because – as an autoimmune disease – progress in understanding and treating Type 1 should advance cures for millions and millions with various diseases.

We’re actually pretty satisfied with the advocacy efforts directed toward research. It seems it’s easier to get Washington to spend money than it is to get Washington to help you save money.

Don’t expect the American Diabetes Association or JDRF to put their full effort into these pricing issues, as they EACH get more than one million dollars per year from Lilly. ADA proudly recognizes both Novo Nordisk and Sanofi as big contributors, as well.

We want to feel good about the companies that create the compounds and devices that keep our kids alive, but it’s hard to accept that there are good people involved when the price of good insulin has have gone up – UP – by a factor of 13 times, from $21 in 1996 to $275-ish dollars in 2020 – even as patents have expired and competitors have entered the marketplace! As they say about much of capitalism, the system’s not broken, it was built this way.

Sure, pharmaceutical companies have “discount cards” and various “if you can’t afford your prescriptions, Merck is here to help” sort of programs. Eli Lilly’s average income on a unit of insulin likely ISN’T 13 times what it was in 1996. Our guess is that these discount programs are all written off as charitable or advertising expenses, lowering their tax bill. According to Public Integrity, on $600 million in US income in 2018, Eli Lilly paid zero taxes. Zero. In exchange for Lilly being able to write off $240 per vial in offering a $35 price voucher, some individuals find themselves paying $275 in some circumstances. This complexity is killing people an driving American families to medical bankruptcy!

Don’t expect the American Diabetes Association or JDRF to put their full effort into these pricing issues, as they EACH get more than one million dollars per year from Lilly. ADA proudly recognizes both Novo Nordisk and Sanofi as big contributors, as well. Frankly, the AARP is the best advocate for insulin prices we’ve seen, and – surprise – we couldn’t immediately find any evidence that insulin companies are among their donors.

This post is starting to ramble. I mean to say, that insulin prices are so obscene, that it should be an “easy win” for the non-profit diabetes community to advocate for better retail prices. Not just Medicare prices accessible to some, not out-of-pocket prices for those with good insurance – the base retail price accessible to all. Again, the system isn’t broken, it was built this way. Still, you may encounter a sympathetic legislator and change the world if you reach out faithfully. Good luck to all of us.