It was 21 months ago when James Holt appeared with then-candidate for governor Erin Murphy to talk about his son Alec, who had died of ketoacidosis after rationing his insulin.
Five months later, James and his wife, Nicole Smith-Holt, told the story again to a legislative task force convened to find a way to provide the insulin to diabetics who couldn’t afford the hormone due to rapidly increasing prices. Since then, Minnesota lawmakers have tried and failed to act, all the while arguing and finger-pointing, cajoling and insulting each other. But they still couldn’t agree on a method to cover the costs of insulin and supplies for those who needed it.
Through it all, Alec’s parents kept the pressure on, appearing at numerous committees, rallies, press conferences and round-table meetings. Often, they brought a framed picture of their son with them. Their goal was simple: to have a bill passed that would honor Alec — and prevent similar deaths.
In the end, it wasn’t a surprise when the Alec Smith Emergency Insulin Act passed the Minnesota House and Senate Tuesday. The deal had been all but agreed to before lawmakers went into their COVID-19 recess on March 16, and the final language was announced a week ago. It was, however, a relief, said Nicole Smith-Holt and James Holt after the House finally approved the bill, House File 3100, by 111-22 and the Senate responded with a vote of 67-0.
Gov. Tim Walz is expected to sign the bill soon (Update: Walz signed the bill at noon Wednesday).
“It’s been a journey,” Smith-Holt said Tuesday. “We’ve been coming here to the capitol, going to committee hearings and telling Alec’s story for a year and a half.”
She described ups and downs and deals that fell apart along the way. “I knew that, eventually, this would happen,” she said. “I think Alec was telling me not to stop. I don’t know if words can explain what it’s like to have a loved one’s name on a bill that is going to save the lives of others.”
And she admitted to violating social distancing rules by giving Rep. Mike Howard, the Richfield DFLer who was the bill’s chief House proponent, a hug after it passed. “He has become family at this point,” she said.
What it will mean for patients
The core of the compromise goes back to last summer, when Sen. Eric Pratt, R-Prior Lake, suggested using existing patient assistance programs run by insulin manufacturers to provide a supply to those who meet income requirements. Those are the programs that are often referenced at the end of TV commercials for drugs when the announcer says “if you can’t afford your drugs, we might be able to help.”
Those programs have long faced criticism for not helping enough people and for having erratic rules. To put financial pressure on the companies to participate in Minnesota’s program, those that skip can be fined. Those fines increase as non-participation continues — $200,000 per month for six months, and increasing to $400,000 per month for the next six. After a year of non-participation, fines go to $600,000 a month.
[image_credit]MinnPost photo by Peter Callaghan[/image_credit][image_caption]The Minnesota House approved the bill by 111-22.[/image_caption]
The new bill creates an emergency supply for 30 days for diabetics who need insulin now and can’t afford it. It also sets up a longer-term program for those under certain income limits and don’t have insurance (or have insurance with large co-pays). Both have the companies providing the product, either by resupplying pharmacists or sending insulin directly to patients.
Howard, DFL-Richfield, counts Nicole Holt-Smith and James Smith among his constituents. He spoke of the bill while they watched from the House gallery. “This is a great day in the state of Minnesota,” he said. “No one should lose their life because they can’t afford the insulin they need to survive.”
A national model?
Voting “no” was House Minority Leader Kurt Daudt and 21 others, all Republicans. Daudt said the funding mechanism in the current bill was better than the license fees that had passed out of the House earlier this session. But he also said it was unnecessary, since the companies had improved their programs and implemented other measures to make insulin affordable to those without insurance.
“An argument could be made that pharma acted late, but the reality is they acted,” the Crown Republican said of drug manufacturers.
But Smith-Holt said the state law will make those programs permanent and require that they work for diabetics.
The Senate vote was unanimous, with compliments spread around among those who worked on the bill. Sen. Jim Abeler, R-Anoka, said the final bill was better than all of the other bills considered last year because it had a little bit of a lot of ideas. “A whole bunch of people made the product better,” he said, calling the bill something that other states are likely to copy.
One senator saw the passage as bittersweet. Sen. Matt Little, DFL-Lakeville, had co-chaired a December 2018 task force meeting on the issue along with Abeler and Sen. Scott Jensen, R-Chaska. “It’s about time,” Little said. “This bill took way too long to get here for no reason.”
After complimenting Nicole Smith-Holt for being relentless and James Holt for not “knowing how to pull a punch,” he directed his attention to the lobbyists for the big drug companies and their trade associations.
“It’s a group that seems to only exist behind closed doors,” Little said. “I don’t know who these people are, but I want to say this. If you were hired to delay this bill, to weaken this bill or to defeat this bill, I hope the weight of your work weighs heavy on your soul.”
Perhaps my aging memory has failed me again, but my recollection is that the person who discovered insulin chose not to patent the discovery so that the medication would be available at low cost to whomever might need it. He did not consider the rise of Big Pharma and its lobbyists.
Wikipedia says: The wholesale cost in the developing world is about US$2.39 to $10.61 per 1,000 iu of regular insulin and $2.23 to $10.35 per 1,000 iu of NPH insulin.[9][10] In the United Kingdom 1,000 iu of regular or NPH insulin costs the NHS (the U.K.’s National Health Service) £7.48, while this amount of insulin glargine costs £30.68.[5]
In the United States the unit price of insulin has increased steadily from 1991 to 2019. It rose threefold from 2002 to 2013. Costs can be as high as $900 per month. Concerns were raised in 2016 of pharmaceutical companies working together to increase prices. In January 2019, lawmakers from the United States House of Representatives sent letters to insulin manufacturers Eli Lilly and Co., Sanofi and Novo Nordisk asking for explanations for their rapidly raising insulin prices. The annual cost of insulin for people with type 1 diabetes in the U.S. almost doubled from $2,900 to $5,700 over the period from 2012 to 2016.
The Wikipedia information above doesn’t note any response from insulin manufacturers, and I don’t personally know how – or if – they responded to the request from Congress. In any case, there are no patent fees, and technical innovations in production largely took place years ago, so R&D expenses for production are minimal. It seems reasonable to assume that cost increases are largely driven by profit-taking (i.e., greed) rather than higher costs of production. Trading lives for shareholder dollars is – or at least should be considered – morally bankrupt, and grotesque to say the very least.
As I’ve said all along, enforce anti trust laws and the cost of medical care in the US will fall by 80% overnight. The DOJ (everyone in DC really) refuses to enforce 100+ year old laws.
I am so very greatful to the Holts for seeing this fight through. I am also the mother of a 26 year old son with type1 diabetes. He has been in very desperate situations regarding his diabetes. Affordability was always a struggle.
I couldn’t imagine going through the pain of a losing my child. It would seem unfathomable in this day and age, that an essential drug such as this, would be held from those that cannot live without it.
I cried when I heard it finally passed, as I’m sure others did. This is a great day for Minnesota!
Let us not forget those that have been denied other essential life saving drugs, thanks to uncontionable greed within the pharma companies.
Gosh! If we keep doing this drug by drug, we’ll have socialized medicine in like a million years! And the drug companies still own more congresscritters than you and me together can ever bribe.