When Tekamah resident Rod Regalado’s son, Matt, was diagnosed with Type 1 Diabetes in September, it began a journey of keeping him healthy and a fight of a different kind.
“When families have to choose between keeping their lights on or pay for the insulin, choose between food or insulin, it’s a true American tragedy,” Regalado said. “It is profiteering of the worst sort.”
Matt was diagnosed Sept. 6, 2019, and left the hospital Sept. 8, the first day Regalado had to purchase insulin. It was more than $1,200 the first time after insurance. A changed prescription added another $400 out of pocket after insurance.
Regalado was mad.
“Matt’s married to this forever,” he said. “So I’m getting really pissed off, doing homework and due diligence looking at this thing. It’s a dark story the way insulin is priced, based on a formulary on an insurance scorecard. It has to go through a pharmacy benefit manager.”
Regalado said he tried wrapping his head around all the moving parts.
“By October, I’m fed up and know how many people are dependent upon this insulin, at that point I start making phone calls,” he said. “No one is answering. I sent a crappy letter to the chief of staff at U.S. Congressman Jeff Fortenberry’s office, essentially saying they are doing a tremendous disservice to the people he represents and ought to be ashamed of himself. I got a phone call the very next day from his chief of staff.”
Fortenberry introduced House Resolution 5382 in December, originally called Matt’s Bill — now known as Matt’s Act of 2020 — a federal, standalone bill that would allow anyone who is insulin-dependent to buy directly from the manufacturers. The bill was proposed "to create a mechanism whereby insulin manufacturers may sell directly to consumers at current net prices."
Fortenberry is the representative for Nebraska's 1st District. Representative Angie Craig for Minnesota's 2nd District, is the co-sponsor on the bill.
"The bill's intent is to facilitate a drop in the price of insulin by as much as two-thirds by creating a whole new model for delivery of the drug that delivers substantial cost savings to all patients," Fortenberry said. "By preventing manipulation in gains and cost increases, this approach saves everybody money, especially the uninsured, who will finally have access to much lower insulin prices.
We hope that this bill will finally bring fairly priced insulin to every patient, including the uninsured."
Fortenberry said they will introduce Matt's Act of 2020 soon.
"We have been in conversations with diabetes groups who want the language to be strengthened to ensure that no one will pay more for their insulin because of possible manipulations in the marketplace," he said. "We will have that fixed shortly."
“This is cutting out $3 million for Type 1 Diabetics, $30 million for both Type 1 and 2,” Regalado said. “This would save billions of dollars by cutting out the middleman."
The bill would create a way for insulin manufacturers to sell directly to consumers at current net prices.
“It’s starting to get a little bit of a following. Fortenberry took it to the Energy and Commerce meeting (June 25),” Regalado said. “The co-chair of the committee, Anna Eshoo, said this is a good bill. Hopefully, it makes it past this next step and gets a hearing. Once there’s a hearing, we can go to Washington and testify."
Regalado knows it’s a long process.
“It’s baby steps,” he said. “This all started in October, the bill was introduced in December, and it’s taken this long to get an audience with the next step.”
Regalado, a single father, comes home after work in Council Bluffs, Iowa, goes through making dinner and details of family life, and hits the computer after everything is done.
“I send an email every single night,” he said. “I reach out to congress people, famous people. Let’s face it, I’m Ron Regalado, nobody from Tekamah, that no one’s ever heard of.”
He wrote actor Kevin Kline the other day, whose son is a diabetic.
So far his messages go unanswered.
“Radio silence. But that’s OK,” Regalado said. “They can’t tell you ‘no’ if you don’t ask. It’s coming along, we have positive responses.”