TALLAHASSEE — Sara Green was a young mother when a trip to the hospital ended with a Type 1 diabetes diagnosis for her 3-year-old son, Joseph. She practiced injecting an orange with a faux insulin needle, and told the nurse she couldn’t prick her child.
“The nurse said, “If you don’t do it, your baby dies,’ ” she said. “Any mother would say, ‘Well, you have to do what you have to do.’ ”
Since then, Green, who lives outside of Tallahassee has learned how far that promise could go. Her son, now 12, tests his blood sugar eight to ten times a day. Her family has had to purchase expensive glucose monitors and insulin pumps that act as a “bionic pancreas” for Joseph.
Type 1 diabetes is an autoimmune disease in which the pancreas produces little or no insulin. Insulin is what the body produces to control blood sugar naturally. Treating diabetes requires taking insulin to manage blood sugar and avoid serious complications.
Maintaining the chronic disease requires some of the most expensive treatments money can buy.
The prices, set by three companies that make the drug, have ballooned over the years, driving patients and parents of children with diabetes to share devices and supplies with others in an underground network, reuse supplies and in severe cases, even ration doses.
In 2012, the average cost was $2,864 a year. Today, the average cost is over $5,000, and the prices have real-life implications.
In June, a 24-year-old Virginia woman died as a result of skipping her insulin doses. One month later in Minnesota, a 21-year-old man died as a result of rationing his insulin.
Green’s story and others are part of a push nationwide to tackle high insulin prices. In Colorado, where a law went into effect this month, cost sharing for prescription insulin drugs is capped at $100 per 30-day supply. On Thursday, Illinois signed a similar bill into law.
But in the Florida House, where Speaker José Oliva slammed pharmaceutical companies in his opening day speech for “financially assault[ing]” patients and consumers, a bill to place $100 caps on co-payments for insulin will not pass this year.
In fact, it won’t even get a hearing.
Avon Park Republican Rep. Cary Pigman, chair of the Health Market Reform Subcommittee, said he won’t be putting it onto the agenda this year.
And Oliva, despite his opening day comments, told reporters he doesn’t support the idea, either. When prices are capped, “someone has to pay,” he said, referring to the pharmaceutical companies.
“I don’t think we should be in the business of capping costs,” the Miami Lakes Republican said.
Oliva pointed toward the drug importation bill that passed last year as a possible solution for lowering costs in the future. The bill allows Florida to pursue importing prescription drugs from countries like Canada — though components of the bill will still require federal approval to take effect.
The new law does not cover injectable medication, like insulin.
Others who oppose the bill in the House cite a number of philosophies, like a slippery slope of capping the cost of one medicine but not others or the fact that the bill would only help people with diabetes who have insurance.
Pigman, who met with the American Diabetes Association Thursday, made the point that people who don’t need insulin will face higher insurance premiums.
A Milliman study, commissioned in 2017 on behalf of Eli Lilly, studied insulin co-pays at $0. The analysis found that the increase in cost would be approximately 70-95 cents per member per year.
Pigman, a physician, said he thinks the cost issue is deeply rooted in the pharmaceutical companies that set the prices. The states can’t act because the companies “aren’t breaking the law.”
About 20% of the money Pigman raised for his 2018 campaign came from pharmaceutical companies and pharmacies, including donations from two of the three companies that make insulin — Eli Lilly and Company and Sanofi Services.
When diabetes advocates wrote emails requesting meetings with Pigman on the bill, his legislative aide told them Pigman would not be meeting about the bill, according to emails provided to the Times/Herald.
Pigman said the best solution the Legislature can come up with now is wrapped into a proposed committee bill that would impose additional reporting requirements for pharmacy benefit managers in order to collect more data on drug pricing. Pharmacy benefit managers are the people who negotiate with a pharmacy over dispensing fees and reimbursement for drugs.
“I think there’s a problem, but I don’t think [co-pay caps] is the solution,” Pigman said. “But what we can do at the state level is get some transparency.
The House sponsor for the insulin price cap bill, Miami Democrat Nick Duran, said he supports the pharmacy benefit managers bill, which came out of a committee on which he sits.
“It’s unique that we’re actually listening to a bill like that in the House,” he said. “I’m sure there is more we can do.”
However, he added that insulin pricing is an urgent and human issue, and that it shouldn’t be up to Floridians to deal with the rising costs.
“There hasn’t been a bill I’ve ever filed where I received so many calls and emails and folks trying to share their story about the issue,” he said. “When someone is talking about their child ... I have children, and that resonates with me to know you’re doing everything you can but you just cannot make ends meet.”
Duran said he knows his bill has little chance of making it this year, and plans to file it during the next legislative session, which begins in March 2021.
The Senate bill, on the other hand, has had a smoother go.
The bill, filed by Tampa Democrat Janet Cruz, passed unanimously through its first committee stop Jan. 15.
The Banking and Insurance Appropriations Subcommittee hearing was an emotional one, with testimony from parents with government jobs who ration insulin for their children and young adults who are off their parents’ health insurance and struggling to pay their bills.
It ended with a bipartisan conclusion that the state needs to act on insulin prices, as other states are starting to do. The committee praised Cruz for her work on the bill in a show of bipartisan support less rare in the more moderate upper chamber.
Sen. Tom Lee, a Thonotosassa Republican and former Senate president, called the pharmaceutical companies sheepish, and said he was disappointed that they didn’t show up to testify against the bill.
“At least put something on the record. Why are the prices so high?” he asked. “It seems like someone is ashamed to be here.”
Sen. Doug Broxson, chair of the committee, called the high insulin prices a “moral issue” the state should be compelled to address.
“If we had 3,000 people stuck on an island starving, we would spend billions to rescue them,” the Gulf Breeze Republican said. “But we have millions stuck on an island right now who will die because of insulin. We have to do something.”