A matter of life and death: insulin emergency/affordability bill stalls

Courtesy of Facebook 21-year-old Jesimya Scherer-Radcliff died because he couldn’t afford his diabetes medication

Headline after headline has been written about legislators’ efforts to help Minnesotans suffering because they cannot afford their insulin medication. Yet no tangible compromise has been reached on a medical issue that affects so many Minnesotans.

Many suffering from diabetes simply cannot wait for a more affordable option. Some people have literally died while waiting for economic relief that would allow them to purchase a drug that costs as much as $300 for a 10-day supply.

The 30-day deadline has gone and passed, an exasperated Nicole Smith-Holt said.  “At this point, it feels like it is all PR just making it look like they care. They need to do this to save lives, ” she stressed.

State Representative Micheal Howard agreed. He has been working to get a law passed that would make insulin available to those who either have an emergency or just cannot afford the insulin they need to survive. “We need to show more urgency; there really is no reason why we shouldn’t be able to come together and get something done,” he said.

“This is a bill I have been working on for more than a year. It’s been like working at the kitchen table trying to figure out how do we create a safety net so that nobody loses their life because they cannot afford their drugs?” explained Howard. “I understand the frustration for advocates who have been pushing for this for more than a year. The crisis is right in front of us; the solution is right in front of us. We need all sides to show that sense of urgency,” the legislator said, alluding to what some have called foot-dragging and grandstanding on the part of Republicans.

“Everybody knows a family member that is affected,” he added.

Medical experts have described diabetes as a disease that occurs when a person’s blood glucose, also referred to as blood sugar, is too high. And having too much glucose in one’s blood can cause health problems.

Blood glucose is our main source of energy and comes from the food we eat. Insulin, a hormone made by the pancreas, helps glucose from food get into your cells to be used for energy. Sometimes our body doesn’t make enough—or any—insulin or doesn’t use insulin well. Glucose then stays in our blood and doesn’t reach our cells.

Diabetes leads to heart disease, vision loss, kidney disease, a stroke or even amputation.

According to the American Diabetes Association, diabetes is a major health problem in the U.S. The fallout from the disease puts a tremendous strain on the health care industry. Studies have shown that nearly one-third of the total U.S. population is affected by some form of diabetes, either Type 1, Type 2 or prediabetic.

And the risk of diabetes is higher in African American adults. Latest studies showed that about 4.9 million or 18.7% of all African Americans 20 years of age and older have diagnosed or undiagnosed diabetes, compared to 7.1% of non-Hispanic White Americans. The risk of diabetes is 77% higher among African Americans than non-Hispanic White Americans.

Holt has expressed disappointment that after all of the talk, no compromise has been reached. She said with the exception of a few, there has been little communication with those affected, especially with the families that have been pushing for something to be done. “They can’t write the bill without us,” she said.

Holt has credited Governor Tim Walz with being a great ally but said that something needs to be done soon. There have been two deaths this year involving young people who simply could not afford their insulin.

Courtesy of MGN

Holt’s son Alec Holt died in 2017 when he attempted to ration his insulin because it was no longer affordable on his salary. He had been on his mother’s health insurance plan until he turned 26. His mother said that he searched for an insurance plan that was affordable on his restaurant salary. But the best option was one that required a $7,000 deductible, so he eventually chose to pay for his medical expenses out-of-pocket while he continued to search for a plan that was affordable.

Alec only survived another month. He went from paying two to three hundred for his insulin to a thousand dollars, which was out of reach on his salary. His effort to stretch his meds cost him his life.  

According to Health Care Cost Institute, patients with Type 1 diabetes spent an average of $5,705 in 2016, nearly double what they paid in 2015.

Dr. Victor Montori, an endocrinologist at the Mayo Clinic in Rochester, accused the health care system of corrupting its mission for the sake of profits. “The consequences are human lives,” he said. “It’s a cruelty we can no longer accept.”

The Alec Smith Emergency Insulin Act passed by the Minnesota House of Representatives last spring was designed to create a statewide insulin assistance program to help Minnesotans who struggle to afford the insulin they desperately need. The bill would be funded through an Insulin Manufacturer Fee,  that would be collected from the three largest insulin manufacturers, Eli Lilly, French company Sanofi and the Danish firm Novo Nordisk, that control more than 90% of the market.

Since the House passed its version of an emergency bill, two young Minnesota men have died. A 28-year-old whose family requested that he remain anonymous died as a result of rationing his insulin supply. Jesimya Scherer-Radcliff, 21, who had Type 1 diabetes, died in July. His parents said he was on their health insurance, but he still could not afford the insulin he needed to survive. He reportedly had been rationing his insulin supply. One of his relatives testified at a legislative hearing on the cost of insulin that, “Jesy didn’t die from insulin rationing, he died from the prohibitive cost of insulin.”

“The pharmaceutical companies absolutely need to be a big participant in this because they caused this problem,” explained Howard. “They should have a role in solving it. There are only three insulin producers that control the entire market and they have ratcheted the price up.”

According to Rep. Howard, both bills require contributions from the insulin manufacturers. The House bill includes a manufacturer’s fee, while the Senate bill requires companies to provide free insulin. The other difference between the bills is the Senate bill allows for long-term assistance, but leaves out the emergency option plan the House prefers as a safety net.

“What we do produce is going to be a new bill that will take elements of the House proposal and the Senate proposal, which will create a safety net and provide longer-term situations.”

The global insulin market is dominated by three companies: Eli Lilly, the French company Sanofi and the Danish firm Novo Nordisk. All three have raised list prices to similar levels. According to IBM Watson Health data, documented that Sanofi’s popular insulin brand Lantus was $35 a vial when it was introduced in 2001; it’s now $270. Novo Nordisk’s Novolog was priced at $40 in 2001, and as of July 2018, it was priced at $289.

Rep. Howard said he holds out hope that something that can be done before the next session in February. “It does not have to be either or it should be yes and. We should try to address the emergency issue first to prevent more loss of life but also look at solutions for long term affordability. There is a way to marry the two and accomplish both goals, a compromise that leaves the door open for public funding as well,” he said.