All I really want for Christmas this year is to not watch my children open their presents in the intensive care unit. But my goal for 2019 is much more ambitious: I want Congress and state legislatures to lower the obscene cost of insulin.
Because I’ve written previously about the high cost of insulin, many readers are aware my husband is a Type 1 diabetic. What I haven’t shared publicly is our family’s whirlwind trip to the emergency room last year on Christmas morning, when we learned our teenage son also has Type 1 diabetes.
We’ve spent the last year adjusting, which is a really nice way of saying we’ve experienced every possible emotion. We’ve cried until we were numb. We’ve shaken our fists at the universe, and battled the unfathomable depths of illogical, self-imposed guilt. We’ve repeatedly professed our love and thankfulness for each other as well as the health care professionals who saved our son’s life (no exaggeration) and have become our steadfast foundation of support (also no exaggeration).
For those unaware, Type 1 diabetes, formerly known as juvenile diabetes, is an autoimmune disease that can only be managed with injections of insulin. No amount of lifestyle changes make a difference; the body stops producing its own insulin, which is the hormone that transforms food into the energy necessary for survival. If my husband or son do not have insulin, they will die.
In February, 32-year-old Iowan Jesse Lutgen died. His mother, Janelle Lutgen, told KWWL her son had been rationing his insulin after losing his job and health insurance.
Minnesotan Nicole Smith-Holt wrote about her 26-year-old son, Alec Smith, who died in June 2017. Alec also was rationing insulin because he couldn’t afford to refill his prescription. It had only been a month since he aged off his mother’s health insurance.
And, just last month, mom Antroinette Worsham cradled the ashes of her 22-year-old daughter while protesting outside the Cambridge, Mass. offices of French pharmaceutical company Sanofi — one of only three manufacturers of insulin. She told her daughter’s story on NPR’s Here and Now, confessing that she worries what the future holds for her other 18-year-old daughter, also a Type 1 diabetic. Another mother who also protested while carrying her child’s ashes was not identified.
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Why aren’t these young people injecting the insulin they need to survive? Cost. And even pediatric endocrinologists — the doctors who specialize in treating young people with diabetes — are struggling with how to address this crisis.
The exact cost increase is difficult to pinpoint because it varies by manufacturer and type of insulin, but all insulins have undergone dramatic cost increases over the past two decades. Humalog, for instance, which is manufactured by U.S.-based Eli Lilly and Co., has experienced a 1,157 percent cost increase in the past 20 years. Humalin, available from Lilly since 1982, experienced a nearly 800 percent price increase.
To put that in perspective, during the same time period, the price of a gallon of milk rose 23 percent.
Lilly launched Humalog in 1996 with a list price of $21 a vial. The price has increased more than 30 times and, the last time I checked, the list price was just below $300. My husband uses about three vials each month.
Denmark-based Novo Nordisk’s Levemir, a long-acting insulin, increased from $145 a vial in 2012 to $336 in January.
Insulin manufacturers argue no one is actually paying list prices. They use pharmacy-benefit managers — companies that negotiate drug prices for insurers — to arrange rebates and discounts, as well as patient-assistance programs. But they won’t provide details, not even to Congress, because they say the information is proprietary. But even with such rebates, the companies are rolling in profit. The 2017 net profit margin for Novo Nordisk was 34 percent, according to a report from Fortune. That was its highest margin since 2000, when it was half that amount.
Meanwhile, Type 1 diabetics — especially young people aging off their parents’ health insurance plans — are rationing insulin and dying.
“This isn’t a red or blue, Republican or Democratic issue; it’s a life or death issue for millions of Americans,” said U.S. Rep. Diana DeGette, D-Colo., last month as the Congressional Diabetes Caucus released a report on how to address insulin cost. Currently, more than 290 lawmakers are part of the bipartisan Diabetes Caucus, led by DeGette and Rep. Tom Reed, R-New York. While the report places many ideas on paper, including forcing the pharmaceutical companies to provide details on their rebate arrangements and justify their price increases, these are the same suggestions that have been talked about for several sessions.
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Just this year the Senate Committee on Aging held a hearing dedicated to the high price of insulin, and the Democratic Policy and Communications Committee held a separate drug pricing hearing. Everyone seems to agree that things must change, yet no action is being taken. Worse yet, these conversations haven’t prevented members of Congress from accepting pharmaceutical campaign donations, but they have prompted increased lobbying from the manufacturers.
This next year must be one of action, and not some “first step” or “feel good” legislation passed for the benefit of campaign mailers.
State lawmakers who attempt to shame diabetics instead of addressing the high cost of insulin are on notice.
I’ve spoken repeatedly to groups of Iowa women, encouraging them to take it personally and get involved in public policy debates. A year into my son’s diabetes diagnosis and 20-some years into my husband’s, it doesn’t get more personal than this. I don’t want to be the next wife or mom raising awareness atop an urn of ashes. There are too many already.
• Comments: @LyndaIowa, (319) 368-8513, firstname.lastname@example.org