Although I was often called Goldilocks as a child, I never took a liking to the story. The little girl and I both had curly blond hair, but that’s where the similarity ended. About Little Red Riding Hood, however, I felt differently. As a child who happily made her way to grandma’s all the time, Little Red Riding Hood and I shared a bond. Sure, she had to trek through a forest and all I had to do was cross over a little bayou bridge, but our destination was the same.
I attribute much of my lost childhood innocence to Little Red Riding Hood. Thanks to her story, I learned not only to worry about being gobbled alive or hacked up by a woodcutter, but to fear being tricked. Little Red alerted me to the possibility that in the bed where my loving, somewhat overbearing, tiny, white-haired, toothless grandmother slept, I could also encounter a hairy beast in a bonnet who wanted to eat me rather than feed me. And yesterday when I read that Eli Lilly, pharmaceutical giant, raised the price of their big selling insulins, Humalog and Humilin, by 7.8% just on the heels of a meeting with diabetes advocates to discuss the problem of the high cost of insulin, I couldn’t help but think of Little Red Riding Hood and the deceiving wolf.
Exactly no one should be astonished that Lilly has, yet again, hiked the price of insulin. It’s just another example of greedy pharma being greedy pharma. The escalation perfectly fits the pattern of insulin drugmakers’ regular price increases. (It’s this pattern that led Senator Bernie Sanders to ask the Department of Justice and the Federal Trade Commission to investigate the three big insulin makers – Lilly, Sanofi, and Novo Nordisk, for price collusion.) But while there’s no surprise here, this price hike is particularly disconcerting because just a few weeks ago on April 20th, Lilly invited a dozen diabetes advocates to their headquarters in Indiana for an insulin access workshop. (Speaking of access, my fellow diabetes advocate Melissa Lee has pointed out, “Nobody touting the AHCA promises affordable care. They promise “access to” affordable care.”)
The insulin access workshop was designed to discuss the problem of the high cost of insulin. And a lot of people in the diabetes community went, ‘huh?’. Because since when does pharma have a conference to talk about the fact that they are pricing a life-sustaining drug so high, it is unaffordable to many people with diabetes?
Mike Hoskins of DiabetesMine attended the workshop and his thorough report on the event includes images of Lilly’s presentation slides, which appear to be riddled with share/pass-the-blame arrows. Insulin, we who can’t survive without it must understand, costs so much because of insurance companies, pharmacy benefit managers, and the system, the system, the system. But the bottom line is that the price of a vial of insulin is set by its maker. And according to a MarketWatch report updated on May 7, 2017, Lilly’s Humalog is the most expensive insulin of all. If my husband, who lives with type 1 diabetes, had to buy Humalog at list price it would cost him around $600 a month to stay alive.
I wrote to Lilly and asked them to explain the rationale behind the latest price increase. This is the reply I received:
“We work to limit the impact of price increases as much as possible, particularly for people who have high deductible insurance plans. New programs such as Inside Rx and the Blink Health platform — both of which provide 40 percent discounts for most Lilly insulins — are available to help people who pay full retail price at the pharmacy, and we’re continuing to look for more permanent solutions to ease the financial burden for people who are uninsured and underinsured.”
I turned to my colleague Elizabeth Rowley, cofounder of the charity T1International, that advocates for affordable insulin worldwide, for her thoughts on the company that is working to “limit the impact” of their avarice. Rowley said, “Recent measures by Lilly to host a ‘patient forum’ and to launch another discount scheme seem like an obvious attempt to soften the blow of yet another price increase. List price increases matter not only because it makes insulin even more unaffordable for people without insurance or good coverage, but because people pay the same percentage increase through their discount programs.”
Unconnected, but coincidentally* well-timed to the insulin access summit, came the unveiling of the diabetes advocacy group DPAC’s new app (download it!), whose creation was funded by Lilly. The app enables diabetes advocates to call, tweet, email, and share stories with congressional representatives with just a couple of clicks. I applaud Lilly for this. Really. No sarcasm. The app is terrific and so is the driving force behind it, Christel Marchand Aprigliano. But what we also desperately, urgently need is for Lilly to fund an app that enables us to call, tweet, and email the company itself. I could then tap my phone all day, Cookie Clicker-style advocacy, to get my message of LOWER THE PRICE OF INSULIN to the ones who are actually setting the prices. In light of the price increase, Lilly’s funding of DPAC’s advocacy app seems more like an attempt to deflect blame and relinquish responsibility to the government. In other words, don’t bother us about it, but let us help you bother them.
In Hoskins’ coverage of the insulin access workshop he says, “No one is happy with the current state of affairs, even those in the top brass at Lilly Diabetes. It was clear that the people present at this meeting care, deeply. Just like many of us, they have personal D-connections — one on the marketing team who just marked her 20th dia-versary with T1D, another on the advocacy and payer side with a husband with type 1, and several others who shared stories recognizing need and hardship in the D-community.” Hoskins then quotes Jordyn Wells, of Lilly’s payer and corporate marketing team, “It is a crime, I agree with you on this, and we are not OK with the status quo,” Wells said.
The crime is now 7.8% worse.
*An earlier version of this text used the word suspiciously, and has been amended for clarity.