WATERLOO, Iowa — Presidential candidates can’t stop talking about insulin.

At a campaign stop here on Sunday, Sen. Amy Klobuchar retold the now-familiar story of Alec Smith, whose highly publicized death from insulin rationing in 2017 sparked nationwide outrage. Sen. Elizabeth Warren, who has vowed to lower the drug’s price on her first day in office, lambasted Eli Lilly, one of just three U.S. insulin manufacturers, at an Iowa rally the day before. And since July, when Sen. Bernie Sanders joined a highly publicized “insulin caravan” seeking cheaper prices in Canada, he has flooded this state with television ads that picture him brandishing an insulin vial in outrage.

Even in a primary dominated by broader health care issues, insulin has emerged as particularly alluring campaign fodder for Democrats. Unlike more perplexing topics like health insurance reform or the cost of drug research, candidates have a plain and simple rallying cry for insulin: That it’s corporate profiteering.

“Everything is coming together,” said Lija Greenseid, a Minnesota-based advocate working to push insulin into the political mainstream. “We’ve finally caught the attention of people in power.”

While insulin has existed for a century, American voters have taken notice of backbreaking price hikes that drug companies have imposed in recent decades as some insulin products have grown more technologically advanced and more effective. One recent poll showed that allowing the U.S. government to manufacture insulin is the single most popular element of progressive candidates’ entire 2020 agenda. And it has made for a ready opportunity for Democrats to attack President Trump: His health secretary, Alex Azar, spent five years as a top executive at Eli Lilly prior to joining the administration.

The focus on insulin is a rare point of consensus among candidates who have otherwise bickered over health care matters. It is a testament, too, to how the issue is clearly stirring voters. Even the Trump administration is beginning to signal an interest in addressing insulin specifically, after years of a broader effort to lower drug prices that has had mixed success.

“Access to affordable insulin is a life-and-death matter,” said Maura Calsyn, the managing director of health policy at the Center for American Progress. “Insulin is one of the clearest examples of drug manufacturer price-gouging, and grassroots groups have done a really phenomenal job explaining the issue and outlining why insulin is a real problem.”

But in the early primary states of Iowa and New Hampshire, and at campaign events across the country, a growing advocacy network is pushing candidates to be bolder, and to use insulin as a catch-all example of America’s health care ills. As the 2020 campaign shifts into high gear, virtually every Democratic candidate has listened.

Janelle Lutgen
Sen. Amy Klobuchar (D-Minn.) speaks during a campaign stop in Waterloo, Iowa. Rebecca F. Miller for STAT

Janelle Lutgen drove 92 miles on Sunday to present Klobuchar with a tiny gift: an empty insulin vial, spray-painted gold, barely an inch tall.

Following a Waterloo town hall appearance in front of 250 prospective caucus-goers, Klobuchar accepted her present somberly. But it was the accompanying story that got the senator’s attention: Lutgen had also lost a child to insulin rationing.

Ever since her son, Jesse, died nearly two years ago after struggling to afford treatment for his type 1 diabetes, Lutgen has used his story to launch an advocacy campaign that has pushed elected officials who run the gamut from Democratic presidential candidates to Republican state lawmakers to spotlight insulin. For months, Lutgen and her 32-year-old daughter, Theresa, have spent weekends waking up at the crack of dawn with the singular mission of hand-delivering insulin vials to presidential candidates.

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The mother-daughter pair has orchestrated handoffs to almost every major contender. Lutgen has exacted a sympathetic hug from Joe Biden, a photograph from Elizabeth Warren, an impassioned speech on the need for lower drug prices from tech entrepreneur Andrew Yang, and a brief interaction with Pete Buttigieg, the former mayor of South Bend, Ind.

With each handoff, Lutgen tells a horror story that mirrors a tale being told by advocates across the country. Jesse was first diagnosed at 12, she tells candidates, after suffering from flu-like symptoms for days. His symptoms escalated, and Jesse was eventually airlifted to a hospital in Iowa City. His family learned to manage his care, buying insulin and needles and blood-glucose monitors again and again. Janelle had health insurance through the federal government then, thanks to her job at the United Postal Service. Her copays for Jesse’s treatment were low, sometimes zero.

 

Jesse Lutgen
Jesse Lutgen, pictured at age 26. He died at age 32 after attempting to ration his insulin. Courtesy Janelle Lutgen

As a young adult, however, Jesse had trouble paying for his health care. He couldn’t afford insurance, Lutgen said — the cheapest Affordable Care Act plan available cost $300 per month and carried a deductible of several thousand dollars. Insulin, which Americans with type 1 diabetes rely on daily, can cost well over $1,000 per vial before discounts, though most patients with insurance pay far less.

Like most Americans, Jesse didn’t have the flexibility to pay $10,000 a year for prescription drugs — a distinct possibility in light of the insulin price hikes that occurred during his lifetime. A patient paying roughly $175 for a vial of insulin 15 years ago might pay nearly $1,500 for the same dose today, according to an Elsevier database. Costs for Americans with diabetes often reach into the thousands, or tens of thousands, annually.

He would occasionally ask his mother to borrow money. Once, she recalled, she brought him two vials of Lantus, the Sanofi insulin product, back from a trip to Washington state — leftovers from a friend of a friend who’d recently died.

It wasn’t the formulation that Jesse used, she reasoned, but they might prove useful anyway. Days after Jesse died, Lutgen said, she found the two Lantus vials in his apartment, empty. He hadn’t asked to borrow money.

“That kind of hit me, too,” Lutgen said. “Why didn’t he ask me for help? And then when I found out how much insulin cost, I thought: How do you ask your mom for $1,300 a month, every month, for you don’t know how long?”

Advocacy campaigns like Lutgen’s have helped to elevate insulin from a health care obscurity to a central element in each Democratic candidate’s health policy agenda.

Sanders has spent $5.5 million on television ads in Iowa alone, according to FiveThirtyEight — many of which spotlight his “caravan” to Canada or images of a patient drawing a syringe from an insulin vial.

Warren, whose proposal to let the federal government manufacture insulin and other generic drugs is a signature campaign plank, also orchestrated an investigation in which Senate aides called nearly 400 pharmacies around the country to ask whether they stocked a cheaper generic product from Eli Lilly, introduced in the wake of price criticisms. (Only 17% of pharmacies said they carry the product.)

Former Vice President Joe Biden, in interviews, has cited insulin as a key example of how Americans are getting “ripped off” on drug prices. Tom Steyer, the billionaire hedge fund manager and environmentalist, complains that drug companies “charge Americans 10 times what they charge Canadians” for insulin. And Klobuchar, in 2019, invited Nicole Smith-Holt, the mother of Alec Smith, as her guest for Trump’s State of the Union address. When she declared her candidacy a week later, she retold Alec’s story. Her message quickly caught fire, even spurring an impassioned tweet from the pop icon Cher.

On Monday, Michael Bloomberg, the former New York City mayor, became the latest candidate to excoriate the Trump administration and Azar for their lack of success lowering drug prices and for the perceived conflict of hiring a former pharmaceutical executive to lead that effort.

“The Trump administration is full of pharmaceutical executives,” Tim O’Brien, a Bloomberg adviser, said on a call with reporters. Azar, he added, “in his work for Eli Lilly, prior to joining the administration, doubled the price of its top-selling insulin product over a five-year period.”

Caitlin Oakley, a spokeswoman for Azar, said the criticism was “old news,” and that Azar has prioritized lowering drug costs more aggressively than any prior health secretary.

“In fact,” she said in a statement, “it is his deep knowledge about the opaque drug pricing system that has driven this administration priority forward.”

Even in the campaign’s early stages, long-shot candidates spotlighted their own insulin bona fides. Eric Swalwell, the California congressman, whipped an insulin vial out of his pocket during a CNN town hall, telling a national audience that he had carried the medication on his person for three months after a constituent gifted it to him.

“When you run for president, you can’t go a couple of days without talking to somebody who’s describing someone they love who’s dependent on insulin or some medication,” Buttigieg told a STAT reporter at a recent meeting with the Boston Globe’s editorial board.

One particular example, Buttigieg said, remained top of mind.

“A lady gave me an insulin vial the other day that she had spray-painted gold,” he said. “The tag on it said: This is worth its weight in gold, and it shouldn’t cost that. You see what people are up against, and it requires action.”

Janelle Lutgen
Lutgen (left) and her daughter Theresa (right) give a gold insulin vial to Klobuchar (center) at a campaign stop in Waterloo. Rebecca F. Miller for STAT
Janelle Lutgen
The gold-painted vials that Lutgen and other advocates have distributed to elected officials across the country. Rebecca F. Miller for STAT

Lutgen’s advocacy represents just a tiny slice of the fast-growing nationwide effort to draw attention to insulin prices. Her efforts fall under the umbrella of the Gold Vial Project: a loosely organized group co-founded by Greenseid and another Minnesota-based advocate, Meghan Mateuszczyk.

 

One affiliated advocacy network, the insulin-focused nonprofit T1 International, has grown to encompass chapters in 34 states.

The growing “Insulin for All” campaign and other diabetes advocacy organizations have orchestrated regular insulin “caravans” to Canada, a protest at Eli Lilly’s U.S. headquarters, and a “die-in” at the Cambridge, Mass., offices of another insulin manufacturer, Sanofi. (In a statement, an Eli Lilly spokesman said that 95% of patients using Humalog pay under $100 monthly and touted the company’s half-priced generic, Lispro. The spokesman faulted health insurers and pharmacies for failing to cover or stock the cheaper medication.)

Lutgen’s enthusiasm, and her proximity to the Iowa caucuses, has earned her star status within the Gold Vial Project, which aims to reach elected officials at all levels and gift them both a vial and the message that Buttigieg referenced: To people with diabetes, insulin is worth its weight in gold — but that’s not what it should cost.

So far, Gold Vial advocates have delivered vials to six presidential candidates — in addition to Janelle’s handoffs, there has been a California delivery to Bloomberg and a New Hampshire presentation for Yang — as well as 11 more to members of Congress and 18 to state lawmakers and local government officials.

Soon, the Insulin for All movement could even have a lawmaker born of its own ranks: Quinn Nystrom, a longtime insulin advocate and Democrat running to represent Minnesota’s 8th Congressional District on a largely health care-centric platform.

The informal grassroots groups have also enjoyed increasing backup from national organizations more closely tied to the political mainstream. Health Care Voter, the left-leaning group founded in 2017 to oppose repeal of the Affordable Care Act, recently announced a new spinoff organization: Affordable Insulin Now.

“We had so many conversations with advocates and patients across the country who knew there was a void that needed to be filled,” said Rosemary Enobakhare, the group’s director. “We decided to take this on not just at the local level but at the federal level, to make sure they know that people are literally pleading with them.”

Janelle Lutgen
Lutgen speaks during a meeting of Iowa’s chapter of T1 International, a national Type 1 diabetes advocacy group. Rebecca F. Miller for STAT

At a meeting of the Iowa T1 chapter in a library basement just outside Iowa City, Janelle and Theresa Lutgen were celebrating a more local victory. The previous week, state lawmakers had introduced legislation capping copays for insulin at $100 per month, an effort to prevent Jesse’s story from playing out even for Iowans with health insurance.

Despite the chance for a major victory in the state legislature, however, it was Lutgen’s success contacting the national political figures campaigning for the Democratic nomination that fueled the discussion.

John Tagliareni, the Iowa chapter leader, summed up her success in simple terms: “How do you not listen to a mom who lost her child to corporate greed?”

Lutgen, however, won’t let herself be swayed by any of the sympathetic overtures the Democratic candidates make when they hear her story. As the chair of the Jackson County Republican Party, she plans to vote for Trump come Election Day.

But she has relished the opportunity to ensure that even a Democratic president would address the issue dearest to her heart. Access to insulin, she says, shouldn’t be partisan.

“If I had to choose,” she said, “I liked what Andrew Yang had to say on drug prices.”

And while she is a committed Republican, even Lutgen admitted she had reservations about Trump’s efforts on drug pricing. He should be pushing Congress harder to pass a drug pricing bill, she said, citing the Senate package authored by Sen. Chuck Grassley, the Iowa Republican.

The more time passes without real reform, the more Lutgen has begun to doubt whether Azar, the former Eli Lilly executive, is likely to fix the problems that contributed to her son’s death.

“I’m starting to have my doubts,” she said. “Maybe it would be better to have a doctor — somebody who has the patients in mind first, and not pharmaceutical companies.”

  • I believe much of the insulin problem in escalating of pricing occurred when Eli Lilly came out with the insulin pens, where you dial the amount of insulin units you need and inject it. They raised the price of the pens so much higher than it was when it was in a small 10ml bottle and the patient had to retrieve the insulin with his needle and than inject themselves. Than the price of bottled old fashioned insulin starting being hiked. Another factor which hiked and escalated the price of insulin is when the pharmaceutical manufacturers invented the longer acting insulins like Lantus, and than the price of the old fashioned insulin started going up in unison . Yes Eli Lilly as well as the other insulin manufacturers like Novo Nordisk and Sanofi are guilty. The physicians and patients alike should demand the older insulins be mass produced again which were reasonable, about $40 per vial maybe 30 years ago. It is all about profit. Many of the sophiscated insulin do control blood sugar better, but part of the problem is the patient who does not control their diet and does not strictly control their sugar and carbohydrate intake and depends on the insulin to regulate their blood sugar, and not exercises as well as they should. It is a tough problem. But I contend that the manufacturers as well as the patient are part of the problem and the physicians share blame for prescribing the higher priced pens, and the longer acting insulins when really the other insulins in the bottle that had to be injected controlled diabetes but the patients were not controlling their diet and did not do their due diligence in exercising.

  • My Januvia cost upwards to $500 for 1 pill for 30 days. Besides Metformin should be pulled from the market, my ENDO didn’t even know that the FDA had Black Listed it for Chinese Cancer agent same as the generic BP meds and full spectrum of Zantac https://www.health.harvard.edu/blog/popular-heartburn-drug-ranitidine-recalled-what-you-need-to-know-and-do-2019092817911 How any other drugs carry the same cancer risk. Since the FDA approves Horrid drugs. I’ve a full sheet long of drug reactions. Want to lower drug cost do away with blister packs, hard to open bottles, horrid tasting ones, and give us a place to return the medicine if we react to it. I’ve done so on 1 Freaking pill and am stuck with how to get safely rid of a dangerous 29 other pills which said bottle cost over $500. My diabetic test strips are put in the bottle CODE side up, instead of Blood Intake side up, which cost more money as you error out the strip when you touch the CODE side it is not meant to be touche.

  • First, the amount of insulin a person needs varies GREATLY person to person. And no one should be penalized because their biology requires them to use more Insulin than another person.

    Secondly, every insulin is not created equal. There are several long and short acting insulin’s out there. Most often it’s your insurance company that will decide which insulin you should be taking, not you or your doctor. So then you take the cheaper but inferior insulin that is partially covered by insurance, or pay out of pocket for your preferred insulin – even if you have insurance!

    Third, how can we expect uninsured people to pay the full sticker price on insulin, when the insurance companies aren’t even paying that. Someone please explain this to me.

    Lastly, watch out for those politicians who want to repeal the protections to people with pre-existing conditions – because diabetes is one, obviously. I don’t know how one can be comfortable with repealing that protection but also wish for cheaper drug prices.

  • The claim that a dose of modern insulin is well over $1500 is inaccurate. It’s more like $400 per vial (1000 units). 4 bottles of insulin ( $1500 worth) is more than a month supply for many patients. Inaccurate claims wreck the credibility of the argument and hurt efforts to reign in costs.

  • I hate it when people who don’t understand pharma bash the industry, but I don’t understand PBMs and want to bash them.

    Could someone explain or link to an explanation of why PBMs exist, what service they provide, and why the market does not route around them if they are responsible for so much seemingly unwarranted markup? Can someone give the “steel man argument” for the PBM business model?

  • Few facts are simple and very few understand it and that includes the authors the article.

    * Insulin is a cash cow and PBMs more than the companies and they milk the system because patients would die otherwise.
    * Marginally better insulin is used to raise prices by as high that can be tolerated. Patients want to extend life.
    * Same story applies to other drugs.

    Our health care system is rigged by pharma companies, PBMs and legislators are in bed with them.

    Legislators have no ethics or morals.

    Find an ethical legislator with morals who will stand up for electorate, we will find a saint.

  • I have been a T1 for 54 years, many of which with no insurance. Eli Lilly has a program to help those in need. NO ONE SHOULD HAVE TO DIE! Many times through the years I have contacted other diabetics who may have extra insulin to purchase. Since I became a diabetic in 1966, I have seen insulin go up from $2.50 per vial to ridiculous prices for those in need. It is very sad that GREED plays a more important part than helping another human being live.

  • It’s amazing to me that this woman, who is a dedicated Republican, doesn’t seem to have bothered to try to give any of them one of her vials. They are the ones currently in power, who can make the change that she advocates. Is she talking to them too? Or does she think there’s no point, even as she votes for them to continue to put pharmaceutical economic interests first?

    • I’m giving vials to every single legislator I see.. EVERY.SINGLE.LEGISTLATOR. There just aren’t a whole lot of republicans campaigning in advance of the Caucus.
      I’ve already given one to my Republican State Senator, and hoping to get one to a local House Representative Saturday.
      After the caucus is over, I’ll be checking for area Town Halls, probably even a few counties over. Because we need everyone on board! EVERYONE.

  • Are we also ignoring that the general public seems to be equating all insulin as the same thing? I’m sorry, but having your mom pick you up a bottle of Lantus (from a friend that died out of state) if you’re on Novolin or Humalog is a recipe for disaster. All types of insulin are NOT substitutable on a 1:1 basis. If you are in need of assistance, please talk to your doctor or pharmacist on how to switch products or use existing product smarter. Yes, the gross to net bubble has gotten WAY out of proportion, but let’s not continue to pretend that insulin is a commodity and that there is no real difference in formulation; because there is.

  • Here’s a puzzle that the candidates and the reporter ignore.

    The net price for Lantus *declined* by more than -50% from 2015 to 2019. But patients are still being forced to pay based on the list price, which has doubled during this period. https://drugch.nl/2M0AObk

    To fix this terrible situation, we must acknowledge the actual facts of the drug channel and insurance design. The gross-to-net bubble is hurting patients.

    • Manufacturers inflate their prices primarily to pay rebates to PBMs, who pass most of those dollars to the health plans, who use them to lower premiums for everyone, and not to help those actually buying the drugs. It’s a perverse cycle that is seeing list prices rise dramatically, while net prices to manufacturers are actually going down.

      The problem for the federal government is that the Medicare Part D plans use those rebates to lower their premiums and the government subsidizes premiums to the tune of some 75%. Also, the very high price increases drive higher Medicaid rebates such that the states, post rebate, are getting insulin essentially for free. In other words, the government is as addicted to the rebate dollars as the private plans. The congress was going to shoot down a regulation that would have banned rebates because it generated “savings” that they wanted to then use on other projects so HHS had to pull that regulation, that really would have solved the root of the problem, because CONGRESS was going to grab the money. Members of congress need to take a hard look in the mirror on this one.

      The folks on the Hill just have to bite the bullet and stop the rebate train, so all players can get off of it, since no single player (manufacturer, PBM, plan) can get off on their own without serious economic consequences. Once they do, the manufacturers will only have net prices to compete on and they will be WAY lower than where their current levels are now, as insulin is known to be rebated in excess of 70%.

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