Diabetes Patients Pressure Drugmakers Over High Price Of Insulin : Shots - Health News The price of insulin keeps going up. For people with Type 1 diabetes, high prices can be a life and death issue. Now a grassroots movement is pushing for change.
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'We're Fighting For Our Lives': Patients Protest Sky-High Insulin Prices

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'We're Fighting For Our Lives': Patients Protest Sky-High Insulin Prices

'We're Fighting For Our Lives': Patients Protest Sky-High Insulin Prices

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RACHEL MARTIN, HOST:

Insulin is getting more and more expensive, and that's costing lives. Some people with Type 1 diabetes have died because they couldn't afford the insulin they needed to live. Diabetes activists like Angela Lautner of Elsmere, Ky., say news reports of those deaths have called attention to the crisis.

ANGELA LAUTNER: But what really needs to be told is what Americans are doing to help stop this.

MARTIN: Today we're going to hear the story of a group fighting to bring insulin prices down. Bram Sable-Smith reports.

(SOUNDBITE OF PROTEST)

UNIDENTIFIED PROTESTER #1: (Chanting) Medicine for people.

BRAM SABLE-SMITH, BYLINE: Angela Lautner was one of more than 70 people demonstrating outside the Indianapolis headquarters of pharmaceutical giant Eli Lilly and Company in September.

(SOUNDBITE OF PROTEST)

UNIDENTIFIED PROTESTER #1: (Chanting) Medicine for people.

UNIDENTIFIED PROTESTERS #1: (Chanting) Not for profit.

SABLE-SMITH: There were protesters from at least 12 states, mainly Ohio, Illinois, Indiana and Kentucky, but also from as far away as New York. It was organized by the nonprofit T1International. The group advocates for people with Type 1 diabetes around the world. Type 1 diabetes requires daily treatment with insulin, and T1International founder Elizabeth Pfiester says the price of that insulin has taken center stage.

ELIZABETH PFIESTER: Insulin is kind of the face of the drug pricing crisis in America because we literally die without it. We're fighting for our lives.

SABLE-SMITH: The price of insulin is skyrocketing. The cost of a single vial has more than doubled since 2012 alone. And despite a series of recent deaths of people who were unable to afford the insulin they needed, there's been little substantive action by lawmakers to bring those prices down, so consumers are taking matters into their own hands. Pfiester and T1International decided to put pressure directly on the three companies that make insulin - Sanofi of France, Novo Nordisk of Denmark and Eli Lilly and Company in Indianapolis. Eli Lilly is a sponsor of NPR. Most of that advocacy happens online. But last year, the group held their first demonstration at the Eli Lilly headquarters.

PFIESTER: It was kind of the first time where people living with Type 1 were able to physically stand and show that people are angry enough to come out.

SABLE-SMITH: They held a second demonstration in May and a third one this September.

(SOUNDBITE OF PROTEST)

UNIDENTIFIED PROTESTER #2: What do we want?

UNIDENTIFIED PROTESTERS #2: Insulin for all.

UNIDENTIFIED PROTESTER #2: When do we want it?

UNIDENTIFIED PROTESTERS #2: Now.

SABLE-SMITH: They're asking for three things - transparency about how much it costs to make a vial of insulin, how much profits come from each vial and to lower the list price. Eli Lilly declined NPR's request for an interview, but in a statement, a spokesman said, quote, "we understand why people are making their voices heard," end quote. Meanwhile, the number of protesters has swelled with people like Angela Lautner. For 18 years, Lautner thought she was alone in her struggles. She was diagnosed with Type 1 diabetes in 2000 when she was in flight school, chasing her dream of becoming a commercial airline pilot. The diagnosis meant she was not allowed to become one.

LAUTNER: I cried harder over losing my dream to fly than I did at the diagnosis of Type 1 diabetes.

SABLE-SMITH: Over time, though, that's changed as she jumped through hurdle after hurdle to get the insulin she needs to live, spending hours on the phone with insurance companies, switching insulin to save costs, even moving to a new state. Then last year, she noticed other people with Type 1 diabetes tweeting similar stories under the hashtag #insulinforall.

LAUTNER: And I thought, my goodness, there's more people than me. I'm not the only one out here.

SABLE-SMITH: And she decided to get involved. After the first rally at Eli Lilly last year, Lautner organized her own group of diabetes activists in Kentucky, Ohio and Indiana.

LAUTNER: We had people show up. And it wasn't to talk about it. It was to organize.

SABLE-SMITH: And organize they have. They've met with legislators in all three states about establishing emergency insulin prescription refills and about making the cost of insulin more transparent. And there are similar groups starting up in Oklahoma, Pennsylvania, Minnesota, Illinois all pushing for the same thing - to make the voices of people with diabetes heard. For NPR News, I'm Bram Sable-Smith in Indianapolis.

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