#insulin4all Action on U.S. Insulin Pricing

On Friday, September 8th, 2017, members of the #insulin4all community came together, in solidarity with the Lilly HQ protest, to make a series of calls to their representatives and senators at the federal and state level. We called to inform, educate and advocate for lowering insulin prices and increasing access in America. We let them know that the high prices being charged by Novo Nordisk, Eli Lilly and Sanofi for a medicine necessary for survival are unacceptable.

To everyone who called, THANK YOU! We are so glad you took a stand. Every call made, every email or letter sent, means that your representative knows someone cares about the issue of insulin access and drug pricing. Please don't stop there. Keep up the calls and letters, and engage with other people locally to join you in the fight.

At T1International we will continue to work on these issues on a global scale. With your continued passion and energy, we can keep pushing this movement forward. We are a very small team with no full-time staff, so we will do our best to coordinate more demonstrations outside of Novo Nordisk and Sanofi, but we will need your help to make it happen!

One thing is for certain, we must keep raising our voices to ensure we are heard! If all six million Americans that are insulin dependent speak up, insulin manufacturers and government representatives will not be able to turn a blind eye to this crisis any longer.

Here’s what you can do to take action:

  1. Call your representatives. This means calling your senators, your congressional representative and your state representatives. To find your federal representatives, enter your zip code on Contacting Congress. To find your state representatives, look up your address on Open States. When calling, ask to speak to a legislative aide or staffer who works on health policy.
  2. Tell them your story. This is often the most important thing to share with your representatives. Do you have a story of a time you or your family had to buy insulin out of pocket or struggled with costs? Do you have fear and anxiety of not being able to afford the costs of your insulin or diabetes supplies day to day? Tell them! If you're nervous about this part, reach out and we can help you.
  3. Have an ask. Telling your story makes the issue real, but we also need to ask our reps to take action on the high price of insulin. Here are some examples:
    -Ask your state representative if you can arrange a meeting to speak about insulin pricing in person. If you get a meeting, we can help you prepare for it.

    -Ask them to support specific legislation that would help end the insulin pricing crisis, and ask them to oppose any legislation that would make the crisis worse.

    -Ask them to consider bringing forth legislation similar to SB539, which was recently passed and signed into law in Nevada.

    -Most importantly, tell them that the price of insulin in America is too high. Ask them to do whatever they can do to bring unaffordable costs down and ensure all diabetics have access to the insulin they need.

    -Tell them about the protest happening on September 9th and ask them if they will voice their support. See below for some facts you can offer to help them understand the issue.

  4. Tell us who you contacted by filling out the simple form. You can also Tweet it out and post it on Facebook or Instagram. Tell us what the outcome was and where your representative stands.
  5. Connect! If you tell us where you are based, we will do our best to connect you to advocates in the same area. Let the connections and advocacy continue beyond this day as we continue to fight for #insulin4all.
If you want some additional facts to support your story, try these!

  1. More than 7 million Americans are insulin dependent. More than 25% of American respondents to our 2018 survey said that they have had to ration insulin due to cost.
  2. Thirty-nine percent of Americans are either uninsured or subject to high deductible health plans. This means a large percentage of people with diabetes are subject to paying list prices for insulin.
  3. Insulin was first used to treat a person with diabetes in 1922 and the discoverers intended it to be accessible for all. Now, almost 100 years later, the cost of insulin in the USA is causing people to ration insulin and skip injections. 
  4. List prices of insulin have been rising at the same rate at the same time for at least the past 10 years.
  5. The list price of Humalog is $274.70 per a vial (as of May 2017). This is a price increase of 1123% since June 1996. Inflation in the U.S. was 56% during the same period.
  6. When searching “insulin” on Go Fund Me, over 6,000 results are returned.
  7. Shane Patrick Boyle, an artist who had moved to Arizona to take care of his mother and was in between health insurance plans, died from diabetic ketoacidosis. He was $50 short in his Go Fund Me for insulin.

Response to the argument that patient assistance programs are addressing the problem:

  1. At most only 10% of people in need will actually benefit from Lilly’s newest program. That estimate is coming from the company itself.
  2. To receive free medications from pharma programs, patients must meet very specific program eligibility requirements. Even meeting the criteria does not guarantee eligibility for the program.
  3. Jordyn Wells, Diabetes Payer and Institutional Marketing Strategy at Eli Lilly and Company, told Diabetes Mine that most of what Lilly has introduced into the marketplace are basically "band-aids" that are “not ideal,” but are short-term solutions.

Advocacy Resources

Download our talking points to educate others about insulin price issues.

Engage with #insulin4all advocates on Twitter.

Check out our stories about people struggling to access and afford their insulin in America.

Save and share these graphics with the #insulin4all hashtag.
Access to Insulin is a Human Right
the insulin4all hashtag repeated several times

The T1International Advocacy Toolkit will give you ways to organize, plan & collaborate with people who are fighting for the same things you are.

The last time I tried to use Lilly’s patient assistance program, I had just been laid off. Even though I had a lay-off notice and documentation, they used my income up until that point to show that I could not benefit from the free access. – Angela L