What We Lost: A Call to Build Back Better

Share What You Lost and Demand Lower Drug Prices

Families United for Affordable Insulin (FUFAI), a forum led by T1International Ambassador Nicole Smith-Holt, has launched a campaign to highlight what we have lost to the high price of insulin. Every day, people with and impacted by diabetes miss out or struggle to afford further education, pay rent, buy food, and more in order to stay alive. Far too many of us have lost family and loved ones to unnecessary insulin rationing.

A staggering one of every four patients with type 1 diabetes has had to ration their insulin due to cost. We are done sacrificing. We are turning our pain into action.

Due to the release of the revised Build Back Better framework today we are updating our campaign as the timing and need for pressure is ON! The reconciliation package framework released on October 28th fails to include drug pricing negotiations. Now, there is an increasing need for swift action to hold the line by calling Congress Members (202-224-3121) and emailing letters and flyers to your federal representatives demanding Build Back Better to include Medicare negotiations. This needs to be a strong plan to lower prescription drug costs for Americans by letting Medicare negotiate drug prices and reducing the unchecked power of pharmaceutical companies. We literally cannot afford to sit on the sidelines.

Use the templates and information below to draft a note to your representative. Share this with people you know who have lost loved ones to insulin scarcity and rationing. Help us shout 'never again' on behalf of all those who have been denied universal rights such as housing, good health, and life itself.

How To Take Action

Call Members of Congress to demand that a plan to lower drug prices be put back into the Build Back Better plan. We don’t have much time. Please contact your members of Congress right away by calling 202-224-3121.
Sign the Public Citizen Letter. Urge your members of Congress to stand strong — they should demand Medicare expansion to cover dental and vision care, as well as to allow Medicare to negotiate lower prescription drug prices.
Write an email to your representative about what you've lost. Ask them to hold the line and demand that Medicare negotiation be put back into the Build Back Better plan. We suggest that the letter be one page or less. Click here for a template to use or follow the writing instructions below.
Include one of the images in this folder with your letter, or include your own image demonstrating what you have lost or had to give up due to the unaffordable cost of insulin.
Act NOW! Letters can have more emphasis than emails, but due to the urgency, we suggest you call and email first. Click here to find your representative.

How to Write to Your Federal Representative

1) Write 2-3 sentences of your personal story about how the high cost of insulin impacted your family, about how your life and the life of your loved one would have changed if insulin were more affordable. Consider sharing any of the following:

I lost [insert name/relationship] to insulin rationing and pharmaceutical greed and as a result I lost…
What it would mean to you if your loved one could have afforded insulin
What worries would go away if insulin were more affordable
What ‘price’ you pay because of worrying about the price of insulin and supplies

2) If you want to include more information about diabetes/insulin, feel free to include these:

Insulin is as necessary to a diabetic as oxygen, yet people with diabetes around the country are suffering from lack of access to insulin.
Over 7 million Americans rely on injected insulin to stay alive and healthy.
Eli Lilly, Novo Nordisk and Sanofi – the ‘big three’ insulin producers – dominate more than 99% of the world insulin market by value. Since the 1990s, the cost of insulin has increased over 1,200%, yet the cost of production for a vial of most analogue insulin formulas is between $3.69 and $6.16.
This situation is forcing many who cannot afford the cost of insulin and supplies to resort to drastic measures to stay alive. Countless people have to choose between buying their essential insulin and paying their rent, buying food, or other unthinkable sacrifices.
One of every four patients with type 1 diabetes has had to ration their insulin due to cost.
Among young adults between the ages of 18 and 25, studies have shown that this number is even higher, with 43% of patients having rationed. Many patients with type 1 diabetes have died in the United States because they have been forced to ration.

3) Demand that your US Representative support a Build Back Better Act plan that includes strong drug pricing reform. Tell them you are disappointed by the news that the BBB framework does NOT allow Medicare to negotiate lower prices for prescription drugs. The most crucial parts of the Build Back Better Act related to healthcare allow Medicare to directly negotiate drug prices with pharmaceutical companies – the fact that it has been removed is unacceptable. This decision has taken away hope for patients living with diabetes.

Share What You Lost and Demand Lower Drug Prices

How To Take Action

1) Write 2-3 sentences of your personal story about how the high cost of insulin impacted your family, about how your life and the life of your loved one would have changed if insulin were more affordable. Consider sharing any of the following:

2) If you want to include more information about diabetes/insulin, feel free to include these:

4) Address the letter to your Representative's name, if you don't know who they are, you can find out here.

5) Share this information or your letter on social media tagging your representative, T1International, and other accounts to keep the momentum going.

What Have You Sacrificed To Afford Your Insulin?

Please Note: