Shaheen Urges Colleagues to Join Efforts to Cap Cost of Insulin for More Americans During American Diabetes Month

(Washington, DC) – Today, U.S. Senator Jeanne Shaheen (D-NH), co-chair of the U.S. Senate Diabetes Caucus, delivered remarks on the Senate floor to recognize American Diabetes Month and push for the passage of her bipartisan ?Improving Needed Safeguards for Users of Lifesaving Insulin Now (INSULIN) Act. If signed into law, the bill would address the skyrocketing costs of insulin, remove barriers to care and make insulin more accessible for millions more Americans. Senator Shaheen, whose granddaughter Elle was diagnosed with type 1 diabetes, also detailed the impact type 1 diabetes has on millions of American families. You can watch these remarks in full here. 

Key quotes from Senator Shaheen:  

• “I'm angry and I'm frustrated over the lack of progress that spans not just years but decades to make common sense changes and find real solutions to the problems that face diabetes patients. For 38 million Americans, this isn't a matter of politics, of what political party you join, or if you don't belong to one. For those 38 million, it's actually a matter of life or death, literally.” 

• “I understand why Americans are angry with the status quo. They should be. We should all be. Because it is well past time we finally get help to those people who need it to address their type 1 diabetes.” 

• “Nearly one in five patients are still forced to ration their insulin.  Capping out of pocket costs for insulin and finding ways to increase insulin competition are no-brainers for most Americans.” 

• "I hope that we can also get this body to pass our INSULIN Act. Because for Elle, for families across this country and every corner of every state, we've got to do better for all of them. Because behind every statistic is a person who is just trying to make ends meet. We have the power here to make their lives easier, to make health care more affordable for the millions of people who are living with diabetes. We can create a future where no one has to choose between their health and their livelihood.” 

Remarks as delivered can be found below.

I'm pleased to come to the floor with my colleague, Senator Collins, to talk about the fact that this week, the Senate passed a resolution designating November as American Diabetes Month.

Every November, we work together, my friend and colleague, my fellow co-chair of the Senate Diabetes Caucus, Senator Collins, to pass this resolution so that we can raise awareness about what is a pervasive, chronic disease that 38 million Americans live with today.

The resolution also draws attention to the many barriers that patients face when it comes to receiving adequate care to manage their diabetes.

By passing this resolution out of the Senate, we're reaffirming Congress's commitment to increase diabetes treatment options, to fund more research and to prevent new cases.

And while I'm grateful that the Senate has passed this resolution again this year, I wish I could say that we're truly honoring the commitment that's outlined in the resolution.

But sadly, I'm angry and I'm frustrated over the lack of progress that spans not just years but decades to make common sense changes and find real solutions to the problems that face diabetes patients.

For 38 million Americans, this isn't a matter of politics, of what political party you join, or if you don't belong to one.

For those 38 million, it's actually a matter of life or death, literally.

And this is an issue, as I've said to this body many times, that's personal for me and my family.

In the gallery today is my granddaughter, Elle, who was diagnosed with type 1 diabetes shortly before her eighth birthday.

And I've seen firsthand the challenges that Elle my daughter, Stefany, and their family face trying to manage Elle's diabetes.

Managing type 1, especially when you get diagnosed at such a young age, is a complicated, delicate balance of daily insulin injections, blood glucose monitoring and other supporting drugs.

Elle and her mom and her dad have spent countless hours finding a treatment regimen that keeps her blood glucose level stable and allows her to live a full, happy life.

Elle is now 24 she lives in L.A., and she has spent years advocating herself to improve diabetes policies as part of breakthrough T1D which is formally JDRF.

And yet, every year, Elle, like all diabetes patients on some insurance, have to prove to the insurer, her insurer, that she still has type 1.

Now, I find that strange, because anybody who knows anything about type 1 knows that it's a chronic illness, that it doesn't go away.

And I'm angry, because this is real for our family and for millions of families across the country - and it's scary.

And just this week, Elle was denied coverage for a prescription that she relies on to manage her diabetes.

She was denied the medication that she needs to live her very busy and full life.

The medication she was denied does the same work of three other drugs combined, but now all of Elle's work to find the right treatment is back to square one because of a decision that was made not by her doctor, and she's been a patient at the Joslin Diabetes Center, which is one of the premier diabetes treatment centers, not just in the country, but in the world.

Wasn't her doctor at the Joslin Center that made that decision. 

It wasn't her local primary care doctor; it was the insurance company.

And I wish I could say this was the first time, but denials like these have become a common occurrence, and I think most folks know this, but in case you don't, as I said, type 1 diabetes is a chronic disease.

It doesn't go away because you turn another year older.

It doesn't go away because you move to a different location.

Elle is going to live with this disease - unless we have a breakthrough - for the rest of her life.

And she will spend every day, some portion of her day, thinking about it.

She will spend every day making choices about what to eat or drink, about the right exercise routine, and how she can best manage her levels.

And it is unconscionable that a decision by an insurer would make these choices even harder.

And we're lucky in our family because we have resources.

We have time to dedicate to researching and solving some of these issues, to trying to navigate the health care system. 

But sadly, that's not the case for so many families across this country, people like the single mom who works multiple jobs to keep food on the table for our kids.

I understand why Americans are angry with the status quo.

They should be.

We should all be because it is well past time we finally get help to those people who need it to address their type 1 diabetes.

So, I know that Senator Collins and I have legislation.

It's called the INSULIN Act.

It's an effort to help people who can not afford the cost of their insulin, and we know that's an issue because spending on insulin has tripled in the last decade.

Nearly one in five patients are still forced to ration their insulin.

Capping out of pocket costs for insulin and finding ways to increase insulin competition are no-brainers for most Americans.

Sadly, that hasn't been true in the Senate. In fact, this is an issue that received so much support from the American people that addressing insulin costs has sadly become a political football.

Unfortunately, that comes at the expense of patients who rely on daily insulin to survive.

Senator Collins and I started working on this issue of our legislation in 2019.

Part of the effort includes funding more research into curing diabetes.

The diabetes community has seen advances in treatment, but insulin, which was invented over 100 years ago, is still the only real way to manage the disease, the Special Diabetes Program, or SDP, funds vital research into type 1 at the National Institutes of Health. 

SDP also funds successful diabetes prevention and treatment programs for American Indian and Alaska Native communities, because they are disproportionately affected by the disease.

These programs have a proven track record, but until last year, the Special Diabetes Program was flat funded for two decades.

Senator Collins has done remarkable work, and I think it's not a coincidence that when she became vice chair of the Appropriations Committee, we finally got an increase in the reauthorization of the Special Diabetes Program.

But we have to pass that reauthorization again by the end of this year.

Now, I hope Congress will finally realize the importance of this program and provide it the funding that it deserves.

I hope that we can also get this body to pass our INSULIN Act.

Because for Elle, for families across this country and every corner of every state, we've got to do better.

For all of them, for the people who love them.

Because behind every statistic is a person who is just trying to make ends meet.

We have the power here to make their lives easier, to make health care more affordable for the millions of people who are living with diabetes, we can create a future where no one has to choose between their health and their livelihood.

Why wouldn't we take this opportunity to help our neighbors?

I know Senator Collins and I will continue to work toward that end.

Thank you, Madam President.

As co-chair of the U.S. Senate Diabetes Caucus, Shaheen has led action in the U.S. Senate to advance priorities that will lower the costs of insulin, invest in treatment and prioritize diabetes research. Shaheen has consistently worked to hold insulin manufacturers, insurers and pharmacy benefit managers accountable for the skyrocketing cost of life-saving insulin. Last year, Shaheen and U.S. Senator Susan Collins (R-ME) introduced their bipartisan legislation, the Improving Needed Safeguards for Users of Lifesaving Insulin Now (INSULIN) Act of 2023, which would comprehensively address the skyrocketing costs of insulin, removing barriers to care and making it more accessible for millions more Americans. 

Last summer, Shaheen and Collins introduced the Special Diabetes Program Reauthorization Act of 2023, bipartisan legislation to reauthorize and strengthen vital type 1 diabetes research. In March, Senators Collins and Shaheen secured a short-term reauthorization of the Special Diabetes Program (SDP) through the end of 2024. Earlier this month, the senators led a bipartisan letter to Senate leadership emphasizing the importance of the Special Diabetes Program (SDP) that was signed by a total of 55 Senators. 

The Senators also announced the bicameral, bipartisan Strengthening Collective Resources for Encouraging Education Needed (SCREEN) for Type 1 Diabetes Act, to improve early detection and screening for type 1 diabetes. 

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