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Floor Speech

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Mrs. SHAHEEN. Madam President, I am 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 cochair 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 are reaffirming Congress's commitment to increase diabetes treatment options, to fund more research, and to prevent new cases.

While I am grateful that the Senate has passed this resolution again this year, I wish I could say that we are truly honoring the commitment that is outlined in the resolution. But, sadly, I am angry and I am frustrated over the lack of progress that spans not just years but decades to make commonsense 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 is actually a matter of life or death, literally.

This is an issue, as I have said to this body many times, that is personal for me and my family. In the Gallery today is my granddaughter Elle, who was diagnosed with type 1 diabetes shortly before her 8th birthday. I have 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 was formerly JDRF. Yet, every year, Elle, like all diabetes patients on some insurance, has to prove to her insurer that she still has type 1. Now, I find that strange because anybody who knows anything about type 1 knows that it is a chronic illness, that it doesn't go away. And I am angry because this is real for our family and for millions of families across the country. And it is scary.

Just this week, Elle was denied coverage for a prescription that she relies on to manage her diabetes. She was denied a 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. 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 has 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. It wasn't her doctor at the Joslin Center who made that decision. It wasn't her local primary care doctor. It was the insurance company.

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

We are lucky in our family because we have resources and we have time to dedicate to researching and solving some of these issues, to try to navigate the healthcare system, but, sadly, that is 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 her 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.

I know that Senator Collins and I have legislation. It is called the INSULIN Act. It is an effort to help people who cannot afford the cost of their insulin. We know that is an issue because spending on insulin has tripled in the last decade. Nearly one in five patients is 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 receives 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--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 Alaskan 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 is 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, in every corner of every State, we have 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 healthcare 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.

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