During my time as Chairman of the Senate Homeland Security and Governmental Affairs Committee, I have heard testimony from influential politicians, business people, advocacy groups, and officials from many governmental agencies. But, the most powerful testimony often comes from the people who put a human face on the important issues that our committee tackles. At a recent hearing that focused on improving care for people living with diabetes, we heard the story of the youngest person to ever appear before our committee, four-year-old Aidan Sweeney from Gray. Aidan’s story is not only an emotional account of the struggle of living with diabetes, but it also emphasizes the need to continue our support for promising new technologies that could, one day, help people like Aidan live a healthier life.
|Senator Susan Collins represents the State of Maine in the U.S. Senate|
Aidan was just 22 months old when doctors diagnosed him with Type 1 juvenile diabetes. This was devastating news for his parents, Tim and Caroline. Aidan’s mother described how his fingertips are scarred from blood tests—sometimes up to 12 times a day. He receives insulin through a pump, which he wears on his belt around his waist, 24 hours a day. Aidan’s illness, and his treatment, not only affects his quality of his life, but it also causes great stress and worry for his parents.
“I am always fearful that my son’s blood sugar will rise so high that he will enter into a coma or drop so low that he will seize or even worse,” Caroline Sweeney told us. “Every night, I check his blood sugar before I go to bed and pray to God that he will wake up in the morning. I never sleep through the night.”
As the founder and co-chair of the Senate Diabetes Caucus, I have learned a great deal about diabetes and the difficulties and heartbreak that it causes for so many American families as they await a cure.
Diabetes is a costly and devastating disease. Nearly 21 million Americans have diabetes, and one in three American children born today will develop the disease. It is a life-long condition that affects people of every age, race, and nationality. It is the leading cause of kidney failure, blindness in adults, and amputations not related to injury. Moreover, it is estimated that diabetes accounts for more than $132 billion of our nation’s annual health care costs and one out of every three Medicare dollars.
The burden of diabetes is particularly heavy for children and young adults with Type 1, or juvenile diabetes. They not only have the disease from an early age, but also must endure a lifetime of treatment and related physical and psychological complications. This is a disease that they will never outgrow.
In individuals with juvenile diabetes, the body’s immune system attacks the pancreas and destroys the islet cells that produce insulin. The average child with Type 1 diabetes will have to take 50,000 insulin shots in a lifetime. Moreover, these children and adults must closely monitor their blood sugar levels throughout their lives through frequent testing.
While the discovery of insulin was a landmark breakthrough in the treatment of diabetes, it is not a cure, and people with diabetes face the constant threat of developing life-threatening complications, as well as a reduction in their quality of life.
The fact is, current diabetes technology is inadequate. Some studies have found that even patients who aggressively manage their disease – for example, those who measure their blood glucose levels an average of nine times a day – spend less than 30 percent of their day in the normal range. The rest of the time, their blood sugar levels are either too high or too low.
Fortunately, however, there are new technologies on the horizon that hold great promise for treating diabetes and for improving the care and quality of life of people living with this terrible disease. At my committee’s recent hearing, during which we heard Aidan Sweeney’s story, we explored the potential for the development of a closed-loop artificial pancreas that could revolutionize diabetes care. The artificial pancreas would link two existing technologies, the insulin pump and the continuous glucose monitor. Used together, these two technologies have the potential to dramatically improve blood glucose control, which would improve the quality of diabetes care and help to prevent such serious and costly complications as blindness, heart attacks, kidney failure, and amputations.
The statistics about diabetes are truly overwhelming. The promise of new treatments is exciting. But what really motivates me to devote so much energy to this cause is meeting people like Aidan and his family whose lives have been forever changed by diabetes.
We must not give up. We must maintain our commitment to increasing funding for diabetes research and take full advantage of emerging opportunities. I want to thank Aidan and his family for taking the time to go to Washington, D.C., to share their story to remind us how important it is that we continue to fight to find new treatments, and ultimately a cure, for this chronic disease.