Call to Congress: Fund Research and Make Insulin Affordable

There are more than 30 million children and adults who wake up every day with the knowledge that they have diabetes. They are as young as infants, and as old as 100 years of age. Many of them depend on insulin or other life saving medicines for survival. Diabetes has a human and financial cost. The financial cost is $327 billion each year. The human cost is higher, for a lost child or lost grandparent is a tragedy beyond dollars.

Fortunately, our Congress has a working Diabetes Caucus that works together; yes, you read that right, works together across the aisle. They work to fund research for a cure and for better treatment, and they work to protect people with diabetes from exclusion or other discrimination in health care. And they are working on lowering insulin costs.

Later this month, kids and adults with diabetes will descend on Congress, as volunteers with the American Diabetes Association. We will see Congressman Michael Cloud and his colleagues, and tell them our stories, and ask Congress to provide $2.165 billion for the National Institutes of Health’s diabetes and kidney programs, and $185 million for the Center for Disease Control’s Division of of Diabetes Translation. We also ask Congress to continue funding the highly successful National Diabetes Prevention Program. Last but not least, we ask that Congress continue supporting the Special Diabetes Program for Type 1 diabetes and native Americans with diabetes.

Beyond funding research, our Stop Diabetes advocates will demand that Congress act to make insulin affordable for people with diabetes. Not even those in Congress know where the dollars flow when it comes to insulin. What they do know is that the price has doubled in only four years and costs $5,705 per year for the average child or adult with Type 1 diabetes.

Only recently, we discovered in our own small business that there are two costs that touch our lives and our bank accounts. One is the copay at the pharmacy, but the other is the cost of insulin that’s paid by those who pay the premiums for health insurance. We may think that $25 at the counter is a good deal, but when we discovered that insulin was costing hundreds of dollars a month in premiums, we were shocked. What we thought we were saving at the front end was costing hundreds of dollars on the back end. If the real cost of insulin was $100 per month, the premiums would be much lower. These hidden costs are hurting people with diabetes and forcing people off of insurance, so it’s time for transparency.

The fight against diabetes isn’t over, but we are making real progress. And we won’t stop until the heartbreaking phrase “your child has diabetes” is history.”