BLUFFTON, SC. (WTOC) – A family in Bluffton is advocating for a bill that would make a specific Type 1 Diabetes (T1D) treatment more accessible and affordable for patients.
It’s known as the Increase Support for Life-saving Endocrine Transplantation, or ISLET Act. It was introduced to congress this past November. If passed, the act would reclassify islets, or pancreatic donor cells, as organs.
Sidney and Jacob Mack’s son Grady is one of approximately 243,000 children in the U.S. diagnosed with T1D.
When Grady was 3 years old, he became critically ill and spent five days in the pediatric ICU at Memorial. The Macks left the hospital knowing Grady would be dependent on insulin injections for the rest of his life.
Unlike type 2 diabetes, T1D is a lifelong disease that can’t be easily fixed or managed.
Every day, Grady has to deal with needle pricks, insulin pump changes and constant decision-making, not to mention the cost his parents pay to fill his prescriptions, which is upwards of $1,000.
Fortunately, Grady has a great support team, including professionals at the Everyday Diabetes Center in Pooler. Sidney Mack said his provider once stayed on the phone with her at 2 a.m., talking her through Grady’s care when he had a stomach bug.
Some families that have loved ones diagnosed with T1D struggle more to manage the disease.
“There’s just so many outside factors that go into it. You know, you have the sensor and the pump that do a good bit of the work for you, but you still have to confirm with blood finger pricks and make sure everything is calibrated like it should be,” said Sidney Mack. “You know, there’s so many aspects to it. It’s not just a straightforward disease at all.”
However, there are promising treatments, like islet transplants, that have been tested and show signs of reversing T1D in some patients.
The problem is that islets are classified as drugs rather than organs, making transplantations difficult for medical teams and centers to preform due to accessibility.
Insurance companies are also less likely to provide reimbursements for treatment, which can cost hundreds of thousands of dollars.
“If this bill does get passed, it would make it more accessible to more people you know. Insurances are more likely to cover it as an organ rather than a drug,” said Sidney Mack. “It allows more centers to have it and produce it and process it more efficiently, like I said, to help get it out to more people. And to treat people like Grady and other type 1 diabetics that have to live with this every day.”
Supporters say that broadening access to islet transplants for T1D patients has the potential to improve outcomes and advance research toward a cure.
The bill has been sent to the Senate Committee on Health, Education, Labor, and Pensions (HELP) for review. As of now, it’s unclear when congress will consider voting on it.
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