How Parents of Children with Type 1 Diabetes Can Improve Diabetes Care

By Shahd Husein/GluShahd

Jeff Hitchcock says he got lucky.

One day in 1989, he learned that his daughter Marissa, then two years old, had type 1 diabetes, which was devastating. But, he adds, she did not experience diabetic ketoacidosis, a potentially life-threatening complication that too often is what first signals the onset of the condition. The family’s endocrinologist was reassuring, as well, saying that science was churning out new devices and tools to manage blood sugar levels.

“We didn’t have the scary diagnosis—presented with the horrors—that a generation ago would have experienced,” Hitchcock says.

That first impression shaped the way the family approached type 1 diabetes. He was able to see life with type 1 diabetes as something that could be made better, and that perspective inspired his ultimate journey in advocacy for the diabetes community.

A mathematician, Hitchcock himself was already predisposed to be analytical about advocacy. He went home from the doctor and launched a website about his family’s experience living with type 1 diabetes. A few years later, he created Children with Diabetes (CWD) to provide education, inspiration, and support to families with type 1 diabetes. In 2000, at the urging of Laura Billetdeaux, a mother who relied on CWD for support, Hitchcock led the organization in starting Friends for Life, an international series of conferences that annually bring together families, researchers, and physicians.   

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The conferences were a huge success. Even so, Hitchcock felt he needed to do more for the community and searched for where he could best make a difference.

The answer came from Marissa. At the age of 28, she was participating in the design of an experiment to improve care, and therefore outcomes. T1D Exchange created a Quality Improvement (QI) Collaborative in 2016 that gathered physicians and educators from 10 diabetes centers and taught them methods to make inexpensive and simple changes to enhance the clinics’ quality of care. Hitchcock soon also became involved because he saw it could have an important impact.

“The QI Collaborative is bringing in care that is more meaningful and responsive to the needs of families,” Hitchcock says.

The goal of providing meaningful improvement shapes which questions T1D Exchange research should address. Type 1 diabetes is an individualized experience, where a one-size-fits-all approach is not necessarily the solution to better outcomes and quality of life. Thus, Collaborative meetings have become a forum for providers to discuss their challenges with the healthcare system and how to personalize care in a resource-limited system.

The need for improvement that meets individualized needs is a theme echoed by patients and parents. They have become frustrated, Hitchcock says, in seeing a flood of new devices that can lessen the burden of blood sugar management and not being able to access them because of out-of-pocket cost or insurance denials. Sometimes, a patient must document poor glucose control to get insurance to sign off on insulin pumps and continuous glucose monitors (CGMs), he says.

“You have to show a poor health outcome to receive better technology,” Hitchcock says. “It is silly and dangerous.”

In the U.S., Hitchcock points out, there are painful disparities in access. Individuals living in one area may receive insulin pumps and CGMs from insurance, while those living just 100 miles away may not. This is in sharp contrast to healthcare systems in places like the United Kingdom, in which insulin, pens, syringes, and other basic supplies for managing type 1 diabetes are available to everyone in need with fewer limits than in the U.S.

Hitchcock, who eventually became President of T1D Exchange’s Patient/Parent Advisory Board for the QI Collaborative, argues that insurance coverage policies for type 1 diabetes technologies must be reevaluated.

“We know that (insurance) paying for these supplies and technologies up front reduces the risk of long-term complications, which are really expensive,” he says.

Despite the barriers within the system, Hitchcock remains hopeful. Along with the prospect of better technology in the pipeline for people with type 1 diabetes, he sees growing clinical interest in patient and family perspectives on the psychosocial burdens of managing the condition. The QI Collaborative has been formed at the right time, he believes.

“Helping these healthcare team members deliver the right care to families through QI improvements [can] make a huge difference,” he says.

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