UH Rainbow Babies & Children's Type 1 Diabetes Patient Represents the Hospital in Washington, DC

CLEVELAND, Ohio – One local family is heading to Capitol Hill this month to represent UH Rainbow Babies & Children’s Hospital (UH Rainbow) and ask their members of Congress to take action and make sure children can count on a strong health care network to meet their unique needs.

The Kanderski Family’s effort in Washington is part of a national push to elevate patient stories and educate lawmakers about the unique role of children's hospitals and the essential care they provide to kids like Ethan.

The in-person event, the 2023 Children's Hospital Association's Family Advocacy Day, takes place June 20-22. Patient families will represent their children's hospitals to increase awareness about and advance public policy priorities that address:

Timely access to doctors and other professionals trained to meet the unique health care needs of children.
The vital role Medicaid and the Children's Health Insurance Program (CHIP) play in families' lives, providing health insurance to nearly half of all children.

The mental and behavioral health emergency that children and teens are facing.

When Ethan was 7, he was diagnosed with Type 1 diabetes. “We were catapulted into a world that we barely knew about,” says Christine, Ethan’s mother. “But we were set up for success by being given the tools to navigate our new normal.”

UH Rainbow ensured that Ethan and his family were educated enough to feel safe to bring Ethan home post-diagnosis. “My mother lives with us and has Type 2 Diabetes and is insulin dependent, so there was some sense of familiarity,” says Christine. “She was able to help us calm Ethan’s fears and with support from our entire family, we have been successful in our journey thus far.”

Every three months, Ethan checks in with the pediatric endocrinology team to go over changes in care, adjustments in medications and updates in technology, and work together to make sure that he is on the right path. Ethan is currently using some of the latest technology for diabetes and it is essential in managing his T1D.

In managing insurance coverage, Christine has to coordinate prior authorizations for the medications and technology equipment needed to keep Ethan alive and thriving. This ensures that Ethan’s insulin and tech is covered and set up for the year. “It is frustrating and difficult,” says Christine. “Insurance only allots for so much. We try to be conscientious of what we use and how much, there are variables that are out of our control.”

Today, Ethan is doing well. His favorite activities are gaming, photography, tennis and riding his bike. Ethan and his family are looking forward to representing UH Rainbow in Washington.