‘Everything I do, it affects:’ Kids with type 1 diabetes testify before Senate panel

15-year-old Elise Cataldo has never known life without type 1 diabetes.

“I’ve had type 1 since I was one-year-old and so everything I do, it affects,” said Cataldo.

The teen says she still remains active but has constant reminders of her condition.

“When I’m playing soccer, I need to ensure my blood sugar is in the right range,” said Cataldo. “If it’s too high, I can become fatigued. But if it’s too low, I can become disoriented or even pass out.”

It’s a life 10-year-old Maria Muayad can relate to all too well, since she was diagnosed with type 1 diabetes three years ago.

“We know what it feels like to live the highs and lows of diabetes, literally,” said Muayad.

The two girls testified before a Senate committee on Tuesday about living with type 1 diabetes as lawmakers weighed the benefits of a federally funded program called the Special Diabetes Program (SDP).

SDP is a program for research and clinical trials focused on prevention, treatment and potential cures for type 1 diabetes.

It’s run by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

The program has been in place for the last 25 years.

“This enduring investment has enabled us to take on challenges beyond what we could support with NIH’s regular appropriations and to perform critical trials unlikely to be done by the private sector,” said Dr. Griffin Rodgers, Director of NIDDK.

“It’s put now life changing therapies in our hands and brought us closer to cures,” said Dr. Aaron Kowalski, CEO of JDRF, formerly known as the Juvenile Diabetes Research Foundation.

Cataldo said she has seen the difference from SDP in her own lifetime.

“I can sleep better at night and so can my parents because of SDP funded research,” Cataldo testified.

She pointed to new devices such as continuous glucose monitors and insulin pumps which were not readily available to people with type 1 diabetes when she was first diagnosed.

“When I was one, I was doing shots and that was about six shots a day not including finger pricks,” said Cataldo. “Just to see all the technology now that has advanced even the past two years, the past five. It’s amazing.”

Congress is now considering legislation to reauthorize funding for SDP so that money doesn’t run out by the end of September.

The bill has bipartisan support.

The witnesses who testified said it’s critical for lawmakers to make sure the funding remains in place.

“My dream and my family’s big hope is to cure type 1 diabetes,” said Muayad.

“We want to grow up and be able to tell our children, we don’t want to have to worry about them getting diabetes,” said Cataldo. “We want to be able to tell them in a past tense and say I had diabetes.”

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