10-year-old Modesto boy carries message to D.C. and Congress about diabetes, insulin costs

Damian Reynoso of Modesto has been an ambassador and advocate for kids with Type 1 diabetes, giving him the chance to tell his story in the nation’s capital this month.

The 10-year-old was among 160 youth delegates from around the country to participate in the JDRF Congress, July 9-11, in Washington. The young people urged members of Congress to renew the Special Diabetes Program, which provides $150 million annually for Type 1 diabetes research.

Damian and other delegates also stressed the need for affordable insulin and health insurance, a matter of utmost importance for diabetics in the culturally diverse Central Valley. Damian was chosen as the JDRF delegate for Northern California and was the only one from the Valley.

“If you can’t afford insulin, then you will die,” Damian said. “You can’t live without it.”

The cost of insulin has almost tripled in the last 10 years and has become a crisis in the United States, said Shelley Jensen, a spokeswoman for JDRF. The organization was once called the Juvenile Diabetes Research Foundation but goes by JDRF today because both children and adults can have the Type 1 disease.

The federal government has a cap of $35 per vial on the cost of insulin for Medicare patients, but there’s no cost limit for children and other adults with Type 1 diabetes.

Jensen said the costs for uninsured families can be hundreds of dollars for a vial, which lasts a month. “There are many types of insulin and we are seeking policy that makes it so people can choose their insulin,” Jensen said. “If the insurance does not cover certain kinds of insulin, they are paying out of pocket or not getting the best control of their blood sugar.”

Damian made stops at congressional offices and talked with Sen. Dianne Feinstein’s staff. The student at Mary Lou Dieterich Elementary School in Modesto, who doesn’t shy away from microphones, also gave a speech to corporate sponsors of JDRF.

The delegates attended a Senate Appropriations Committee hearing on the Special Diabetes Program, participated in a town hall with celebrity role models and received training on how to advocate for issues.

The Special Diabetes Program was last renewed in 2020 and is set to expire in September. Legislation is proposed to renew the program for two years at $170 million annually.

Damian was 3 years old when he exhibited two of the four signs of Type 1 diabetes — excessive thirst and frequent trips to the bathroom. The two other signs are exhaustion and weight loss. Even before the diagnosis, the 3-year-old told his parents, Jose and Paola Reynosa, he had a dry “crocodile” mouth.

His mother took him to the doctor just before a scheduled summer vacation and tests revealed a blood glucose level of 496, four times higher than normal. The family canceled the vacation and Damian was admitted to a hospital.

Paola remembers the scars on her young son’s fingers from the needle sticks required for checking his blood sugar. “His fingers were so small and had so many holes,” she said. “The scars would get bigger.”

Today, Damian has an insulin pump and a monitor that automatically checks his sugar every five minutes. The fifth-grade student has learned to live with the chronic disease that affects 187,000 kids younger than 20 years old in the United States.

In tracking his carbohydrate intake, Damian knows that 12 corn chips are equal to 18 carbs. Paola said ordering at a restaurant becomes guesswork if there are no nutritional labels on the menu.

Damian said his favorite order is the not-so-secret-menu 4x4 hamburger (four beef patties and four slices of cheese), with fries and a Diet Coke, from In-N-Out Burger. “That is the biggest one,” Damian said. “My goal is to eat as much as my dad can eat. I can eat protein without correcting for it.”

The student has given speeches in his class on diabetes. If someone is eyeing his insulin pump in public, Damian seizes the opportunity to talk about the medical device and what it does.

Part of the trip to Washington, D.C., was meeting professional athletes who advocate for JDRF, such as Orlando Brown Jr. of the Super Bowl champion Kansas City Chiefs.

Loves the game of baseball

Damian plays baseball in the Salida Little League, requiring him to pay extra attention and disconnect his insulin pump while he’s on the field.

During one turn at bat, an inside pitch struck the insulin pump, Damian said, but it wasn’t a catastrophe. He has gone from playing catcher to pitcher and most recently was catching fly balls as an outfielder.

“I can do anything I can set a goal for,” the boy said. “I just have to work harder to do it.”

Damian applied to be a delegate for the 2023 JDRF Congress, listing his advocacy efforts and experience with diabetes.

Paola said the family is fortunate to have good insurance that covers insulin costs. Since the Reynosos moved from the Bay Area to Modesto three years ago, they have discovered the limitations of healthcare in the Central Valley.

The family drives an hour or longer for Damian to see a pediatric endocrinologist every two or three months. Only recently did an endocrinologist locate here for pediatric patients.

Paola began hosting Zoom meetings during the COVID-19 pandemic with families affected by Type 1 diabetes. She is fluent in Spanish and connected with many Latino families that struggled with language barriers in seeking education about diabetes.

“I was meeting families who have (diabetic) children who were learning to take care of themselves, so they could teach their parents,” Paola said.

The group since has expanded to include people from impoverished countries where Type 1 diabetes is still considered a terminal illness due to lack of healthcare.

Through the group, Damian has a friend in New Jersey who uses insulin that is past its expiration date. The family rations insulin because it can’t afford insurance, Damian said.

A bag filled with hope

Some major pharmaceutical companies have pledged to lower insulin costs. In March, Gov. Gavin Newsom announced a contract with a manufacturer to make $30 insulin for California residents who need it.

Paola was instrumental in creating a “Bag of Hope” for newly diagnosed kids, containing the items they should have for managing diabetes. The Bags of Hope are offered with information and books in Spanish.

Like her son, Paola has also been recognized as a top volunteer for JDRF’s Northern California chapter.

Damian points out that research is trying to find a cure for the disease. “Even if it’s not in my lifetime, I will keep asking for funding and fighting for more research for a cure,” he said.