The Littlest Lobbyist

Diabetes Advocacy a Family Affair

Standing at the Capitol Visitor Center podium before a room of reporters, clinical experts and Food and Drug Administration officials, lobbyist Caitlin Ryan is steadfast and poised. As she speaks, a barrage of camera lights wash over her face.

“I hope the FDA is listening today,” she says, “and that the people making the decisions at the FDA know how badly those of us with Type 1 diabetes want an artificial pancreas.”

Composed and collected, she concludes with the firmness of a seasoned lobbying vet, imploring with urgent finality, “We don’t just want it, we need it.”

Caitlin is 11 years old.

Diagnosed with Type 1 diabetes at the age of 5, the Washington, D.C., native has since rubbed elbows with the high and mighty in pursuit of a cure for a disease that hits close to home.

“My dad and [brother], Duncan, have diabetes, too,” she told Roll Call. “My cat, Kitty-Cat, even has it.”

In 2005, Caitlin and her younger brother began to exhibit symptoms of Type 1 diabetes. Her parents, Michelle and Tim, felt it was time to get involved in the effort to find a cure.

“I called [Tim] to say we were on the way to the hospital with Duncan,” Michelle said. “He called his friend at [the Juvenile Diabetes Research Foundation] and said, ‘Now we want to be involved. We’ve gotta step up, we gotta do something.’”

Michelle and Tim soon became active in the foundation, taking Caitlin to FDA meetings and speaking in public service announcements to promote funding for diabetes research.

As a press aide to then-Sen. Joseph Biden (D-Del.), Tim found that getting involved in the group was a way to cope with the situation in a productive way.

“I was diagnosed in 1998, but when your kid gets diagnosed with any disease, there is a lot of frustration and anger you have. ... Advocacy is a great outlet to channel that anger into starting something positive,” he said.

For Caitlin, it started with a bag of hope.

“They delivered something they called a ‘Bag of Hope’ to our house,” she said. “It has a video and children’s books and things about how to take care of your diabetes. And they give you a bear named Rufus.”

Rufus comes equipped with a diabetes bracelet and body patches that direct children how to practice giving insulin shots and check their blood sugar levels. The group sends the bags to newly diagnosed children to help them get acquainted with their disease.

“There’s a lot of management, and you have to do it 24/7,” Michelle said. “But JDRF reaches out, and it’s great because they teach the kids and get them advocating for themselves.”

In 1970, two mothers from New York and Philadelphia founded the group, which raises money for research and organizes advocacy events allowing children with the disease to share their stories with Members of Congress.

“We want to find a cure and have better treatment for people with Type 1 diabetes,” said Cynthia Rice, vice president of government relations for JDRF. “Caitlin has been a wonderful advocate for the cause. Her poise and ability to articulate what diabetes research means to her family is great.”

Recently, Caitlin spoke at a news conference with Senate Diabetes Caucus Co-Chairwomen Susan Collins (R-Maine) and Jeanne Shaheen (D-N.H.), in a final push to persuade the FDA to provide guidance policies for artificial pancreas outpatient trials.

Caitlin is not an expert on such an esoteric topic, but she brings other virtues to the table.

“Too often we fail to recognize the urgency of addressing Type 1 diabetes,” said Shaheen, whose granddaughter Elle also has Type 1 diabetes. “Hearing the voices of those that wrestle with the disease’s challenges helps remind us just how urgent the fight to find a cure is.”

While not a cure, the artificial pancreas has received staunch support from the American Diabetes Association and the American Association of Clinical Endocrinologists, describing its development as the greatest discovery since insulin.

“I can only dream of the day that I can eat and do what I want,” Caitlin said. “An artificial pancreas would make this dream possible.”

On Thursday, less than a month after her appearance at the news conference, the FDA released draft guidance for artificial pancreas trials for at-home use.

“Our initial review of the draft [artificial pancreas] guidance indicates that the FDA has been responsive and listened to the recommendations of leading clinicians and researchers.” JDRF President and CEO Jeffrey Brewer said.

With the possibility of a better life for her daughter on the horizon, Michelle sees Caitlin’s continuing advocacy as an opportunity to meet other accomplished individuals with Type 1 diabetes.

“This past summer she met [Supreme Court] Justice [Sonia] Sotomayor,” Michelle said. “These people are great role models to tell you that you don’t let [diabetes] stop you from doing what you want to do.”

In addition to meeting high-level officials, Caitlin also enjoys galvanizing her friends and classmates to form teams for  the annual JDRF fundraising walk.

“The first year we walked around the Mall, but the last few years, it’s been at Nationals Park,” she said, her feet fidgeting with excitement. “It’s really fun and you finish, and you get to walk across home plate and you wave at yourself on the JumboTron,” a visible indication that what she does makes a difference.

“I do it so they know about the disease,” she said. “I do it because maybe it might work.”

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