Diabetes Forecast

Call to Congress

Advocates climb Capitol Hill to lobby for diabetes funding

Call to Congress participants (from left) Michelle Foster, Niketa Calame, Julie Krupnick,
and Marianne Szeto.

When Kira Fonteneau was diagnosed with gestational diabetes, she was already familiar with the disease. And it wasn't just because her nephew has type 1. Many people in her community also have diabetes. "Coming from rural Alabama," she says, "[it seems as if] everyone has diabetes."

The pervasiveness of diabetes in the community was one of Fonteneau's major talking points when she spoke to members of Congress and their staffs in March as part of the American Diabetes Association's biennial Call to Congress. More than 200 people, including those with type 1 or type 2 diabetes, family members of people with the disease, health care providers, and researchers, braved the pouring rain and headed to Capitol Hill along with Fonteneau to tell their stories about diabetes and ask Congress to fund diabetes research and programs.

Fonteneau didn't just talk about her personal experience with diabetes, though. She explained how Alabama is rife with the disease—and why that's a problem not just for individuals but also for the state. She talked about the cost of diabetes supplies, for people with and without insurance. (For the nation as a whole, the annual cost of diabetes, including prediabetes, gestational diabetes, and undiagnosed diabetes, is estimated at $218 billion.)

But like that of the other advocates who went to Congress, Fonteneau's message was, at its core, about explaining the federal government's role in preventing diabetes, ensuring that those with the disease have access to the care they need, and finding a cure. "It was [also] about . . . having people focus on how diabetes affects the ones we love," says the 35-year-old lawyer from Birmingham, Ala.

Colin Garvin (left), age 10, and Connor Coffey, 9, at Call to Congress.

Like Fonteneau, Amy Coffey of Hickory, N.C., joined the march on Capitol Hill to stop diabetes through advocacy. Her husband, Brian, has had type 1 diabetes since he was young. Their 9-year-old son, Connor, was diagnosed with type 1 when he was 5. And, according to a nationwide screening program called TrialNet, their youngest son, Grant, has a 25 to 50 percent risk of developing the disease. "We wanted to share our story so they could put a face to diabetes," she says of why she and Connor traveled to Washington, D.C., to participate in Call to Congress.

Connor presented members of Congress and their staffs with drawings about his disease—a dinosaur eating diabetes in one, a foot stomping out diabetes and dynamite blowing diabetes to shreds in others—while his mother explained the importance of funding. "I said we don't want to rely on technology [just to improve how we care for diabetes]," Amy Coffey says of her desire to find a cure. "We don't want to prick our children's fingers."

To give members of Congress an idea of what it's like to live with diabetes, Coffey explained how diabetes affects every aspect of her family's life. "I talked about how tornadoes are a problem here in Tennessee [where the family lived until March] and [how] when one hits, I'm not just taking myself and my kids below the house," she says. "I'm taking enough supplies so that my husband and kid won't die."

Victor Gonzalez, MD, an ophthalmologist, chair of the Texas Diabetes Council, and clinical professor of human genetics at the University of Texas–Houston, joined Call to Congress with hopes of opening legislators' eyes to the economic need for funding. "In a situation like we have right now, where the economy isn't at its best, it's important to educate our legislators on the severe economic impact diabetes is having and will have in the future if it continues," says Gonzalez, who treats about 4,000 patients with diabetic retinopathy each year. He says increased funding could lead to research that answers questions about why some people's retinopathy worsens while others' doesn't.

"Legislators are always interested in finding out what my connection to diabetes is," says Gonzalez, who doesn't have diabetes. "My interest is fighting for my patients." Gonzalez hopes that members of Congress will take up the cause with him.

Diabetes advocates at Call to Congress hope that, after hearing testimonies from people like Fonteneau, the Coffeys, and Gonzalez, lawmakers will recognize both the personal and financial toll that diabetes takes on the nation and realize that this is an epidemic that they cannot ignore.



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