Diabetes congress

As founder of the Senate Diabetes Caucus, Sen. Susan Collins has done much to promote the need for research into the disease called the silent killer. Her sponsorship of the Juvenile Diabetes Foundation Children’s Congress last week put a human, heartbreaking face on this neglected crisis.

Nathan Reynolds of North Yarmouth is typical of the kids who came to Washington from every state. The eight-year-old enjoys school, sports and all the other activities of childhood. He also tests his blood sugar level four to six times a day. He injects himself with insulin four times a day. He counts the carbohydrate content of every meal and snack. He still faces a future of organ failure, heart disease blindness, circulatory problems that can lead to amputation — and premature death.

More than 16 million Americans (including 70,000 Mainers) have diabetes. About one-third are undiagnosed and probably will be until a debilitating complication arises. It is the nation’s most expensive disease, at $98 billion a year, and its seventh leading cause of death. Yet only 8 percent of Americans polled consider it a serious disease.

It is an epidemic without a public outcry.

There’s a reason for this neglect. About 3 percent of diabetics, like Nathan Reynolds, have Type 1, insulin-dependent diabetes that develops in childhood from cellular malfunction. The rest, the vast majority, have Type 2, non-insulin-dependent diabetes that develops in adulthood when a genetic predisposition combines with advancing age and obesity. Sadly, the incidence of Type 2 is increasing in adolescents, the result of a sedentary lifestyle.

Diabetes, then, is the disease of kids, the elderly and (given the connection between nutritionally deficient diet and obesity) the poor. Little wonder that a disease that causes so much harm to so many people gets so little attention.

Or that it’s share of federal research funding continues to drop. There is some amazing cell-level research being conducted, especially at the Juvenile Diabetes Center at Harvard Medical School, but federal support lags. In the last 12 years, the budget for the National Institute of Health has grown by 100 percent, but the amount spent on diabetes research has increased by just 35 percent, barely the rate of inflation.

If Congress’s financial commitment to diabetes research is weak, its lack of attention to detail is alarming. It took years of intense lobbying to get Medicare coverage for the simple, yet essential blood-sugar monitoring strips. The Balanced Budget Act of 1997 allowed increased Medicare reimbursement for crucial self-management education, but that increase came with a catch: Each community diabetes education center (Maine has 44) must undergo an expensive and extremely time-consuming certification process. Many centers, particularly small rural ones, don’t have the money or the personnel to get certified and Congress didn’t think to provide any help. If they close, their patients can add long drives to their diabetes-control regimen. Then there’s the wide variance from state to state in insurance coverage of diabetes, a snag no one seems interested in untangling.

There’s plenty for Congress, and for state legislatures, to do here. Bringing 50 kids to Washington won’t cure diabetes, but it may make it harder to ignore.