Youth travels to Congress to lobby for diabetes funds

0 Comments | Oakland Tribune, Jun 17, 2007 | by Suzanne Bohan

Since his diagnosis four years ago with juvenile diabetes, life has become a ritual of needle pricks for 14-year-old Christopher Bolt.

About four times a day, the Hillsborough teen plunges a tiny needle into one of his fingers to test his blood sugar levels, and every three days inserts a 1-inch needle that delivers a continuous supply of insulin to allow his body to convert sugar into the energy he needs to function.

Even with that constant care, he walks a metabolic tightrope between life and death.

Even if you maintain it every day, said Jenny Bolt, Christopher's mother, one slip- up can be disastrous. Too little blood sugar can cause swift loss of consciousness and even death, she explained, while too much over time destroys organs, leading to devastating outcomes like blindness, amputations due to nerve damage, and kidney failure.

Today, Christopher and his mother arrive in Washington, D.C., in one small effort to wrest control over the disease that altered Christopher's life and fueled his parents' commitment to finding a cure for juvenile diabetes. The condition is caused by the body's inability to produce insulin, a hormone that shuttles blood sugar inside cells, where it's turned into energy.

In comparison, type 2 diabetes, which is sometimes linked to excess weight, inactivity and poor diet, is caused by the body's struggle to create adequate amounts of insulin, or by the resistance of cells to absorb it. But like type 1, it also leads to a buildup of sugar, or glucose, in the bloodstream, with similar health consequences.

Historically, type 2 has emerged in adulthood, although its rate is climbing alarmingly in youth as well, due to lifestyle changes over the past two decades.

Christopher, along with 149 other kidsaged 4 to 17, were chosen by the Juvenile Diabetes Research Foundation to take part in the organization's Children's Congress from today until Wednesday. His father, Robert Bolt, is also active in the organization.

During the event, held every other year since 1999, the children visit Capitol Hill to appeal directly to politicians to support funding for robust research into a cure for type 1 diabetes. The children meet with their state's two senators and their local House member. Some will testify before a Senate committee on Tuesday as well, along with Mary Tyler Moore, the actress and chair of the foundation, who also has type 1 diabetes.

The idea behind the event is to put a human face on a condition that affects as many as

3 million Americans, and to urge lawmakers to reauthorize a diabetes-funding measure, said Larry Soler, vice president of government relations for the foundation.

Without passage of the measure, the federal research budget for type 1 diabetes will be cut 35 percent, from $430 million annually to $280 million, Soler said.

Members of Congress are bombarded with issues, he said. What the Children's Congress does is cut through the clutter and tells them why we really need their help. The theme of the children's visit is Promise to Remember Me.

From the kids' perspective, Soler added, diabetes is 24 hours a day, 7 days a week. There's never a day off.

Type 1 diabetes is also called insulin-dependent or juvenile diabetes. It's usually diagnosed in youth, although it can develop in adulthood as well. Type 1 develops after insulin-producing cells in the pancreas are destroyed through what's considered an autoimmune response, in which the body's immune system goes haywire, destroying healthy tissue as well as invaders like viruses or bacteria.

Ninety percent of those with type 1 diabetes have no relatives with the disease, although it's believed to have some genetic basis. However, it appears to take an external cause to trigger the disease, like a viral infection.

Type 1 diabetes requires a lifetime of insulin injections, and shortens lifespan on average 15 years, according to the diabetes foundation, although that figure varies depending on the management of the disease. Type 1 diabetes is the leading cause of adult blindness, amputations not caused by accidents, and kidney failure, said Soler.

Christopher was diagnosed with diabetes at age 10, shortly after he developed an inordinate craving for sugar. He emptied a full bottle of syrup on pancakes one morning, he said. He'd also become excessively thirsty and then had to frequently urinate, also a classic sign of diabetes. People crave water in an attempt to dilute high blood sugar concentrations, and which allows excretion of some of the excess glucose. The sugar craving is caused by the body's need for energy; although without insulin, the sugar can't be converted to fuel, so people still feel hungry and exhausted.

When he was overcome with exhaustion, among other symptoms, Christopher was rushed to the hospital in an ambulance, where a simple test determined he had type 1 diabetes.

For the first year, Christopher had to inject insulin five to seven times a day, and take blood samples up to nine times daily to test blood sugar levels. He then got an insulin pump, which continuously injects insulin and requires changing only every third day. He also now has a glucose monitor, in which a microchip slipped under his skin checks his blood sugar level, and sends an alert when it goes too high or too low. That requires changing every five days.