Saturday, July 5, 2003 | 2:43 a.m.
TWO OR THREE times a week, 12-year-old Michelle Herrera of Las Vegas activates a pump that drives insulin into her system through a catheter. She draws a drop of blood from her finger eight to 10 times a day to measure blood sugar.
Herrera is "pretty much used to" the minor pain, she says. But she adds, "It's a hassle."
Herrera is one of more than 1 million children with type 1 diabetes, commonly called juvenile diabetes. In addition to daily stresses, the disease puts children at higher risk for heart and kidney disease and can shorten their lives by 15 years.
There is no cure, but Herrera is out to change that, she said.
On a visit to Washington two weeks ago, Herrera joined nearly 200 young delegates at the third "Children's Congress" convened by the Juvenile Diabetes Research Foundation.
"These children are the best lobbyists we have because they are living with type 1 diabetes," said Nichell Taylor Bryant, spokeswoman for the Juvenile Diabetes Research Foundation International, a high-profile player in the annual congressional battles over disease research funding. "They are able to put a face on the numbers."
The children sang on the Capitol steps, met with their lawmakers, and posed for photos with celebrity activist Mary Tyler Moore. They were cute when they needed to be, but they were also tough negotiators at the hearing table -- six of the children testified at an emotional Senate hearing.
Their message to Congress was simple: spend more money on diabetes research.
"I think that in a couple of years we can find a cure," Herrera said last week.
There is debate among researchers about that. But activists say juvenile diabetes studies -- primarily focused on what causes the disease and on a promising new pancreatic islet cell transplant -- is in a critical phase.
Herrera and her fellow delegates were an example of how there are all kinds of lobbyists in Congress. The well-heeled big shots with the tailored suits and expensive cell phones typically get the most attention, but on occasion the lobbyists with the biggest voices are the ones with the smallest bodies.
Shortly after the June 24 hearing, the Senate approved an amendment that would create a demonstration project in which Medicare would pay for islet transplants.
Sen. Susan Collins, R-Maine, who convened the Senate hearing, recalled meeting a boy with juvenile diabetes.
"He told me that he would give anything in the world to have even one day off from his disease so he could live like most other children do," she said.
During Herrera's whirlwind tour of Capitol Hill, she met with Rep. Shelley Berkley, D-Nev., and Sens. John Ensign, R-Nev., and Harry Reid, D-Nev. During their brief meeting, Reid turned to an aide and said, "Give her whatever she wants," Herrera recalled with a giggle.
Specifically, the children were leaning on their lawmakers for a 10 percent budget increase for the National Institutes of Health, which currently operates on $27.3 billion. The House and Senate are considering an increase of about 3 percent for next year.
Ultimately a heftier NIH budget hike will translate into more diabetes research, advocates said. NIH this year is spending about $845 million on all types of diabetes research, the culmination of a steady increase since the $540 million budget in 2000.
Even the children lobbyists know that every year some of the fiercest lobbying in Washington centers on disease research. There's only so much money to go around as Congress and NIH, which manages a number of the nation's top disease research institutes and centers, negotiate annual research budgets. And each year Congress hears from a parade of passionate spokespeople and celebrities who make a case that their cause is the most pressing.
Diabetes activists sometimes have a tough road in Congress. Some lawmakers believe money is better spent on even more serious diseases that are not as easily controlled, such as cancer.
But the children who swarmed the Capitol were hard to ignore.
"When you look into the faces of these children and they've got something that you could cure, it's pretty hard to tell them no," said Ruedy Edgington, 44, of Reno. "And some of these kids are pretty sick."
Edgington's seven-year-old son Matt, who was in part of the Children's Congress, called his meeting with Rep. Jim Gibbons, R-Nev., "cool." But a bigger highlight of the trip was hanging out with a boy from Great Britain who also has the disease. The two swapped stories about living with diabetes as they played with their Gameboys.
"He was able to see that he wasn't the only one putting up with the disease," Ruedy Edgington said.
Not satisfied to wait on Congress, the Edgingtons have taken on several fund-raisers of their own, raising about $40,000 in 10K walks and 105-mile bike rides in the last few years.
"They speak for the disease itself," Joyce Holmes, special events coordinator for the Nevada chapter of the research foundation, said of the children.
"Each one of them in their own way represents why we are working so hard to raise these dollars to find a cure. We often say that we're in business to go out of business."
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