Calling on Congress
People who care about diabetes get a chance to make their case on Capitol Hill.
Cheryl Marsden had been in and out of the doctor's office five times in five weeks. She couldn't understand why she was so thirsty. And did she have a bladder infection? No one could figure out what was wrong. Finally they checked her blood glucose. It was 497: five times a normal reading.
Just two months after Marsden was diagnosed with type 2 diabetes—as she attempted to maintain blood glucose control, waited for her insurance to cover her purchase of a monitor, and struggled with taking care of her health—she was fired from her job at a CPA company in Oakland, Calif. Her employer complained of her performance and absences; she argues that the company was not accommodating her disability.
Marsden and more than 200 other advocates from across the country came to Washington, D.C., from April 30 to May 2 to share their stories at the American Diabetes Association's 2008 Call to Congress. They were joined by volunteers taking part in the event back home by calling and writing to their Members of Congress that week.
Of course, people like Cheryl Marsden are supposed to be protected from on-the-job discrimination under the Americans with Disabilities Act. But Supreme Court decisions over the years have narrowed the scope of the law and who it protects. That's why ADA and advocates like Marsden urged Congress to pass legislation keeping the focus in these cases on whether the person can do the job in question and whether he or she was treated unfairly.
Advocates met with nearly 300 congressional offices, urging lawmakers to support inreased funding for diabetes research and prevention programs through the National Institutes of Health and the Centers for Disease Control and Prevention, and pushing for support of a multiyear continuation of the federal Special Diabetes Programs for type 1 research and Native American programs. These two programs represent a significant contribution from the federal government to combat, prevent, and cure diabetes.
Research funding is especially important to Ethan Parker, 14, who was diagnosed with type 1 diabetes 5 years ago. He and his father, Kevin, were at the Call to Congress. They are learning firsthand how disruptive diabetes can be—and expressed hope for better treatments and a cure.
"His A1C has not been as great as we'd like," Kevin Parker explains. "And doctors say it will get harder as he gets into puberty, and it gets even tougher to control." Ethan spoke about how tough it is for him to keep his blood glucose under control, despite his healthy habits and close monitoring of his glucose levels. Sometimes, he says, "I've had to miss school because of my numbers being out of whack, and I've missed playing time in hockey when I have a low blood sugar and have to wait for it to come up."
Through telling his story—how diabetes has affected his athletic endeavors, how it affects his school environment, and how it affects his entire family—Ethan helped leaders on the Hill learn more about what it takes to deal with diabetes in everyday life. "Even though you know someone with diabetes, you may not know what they go through on a regular basis," says his dad. "I don't think people realize how serious an illness it is, or how bad the complications can be."
U.S. Representative Jim Sensenbrenner Jr. (R-WI), a strong supporter of legislation that would restore the initial intent of the Americans with Disabilities Act, notes that "with over a million people affected and thousands of deaths each year, diabetes has become an epidemic in Wisconsin." Congressman John Tierney (D-MA), meanwhile, says he was glad to learn more about the day-to-day struggle of living with diabetes, from Mark and Kimberly Foisy's family. "My staff and I appreciated hearing about how they live their lives." After all, it's the people who live with diabetes every day who are the real experts.
Couldn't be in Washington? You can still make your voice heard. Go to ADA's online Action Center and send a letter to your Members of Congress telling them how diabetes affects you and your family. For more information, visit www.diabetes.org/TakeAction.
Call for Entries: Gift of Hope
To date, the American Diabetes Association's Gift of Hope program—which sells greeting cards and gifts to benefit diabetes—has raised $22.2 million. All proceeds go directly to diabetes research. Now the ADA is seeking submissions for original greeting card designs for this year's "Holiday Art Search" contest. Winning artists receive $500 and are credited on their cards and in the Gift of Hope catalog. Visit www.diabetes.org/giftofhope and select "Holiday Art Search" for the official contest rules and entry form. Entries must be postmarked by Nov. 1, 2008.