A Good Year In 2008
New Laws Help People With Diabetes
It is one of the most important pieces of diabetes legislation of the past decade: the Americans with Disabilities Act Amendments Act. This new law, signed by President Bush on Sept. 25 to go into effect on the first of January, restores the Americans with Disabilities Act of 1990 to its original intent to protect people with diabetes and other chronic medical conditions from discrimination. The law overturns numerous court decisions that had severely narrowed who the law covered.
"In interpreting the Americans with Disabilities Act, the courts have consistently chipped away at its clear intent, excluding millions of Americans from the law's protections," says House Majority Leader Steny Hoyer (D-MD). "In multiple decisions, judges found that for people who are able to mitigate the effects of their condition—such as people with diabetes who can manage their diabetes with insulin, oral medication, and diet and exercise—are not disabled enough to be protected by the original Americans with Disabilities Act."
This victory follows a long-fought battle, led in part by the American Diabetes Association, for the rights of people with disabilities, including chronic illnesses like diabetes. It's the most significant piece of antidiscrimination legislation for people with diabetes since the original Americans with Disabilities Act was passed in 1990. But this important law was only the capstone to a year that saw several major legislative victories for people with diabetes.
One victory came with the extension of two National Insititutes of Health programs funding diabetes research, prevention, and education. In July, Congress voted to extend funding for the Special Diabetes Programs for Indians and the Special Statutory Funding Program for Type 1 Diabetes Research until September 2011.
"Native Americans in this country are more affected by diabetes than are any other ethnic group," says U.S. Senator Byron Dorgan (D-ND), who worked to extend the legislation. "The Special Diabetes Program for Indians has been effective in addressing their specific needs through research, prevention, and treatment programs. … I believe that we will be able to build on the program's success to drastically lower the rate of diabetes in the Indian community."
James Schlicht, executive vice president of government affairs and advocacy at ADA, calls the extension one of the largest legislative victories of the year for people with diabetes. "The extension … means an additional $600 million in federal funding for diabetes research, prevention, and treatment programs," he explains.
Another new piece of federal legislation that will help protect people with diabetes is Michelle's Law, named for Michelle Morse, who died of colon cancer at age 22, just months after graduating from college. While undergoing chemotherapy treatments, Morse maintained a full course load at school—despite doctors' orders—simply so that she would remain covered by her family's health insurance. Signed in October, Michelle's Law aims to protect students who are seriously ill or injured—including those experiencing complications from diabetes—by allowing them to take up to a year off from school while still being covered under their families' health insurance plans.
Still more strides were taken at the federal level. The Farm, Nutrition, and Bioenergy Act of 2007 that was passed into law in May extends agricultural programs and includes related initiatives like the Fresh Fruit
and Vegetable School Snack Program, which invests $350 million for healthier schools—an important step on the road to diabetes prevention.
Other recent legislation makes it easier for Medicare beneficiaries to take advantage of their initial "Welcome to Medicare" doctor visit. The legislation waives the deductible for that visit and extends the time frame in which patients can schedule it from 6 months to a full year. Finally, the Genetic Information Nondiscrimination Act, signed into law in May, prohibits both employers and insurers from discriminating against people with genetic markers for diseases like diabetes and cancer.
ADA also led the fight at the state level this year, pushing for healthier and safer schools, more treatment and prevention programs, more research, and better health care.
In Rhode Island, it was a matter of keeping kids safe at school (see "Relief in Rhode Island," p. 76). In Massachusetts, the focus was on research. There, the Life Sciences Initiative beca
me law in June, effectively investing $1 billion in the life sciences sector supporting stem cell and other new research technologies that have positive implications for diabetes research. The law allocates funds to research facilities at the University of Massachusetts Medical Center and University of Massachusetts—Amherst, and will grant funds to other small companies and research institutions as well.
In Utah, the Board of Nursing enacted a rule in June enabling school nurses in the state to delegate insulin and glucagon administration to trained non-medical school staff. Schools in Iowa will also benefit from new legislation: the Healthy Kids Act, which sets nutrition standards for the food sold to students in schools and requires 30 minutes of physical activity per school day for students. In New Mexico, new legislation allocates an estimated additional $500,000 to the New Mexico Diabetes Prevention and Control Program. Meanwhile ADA continues to work on the state level to preserve diabetes coverage by fighting rollbacks that limit the scope of insurance coverage for people with diabetes. All in all, legal accomplishments this year may mean health care reform and more tools for people fighting diabetes next year and in years to come.
"People with diabetes still struggle with attaining adequate and affordable health insurance that covers their diabetes medications, supplies, and treatment," says Schlicht. "With the issue of improving health care moving to center stage in 2009, ADA will continue to work with Congress and with other health organizations to fight for health reform that will address these problems."
Relief in Rhode Island
Chris Librizzi knows what a severe low blood glucose looks like. He's seen it on calls he's made as a firefighter and emergency medical technician, and he's seen it at home, in his 10-year-old son Zachary. He also knows the importance of administering an emergency drug in these situations. That's why he's testified several times before Rhode Island state legislators about the significance of glucagon—a fast-acting injectable hormone that stimulates the liver to produce glucose—helping to pass a bill that will enable kids in Rhode Island's schools to have better access to the drug.
Glucagon is the emergency treatment recommended when someone with diabetes experiences a severe low. Zachary has been brought out of lows with glucagon three times by his parents at home. But school is a different story. Sometimes, no one in a particular school is comfortable enough to or authorized to administer glucagon, and a school nurse may not be readily available. It's a harrowing thought— and it's why the Rhode Island "Glucagon Bill," passed in August, was designed to encourage trained personnel like teachers and other school staff to administer glucagon to kids in diabetes emergencies.
"In some school districts you had to wait for emergency services to arrive before administering glucagon; a lot of schools don't have a nurse on the premises," Librizzi says.
He added that there are many areas in Rhode Island that have few fire departments, resulting in a slower response time: "That could be up to 10 minutes in some communities."
And 10 minutes, Librizzi says, can make all the difference. "A child would absolutely suffer brain damage if they were in a hypoglycemic seizure," he explains. "Every second counts."
Funding that Matters to You
The federal government spends millions of dollars on research into diabetes each year. Two government agencies—the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) and Prevention—make it all happen. The NIH's National Institute of Diabetes and Digestive and Kidney Diseases and the CDC's Department of Diabetes Translation are the two largest agencies funding and communicating diabetes research in the United States today. They also back treatment, education, and prevention programs.
Every fiscal year, Congress passes a series of appropriations bills that determine the amount of money federal agencies receive as part of the annual budget. Since Congress was unable to reach an agreement before recess, agencies like the NIH and CDC will continue to be funded at the current levels until March 2009. When Congress reconvenes, it will work on passing a bill that sets funding levels for 2009.
This year, the American Diabetes Association is calling for an additional $20.8 million for the Division of Diabetes Translation at the CDC—a 33 percent increase—in order to enable the expansion of prevention and control programs in states receiving little assistance now. ADA is also urging Congress to allocate an additional $112.6 million—a 6.6 percent increase—for diabetes treatment and research at the NIH.
To learn more about ADA's legal advocacy efforts: diabetes.org/advocacy