Local Girl Fights for Health Care; Meets Obama

About three years ago, just before Camryn Adams turned six, she was suddenly plagued with fatigue, weight loss and excessive thirst and urination.

A visit to the doctor revealed that her blood sugar level was over 500, when it should have been between 80 and 110. She was diagnosed with “type one” diabetes the same day.

"At first I really didn't know what the word (diabetes) meant," Camryn said. "The only part I recognized was 'die,' so I thought I was going to die, but that didn't happen."

Camryn, who is now nine and will enter the fourth grade at Pelham Elementary School (near Amherst) in the fall, said she has learned all about diabetes, including the origin of type one diabetes, also known as juvenile diabetes.

"The part of the pancreas that produces insulin is eaten away, and no one knows why that happens," she explained.

Diabetes can cause heart disease, stroke, kidney failure, lower-limb amputations, and blindness. About one in nine African American adults have diabetes. African Americans are nearly twice as likely to have diabetes as white Americans.

There are two types of diabetes. “Type two” is more common. Camryn has type one.

The following information is from this federal government web page:

www.cdc.gov/diabetes/pubs/pdf/powertoprevent2007.pdf

“In many cases it is possible to prevent or delay type two diabetes in people at high risk… [P]eople can prevent or delay type two diabetes by … eating a healthy diet and increasing their physical activity.”

Two groups in the Valley that help low-income people get access to healthy food, and to safe places to walk and ride a bicycle, are Food Bank Farm www.foodbankwma.org and the Valley chapter of Mass Bike www.massbike.org

Camryn needs a pump to supply her body with a hormone all day, everyday, or she - and all others suffering from type one diabetes - would die. Without insulin, the body cannot obtain enough glucose, forcing it to burn fats for energy, which eventually is fatal.

Camryn must check her blood sugar level eight to 10 times a day by pricking her finger and testing the blood with her pump. When her blood sugar is too low, she must consume something the body can easily turn into glucose, like fruit juice. When her blood sugar is too high, she must calculate the amount of insulin the pump should supply to lower it to a healthy level.

Camryn must check her blood sugar several times while at school, which attracts the curiosity of her classmates, most of whom don't fully understand what she is going through.

"One girl thinks I got diabetes from eating a lot of sugar, and she sees that I am in the paper and getting interviewed a lot, so I started seeing her coming to school with huge doughnuts," she said, exasperated. "But that's not how it works."

Camryn is not daunted by the disease. She enjoys horseback riding, biking and swimming, and was recently a delegate to the Juvenile Diabetes Research Foundation's Children's Congress, during which she met President Barack Obama. Camryn's mother, Barbara, accompanied her to Washington, and together they attended a congressional hearing on diabetes research and lobbied Sens. John Kerry and Edward Kennedy to push for health care reform and to renew the federal Special Diabetes Program, which allocated $1.59 billion for type one diabetes research between 1998 and 2011.

Health care reform is a very personal issue for Camryn and her family, as their health insurance will not provide her a continuous glucose monitor, a device placed under the skin which automatically checks the blood-sugar level every five minutes and radios it to the pump. With the monitor, Camryn would not have to prick her finger or worry about constantly having enough testing strips, but the insurance company considers it a "luxury item" and thus will not cover it.

One group working for the U.S. to adopt the kind of “single-payer” universal health care system used in Europe and Canada is the Valley chapter of Jobs With Justice (see www.jwj.org/campaigns/health.html and www.wmjwj.org )

Barbara disagrees with the insurance company's categorization of the monitor. "As if anything having to do with diabetes is a luxury item," she said.

Although frustrated by being denied currently available technology, both mother and daughter are grateful for the insulin pump, without which Camryn would have to receive shots of insulin from a needle at least five times a day.

Needle injected insulin is the only option if one's health insurance does not cover an insulin pump, which, to Barbara, is evidence of diabetes's severity.

"Giving kids who can't stand a flu shot once a year five to seven shots a day - that's an intense disease," she said.

Camryn and Barbara realize that diabetes research costs hundreds of millions of dollars, inducing them to raise money through events sponsored by the Juvenile Diabetes Research Foundation. Since 2006, they have raised more than $35,000 for the Western Massachusetts Walk to Cure Diabetes, which takes place every year at Six Flags New England in Agawam. Anyone who donates more than $50 to Camryn's team will receive free admission to the park on the day of the walk, Oct. 18.

They know the money will be put toward important research, including financing development of an artificial pancreas, which will automatically provide a constant amount of insulin; it is still being tested. Barbara said she raises money for research in the hope Camryn will be wearing one when she leaves for college.

The ultimate goal is to find a cure though, which they are hoping for in the next several decades. "We're so close," Barbara said.

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A shorter version of this article first appeared in the Amherst Bulletin newspaper. This article is published here with the author’s permission.

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