Amanda Cheney and her son, Jonathan, both suffer from type 1 diabetes. The high cost of monitoring glucose levels and buying insulin have turned her into an activist.

MILFORD – Four years ago Amanda Cheney’s husband, Wayne, found her unresponsive in the morning and had to call an ambulance. That happened twice, and it frightened them both.

Amanda has type 1 diabetes, sometimes called juvenile diabetes. It’s a life-threatening autoimmune disease in which insulin-producing cells in the pancreas are mistakenly destroyed by the body’s immune system.

The disease afflicts about more than 2 million people in the United States who are dependent upon insulin to survive. Its causes are not fully known, and there is currently no cure. If their glucose levels are not kept within a healthy range, people with the disease risk potentially deadly episodes of high or low blood sugar and devastating health complications later in life, including blindness, kidney failure, heart disease and nerve damage that can lead to amputations.

And it’s an expensive disease.

To monitor her glucose levels, Amanda uses a continuous glucose monitor that attaches to her stomach, as well as a hand-held monitoring device that has to be with her at all times and beeps when her blood sugar is too high or too low. The cost for a three-month supply of the most basic continuous glucose monitor is $2,793. Amanda also has a insulin pump that’s attached to her body and delivers insulin throughout the day. The insulin pump only lasts for three days, and a three-month supply costs $780. The cost of insulin for the pump is $1,306. There is also the cost of doctors’ visits and medical tests.

Without the continuous glucose monitor, Amanda, who lives in Milford, would not be alive.

“For me, this is essential because I am not aware of low blood sugar,” she said.

Wayne has good insurance, she said, but someday they’ll be retired and on Medicare, the federal health care insurance for seniors, which does not cover the newest versions of the continuous glucose monitors.

Up until two years ago, Medicare did not cover anything for type 1 diabetes, and it now cover many of the costs, but not the newest versions of the continuous glucose monitors.

“This why I worry for myself and others that upon retirement, the supplies needed to stay alive will not be affordable,” said Amanda, who is 59 and works as a paralegal.

And that is why she has been working with the American Diabetes Association, and why she will travel to Washington D.C. later this month. On March 28, she will be among 200 people ­­- diabetics, health professionals and diabetes educators – who will meet with the staff of Sen. Jeanne Shaheen (D-N.H.) and possibly other members of Congress.

Amanda’s son, Jonathan Cheney, a school counselor in Southwick, N.H., also has the disease. “I am so proud of her advocating for us and others,” he said in an email.

Kathy Cleveland can be reached at 673-3100 or kcleveland@cabinet.com.