When Gina Capone, a thirty-something type 1 for eight years, got married this year, she and her husband decided it was time to start thinking about having a baby. Like all women with diabetes who are planning a pregnancy, Gina needs her A1c to be as low as possible in order to prevent complications for her and her baby. This strict control can be very challenging and time-consuming, requiring up to 20 blood sugar tests a day.
There is an alternative, however. During the past three years, several continuous glucose monitors (CGMs) have come onto the market that provide a constant read-out of a person’s glucose level. CGMs have helped many to stave off dangerous low blood sugars and prevent the high blood sugars that can lead to a myriad of complications. A CGM has the potential to help Gina keep her A1c at an acceptable level for conceiving and carrying a child, which is typically in the five percent range. Gina is ready and willing to do the work. There’s only one problem: Gina’s insurance company won’t cover the continuous glucose monitor or its sensors.
Gina has decided to fight back.
“I want to start a family. I want to get as healthy before conception as possible, and a CGM combined with finger sticks will get me there,” Gina says. “Then I found out how many people were getting denied-including me. I do not think that medical directors for insurance [companies] should make the decision on whether or not people with diabetes should have a potentially life-saving device.”
On July 14, Gina launched the CGM Anti-Denial Campaign to collect signatures from people who face denial from insurance companies when they apply for CGM coverage. Her goal is to reach at least 2,000 signatures by November 14, which is World Diabetes Day. She may exceed that goal significantly, as she gathered 1,000 signatures in the first 25 days of the campaign. On November 14, Gina plans to send the petition to the medical directors of the top insurance companies that are denying CGM coverage applications, such as Cigna, Aetna, Oxford Health, and Blue Cross Blue Shield in many states.
“I think people need this petition because they are desperate to get this device,” Gina explains. “The petition is giving people hope that maybe this can work if we all stick together and fight for it. It can become a reality.”
The stories of the petition signers are very similar. They include patients have been denied many times despite providing exhaustive documentation and doctor’s letters explaining their hypoglycemia unawareness, their child’s inability to wake up with a low blood sugar, or their preparations for pregnancy. Most insurance companies insist that CGMs are experimental technology, which they don’t cover, despite the fact that CGMs have been approved by the FDA and have received all the proper billing codes for reimbursement.
Gina, who is the founder of DiabetesTalkfest.com, has also started a CGM Anti-Denial social network, where visitors can download helpful case studies to include in appeal documents. Those who join as members can share their experiences with different insurance companies in their home states. Members can also identify the lobbyists in each state who have the power to make it mandatory for insurance companies to cover CGMs, as well as the insurance company medical directors who are responsible for approving coverage. Those who have been covered by insurance companies are also urged to join the network and share their stories, including the name and home state of their insurance company.
The Juvenile Diabetes Research Foundation is assisting Gina with locating the contact information for the insurance companies so the CGM petition can be delivered on or around November 14. The JDRF has been an ardent support of the CGM since its inception and has lobbied extensively for its approval by the FDA.