While the high price of insulin has gotten a lot of attention lately, it's not the only cost issue facing people with diabetes. New technologies designed to improve blood sugar management often cost too much for people to afford.
Maya Headley, 36, has had type 1 diabetes for 30 years. The New York City resident had been using an insulin pump to deliver the repeated daily insulin doses she needs to stay alive for more than 20 years. About six years ago, she just couldn't afford to pay for the pump supplies anymore.
"I was paying $300 a month for insurance and my deductible was $1,500. I had to pay 20% of the cost of my diabetes supplies after I paid the deductible, so that was another couple of hundred dollars a month," she said.
Headley added that what made affording diabetes supplies even more difficult was the uncertainty about the cost. "Insurance companies tell you they cover these devices, but not how much it will be. Until you get the bill, you don't know. It's hard to budget when you have no idea what your expenses will be."
And, she said, once you think you have everything figured out, your company changes insurance plans or you get a new job and new insurance. That means you start from square one, and you have no idea what will be covered or how much you'll have to pay all over again.
What type of diabetes tech is available?
There are a number of devices that can help people with diabetes—either type 1 or type 2—manage their disease, according to the American Diabetes Association, such as:
- Insulin pumps. These devices typically have a piece of hardware that holds a supply of insulin and a motor to push insulin through a tube. The thin tubing is inserted underneath the skin to deliver insulin throughout the day. The tubing and insulin supply must be changed every few days. There is a different type of pump called a patch pump that holds several days' worth of insulin on the body. A separate device wirelessly transmits delivery instructions to the patch pump. No insulin pump alone can control diabetes. People with diabetes still need to tell the pump how much insulin they need.
- Continuous glucose monitors (CGM). This device includes a sensor placed under your skin for a week or two. The sensor transmits readings to a small device that can alarm you if your blood sugar is too high or low.
- Closed loop insulin pumps (also known as artificial pancreas). A closed loop system combines an insulin pump and CGM with a computer algorithm. Though not yet fully automated, this device controls a lot of insulin delivery throughout the day and night. It can reduce insulin delivery when blood sugar is dropping, or increase it if blood sugar levels are going too high.
- Blood sugar meters. These devices determine blood sugar levels with a drop of blood and a test strip.
Why these devices are important to people with diabetes
Cynthia Rice, chief mission strategy officer for JDRF (formerly the Juvenile Diabetes Research Foundation), said, "Type 1 diabetes is a disease that people need to manage 24/7, 365 days of the year. Technology is an incredibly important part of helping people live with type 1 diabetes. Technology allows people to lead a full life while managing the disease and stay healthy until there's a cure."
After another insurance change, Headley is back on a pump and a new type of CGM. She said they make an enormous difference in her quality of life. Headley has hypoglycemia unawareness. That means she doesn't feel it when her blood sugar drops dangerously low (hypoglycemia). So a CGM that lets her know when her blood sugar is dropping too fast can be lifesaving.
"I have a lot fewer moments with hypoglycemia and far fewer ER visits," she said. Her diabetes tech allows her to exercise when and how she wants—long bike rides and walks—and to work unpredictable hours while still effectively managing her diabetes and preventing serious lows.
A concerning trend, according to JDRF, is limits being placed on the choice of device, similar to the way insurance companies restrict drug choice. At least one insurer—United Healthcare—has decided to limit coverage to a single insulin pump manufacturer.
"The choice of which pump or CGM to use should be between the person with diabetes and their doctor," Rice said.
Insulin pumps are sophisticated medical devices that offer different benefits and drawbacks. What works for one person might not work for another. And if a pump doesn't fit in with someone's lifestyle, they're likely to stop using it, according to JDRF.
That was Headley's experience. She tried a pump with tubing and it just didn't fit with her lifestyle. She now wears a patch pump and loves it.
Rice said, "People with diabetes are constantly running up against challenges to get the coverage they need. They have to spend hours on the phone, seek out prior authorizations from doctors, only to get denied again. People with high deductible health plans have to pay 100% of the list price at the beginning of the year, and that can make it very difficult to afford the devices they need to survive. People who are uninsured have the biggest challenges in paying."
And these barriers may end up costing the health system more in the long run. "When people don't have the tools they need to stay healthy with diabetes, they will end up with more health challenges, may need hospitalizations and may have complications," Rice explained.
Cathryn Donaldson, director of communications for the America's Health Insurance Plans—an insurance industry trade group—said, "Insurance providers cover a variety of services and treatments and medical equipment to help people manage their diabetes. We want to ensure patients get access to the care they need while avoiding unnecessary hospitalizations and long-term complications—because when patients do better, we all do better and health care is more affordable for everyone."
Donaldson said specific coverage depends on the insurance provider, the specific insurance plan and the individual's needs. But health insurance providers typically cover what's commonly needed to treat diabetes, such as blood glucose monitors, test strips and needles and syringes for insulin.
Asked about limits in choice for diabetes' devices, Donaldson said, "To improve affordability for consumers, insurance providers negotiate arrangements with manufacturers for certain devices in exchange for volume."
She said that exceptions can sometimes be made. "Prior authorization—an important tool that helps ensure patients receive care that is safe, effective and necessary—may be used in those cases," Donaldson said.
More information: For more on getting coverage for diabetes supplies, go to the JDRF.
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