Liddy Huntsman: Type 1 diabetics face enough obstacles — don’t limit our treatment choices

FILE - In this June 21, 2011, file photo former Utah Gov. Jon Huntsman, walks with his wife, Mary Kaye, respectively second and third from right, and their seven children at Liberty State Park in Jersey City, N.J., before announcing his bid for the 2012 Republican presidential nomination. Huntsman was expected to be a force in the 2012 race long before he officially joined it. Handsome and well-spoken, the 51-year-old California native offered a unique set of qualifications as a former GOP governor with experience working under presidents of both parties. From left are children Liddy Huntsman, Willliam Huntsman, Mary Anne Huntsman, Abby Huntsman Livingston, Jon Huntsman III, and Gracie Mei Huntsman, right. Youngest adopted daughter, Asha Bharati Huntsman, is partially visible behind her mother. (AP Photo/Mel Evans, File)

At just 7 years old, I was faced with my first and greatest life challenge. I was diagnosed with Type-1 Diabetes (T1D).

Anyone who knows the challenges of living with T1D, the most accurate explanation of day to day life is basically riding a 24/7 rollercoaster that you can’t get off. There’s no cure for T1D and it’s an extremely difficult disease to manage. However, living with T1D you quickly learn the meaning of responsibility and that managing the disease is your only choice if you want to survive.

I consider myself pretty old school, especially with treatments. No way was I going to trust a machine to keep me alive. When I finally had the courage to explore more options for insulin therapy, I found that the insulin pump, which has been around for years, is really a major asset for a T1D to have a better quality of life. My life has significantly improved. My mental exhaustion of dealing with a chronic illness has improved. My life as a mom, wife and friend has improved. And I owe it all to a tubeless insulin pump called Omnipod. The Omnipod is the first insulin pump I have ever and will only use because it’s changed the most important relationship in my life, and that’s with my Type 1 Diabetes.

Even though I’m fortunate enough to have found a treatment that works for me, many others continue to struggle as the wider public often overlooks T1D as something we can “cure” with diet and exercise. This is false. It’s why for the majority of my life I’ve been vocal about educating and bringing a greater awareness to the disease, and helping the thousands of others struggling to know they are not alone.

There is, however, a critical issue that’s currently being ignored but warrants immediate action – an issue that impacts thousands of people living with T1D here in Utah and around the country. Currently, the Centers for Medicare and Medicaid Services (CMS) do not provide coverage under Medicare for the Omnipod even though the pump has been FDA-cleared for over a decade and nearly all private insurance plans cover it. As a result of CMS’s non-coverage policy, it’s forcing thousands of T1D patients who age into Medicare and use this amazing pump to lose their coverage unless they can pay out-of-pocket for the treatment. Importantly, CMS’s non-coverage policy also means that children, the disabled and low-income T1Ds who receive their health care through Medicaid are also denied coverage to this highly effective treatment therapy. This isn’t fair.

Fortunately, Congress gave CMS the explicit authority to cover new insulin delivery systems like the Omnipod when it established the Medicare Part D program in 2003. Our state’s very own senator, Orrin Hatch, was even one of the leaders responsible for this as he sought to provide the best and most innovative treatments for T1D patients.

Sadly, CMS has so far refused to cover Omnipod for Medicare beneficiaries after years of consideration – and with no real explanation. In fact, CMS is still deliberating on the matter, but it’s unclear when, or if, it will make a decision. All this inaction does is hurt T1D patients by leaving them with fewer choices to manage their illness – choices made between themselves and their doctors.

I strongly believe that the federal government shouldn’t get to make treatment decisions for T1D patients. Why do the ones living and struggling with this disease every day not have a say in their outcome of care? This isn’t what we preach as Americans. To put it plainly: CMS is kicking the can down the road, hoping that this problem will just go away. That goes directly against the values I learned growing up in Utah, so I have to make my voice loud and clear until there’s change.

There’s a lot to be done with T1D, whether it’s educating the public, promoting greater research and development in treatment therapies, or – hopefully one day – finding a cure. One thing is clear, though, and that is our government must not limit the choices a patient should have and it must let patients have full access to all available treatment therapies. Until there’s a cure, the T1D community will rely heavily on the newest available treatments so we can live the life we all deserve.

Liddy Huntsman is a wife, mother, and Type 1 Diabetes activist. A Utah native, she currently lives in New York City with her husband and son.