Challenges for people with diabetes - a patient story
~ by Sharon Gerdik, a member of the Right Care Alliance Patient Council
I am a Type I Diabetic (T1D) for over 35 years. I have always been fortunate to have good benefits and the ability to obtain the medications, devices and supplies needed to manage my condition. I shop often at a local supermarket, and became familiar with many of the workers. I met a young man there, and we connected as T1Ds.
He told me that he was diagnosed at the age of 12. His parents thought at the time that he had the flu, and kept giving him sports drinks, hoping to replenish his electrolytes and quench his thirst. He became severely ill and was brought to a local ER. He had labs drawn and his blood glucose was over 1000 [editor’s note: normal blood glucose level is under 100]. His diagnosis was Type I diabetes.
As a young kid, he was managed by a physician, since he was covered under his parent’s benefit plan. However, as an adult, he had no insurance. When I first met him he explained that he was married and had a teenage son, and not only had no medical insurance but also had limited funds. He hadn’t been seen by a doctor in over 14 years. He told me he used a store brand of insulin. This isn’t a current newer type of analog or rapid acting insulin, but a type that has been around for more than 50 years. It was all he could afford. He even shared that he reused his syringes multiple times.
It broke my heart.
He didn’t even check his blood sugars. The strips were too expensive. I had several extra boxes of test strips, and I helped him get a glucose meter that used those strips. I also had several boxes of syringes that I no longer needed since I use an insulin pump. I made some suggestions to him, and hoped that he would try to connect with a healthcare provider who could help him monitor his diabetes. I see him every now and then and he seems to be doing OK, but still not seeing a doctor and still using the same outdated care path.
I also met up with a neighbor who spends just the winters here in the Phoenix area of Arizona. He had mentioned that he was having difficulty affording his insulin pens. He was retired and paying over $1400 a month for his insulin. I explained to him how my insulin was covered by Medicare since I was on an insulin pump. I helped him meet the requirements for Medicare to allow him a pump. It took several months but it happened. While on a pump, Medicare covers the insulin as Part B. This man is now happily using his pump and getting better control of his diabetes, plus saving some money.
These are just two people I had met in my local area who shared their horror stories for their T1D management. It is heartbreaking how the prices of insulin have skyrocketed over the past decade or so. Not just insulin, but many medications that are needed to sustain life with a chronic disease, are now priced at extremely high levels.
On Sunday, May 12th, 60 Minutes did a segment reporting on a lawsuit against dozens of generic drug manufacturers. According to the suit, the price of hundreds of generic prescription drugs jumped in a single year, and plaintiffs are alleging there is collusion among the drug makers. The drug makers denied collusion but did justify the higher prices. The cost of some medications increased over 1000%. The US seems to be the only country where this is happening. Something needs to be done, and change is needed now.
As a Diabetic Advocate, this is something I am passionate about. Please stay well, and educate yourself in order to be your own health advocate.