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Guest Post: The Cost of Staying Alive.

Charity Shuster-Gormley is a native Vermonter who currently works as a mental health worker in a psychiatric hospital. She was first diagnosed with type 1 diabetes in the summer of 2000 at 15 years old. Charity holds a Bachelors degree in Psychology and a Masters degree in Marriage and Family Therapy. She lives with her husband, their 6-year-old Dachshund Amos, and 10-year-old cat named Bella, and today she’s taking over SUM to share her thoughts on what it costs to stay alive.

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Since the age of 4 I have lived with chronic health conditions. It started with an ear infection at the age of four, which developed into a chronic heart condition called a complete heart block resulting in the need for a pacemaker at the age of 25. At the age of 15, I had corrective surgery for my spine, which had developed serious scoliosis. Five weeks after this surgery, I was in the hospital again being diagnosed with type 1 diabetes.

It was not until about the age of 24 that I started to experience the cost of staying alive, first-hand. Up until then I had been able to stay on my mother’s cushy state health care coverage provided to her as an employee of the state of Vermont and to me up until the age of 24. I knew that my insulin was priced at between 50-100 dollars a vial when I was first diagnosed but until I had to figure out insurance on my own, I had this sense of safety and worry-free mindset and did not think about costs, or how I was going to get supplies.

My first experience a type 1 diabetic with my own insurance was being on Medicaid due to being in college still and the state deeming the insurance my college provided inadequate. There was this great program that was attached to it that I was able to sign up for that provided full coverage for all appointments and supplies that were diabetic related. Then there was the day I received a bill for my testing supplies. I called the insurance inquiring as to why I was being billed for this when it was supposed to be covered at 100%. I was assured by the agent I spoke with that this was indeed an error, and it would be taken care of. I breathed a sigh of relief as the panic of being a full time college student with virtually no income subsided.

Several days later I received a phone call from another agent. They proceeded to inform me that they had spoken with the pharmacy director and that ACTUALLY only insulin and insulin delivery devices were covered under the program I was part of. When I reiterated that this was not was the guidelines of the program stated and asked the reasoning that my testing supplies would not be covered the reply I received was this:  “Testing is not life necessary, ma’am. Only insulin and what is needed to deliver the insulin is.” I was in a state of shock at hearing this. I hung the phone up in stunned silence, still not believing what I had just heard. This was when I first felt the feeling of having to fight for my life.

Today my insulin if I was uninsured is going for $300 a vial. I am working in a psychiatric hospital as a mental health worker and not as a therapist in a mental health agency not only because of my background, but because the insurance I receive here provides me the coverage I need to be able to live. Turning down jobs due to the insurance being so poor or so expensive or both has been a very real reality of mine.

Hearing the CEO of Eli Lilly state that insulin prices are rising due to diabetes being such an expensive disease likely left me looking the closest to Medusa or Broom Hilda that I ever will. My husband turning to me and stating his perception that I am essentially renting my life for approximately $30 a day makes more steam come out of my ears at this thought then Old Faithful produces. Thinking about presidential elections and explaining to others the fact that my life is not just in my hands but in a whole countries who’s biggest concern might not be staying alive … I wake up each day, never giving up hope and faith that the majority of our country desires each and every human to live healthy lives, not having to feel anxious, feel out of control of their health, wonder if they will have what they need to successfully manage their health or have what they need to stay ALIVE. Unification and our voices are a key to the movement towards change I believe.

Our lives are NOT for profit. When you meet a person living with chronic illness ask yourself, “Do I really understand?”

12 Comments Post a comment
  1. svenmint #

    My t1d son is 9. I am constantly conflicted between giving him the rah-rah message of “You can do anything you want in life!” and the more truthful message of “You can do anything you want in life…so long as it involves working for a company with really great health insurance!” It sucks.

    03/21/16; 12:04 pm
    • Sandy T #

      I only take jobs that have good insurance. It’s part of being a diabetic I believe. While i live in america, I won’t be able to get a job that doesn’t have good insurance. And I ALWAYS ask about the insurance benefits when I am offered a job. The HR people hate me, but it’s a HUE part of my pay, so I need to know the nitty gritty of the benefits. I do hope national healthcare will get better and I’ll be able to get good insurance without a job, but I am not counting on that in America.

      03/21/16; 7:14 pm
  2. I wonder if your doctor would have been able to override what the insurance agent was telling you about testing supplies not being covered. I know you were in college at the time, but that loophole seems worth fighting hard against.

    03/21/16; 1:29 pm
    • Charity Shuster-Gormley #

      Yes!! Thank you for bringing this up! I did indeed fight it and in the end it ended up that I did receive them at no cost like I had understood in the guidelines. The shock factor was more about how they claimed testing my sugar was not necessary to living. I could not believe they were actually suggesting I could just give myself insulin and “hope for the best”.

      03/21/16; 5:07 pm
    • Nolan Kienitz #

      Not possible with Medicaid or Medicare. The government won’t budge. Just ask me … I’m on Medicare and have to pay cash/out of pocket for my CGM and supplies. Medicare does not consider it ‘necessary”.

      03/21/16; 8:00 pm
  3. I can completely understand your perspective. I’ve had type 1 since age 12, now 40 years, and have been self-employed as an adult. I’ve always had to pay for my own insurance, and there have been times when it was either unaffordable ($900+/month) or completely unavailable, due to my “pre-existing condition.” Now I at least have insurance available, and am so grateful!

    It would be disastrous for me and millions of others if we lost the right to have health insurance. Let’s get out and vote – my strong preference for one of the democratic candidates who actually believe we all need the right to have health insurance!

    03/21/16; 7:41 pm
    • andy #

      I don’t see health insurance as a rite. No one is entitled. Sorry just saying. I was diagnosed with out insurance and had to work another job to pay for expenses. That’s just life. Since this new national health insurance has gone into effect I pay more and get less. That’s a lot of people’s story now. So having socialized medicine hurts people to…

      03/22/16; 7:57 am
  4. I grew up in a different age and had the fortune of great insurance and steady employment most of my life. However when Sheryl and I got married (1977) we had no idea about the cost of diabetes. For two years we had no insurance and in August of 1979 we had our first son on the way. It hit like a ton of bricks for a guy in college no job, and his wife working at the local Kroger. I wish I could say we made it on our own (we did not) or that it was easy (it was not) but i am glad we made it 38 years now.

    I really enjoyed your wonderful blog and Charity thank you for the wonderful work you so with ‘the Betes organization’

    I included your blog on the TUDiabetes blog page for the week or March 21, 2016.

    03/21/16; 8:57 pm
    • Charity Shuster-Gormley #

      Thank you so much Rick!! That means a lot!!

      03/22/16; 9:43 am
  5. Most of the jobs I’ve taken as an adult professional have been determined in part by what kind of health insurance options were available – and I have turned away from what seemed like my dream job more than once because there was just no affordable option. I’ve been on my parents’ plan, COBRA, the state high risk pool in my birthplace and covered by my spouse. Right now I have my own employer sponsored plan that isn’t the greatest, but isn’t bad considering the abysmal options out there where I live now (TX).

    Unfortunately the ‘you can do whatever you want’ mantra is only true to a point. You can indeed free your mind to do whatever you’re capable of – but your body is broken and there’s no fixing that (yet). Your mind is worthless if you can’t take care of your health.

    03/22/16; 9:20 am
  6. Thank you for sharing this post! The Healthcare System in the US has to change. It breaks my heart that some people get excellent coverage yet others have to chose between buying food or medical supplies and meds. I enjoyed reading about ur experience!! Thanks!!

    03/23/16; 1:18 am

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