Good Morning. I hope this finds you well. I hope you are well because I wouldn’t wish chronic, terminal, or any other kind of illness on anyone. My husband has been dealing with a degenerative issue for over 4 years now and it is not fun. Well….I guess you know that. I don’t know if you have ever heard of Ataxia..it is what he has. I lovingly call it Brain Rot. His cerebellum is shrinking. It is a rare disease. Very rare. And there is no treatment and no cure. Because it is so rare there is very little funding for research. Therefore we just sit. And wait. For his brain to shrink away.
I am writing you because we have a fabulous doctor in Denver. She does so much for Ataxia patients. She is desperately trying to get research done to help fight this terrible disease. Again- we need money to do research to get medicine trials funded. She went to a LOT of school. Like 12 or more years I don’t know I graduated Barely Cum laude from a state school. She’s smart. Like very smart. Years and years of neurology classes and she’s been a doctor, practicing for YEARS. She knows the brain. Do you? Did you go to medical school? Do you even know what Ataxia is? Im beginning to think, like many, you’ve never heard of it. Because every test my husband has to take…every scan or blood test or spinal tap or whatever the shit our doctor tells us to do…you deny paying for it. Why is that?
Are you aware of something about Ataxia that we are not? Do you have a special knowledge that none of these tests or scans will help him so you just choose not to pay for it? My husband has worked over 40 hours a week for 20+ years. He went to college, got a degree, and has had a job, taken care of this family, paid taxes and paid into an insurance plan (a shit ton of money each month) for 20 years or more. We follow the rules.
My husband doesn’t smoke. He doesn’t do drugs. He was very very healthy and ate well and exercised and was never overweight. He did his part to stay healthy and avoid the healthcare system. It didn’t work. Sometimes shitty things happen to good people. He got the Brain Rot anyway. And of the thousands and thousands of dollars we have paid into health insurance over the years we had barely used any of it. We hardly, if EVER, went to the doctor. We are healthy people. WERE healthy people. Then Brain Rot.
And you have systematically decided…YOU….who sits at a desk in a chair and looks at numbers and does not know my husband or his doctor or even what the fuck Ataxia is…YOU have decided not to pay for shit. What qualifies you to do this? Im just curious. Are you more knowledgeable about my husband’s brain and what it needs than his doctor?
I am not political. I don’t give a shit about Democrat or Republican or Obamacare or if it helps or hurts or whatever. I care about my husband. And the fact that his FUCKING doctor doesn’t get to decide how he’s treated for his condition——YOU DO. Really? You? WHY do you get to decide? We were on one of those uphill, hopeful swings recently. Our doctor had a new revelation and there is 1 trial that my husband MIGHT have qualified for. He needed to be genetically tested AGAIN to see if this particular gene was in his DNA. If it was then he could participate in the drug trial. We got the call this morning that you wont pay for the test. Its thousands of dollars. So we can eat, or we can maybe get him the drug that might help him.
I don’t care about the system. I don’t care about how it works or the details or the red tape or any of that bullshit. As Im sure no one who is living with a degenerative or terminal disease does. We don’t give a shit. We want YOU to pay for what our DOCTORS say is best for us. Shouldn’t a fucking doctor get to choose what best for a patient. Not some analyst with barely a 4 year degree at a desk who’s never set eyes on the patient?
I tell ya what….Im personally inviting you, Cigna, to my home. You can meet my husband, watch him try to walk, talk, function. You can ask us questions. I can tell you the horror stories of what he’s been through. What our family has been through. You can see the canes he uses to walk, his adaptive trike, the space we have so he can get through the house. You can look at the 10 spiral notebooks full of notes Ive taken at doctor visits over the past 4 years trying to figure out why the FUCK he got this shitty ass disease. THEN….and only Then…if you decide he is not worth the treatment….THEN you can deny us coverage. To our faces.
You don’t get it. You don’t get it. And I pray to Gd you never have to personally find out. I wouldn’t wish this shit on anyone. But please, for the love of God, please, before you just systematically hit DENY without thinking about it. Before YOU in your little chair at your stupid desk with all that power that you shouldn’t have. Before YOU decide whats best for MY family….please think about YOUR family. And who you would want making decisions for them.