frustrationYou won’t believe this! The insurance company will not pay for the additional infusion of donor stem cells… YET…

Why? Because I am NOT transfusion dependent at this time. So they want me to almost die again instead of being proactive and/or preventative of my condition. WTF!!!!!! Yes, I am angry.

I got the rejection letter a week ago. So I started doing my research. I know what my Doc was going to do… what the outcomes are from the medical studies (and it’s all positive… like 2 to 3 times the long term survival rates. And the medical studies pretty much say to do it earlier than later). But in the rejection letter it actually states there is no evidence for positive results from the NIH or other reputable government agency. Does the procedure have the seal of approval yet from the NIH? Why? Because these medical studies are still in Clinical 1 and 2 trials and were published in 2011 – 2013. My insurance says, as “defined” by the University (through which we get our insurance and which has a huge Medical School), says that 1 and 2 clinical trials are “experimental”. Technically, they are. Experimental procedures are not covered by insurance.

Did the University just buy a plan (a package they could afford) from the insurance company and the insurance rep and director of making these decisions just bold face lied to me? (Automatic denial for “experimental” procedure) or… Did the University decision-makers actually decide purposefully to exclude 1 and 2 clinical trials? If so, how short sighted can a Research 1 university (supposedly equal to Harvard and MIT), which the University is classified as, and how hypocritical can they be? Yes, this university is a RESEARCH 1 university and very proud of it!

So the rug has been pulled from under my feet, once again. Good thing I can surf. I’m just trying to figure out where I should stand.

Luckily, I’m not transfusion dependent, except during surgeries. We have to schedule my vocal cord surgery (to remove the viral growths that are exasperated by my lowered immune system) in April, after spring break, so I can at least enjoy the kids and no complications arise. Lastly, I need to finish the IGG-IV treatments to see what impact they really are having. Those IGG treatments are fucking expensive… and we can keep doing those for a year or two. I would not think they would want to keep paying that.

But personally, I’m getting tired of the change in plans, the surprises, the stress, that I have to fight so fucking hard to get proper treatment. The irony is that my family and I have paid into the insurance system for over the past 49 years of my life. I was always covered by insurance. I have the right to proper treatment for my condition. And if need be, I’ll sue them for my rights and my life. Insurance companies and employers should not get a say in the treatment of a patient. They buy plans (basic, medium, or high), and I do see the hole in excluding procedures as part of a plan.

But that is NOT what the Affordable Health Care Act (“Obama care” and I hate that term.) says and I’m 99% certain about that. ** Sidenote: If the Republican party really cared about the middle class they should have done something about this issue years ago, instead look at what they did a few months ago… sorry soapbox. ** It has always been and should always be the doctor’s job to decide on treatment and timing, as well as the Hospital’s.They are the experts, not some insurance penny saver reading a clause in their contracts.

Damn it! I just want to get well and go back to work.

~ Mark

1 Comment

  1. I understand all of you must be feeling… what the hell do I say to that rant… really there is not much to say.

    Friday we met with NP Stephanie and talked. There are other options right now to try out to wake up my platelets. They are the slowest to grow back anyway… and as I said in my post, I’d like to know what effect the IGG-IV treatments have. Medicine is not science as we think of it. They are inquiry based studies with a lot of variables and very little research doctors can control. That I understand.

    But as consumers and citizens of this nation, we all should worry… better yet demand… that insurance companies do NOT get the power to prescribe medical treatment. As I talk to nurses and my doctors, they say it is only going to get worse. This is the part that worries me. WHY?

    Why would we as consumers and citizens allow non-medical personnel make medical decisions for the treatment of our illnesses? Did these people go to medical school? Did they practice medicine as doctors? Do they even know how to read the research literature to even suggest a possible treatment option. My doctors do!

    Why? Because they are specialist in their field. They actually see patients, do research studies, and are the only ones who have the knowledge and skills to decide on and prescribe treatments and procedures on a severe illness. We are not talking about the common cold, the flu, or an illness like the chicken pox.

    Don’t forget what insurance companies do,,, they sell insurance. Why? To make money. They “bet” they will collect more money than they have to pay out. That is how they make money.

    As a consumer I buy a product based on its quality and cost. Once I buy it, I own it. With insurance I buy it for a length of time (they set, which is a year), with an agreement that they will not drop me if and when I use their services. That is now a law passed by our government to protect consumers from getting ripped off by illegitimate insurance companies. As I mentioned in my post my family and/or I have bought (owned) a service to medical treatment for 49 + years (with maybe, maybe a year or two without owning a medical insurance policy). To any company I would be considered a model, loyal customer. Out of 300 million people in this country, I’m near the front of the line. And I should be (based on our capitalist economic system) because I paid and owned an insurance policy for around 49 years, including right now today, in other words my whole life!

    My doctor’s and I claim that I have a serious medical condition and need certain procedures and treatments. My doctor’s make the decision for me because they are experts in their field of medicine. Have to log off… brb.