More of the waiting game….

So…this post was going to be about the effects that delays in health insurance approval can have on patients, in a very general sense…however, I did not get the response I was hoping for from the experts I’ve spoken to(several MPN doctors and even the CDC’s statistical division)…that being said, you’ll be stuck listening to me whine a bit tonight. Fair warning…turn back now. No? Ok…well…can’t say I didn’t warn you…

I have been a patient at my doctor’s practice for 5+ years now. The treatment has usually been great. Recently this has changed. You are probably bored of hearing me say this, but I am what I call an informed, proactive patient. I want to be a partner in my health care “team”. Generally that has been working. Lately though, my “team” does not seem receptive to this. In October I requested that we try a new medication for my treatment plan. Not only did the “team” seem uneducated about this medication, I was told that the doctor was “not a fan” of the medication, and therefore most likely would not use it to treat me. After some persistence on my part, and encouraging the fellow on the “team” to look at new research, they seemed more interested and offered to prescribe the medication and try to get it covered by insurance (slim chance, as it’s an off-label use…)

I was very encouraged to hear that they were going to try. A couple of weeks passed, hadn’t heard anything, so I called, to be told that it had been denied. I asked what our next step was…they seemed surprised I wanted to persist. I asked if there was an appeals process, and was told “yes there was”. I asked them to go forward with it. A couple MORE weeks passed by and was told we’d failed again. Finally I told the “team” that I would like to call my Health Insurance Rep for advice. That was encouraged. I called, she called the insurance company and was told there had been NO APPLICATIONS for the medication we are trying to use. Funny…as I have been told on two separate occasions that it was “denied”. There has been no prior authorization applied for, which is required to try to get the medication covered by my insurance company. My rep is now corresponding with my “team” to see what the problem is. With proper evidence, off-label medications have been approved by my insurance company in the past.

I have in my possession eight articles from reputable clinical journals proving the efficacy of the medication I want to use. Not to mention several other doctors and patients who will all give glowing reviews of the medication. What I can’t figure out is why I have been lied to like this. I was under the impression that a doctor’s personal opinion was not supposed to get in the way of their ethical treatment of patients…

It has been brought to my attention that this could very well be a clerical error. Perhaps the people at the insurance company lost the paperwork…or filed it under the wrong name, which is why my records show no prior auth requests…who knows. I’m trying to keep an open mind…but that opening is getting narrower by the day.

Now, as frustrated and pi$sed off as I really am….I. Will. Not. Stop. I will continue to pester, and call, and try to get this straightened out. This is my health, my life, my treatment. I shouldn’t have to worry about bruising the doc’s ego. He is supposed to have my best interests in mind. Not his own pride. No patient should ever have to feel this way.

As always, remember to be assertive, proactive, and persistent. Do not give up. Ever.



5 thoughts on “More of the waiting game….

  1. Good for you! I have Polycythemia Vera and have taken quite an active role in my healthcare. I think it ‘s especially important when you have a rare disease such as ours. Unless you are using a major hospital, most doctors have had very little first-hand experience with MPNs. Consequently, they are not always as up-to-date as they should be. Good luck to you. So glad MPN Research Foundation provided a link to your blog!


  2. Hi Lina, I was diagnosed with ET 7 months ago, I’m 34 yrs old. What new medication are you wanting to try? my health insurance also refuse to cover my costs, I am in South Africa. I have been trying to find out more about ET but everyone keeps on telling me Hydrea is the best medication? Thank you for persistance, it shows me there is hope! Jeanne


  3. Lina, if you don’t fight for yourself, nobody will. Most “team” people are overworked and do not know/want to do this work. Sadly, they have the mentality of “we are not paid for this service, so why should we do this”. I am lucky with my doctor and my “team”, they know me for 12 years and they will do anything possible for me. I also have great ecpirience with the Mayo clinic team, they are EXCELENT!


  4. HI Lina, Curious – I too was diagnosed with ET about 6 years ago. I have had several hip surgeries – and often thought that there may be a connection between the two.
    Perhaps all the xrays or maybe just the trauma could have triggered the mutation.
    As for meds – I fought the fight and won and you will as well.


  5. Patti, Thank you for the encouragement! I really appreciate it!!

    Jeanne, I am trying to start Pegylated Interferon Alpha. It is the best option for someone whose in my position. I have an enlarged spleen and I’m a female “of child bearing age”. Hydrea is contraindicated during pregnancy, and does nothing to shrink the spleen.

    Patricia, I have hip dysplasia and had bilateral periacetabular osteotomies to correct the deformity. I have occasionally wondered if the surgeries perhaps caused the mutation. I have been told that trauma can cause a change in the bone marrow…but after going back through my CBCs I found that my platelets were somewhat elevated before my first surgery. I appear to be a member of the “Just really gosh-darn lucky” crew. 2-3 out of every 100,000 people spontaneously get ET, so go me. I should start buying lottery tickets….

    Gibbur, I have considered Mayo, but it’s not exactly feasible given where I live. My doc is supposedly an expert in my area, but…lately, the expertiese seem to include mainly phone call dodging and and driving their patients to the brink of insanity. If it comes down to it i will definitely consider making a field trip to see Dr. Mesa in Scottsdale 🙂


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s