Persistence pays off!!

I had no idea that I’d be writing this post so soon after my last one…but I am extremely glad that I can!!!

I received a call today from the assistance program provided by the drug company, that they had my application and were reviewing it, and in a few days I’d be getting a call back to finalize it and see if I would be approved. I was a little bummed that I’d have to wait a few more days…However, 4 hours later I received a second call saying that it WAS approved and that the medication would be at my door by Friday…as in two days from today…as in HOLY CR@P… my mouthy/pushy/assertive(read occasionally somewhat bitchy) attitude paid off!!!

I always tell you to be proactive, and assertive and participate in your own health care because you are your best advocate. Recently though I was even beginning to doubt my own theory. I have been feeling frustrated and hopeless about the situation.

Then it hit me. I’m too obnoxious/pushy to let this get at me. So, after TONS of phone calls, a somewhat scathing e-mail to administration at the hospital where I receive treatment, recruiting my insurance rep into the situation, etc…I finally got the result I was hoping for.

So again I will say to you, be persistent, be bossy, be assertive. Do not be bullied out of doing something that you feel is right for you. You have every right to be an active part of your treatment, and no one, not even your doctor, has the right to tell you that you CAN’T try something that will help you. Obviously you need to take their knowledge into account, but their personal opinion of a medication/treatment option should have little to no bearing on your course of treatment. If there is enough evidence that the method is effective/beneficial, pursue it as strongly as you possibly can. Do not be swayed, do not give up. Yes it is hard, yes it takes time, in my case it has taken almost four months, sometimes it can be longer. But believe me when I tell you the feeling I have right now, winning, succeeding, feels really good. So good in fact…that I think the bottle of champagne that is in my fridge right now will be opened soon. 🙂 It is time to celebrate

I will leave you with the usual message…be assertive, be persistent, be strong.

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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.

Lina