Saturday, March 17, 2012

Patient vs Medical Professionals:Do Your Homework!


Many people place medical professionals on such high pedestals, that they forget to remember that medicals professionals are human beings, too. Yes, medical professionals are highly trained and schooled, and dedicate their lives to helping others, and we would be in a world of hurt without them, but we must not think of them as being perfect or flawless. They can, and do, make mistakes, forget important things and may even sometimes seem cold and uncaring. We should not judge them, and we should be certain to only associate with ones that we can relate to and personally trust, but that doesn't mean that we should not question or check-up on them.

Take my recent encounter for example; the renewal of my life saving drug; Dasatinib, also known as Sprycel. Sprycel is the drug that I take every day, which enables me to continue to live with chronic myelogenous leukemia, also known as CML. My doctor has made it perfectly clear to me that my chances of survival depend entirely upon me taking this medication, at the same time every day, without fail. He has made certain that I know the importance of consistency, (no skipping doses)so that the leukemia is less likely to mutate, and find its’ way around the drug, thus endangering my life.

Knowing this has caused me to be absolutely diligent when it comes to taking my medication, despite the way that it makes me feel. My consistency has resulted in a very rapid deduction of “bad” cells in my bone marrow; this is a very good thing. Since my health insurance does not cover prescriptions, and a one month prescription of Sprycel is over $15,000, I have been fortunate enough to have Bristol-Myers Squibb come to my rescue with their Destination Access Program. This program allows me to receive the Sprycel from them, at no charge. This is a program that must be approved on a yearly basis.

Since I was diagnosed with leukemia last February, I was placed on the program the last week of February, meaning that in order to continue receiving my medication without it being interrupted; I would have to be re-approved into the program by the end of February. Needless to say, I knew the importance of not having a lapse in medication, so I started this process as soon as I could; the first week of January.

Now allow me to preface this next paragraph by stating that this process really is; quite simple. It is a matter of faxing DestinationAccess a one page application, and my tax return. To be eligible for this program, you must not make more than $75,000 per year if you are single and $150,000 per year if you are married and your insurance must not cover prescriptions. In addition to this, your physician must send in a one page form that has your diagnosis on it; he must sign and date it. He must also send in a prescription with your dosage, and the quantity box checked; there are two choices, 30 and 60. This form must also be signed and dated; simple, right??

HaHaHaHa!!!! This is where the fun began. It has taken eight, yes, I said EIGHT weeks for this process to be completed. Today, with one pill to spare, I received my medication. The reason, in my opinion, is utterly and completely ridiculous; it seems as though my doctor has an assistant that handles this portion of his workload; a smart thing in my opinion, as this frees up his time, allowing him to see patients and to do what he does best. The problem with this is that his assistant was obviously unable to follow simple instructions. Because of her lack of either reading, or comprehension skills, I, along with Destination Access had to call, and email her, no less than seven times, in order for her to properly deliver the two, completed forms, in order for me to receive my medication. Because these are medical forms regarding a very potent and expensive medication, they must be accurately filled out; no exceptions.

I have never seen so many different ways to screw up two forms; everything from not checking a box to no signature to a missing date. She took so long to get it right, that the doctor had to fax a new prescription form, because the old one had expired. What finally got my case approved was my sending a personal email to my doctor to explain the situation. I must say that I was not my “nice” self that day and even said that I felt as though I was going to be “dead” before they managed to get these two pieces of paper right. After he received that email, my papers remarkably arrived at DestinationAccess with all of the i’s dotted and t’s crossed.

I suppose my reason for this rant is that even though you may be dealing with highly trained medical professionals, you must continue to do your due diligence and be your very own, patient advocate. Had I not called, and continued to check with Destination Access on the progress of my case, I still would not have received my medication and would be entering into the danger zone. It is always good practice to follow up on anything that is truly important to you, or your health. Ask questions and double and triple check everything. Be smart; know your body, your disease and your treatment, don’t let someone’s ineptitude affect your health, your mind or your spirit. Make certain to trust and believe in yourself, and to do whatever it takes in order fulfill your needs.

6 comments:

  1. Michele, I can fully understand how you feel (felt) I have been on the receiving end of the fall through the cracks circle. I must say I thought I was the only person who told medical personal "I could be dead by the time . . ." I am so happy to see I am not the only one. My Sprycel prescription needs to be renewed next month. Please pray it it not a "I could be dead by the time" process. Until then keep us all posted and keep up the happy happy attitude. Mary Margaret

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  2. Mary Margaret, I will keep my fingers crossed for you!
    Glad to hear I am not the only one with a big mouth!

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  3. Yep Michele - us CMLers have to be our own health advocates and administrators as you have found out.

    Just to make your day. It does not get any easier as the years go forward - you still have to be diligent.

    Sue

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  4. what dose are you on? I was on sprycel and now changed to another drug...my pharmacy told me to return then and they would through them out... What a waste...

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  5. I am on 100mg 6 days a week,what did they switch you to? and how long were you on Sprycel?
    As you can tell, I ask a LOT of questions!!!
    My best to you,
    Michele

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Bricks for the Brave!!