Friday, February 7, 2014


There's quite a TwitStorm swirling and frankly, I'm backing out of the whole thing.  Cancer envy.  Breast cancer is a good cancer.  In comparison.  If you don't know what I'm talking about, a good place to start would be with the Salon article written by Mary Elizabeth Williams.  She is a metastatic melanoma patient.  Then, you can meander over to Seporah Raizer's piece in HuffPo.  There are plenty of other articles but the last one I'll leave you with is the blog post written by one of my favorites, The Cancer Curmudgeon.

Breast cancer is the enviable cancer.  GRRRRRR.  Words like Cancer Envy and Cancer Olympics really have no place in the world of advocacy.  Cancer is being looked at on a molecular level so I have to believe we are very quickly heading toward less organ specific research.  Science is looking at genetic aberrations, over or under expression of specific proteins, pathways that are open or closed.  This isn't my grandmother's cancer although, for the moment, it's still being treated in much the same way.  Breakthroughs are going to transcend organs.  That's my non-medical, non-scientist, just sitting in the cheap seats opinion.

Thus, I do not want to engage in the conversation about why one cancer is better than another.  Or why one cancer is funded more than another.  I choose to advocate against stigma attached to any disease and I choose to open my mouth in ways that can be helpful.  I'm irritated by the whole thing but we are all stamping our feet with our arms folded, insisting our view is the right view.  When I looked at myself and began to feel like a petulant child, I backed away.

Right now, there is a real and immediate problem that MUST be addressed.  Prior approval for prescribed medications.  This is a problem.  It's real and it's now.  And it's urgent.

My medications have finally been approved.  The insurance company was on board with me the whole time.  I've thanked them privately and I've thanked them publicly.  I wish I could say the same for US Scripts but alas, they are scum.  Ditto, Medco/Express Scripts.  When I was trying to pick up my medications, the medications the Chief MEDICAL Officer of the insurance company insisted they approve, they were not approved.  When I waited on hold for 25 minutes, was asked for my number in case we got disconnected, was told I would need a supervisor, was subsequently disconnected and my call was NOT returned, I wanted to scream.  Instead, I waited for Ed who fixed everything the following day.

I've been put on notice.  One of my medications is absolutely, positively never going to be approved again.  This is a "one time deal" unless....  Unless WHAT???  I've printed out the form for my doctor. I will ask him to send me a copy of whatever he submits to US Scripts for next month's merry go round circus of events.

In the meantime, there are thousands, likely tens of thousands of people who are in the same boat.  Except, their medications are for conditions where there is a bit more urgency.  This commentary in the Tampa Tribune hits on every point of this medication mess.  I've spoken to a number of people who are awaiting an appeals process.  Others have just walked away or accepted a substitute medication.  Here's the thing.  I WILL use generics when available and in the case of one of my medications, I DID switch when a generic was available.  The problem?  The generic did not work.  My symptoms were back and I was in bad shape.

I have to do a little more homework regarding this aspect of managed care.  Is there some sort of loophole buried within the pages of the ACA that has triggered this fiasco?  It's all too coincidental that these problems began on January 1.  I'm going to do a little digging to try to understand what the hell happened.  And I plan on starting a TwitStorm of my own.  For now, #NeedMyMeds is how I've tagged a few tweets.

If you have a problem, I hope you will consider using social media to voice your discontent.  The twitter symbols @ and # can be used on Facebook too.  I have no idea how that all works but the two companies that are stepping on my last nerve are Medco/Express Scripts (yes, a merger because we need LESS competition and MORE control by a bureaucracy) and US Scripts. I can't say for certain if they are on Facebook but they do have twitter handles.  Not being used by them, but that hasn't stopped me from tagging them in a few tweets.  @ExpressRxHelp and @USScript

And, following the suggestion of the ever fabulous Jude Callirgos, I'm going to double hashtag my tweets.

#MedsDenied #NeedMyMeds     

Feel free to share your stories or leave links to blogs in the comments.  I'm not taking this one on the chin.  If I were stepping into the ring, I'd say the gloves are all laced up but since hockey is my sport of choice, that means I've dropped the gloves and I'm ready for a fight.  Steer clear.

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  1. Thanks for the mention and liking what I wrote! "I'm irritated by the whole thing but we are all stamping our feet with our arms folded, insisting our view is the right view. When I looked at myself and began to feel like a petulant child, I backed away."Yeah, exactly.
    Enjoying the info on medications you are writing.

  2. I am curious about this. I know I've always had to have Xgeva prior approved, but not my routine prescriptions.

  3. This is brilliant! I may have to rely on #needmymeds (I pray I don't though!) in the future. There was a scary time the beginning of January with some of my brain tumor/headache meds but thankfully it worked out.

    PS, you're pretty brill too!