IBDCURE: A Personal Message From Gideon.

RE: Last Week's Page-One Story in the Wall Street Journal

28 SEPT 2007

Dear Friends,

As many of you now know, in June 2006 I had begun an experimental therapy for Crohn's disease, an intestinal disease which I've endured since I was just days old. Because I – like so many dealing with this disease – have few viable options to treat the disease, my doctors felt it was not only in my best interest, but absolutely critical for me to start taking this new drug, as I have been unable to achieve clinical remission ever since I was diagnosed at age twelve in 1996. Through it all, I've had close to half my gut surgically removed, and at one point, I nearly died in the hospital, battling liver failure, internal bleeding, and some of the most resistant forms of staph. During the past four years, however, I've been fortunate enough to fight my way back to life with the help of some of the best doctors in country.

After initially taking this new drug for three months, my blood work improved dramatically in ways I had never responded to any other therapy. This was the most encouragement I had in years. To be given the hope that one day, I may live a life free of this menacing disease, is simply the greatest hope one could ask for.

But by the end of August 2006, I was robbed of this hope when my insurance company – Blue Cross/Blue Shield of New Jersey – casually decided that protecting their bottom line was more important than my life. They decided to withdrawal their initial approval for the drug. In an effort to save $8,800 per month - the price of the new medication - they hired a peer-clinical medical doctor to review my case in dissent, to deem that it wasn't "medically necessary" for me to continue taking the drug. After alerting the drug manufacturer – Celgene Corporation – of my dire situation, they decided to not dispense the drug to me free-of-charge, as they did on a case-by-case basis patients unable to garner coverage.

What ensued in the months afterwards was a hospitalization, along with additional health challenges of enormous magnitude. I had no choice but to drop my enrollment at school for the semester, and spent months with my doctors trying to find something else that would keep me out of the hospital.

What also ensued was serious and utter disgust for the inner-workings of our health-care system. After witnessing such an atrocity first-hand, I could not come to grips with fact that Blue Cross was able to swindle their way out of paying for a drug in which they had initially given the green light. Further, the clandestine manner in which they went about withdrawing their initial approval was exceedingly unjust, and their excuse for having pulled the rug out from under me simply could not be justified.

I was even more appalled to find that I am just one of millions in this country struggling to garner approval for life-saving therapies. Many have been quick to assume that medications which aren't covered through private insurers or Medicare are automatically dispensed free-of-charge by the drug companies, but this couldn't be further from the truth.

The drug companies have collaborated to wage full-fledged ad campaigns to the allay the public's fears on popular networks like CNN to play down the calamitous issues at hand, by placing themselves in heroic positions, boasting their so-called "patient assistance programs."

But the fact is Celgene's shareholders has benefited from nearly a 1000% increase in its stock price in the past five years. The CEO of the company was compensated $1.24 million dollars in cash in 2006, and exercised more than $33 million dollars in stock options. Other company insiders have also enjoyed exorbitant compensation through sales of their own lofty stock price. So clearly, when there is enough money to go around, why are there patients like myself still struggling to obtain access to essential medicines, which may in fact be our last hope?

When I was exposed to something so atrocious and so backward, I felt compelled to do something about it. Acting on it was a moral imperative – not just for myself because my life is on the line – but for everyone in this predicament.

The truth is I was not ready to back down; I was not ready to give-in. Not just for me, but because this is not the America I know. We're supposed to be a shining example for the rest of the world to follow. And if this what we have to show, then what kind of message are we sending? What does it mean when drug companies care more about their profits than their patients? What does it mean when private insurers can hire their own consultants to weasel their way out of paying for life-saving medications? What does it mean when our system fails patients like myself and leaves us to die?

It means that it's time for things to change. I hope that my experience is a wake-up call to lawmakers in Washington and throughout the country. Regardless of my ability to have garnered approval for this medication, many patients who lack the energy and resources to advocate for themselves are still left in the dark. I hope that my situation will set a positive precedent, and bring to light to this vital issue. Nobody should ever have endure what I've experienced, and not have access to medicines they so desperately need. Because I know there can be a better way, I know there must be better way.

On a final note, I want to take this opportunity to thank those of you who have taken the time to write, expressing your kind comments and desire to see things change. I would strongly encourage you to also forward your comments to Geeta.Anand@... - the author of the piece - and post them on the Wall Street Journal health blog at: http://blogs.wsj.com/health/2007/09/18/drug-sticker-shock-makes-insurers-sticklers/

Let's get this conversation started.

With great heath,

Gideon.

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PS: For those of you who do not have WSJ.com access, the article can be read at:

http://health.groups.yahoo.com/group/ibdcure/message/16

or downloaded in pdf format at:

http://www.ibdcure.org/WSJ.pdf