Wow! It's the word which springs off of my tongue, I, of course, being the collective world of Rare Diseases, all, approximately 7,000 of them.
To say that that you have fallen head-over-heels for me would be quite the understatement. Your recent "tidal-wave," as one noted analyst called it, of mergers, acquisitions, and IPOs, the latest being the Ultragenyx initial public offering, the price of which doubled in the first 48 hours, have left me floored. With recent names such as ISIS, Moderna, Alexion, Lumos, Genzyme, Sanofi, and more, expressing their love, devotion, and opened checkbooks, I am truly overwhelmed. And, if I may add...
...a bit confused. As you well know, I am Rare Diseases. I am the quite "uncommon" Common Variable Immunodeficiency, I am Batten's Disease, Hirschprung's, Lou Gehrig's Disease, and at least 150 conditions whose names end with the word "Syndrome." I do not carry the baggage of a jilted-lover, nor the suspicion and caution inherent with lost love. I, the Rare Disease World, have never been loved before. So all of this action? All of this attention? My heart just doesn't know what to make of it all. My stomach is filled daily with butterflies as the almost daily headlines scream forth "Pharma's New Infatuation with Rare Diseases" and "Investors Flocking to Orphan Drugs!" My heart is swooning at the prospect of finally being given the attention it deserves. I, you see, am the oft-neglected sector of chronic-illness, those diseases and disorders whose numbers of patients are so small, and seemingly so beyond profitability, that you, the dashing, debonair suitor, has always turned your nose up at.
Many in my circle, my sphere of influence, have questioned your motives. Are you in it for the money or, as pundits love to ask, are you experiencing an epiphany, an awakening of consciousness for me, me who has always been rejected, a virtual "wallflower" at a debutante ball? The fact is, I don't care why you are in it. I only care that you are interested. My patients need treatments and cures. They need research. They need awareness and they need attention. Do you realize that some of my diseases have not had a new research article turned out in forty years?
I am new at love. I have never really felt the need to be needed before. I have never felt desired. I long for your love, and the prospect of a long-term relationship sets my heart aflame. But I do request, as one who doesn't really know what love is...please take things slowly.
From all that I've heard from others, love has its tough times, its pitfalls, its hurdles, and its moments of doubt. Yes, stock prices will fluctuate. Yes, some clinical trials will inevitably fail. Yes, investors will, at times, pull back. Yes, the creation of an overpriced, undervalued "bubble" will always be on the lips of our detractors. But please, please Big Pharma. We can make this work. I am committed to being your lover. 'Til death-do-us-part. But I need to know that what's happening in your soul is not just a flash-in-the-pan. Could your love for me turn sour at the first signs of hardship?
I will watch, and I will await patiently, your continued interest being the sign of fidelity and commitment which my heart seeks and desires. Please, please don't let me down. My patients are dying young. The are desperately in need of treatments and cures. They need compassion and care. They are becoming paralyzed. They have no immune-systems. Tumors are invading their brains. They are isolated. They are afraid. They long to live. They dream of health.
Yours with heart and soul,
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