So… I’m working on an article about Right to Try laws from a patient’s point of view, and one of the best sources for research– on that subject or any other related to stem cells– is Paul Knoepfler’s blog. I check it pretty much every day. Today, there was an article about stem cell clinics. I’ll let you-all go over there and check it out, but I posted a comment that I kind of like. I’ve often heard the advice that if you write out a long comment on someone else’s blog, you really should publish it somewhere else, too. (For one thing, I can’t be absolutely sure it’ll make it through moderation.) So here it is– my take on stem cell clinics (for the day, anyway.)
BTW, I’m not a fan of them. At all. Sorry, I know some people have had good experiences, but I’m just Not. A. Fan. So that might come through a tad…
I wouldn’t trust any stem cell clinic as far as I could throw anyone or anything in it.
That having been said…
My incurable disease was at its worst almost four years ago. Let’s say that at the most hopeless moment, somebody had told me that they knew of a stem cell clinic that had a cure. The only problem was, it was located in the middle of the South Pacific on an uncharted island and could only be reached in a canoe. Once I got there, the clinic would be, oh, a thousand miles from any other inhabited land. A massage therapist would be giving the treatments. Or maybe a giant sea turtle. Hard to say. But look– here’s a nice shiny brochure! Look at all the people who say it helped them!!
I LIKE to think that I wouldn’t have grabbed the oars and started rowing. (Particularly problematic, considering that I lived seventy miles from the ocean.) But I cannot say without a doubt that I would have stayed rational and reasonable. If they caught me at the worst possible moment, I might have started packing lifejackets.
The end of the story, though, is that a regular, marketed drug helped me when NOBODY thought it would. It was a miracle. But if the miracle hadn’t happened, I’m not sure what I might have done. I know what can happen in total desperation, when you just feel like you can’t take one more step, breathe one more breath, make it through one more moment, when you’d do anything to escape the nightmare of an incurable disease. People do crazy things at a time like that, and it doesn’t make sense to blame them for it. Instead, we need to push and work and fight for legitimate stem cell based treatments to help everyone.
I survived the disease, and I now have the only remission on record. But a remission is not a cure. The stem cell drug I need for a real cure is now rapidly moving towards approval in the rest of the world, but in the USA, it—and all other cellular therapies-- are still stuck behind prejudice, ignorance, and lack of funding. Hundreds of millions of desperate patients with incurable diseases need these drugs.
That’s why I’ve gone on to fight for greater public education on stem cell drugs, knowing that our laws must be changed so that all of us can get access to the best treatments instead of our health and our lives being held hostage by special interests.
I’m now a patient advocate whose work on stem cells and patients’ rights has been published in outlets such as the Oregonian. I am a manager at popular science and financial blog www.stemcellinvestor.com and a frequent speaker at many venues across the spectrum, including churches, scientific conferences, and atheist groups, and everything in between. I’m also an advocate for Right to Try laws that would allow access to experimental medication for terminal patients at the state level. Read the entire story in my upcoming book, And the Blind Shall See: A Skeptic Patient Surprised by Faith, Science, Family, and Miracle Cures.
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