There is no population more fragile nor desperately searching for the hand of cure than the parents of the disabled. There is no greater dread, no greater fear, no darker empty space than the loss of child. There is no greater source of anxiety than a parent's knowledge that their severely compromised child may outlive them. There is no greater pain which is felt at the core than a parent's sight of their child in agony, seizing, intubated, unable to move or speak. Parents who I have come to know would readily trade places with their child because their pain is so deep.
There is no deeper crevice in hell than that place reserved for those who sell false hope to parents of the disabled and make claims which are incapable of substantiation or who refuse to allow for a thorough examination and review of their claims. The only charlatans who have an even lower place in hell are those who couple their claims with evangelization and religion.
I blog, I read many blogs, I join many yahoo health groups, sometimes just lurking. Many parents of the severely disabled also lurk, share very sad and difficult stories, seek friendship and compassion and above all search for answers which too many are willing to provide. The most dangerous places on the web are the heavily moderated groups which allow for no questioning, no dissent, no requests for research studies or documentation of success...but do encourage stories of desperate woe and miraculous cure. These moderators are the modern day "snake oil" salesmen. Today, they sell stem cell therapy for the disabled and dying, coupled with the repetitive Bible quoting, and off-shore. Parents flock to these groups, too wearied by life to deeply search for the truth of this hope.
I have joined a number of dedicated stem cell groups. I can say that the parents are among the most honest and desperate I have met. The moderators, especially for the programs in the stem cell programs are vile. They will not allow posts which relate to embryonic stem cells, they will not allow posts which request authentication beyond parent testimonials, they will not allow posts which question the role of placebo or normally expected change and development. They will not provide answers to nor allow posts which ask for the backgrounds, qualifications, research and publications of the stem cell centers doctors. God forbid that you ask why they use adipose versus pluripotent stem cells? In many cases that I have researched, the M.D.'s name is virtually unknown by any search engine and Medline has no listing of any research they conducted. Medra's medical guru is a psychiatrist. The new Dominican Republic "Stem Cell Project" has a medical director who is "unGoogleable" but was an evangelist for 17 years (credentials to which I would entrust my son?). I forget he's taking a 4 day workshop in stem cell..... Google produces no results except press releases through yahoo chat groups. His comments to questions in StemCellsDR are also connected to "in Him" stuff. Strangely he is linked to the controversial developer of the now defunct "Miracle Mountain" HBOT programs. Lately I have found links to the Domincan Republic programs in fundamentalist sites, i.e. Damascus Road.
There are no active and viable web sites for these places with pictures, description of facilities or listing of staff and credentials. They are all off-shore where there is little regulation of medical practice. Some attract parents' attention because of low prices, other because they are coupled with a hotel and nice vacation package, others because they boast of stories which are unverifiable. Ironically, others are packaged with fundamentalist Christian themes. Delusions or Deceptions? Maybe a little of each.
Given a son with quite severe brain injury, I have spent an inordinate amount of time and spoken with many people. Some have spent $30,000.00 for a treatment and have noticed small gains which could be attributed to a host of factors including placebo, normal development or outcome expectations. The new Dominican Republic programs promise treatment of less than $5,000.00.
No advice as to which way to proceed; just a host of cautions. Stem cell research is in its infancy. Getting the cells to the place they are supposed to be and having them switch on the regulatory process is a very complex matter. We need to remember that there is still no cure for the common cold. I suspect that this cold will be cured before there is a cure for genetic anomalies, cerebral palsy, autism, spasticity or severed spinal cords. There is a distant hope and promise, but we are not there yet. It is so very important to validate these off-shore claims. If the iterations of cure and vast improvement were real, every clinic in the US would establish stem cell centers...think of the money that could be generated from health insurance providers.
Funny enough in the past two weeks I've had different people in person telling me of these "miraculous new operations" and which involve monkeys writing by bypassing the brains or wheelchair bound children walking with electrical implants in the brain and legs. I think I took them by surprise by my lack of "enthusiasm" not because it wouldn't be nice to improve Oaties quality of life, more than we're doing already...but because firstly Oatie isn't a monkey and neither is he a guinea pig. Of course I'd like to see him run and kick a ball. But at the same time why would I want to get him chopped up and mess with his brain on unresearched experiments. I took one person back because they wouldn't stop pushing.. I said whats wrong with the way he "is"...
ReplyDeleteI love that stem cell vacations...lol! I feel for the ones sucked in by the cougars for the promise of a cure.
Great post Phil, xxx
To Oatie’s mom: Sometimes we blurt out what we really feel ( i.e. “what’s wrong with the way he is”) out of outrage. If you knew me better and ever said that about me, it would make me smiley and happy, just like Oatie.
ReplyDeleteTo Phil: I was in the habit of reading your blog over Monday morning coffee, but now you have become the Saturday Evening Post, not to be confused with the publication that discovered artist Norman Rockwell. That Post died in 1969 but has reemerged and is now published six times/year. I did mention to Oatie's mom that outrage can do strange things to us, and in my response to you, I actually have kind words for insurance providers and how we can use them to help us develop a discriminatory eye toward potential snake oil salesmen. We can all agree that the insurance folks know something about snakes. However ,in the interest of the greater good (I don't want to repel any of your fans by making nice to BC/BS, Harvard Vanguard, Delta Dental to name a few), I will share this with you in a private message. PS. I now expect your blog on Sat. evening, but swapped the coffee for a good micro brewed beer. To paraphrase an old Bud commercial, I can hear you saying "This blog's for you".
To Phil and Rruel, (as with Oatie), I like you both just the way you are x
ReplyDeleteIt's good to know you are scouting those sites, Phil. I have run across some verifiable goodness with stemcell therapy but that doesn't mean 99% isn't predicated on tomfoolery.
ReplyDeleteI actually investigated stemcell therapy for Segev back in 2001, there was a "crazy" MD in Australia trying to treat a particular degenerative neurological disorder with injections straight to the brain. Claimed he had improvements but first order of business was to confirm such a diagnosis for Segev.
That early in the game (and with further investigation of course) I would have jumped on a plane with Segev and gone to Australia in a second.
Understanding the nature of neurological damage, whether inborn or acquired, is essential but neuroscience is still just embryonic (no pun intended) at this point.
Here's an exciting update...StemCellDR, Yahoo chat group just dropped me from membership in addition to blocking posts regarding questions about MD qualifications, etc. I am honored!
ReplyDeleteBeing dropped from StemCellDR speaks very well of you, Phil. Mazel tov!
ReplyDeleteI am joking here (British Humour), but maybe the "MD's" qualifications are...ABTA qualifications (Travel Industry ones!)(And like MD, instead of being Medical Doctor, could be MD Managing Director) in relation to 'Stem Cell Vacations'.
ReplyDeleteI'm proud of you being dropped from the chat group, I agree with Rachel. x