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Friday, March 30, 2012

Why so hard?

I made a new Facebook friend this week.  A lady from Canberra who had an HSCT for MS about a year ago.  We have chatted briefly, and I find these conversations with all patient in this or similar situations both inspiring and informative.  But we both had a big whinge about one thing.  Why is it so hard to get into a program for a stem cell transplant?  In Australia the medical fraternity turns its nose up at the procedure which I think is sad.  In this post I will give reasons why I believe this to be the case, and why I believe these reasons to be unfounded.  I will also give some tips on what we as patients can do to combat this.

First I'd like to tell you a story that my new Facebook friend told me.  The patient slated to be the next HSCT recipient after her (who also suffered from  MS) found that bureaucracy and procedure was effectively stone walling her from receiving the treatment.  The hospital that she was going to had ethical concerns and had to run it past their ethics committee. After a year and marked deterioration she finally got the nod.  Unfortunately, a week before she was due to start treatment she passed away.  So congratulations to the administrators and bureaucrats in the hospital concerned for killing the patient.  At least you did it ethically.  (For all the pen pushing paperwork loving hospital administrators out there that are slightly detached from the real world, that was sarcasm)  THe other really annoying thing about the wait and feet dragging is that the evidence shows that the earlier one get an HSCT, the more positive the outcome, which brings me on to my first point:-


  • With my current crop of doctors in Australia, they probably wouldn't even consider an HSCT until I was in a wheel chair and needed a ventilator.  Now, as I've said before, your body can repair damaged cells, but it cannot replace destroyed ones.  If I was completely wheel chair bound my nerves would probably be completely destroyed and unrecoverable.  My meagre improvement would inspire no confidence in the doctors to try again with other patients.  Hey, I'm willing to give it a go, and I don't want to wait I want it now while I still have a chance at a reasonable recovery.
  • It is perceived as dangerous.  Well, so is going skiing, eating raw fish, driving a car or smoking and we can do any of those things when ever we like.  It is not a full blown bone marrow transplant which requires far more chemo and radiation therapy and also normally a donor which adds much more danger to the process.  The most common used protocol for HSCT for autoimmune disease carries a mortality rate of <1%.  Besides, shouldn't that be my decision?  I get that I might die, even worse I could end up in a wheel chair in constant pain and needing too be fed through a tube for the rest of my life.  Still, I am willing to take the risk.
  • It's not embryonic stem cells.  Embryonic stem cell research is wrapped in controversy, and although I am a supporter, I fully understand why.  But that is a debate for another time.  HSCT has nothing to do with embryonics.  The process is autologous.  Meaning the donor and recipient are the same person, so unless we go back in time 37 odd years and harvest my stem cells when I was but a wee blastocyst, the ethical implications simply do not apply.  Adult stem cells are a completely different ball game.
  • The snake oil salesmen ruin it for everyone.  There are dozens of bogus clinics and individuals out there peddling the promise of stem cells for nothing more than their own financial gain.  Check out the following link.  CBS snake oil.  One of the problems with this piece is that it does not refer in any way shape or form to the bonafide doctors and hospitals, such as doctor Burt, that are genuinely using the technology to help people.  The technology is out there, but it needs to be used right.  The snake oil salesmen ruin it for everyone.
  • Alright, let me be a conspiracy theorist here for a second.  Big pharmaceuticals don't want this technology to come to light.  Why?  It is much more profitable to have sick people needing a bucket load of drugs everyday rather than being "cured" by a one time treatment and not needing any more drugs.  People with autoimmune diseases take a lot of expensive medications, many of which are ineffective.  But the pharmaceutical companies prefer this because it is much more profitable, and by identifying the snake oil salesmen, and discrediting them to discredit the whole stem cell movement.  The CBS piece I linked to above says that there is no known stem cell therapy for MS. This simply isn't true.  Check this article out.  To me, the CBS piece stinks of the pharmaceutical companies trying to discredit the stem cell movement through the back door.
So as patients how can we promote stem cell treatments?  First, challenge your doctor(s).  You may feel like you're banging your head against a brick wall, but if enough people are persistent enough the doctors will not be able to ignore it.  They will have to do their research and learn the truth about stem cells.

Second, do your research.  There are genuine bonafide institutions out there offering legitimate stem cell solutions.  I believe 100% that Dr Burt's studies at North Western is one of them.  However, you need to keep an open mind so you can see through the charlatans.  Try to keep an open mind.  When you are sick it is easy to cling to anyone that is offering hope.  The key is to weed out those focusing on false hope and those offering real hope.  Use your common sense.  Chances are if the clinic is situated on a shopping strip between a subway and a seven eleven, it is probably bogus.  Look for genuine studies published in reputable medical publications to corroborate the institution you are looking at.

I could ramble on about this subject for ages, so I'll think I will stop there.  Until next time, stay well:)

3 comments:

  1. Interesting comment I got via Facebook:-

    Here is my humble opinion: Doctors are trained in a particular specialty field. They are trained to prescribe treatment and medicines. This is all they know. Most are not continually seeking out new treatments and technologies. They know for this condition we do "THIS!" Also, doctors do not earn a living "CURING" people. They earn a living "TREATING" people. If you follow current medical protocol the patient will receive "TREATMENT" and will either continue and eventually get well on their own or will get treat until they seek something else to TRY TO GET WELL. IF you expose the average doctor to a new idea they will be resistant, A. because they are unfamiliar with it, B. because they don't do those treatments and will lose an income stream if you seek out this TREATMENT THEY DO NOT DO! If doctor "A" is treating someone every 3 weeks at a cost to someone of $17,000 and the patient decides to go to doctor "B" who may have a legitimate alternative treatment and possibly a "CURE", What happens to doctor "A's" income. Doctors also are "BENEFITED" by prescribing medications! I worked in the pharmaceuticals industry for 22 years(won't say more for now BUT......)!

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  2. So true ,for all but a brave few. We found the ones who where willing but the process,the system ,the experts,denied us till the very end. You speak of Sonja my beautiful wife who suffered this tragedy. Please for her sake and others keep up the discussion, never give up!!

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  3. Thanks for the comment. I can't even begin to imagine what you must have gone through. Personally, I do believe that with medical trials due process needs to be followed, but too often bureaucrats and administrators get caught up in needless banter and unrequired and irrelevant issues without seeing the real issue. People are dying, people are suffering and these bureaucrats are simply blind to that fact. Process should be done and then treatment should be a collaboration off doctor and patient with a final decision lying with the patient. The medical fraternity can be slow enough without having pointless bickering holding things up. In an earlier post I wrote about suing hospitals for inaction. Is this something you have thought about? I understand it might be something you are not interested in, but it would send a message.

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