Monday, 5 May 2014

Update 40 - HSCT IS the cure for CIDP! - Why it is NOT a good idea?

I have just amended my previous post heading, due to a number of factors.  One more reading of really interesting articles. Two that 2 people I am conversing with are going through HSCT as I write.

The details below (and following blog posts) are a precis of their adventures and the facts (as I see them from the UK) about HSCT.

To lay the ground for my future posts and comments below are some interesting facts/statements that come through from the other posts (to set the scene):


  1. More and more people seem to be getting GBS/CIDP and there is still "no cure!"
  2. If you take the number of people who contract GBS as 1:100,000 and CIPD as 1:,1,000,000 then with over 7 billion people on the planet this equates to 70,000 cases of GBS and 7,000 cases of CIDP per year
  3. The large pharmaceutical companies are making a fortune out of these types of illness, so they are not interested in finding cures as their revenue stream would die out (proof below).
  4. In the US it costs about $200,000 per year to "treat" CIDP with IVIG. with an estimated 320 million people in the US if 50% of the people diagnosed with CIDP have IVIG treatment and there are 320 new cases per year the money to be made is growing at $32 million per anum.
  5. If you worked this out worldwide (again just for CIDP) this is $7 billion per annum - how about that for a bottom line to a company that has to do no further work/research!
  6. Assuming the current number of CIDP patients currently resides at around 400,000 (this is low because I am assuming known about and therefore being treated). Then the existing return is $80 billion per annum
  7. If you added in the people with GBS who get "cured" after a treatment of IVIG - assuming an average of 1 months worth of treatment this would add another $6 billion to the total.
  8. So pharmaceutical companies are getting $93 billion out of this suite of illnesses in 2014 and it is continually growing at around 9%!

Now you know why the pharmaceutical companies don't want a cure! And are willing to spend a lot of money making sure one is not found! 

What makes the above worse is that I am being conservative in my estimates so the number is far higher.  Yes I do know the there are other treatments (e.g. steriods) - which are cheaper, but have far more serious side effects - this is why I've only used 50%. I am also aware there are costs in creating the IVIG solution.

Even if their costs were half the total above, they still make $46.5 billion in 2014 out of GBS/CIDP.

And this is just from one set of illneses where HSCT can help

HSCT has been known about for over 35 years, yet it is still "in trial!/not proven!" why not.......

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