Update 43 - HSCT IS THE cure for CIDP! - The facts (1)

Continuing on from Update 40 (sorry I got distracted)....

What is HSCT?

In simple terms HSCT is using you own cells (rather a lot of them!) to create new cells once the bad ones have been zapped!  There are three main phases to HSCT as far as the patient is concerned:

1. Preparation and collection of cells
2. Destruction of existing cells - via chemotherapy
3. Replacement and recovery - in isolation

A simple picture outlining the process:

For those who want the medical terms/details:

The actual collection of stem cells is known as Apheresis:

Who Treats CIDP with HSCT?

It seems apart from, four listed below no other clinics are performing any HSCT procedures for curing CIDP:

1. In the US (Northwestern) where Dr Burt is attempting to jump through the FDA hoops (and has been for 11 years!) at stage III.
2. In Israel (Tel-Aviv) CITI  - Prof Shirman Slavin (which seems more focused on cancer but does state auto-immune diseases)
3. In Canada (Ottawa) - where there have been a small number of HSCT treatments (59) for numerous autoimmune diseases (including 2 for CIDP) over the past 20 years, however they do not seem to advertise the fact
4. In Russia (Moscow) the National Pirogov Medical Surgical Center under Dr. Denis Fedorenko, this is where people I know have gone for treatment

(If there are any others, please let me know and I will amend this list - this is as much as I can find after fairly vigorous digging - during which I found an article stating someone had contracted CIDP as a result of having HSCT?)

Clinics do treat other conditions (e.g. MS, Lukemia & Cancer) with HSCT; there are some great stories about the recoveries and don't forget that the actual treatment has been known about for over 30 years.

The rest of the (known) World is holding it's collective breath and waiting for the trials in Northwestern to be approved - this is where the comments about Big Pharma not wanting a cure; cloud the issue and I have to agree that 11 years is a long time when other drugs/treatments are approved in 18 months.

It seems that no insurance company will pay for the HSCT treatment for CIDP (again waiting as above) however they do for other conditions.  What people are doing is raising/getting the money individually to get to Moscow to get treated - this is especially happening from the US.

Currently Pirogov can only handle 87 patients a year and newer/better facilities are being opened there as I write.  I don't know how this will impact the number of patients they can deal with.

The next few posts will contain details from existing patients and the facts from their experience to assist others in making decisions about the good, bad and ugly of HSCT for CIDP......

Update 42 - The Lying Toads!

THIS IS BOTH IMPORTANT AND POTENTIALLY WORRYING

It seems that there is general acknowledgement that vaccinations DO increase the risk of getting GBS!

There have been a number of articles related to this in journals throughout the world. Below are extracts from a couple of web sources confirming this:

November 2013: The Liberty Beacon

A new study published in the Journal of the American Medical Association (JAMA) admits that the vaccine widely administered for H1N1,  also known as “swine flu,” is linked to causing neurological damage in the form  of Guillain-Barre syndrome. The findings confirm several earlier studies in both  the U.S. and U.K. that also linked the H1N1 vaccine to severe neurological  damage.

Reuters Health reports that, for the new study, Philippe  De Wals of Laval University in Quebec City and his colleagues evaluated  rates of Guillain-Barre in Canadians during the six months following the initial  roll out of H1N1 in Quebec. Upon review, the team says it observed a definite  increase in Guillain-Barre cases associated with the vaccine.

Liberty Beacon Link

November 2010: Natural News

Despite extensive denial, The Medicines and Healthcare products Regulatory Agency (MHRA) has recently issued a new statement linking the swine flu vaccine with Guillain-Barre Syndrome. Guillain-Barre Syndrome is a deadly nerve disease that may lead to partial paralysis and death. The news comes after governmental claims were issued that the vaccine had passed all of the required tests and was completely safe for worldwide usage. Those who paid attention to the alternative news media, however, have been fully aware of the dangers that go along with receiving a swine flu vaccination.

Natural News Link

Additional references are contained within the articles. Please read and follow the links as it seeems to expose an underlying acknowledgement of increased risks, but not wanting to tell anyone.

There were a lot of stories spread after the 1976 outbreak and the potential increase in having the vaccination and this appears to be happening again! Also it is other vaccines that can have this effect.

As a person who is 100% certain my CIDP was as a direct result of inoculations, this needs to be bought to people's attentions so they can make an informed choice.

Update 41 - More on Pharmaceutical Companies

The more I read and learn about what the most profitable businesses in the world are and how this impacts ordinary people like me and you, who have a "chronic" illness, the more worried I get about motives!

The following two charts are from a you tube presentation on Medical companies:

This first one shows the sales in billions, from 2006, and the breakdown on how it is used.  With Marketing & Admin being twice the size of Research and Development!  Doesn't that just some it up? These numbers seem t have increased substantially over the past 8 years, but from what I can tell, the proportions have remained the same.

What is also very pertinent is the statement in white at the bottom of the chart that states profits from drug companies run at 20% whereas all companies together is 6.5%?  There are graphs around to confirm this is still the difference today -

So why should the pharmaceutical companies change what they are doing and actually "cure" anyone.  They are businesses and doing very nicely (out of us) thank you!

Here is even more proof that the pharmaceutical companies are more interested in keep things going than actually curing people:

Note:  NME - stands for New Molecular Entities - New approaches?

So out of the 93 new drugs approved 75 were "me too" drugs that are doing the same job as existing medications, that is 80%. 12 were new but had no improvement and only 6 were new/improvements on existing drugs. That is just over 6%!

Thus out of the $37 Billion for R&D only $2.2 Billion is delivering new drugs that may be game changers. If you analyse that against profits that is less than 5% and against marketing it is around 3%!!!!

The link to the you tube clip (and plenty of longer versions) is below:
Pharmaceutical Profits

I will get back to HSCT next time......

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.......