Friday, 30 May 2014

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......

No comments:

Post a Comment