This Is MS Multiple Sclerosis Knowledge & Support Community

Czapski, if this is so, you made my day!

Just received this from Carmel Turner, the first Australian to eundergo HSCT, MS's best kept secret. Worth watching.

Hi there,

I'm hoping that someone can help clear this up for me, perhaps George, if you don't mind...

What exactly is the success rate of the HSCT cure? Am I right in saying that it's 100% in rrms and 80% in s/ppms It seems like that's what George is saying on his blog?

I'm confused! Is the disease not halted in 100% of cases, and if not, why not?

Cheers!

Vikingquest wrote:Hi there,

I'm hoping that someone can help clear this up for me, perhaps George, if you don't mind...

What exactly is the success rate of the HSCT cure? Am I right in saying that it's 100% in rrms and 80% in s/ppms It seems like that's what George is saying on his blog?

I'm confused! Is the disease not halted in 100% of cases, and if not, why not?

Cheers!

Here are the basic probability statistics that is supported by the finite study population data. . . .

Ealy RRMS-treated patients

Essentially 100% stopping of the disease process & progression.

81% of the same group experiences "significant" improvement (>1.0 point EDSS) reduction of existing symptomatic EDSS. Many HSCT-treated patients in this group report their symptoms completey dissappearing, 100%.

During the RRMS phase of the disease I would expect very good beneficial results following HSCT regardless of the EDSS symptomatic disability at the time of treatment.

Late SPMS (non ambulatory) treated patients

78% stopping of disease progression

EDSS improvement not quantified

Curative efficacy is not population-quantified in other patient EDSS stratum. So for the SPMS patients with an ambulatory status, the cure rate (stopping of diasease progression) is not well established, but certainly I would expect it to be greater than 78%

Just my own personal expeience data point (that does not necessarily translate to any other specific individual) that appears to be consistent and fairly representative of other (ambulatory) SPMS patients so far. . . . . I was RRMS for 11 years and then went SPMS for 4 years (EDSS 3.5) before my HSCT procedure. As of today (18 months post-transplantation) my disease is 100% stopped and my pre-existing symptomatic deficit (as measured by EDSS) has improved (reversed) 40% (currently at EDSS 2.0). So clearly it is possible that SPMS cases (especially those that are ambulatory) can experience good benefit from HSCT.

Late PPMS (non ambulatory) treated patients

66% stopping of disease progression

EDSS improvement likely poor, if at all

So for the PPMS patients with an ambulatory status, the cure rate (stopping of diasease progression) is not well established, but certainly I would expect it to be greater than 66%.

Also, for ambulatory PPMS cases, EDSS improvement is possible, but not gauranteed. This is a very un-studied and unknown area. I would expect this number of people in this poulation to show improvement somewhere in the chasm-like range of 1% - 65%. Perhaps someday as more ambulatory PPMS patients are treated then this can be better quantified. For now, the treated population is so small its impossible to predict with any confidence.

But no matter what, HSCT has a far better chance of having a positve beneficial effect for MS patients compared to any (every) other therapy anywhere in the world. So far, no other curative therapy can even come close in accomplishing what HSCT has already (scientifically and repeatably) demonstrated.

Regarding all of the above information, you can read the overview here. . . . .

http://themscure.blogspot.com/2010/06/s ... rence.html

And as to your last question. . . . "I'm confused! Is the disease not halted in 100% of cases, and if not, why not?"

This is an excellent question! It's true that less than 100% of MS patients will experience a halting of MS disease activity via HSCT (although the vast majority will). Like everything in nature, there are no certainties, just probabilities. The reason it does not work in 100% of all MS cases is still unknown. As the research and clinical treatment continues, at some point in the future I imagine that this issue will be better understood.

Asher, how is it going? I am very interested in your progress.

Sure Shucks, August 8 I will post my 2 months post transplantation report. Asher

Asher wrote:Sure Shucks, August 8 I will post my 2 months post transplantation report. Asher

Just FYI. . . you can always go here to Asher's page to get the most recent update (with the next posting +2 months as Asher mentions). . . .

http://themscure.blogspot.com/2011/06/p ... cohen.html

Does anyone know of an approximate cost for the procedure??
Does insurance cover it?
Is it only done in Heidelberg and Australia?

I heard it is being done in Israel too...cost there??

The cost of transplant at CTCI Center is 75,000 usd plus consultation (1,200) and blood tests if applicable (500)

burg wrote:Does anyone know of an approximate cost for the procedure??
Does insurance cover it?
Is it only done in Heidelberg and Australia?

Overall subject of treatment locations here. . .

http://themscure.blogspot.com/2011/06/g ... -have.html

Soon I will be adding information on a couple more potential treatment locations in Australia (only for Australians) and India.

Unfortunately Insurance is unlikely to cover the cost of the treatment. "Sometimes" insurance will cover it if HSCT for MS is performed in a clinical trial, but only sometimes.

I did the CCSVI 3 times...once in Bulgaria, and twice in Albany..
I'm surprised that all of the CCSVI sites around the world are not climbing aboard..

burg wrote:I did the CCSVI 3 times...once in Bulgaria, and twice in Albany..
I'm surprised that all of the CCSVI sites around the world are not climbing aboard..

Good thought, Burg. I can only guess that the places doing CCSVI treatment can make a lot more money from CCSVI because it can be done as a single procedure as an outpatient treatment and get patients through like an assembly line. HSCT requires several weeks hospitalization of the patient and a lot of focussed medical attention. I bet in addition to requiring a lot of specialized equipment, procedures & various doctor disciplines, profit margins are not nearly as high (and the patient volume is lower) for HSCT. Also, HSCT only needs to be done once, and not repeated so it's not so attractive to private business seeking a high profit margin.

Like when the prolific bank robber Willie Sutton was asked by reporter Mitch Ohnstad why he robs banks. His answer. . . . "Because that's where the money is."

burg wrote:I did the CCSVI 3 times...once in Bulgaria, and twice in Albany..
I'm surprised that all of the CCSVI sites around the world are not climbing aboard..

I don't think this would ever happen because liberation treatment and HSCT seem to be contradictory procedures. If you believe in CCSVI why would you believe in the auto-immune theory?

CVfactor wrote:

burg wrote:I did the CCSVI 3 times...once in Bulgaria, and twice in Albany..
I'm surprised that all of the CCSVI sites around the world are not climbing aboard..

I don't think this would ever happen because liberation treatment and HSCT seem to be contradictory procedures. If you believe in CCSVI why would you believe in the auto-immune theory?

And vice versa.

BTW. . . the autoimmune model of MS is no longer just theory to most researchers. . . .

As for the underlying MS disease process / progression, the overwhelmingly-established science and scientifically-valid data clearly indicates that the mechanistic action of the underlying MS disease pathology is that of self-intolerant autoimmunity. Most doctors / researchers now consider this as fact, not just conjecture (as explained by these research scientists at Wayne State University):

Researchers publish results settling multiple sclerosis debate

http://www.physorg.com/news/2011-02-pub ... ebate.html

"This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles"

"Targeting such disease-causing T-cells in MS is definitely a valid therapeutic approach that should be pursued," Tse added.

And indeed, this is exactly what HSCT does.