[soccertese]

http://www.theithacajournal.com/arti...yssey=nav|head

[lurkingforacure]

Does anyone still wonder why there are not better treatments in light of the other doc's comment to the effect that 35% of the group improving is not enough, you need more of the group improved before this could be a "potentially viable" treatment? Please.

35% if way more than many drugs on the market help today! Stem cells are not a drug so no pharma is going to want to fund their development and in fact, well, let's not even go there. It's too ugly.

Until researchers accept that PD can have multiple causes and the "one pill fits all" approach will NEVER work for us, things will stay the same. Thank heavens the folks in Australia are thinking outside of the box with their figure-8 magnetic brain device. Maybe these guys in Kentucky will ignore the nay-sayers and keep on plugging with this promising work.

[soccertese]

lurking,
pharma has done 6? clinical trials thru phase 2 involving cell or gene implants,5 have failed.
neurologix, titan's spheramine retinal cells, gdnf, are 3 i can remember.
off the top of my head, i can think of 2 clinical trials still going on, ceregene and oxford bioscience?.
everyone remember that autologous stem cell implant, the researcher was at CEDAR SINAI in L.A., canadian dr., implanted on 1 side of dennis turner, great results, took the research private and it went nowhere, i heard turner deteriorated over time.

i think MJFF probably is funding non-drug research.

if there wasn't money to be made in non_drug treaments, why would DBS have been developed?

just playing devil's advocate.

i was in a phase 3 trial - it was awhile ago, for sumanirole, a dopamine agonist. the trial was cancelled but the interesting thing that where i live there was a population of over a million within easy distance of the trial site and only 3 patients volunteered!! the trial went to open label, the first part compared placebo vs requip vs sumanirole, so i knew i was on the drug and and i was allowed to up my dosage to an effective dose. since my symptoms were very mild i can't say it had a terrific affect but the neuro told me one patient with advance pd was tremendously helped. as someone who can't tolerate even .25mg mirapex, i could tolerate sumanirole. anyway, 6 months into the trial it was cancelled, pfizer bought pharmacia and they cancelled it.

getting to the point, i see a major part of the problem is getting enough volunteers and the treatment has to be better than DBS. if drug companies/govts decided tomorrow to invest billions in pd research, would they be able to enlist enough volunteers? enough neurosurgeons?
i think it took neurologix almost 2 years to find i think 50-60 volunteers over multiple sites for their phase2 trial and it failed, i think they recently filed for bankruptcy.

sad to think that even within this imperfect system, 10 more patients might have produced a statistically significant improvement. it would be sad if their research just died with the company.

i know big pharma is working on alzheimers but likely much easier to find volunteers since fatal.

not arguing, just commenting.

I personally don't like all these conspiracy theories. A company that can bring a disease modifying med for PD will benefit hugely. Why would they cancel such a med ? Doesn't make any sense.

I think it is normal that the nose cell therapy will not come into market as long as they only show to help 35 % of rats. This is stem cell therapy. I guess you have to drill in the skull and inject these cells with a needle. This is a really dangerous therapy and if it doesn't help 65 % of people (probably even more as the 35 % is on rats) than I don't think this therapy will ever be a succes. Can you imagine going to do brain surgery if you have 65 % chance of not succeeding ? I probably wouldn't bother.

[soccertese]

diego,
i did not intend to give the impression pfizer cancelled a potentially successful drug trial.
i never got an answer from the trial coordinator as to why they cancelled it nor researched the topic.
i only brought it up as a first hand experience on the difficulty of recruiting pd volunteers..

Originally Posted by soccertese

diego,
i did not intend to give the impression pfizer cancelled a potentially successful drug trial.
i never got an answer from the trial coordinator as to why they cancelled it nor researched the topic.
i only brought it up as a first hand experience on the difficulty of recruiting pd volunteers..

I wasn't replying to you actually .

[lurkingforacure]

I guess I am focusing on autologous stem cells (your own), where no money can be made from vectors, equipment, delivery means, growth factors, etc., because there aren't any. My understanding of this is that they take your cells, multiply and/or filter them, and put them back in your body. Placing them in your nose does not sound like especially complicated surgery, if it even qualifies as "surgery" at all. Most of the companies mentioned above that are doing this type of work involve growth factors (ceregene, for example) or a proprietary formula (neurologix), or equipment (DBS) which could generate substantial money if successful.

Like most, I understand the need for companies to be able to succeed. I just don't see them lining up for autologous stem cell research, much like the research into food-based treatments (curcumin is one) is minute compared to how much money, time, and brainpower is poured into drug-based treatments...or worse, me-too drugs.

Maybe autologous stem cells don't or won't work on the majority of PWP, or a big enough majority to justify companies putting time and money into the research. But a new treatment that might help some is better than nothing. And I don't think 35% is too tiny a number, that could represent a LOT of PWP who might be helped by this.

[soccertese]

levesque did the single autologous stem cell implant but i think they will charge tens of thousands to recoup their development costs of differentiating the stem cells. i absolutely agree it's not the best system, we need collaboration, not competition. scientists working on the manhatten project weren;t worried about stock options.

[lurkingforacure]

Originally Posted by soccertese

levesque did the single autologous stem cell implant but i think they will charge tens of thousands to recoup their development costs of differentiating the stem cells. i absolutely agree it's not the best system, we need collaboration, not competition. scientists working on the manhatten project weren;t worried about stock options.

Soccertease, I can't believe I'm writing this, but only "tens of thousands" actually sounds good to me compared to the $100K+ that DBS costs and it has marginal benefits (otherwise, everyone would be lining up for it and that is not the case). So if we could get this and "only" pay tens of thousands, we would actually save money over what we pay every year for meds and doc visits. Not to mention vast improvement in QOL, I think Turner said this set the clock back about ten years for him, that's huge.

[Conductor71]

I am confused! There has been speculation that the olfactory bulb may be the point of origin for PD given loss of smell and presence of Lewy Bodes. How they know they are not using infected cells?