Discussion Forums > Announcements
Meeting on gene therapy November 14 from 11:30 a.m. to 1:30 p.m
Andy Battaglia:
Suffice it to say, the trial is not about to start thanks to the greed. While everyone got excited about the weak results of another trial, I was apparently one of the few who realized what this would mean to funding for other more promising trials. SK is in it for the money and not for the patients. The wonders of a for profit health care system never cease (sarcasm). I wish I could say more, but that is it for now.
Sharmin:
OMG Andy, what does this mean? This is devastating. Does this just mean a delay or does it put a stop to the trials indefinitely?
Sharmin
Nangial:
hey guys
have u guys cheked the stem cell programe being run by the childrenz hospital in boston?....ive got alot of doctors telling me to give it 6 months and then go for it...can any budy guide me...or say smthin about it if they know more?
Andy Battaglia:
I believe what they're doing at Boston is stem cell transplant, very similar to bone marrow transplants, so a matching donor is required. If a donor can be found, it can offer a cure.
As far as gene therapy, I can't see how this would not slow development down. Unfortunately, there is money to be made, so forces have come into play that previously were not a concern. I have long promoted Dr Sadelain as the one person most likely to succeed with the gene therapy process and apparently others now realize this and would prefer he worked for them. I do not know how this will work out but for patients I see longer delays and higher costs once this is perfected.
I wish more people working on behalf of thals actually had thals first in their minds before money, but that is me being naive yet again. Selflessness is taught by many religions and belief systems but you will find very few people engaged in selfless acts. For myself, I have to find a way to stay committed in spite of organizations and researchers who I do not feel place patients first. This situation has left me very discouraged. When it comes to a cure, should not we allow the best to proceed or should it come down to which group does a better job raising money? We could say this same thing about the current dormant status of starch desferal. It's not right. Patients should always come first but as long as the system is so profit oriented, expect little change.
Nangial:
yes its partly what they do.......buh for people like me..who dun have a match they coreect the mutated gene ..its more like a combination of stem cel and gene therapy
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