Hi Lori, there are patients costing the insurances much money, e.g. those needing iron chelation, like pts. with thalassemia. They fought a big fight to get Exjade, an oral chelator which is costly - comparable to stem cell cures. But they had perhaps the pharma-enterprises behind them - and for stem cell cures? Where are no medicaments? Who will pay the necessary studies Phase III?
Really don`t know. Wished to find a method to stop the disease by other means, cheaper ones. (irrealistic for at least some of the ataxias.) Hopefully stem cell cures will become much cheaper one day.
Thanks for all your input on stem cell treatment! Maybe I look at life through rose-colored glasses, but I'd LOVE to see more clinical trials for ataxia, that may eventually lead to effective treatment! So many people would benefit! Akita, you brought up some great points! The United States medical facility I was talking with about stem cell treatment has not done any clinical trails for ataxia. A rep. from NAF (per my contact) phoned them and found this info. out. Also, the FDA (in the USA) doesn't approve this stem cell treatment. Also, long-term effects are questionable at best. In my heart, I believe stem cell treatment will one day be an effective treatment for ataxia, as well as other diseases. At this time for what is offered, it's extremely costly as well as a gamble. Of course, I would never advise someone else not to have stem cell treatment! It's a personal decision. As much as I'd like to be better, I've decided not to pursue it at this time. If it's too good to be true, it probably is...,ha! ;o)
Believe me I hear you on cost of medical. It's a joke what things cost. And why and how things have to be done. Thats why I get so so frustrated. I hope I didn't offended anyone?
No Lori, you certainly didn't offend me, as I get very FRUSTRATED too, and feel quite desperate for ANYTHING that will help my ataxia! So I hear you! Anyway, it's not all about me. I must remember that...ha! ;o)