LETTER- Money compromises lives
Published March 17, 2005, in issue 0411 of the Hook
[February 24 cover story: "She's dying: His drug could save her"]
I want to comment on your February 24, 2005, article "She's Dying and His Drug could help her." My wife was diagnosed with ALS in November 2003. She had probably had the disease several months before that.
She was misdiagnosed with allergies, sinus infection– even had surgery to have her uvula removed. We have tried everything to help her. She is on a vitamin regimen. She has water therapy. We have tried acupuncture. Herbs. Organic diets.
We traveled to China for a new unproven treatment called OFC surgery. She had two holes drilled into her skull while she was awake and 1.5 million OFC cells injected into her brain. There is nothing an ALS patient will not try. What in God's name do they have to lose? Then I read your article and see something that just might help her– and has helped others it seems– and I get so upset.
It is maddening that a group of people whom I don't know have control over a possible treatment and will not even consider letting people try it. Not only that, they take it away from the ones it has helped. How do they sleep at night knowing they are allowing people to die while they work out their little agenda of crossing all the T's and dotting all the I's? This is not right.
Any ALS patient and their family would be willing to sign any form removing all responsibility from the University, the staff, the doctor, and anyone else who is so scared that they may be sued. Having ALS and having a spouse who has ALS is a living hell!
I think the real reason that this medication was withdrawn was solely monetary and liability concerns.