How would one go about seeking therapies that are experimental for whatever their ailment may be. You hear about people undergoing these treatments at national hospitals as well as universities, but how do they find them? Is it referral by doctor or do they go online and apply or something? Anyone know how that works? I’ve always been curious.
Thanks!
I would suggest starting here -
My wife was diagnosed with a brain tumor about ten years ago and was referred to a nationally-recognized university hospital for continued treatment and management. About three months later, following bi-weekly assessments by her original doctor, we were approached about participating in an experimental program to test a new pharmaceutical treatment. At first, we were excited, especially since it was obvious that the tumor would otherwise be terminal. After we met with the researcher and his research assistants, we learned the following:
The program costs would NOT be covered by insurance, though the medication itself would be.
Weekly overnight hospital stays would be required. Again, these would NOT be covered by insurance.
Participating would require travel of over 50 miles several times each week.
We would have to stop her current chemotherapy.
While the pharmaceutical agent showed promise, the improvement could be characterized as “significantly extending the median survival” and NOT curing the condition.
There was only a 1/3 chance that she would actually receive the pharmaceutical agent. (They would have two control groups, one receiving a traditional chemo agent and one receiving a placebo. She would be assigned to one of the study groups on a random basis.)
We declined. It wasn’t even a hard decision. I know we had the opportunity to help others suffering from similar tumors, but neither of us felt it was worth the cost, either in time, quality of life, or money. Frankly, nothing they said to us made participation the least bit attractive. It was almost as if they didn’t really want us to participate.
She passed away about two years later, beating the median survival significantly. I never, ever regretted our decision.
My dad is a kidney transplant recipient. About a year after the surgery there was some calcification found in the kidney. Don’t remember what it was. The only treatment is a trial drug made by one company and administered via IV infusions. Dad’s transplant team is at Mayo and they knew about the trial. Got him enrolled and set up with the only couple clinics in his area who can handle getting the drug delivered monthly and administer the infusion. Has been a successful treatment for a couple years now. Will need the infusions monthly for as long as the kidney holds out.
Zonexandscout… I’m so sorry for your loss. I can’t imagine what that must’ve been in terms of pain for your and your wife.
SeaDragonTattoo… I hope hes going strong!
Dobbs: Thanks! I was looking for something like that, but google-fu has failed me/or i’m just lazy.
My friend who had his spine screwed up/partial paralysis from a car accident, though surgery has helped him a lot and he can walk and all, made me curious about other options available to those with severe injury and diseases. Thanks for the replies!