Clinical Trials - $$ or free?

Greetings the group: I'd been under the impression that most if not all of clinical trial expenses were paid for not by the individuals being trialed but by some other entity. But recently I've found one that looks interesting but that comes with a $25K hit. Not inconsiderable, imo.

Is this normal?

Many thanks!

Most (not all) of Randy's expenses for his trial are paid for by the trial sponsor. We travel 2 hours each way, and are reimbursed as small amount of travel expenses. We have had issues with the hospital billing us and/or our insurance company for services that should be covered under the trial, and have spent not a small amount of time getting that sorted out. What trial is charging you $25,000? That seems odd.

Donna

2019Guy: Please give us a link to the trial so that we can evaluate

BTW, someone on this forum mentioned that for a certain PSMA trial one had to pay the cost of the isotope.

Thank you all for your valuable input. The trial in question is in Palm Desert, CA (next to Palm Springs, home of golf, gay men and gawdawful heat.... but I hear it's a very nice place nonetheless, and besides you can go see where Sinatra, Hope and several former presidents laid their heads 'n clubs) and is for laser focal ablation. I've spoken with the study director who is very nice, generous with her time and quite brilliant. Reading the paperwork leads one down to the bottom line mentioned, but that isn't of course on the link below.

https://clinicaltrials.gov/ct2/show/NCT02243033

I've participated in 2 clinical trials. In the first, all expenses were covered, and I even received a minor payment for travel.

In the second, all treatment that was considered part of standard care was not covered. What the medical center deemed to be standard care was far different than what I expected. To make a long story short, I got stuck with a $14,000 bill (I have a $7k deductible, and it was the end of one year and the beginning of a second year).

They didn't bill me until about a year after treatment began, due to some internal glitch, or I may have dropped out of the trial right away. I was not being billed so I assumed it was all covered. The trial coordinator also led me to believe that. The list of billed items was questionable - my local MO thought they were being unethical at best. I tried to negotiate with the hospital (major university medical center), but got nowhere. Ended up paying the bill.

My story is likely not typical, but next time I'll have a discussion before treatment begins to understand what the costs will be.

Thanks, Gary. As I read it though that trial is only for recurrent disease. Which I ain't got.... at least not yet.

Appreciate your thinking of me!

2019guy,

Have you checked with Medicare and your supplement company to see if this treatment and trial is reimbursed? It is FDA approved for many cancer situations. I have not looked into it, but it would be worth a try if you are interested in such focal treatment. It appears that the new twist in this trial is the trans-rectal approach as opposed to the trans-perineal approach. Have you checked to see if the trans-perineal approach is covered?What do your doctors say?

Of course the real starting point would be with the clinic that is conducting the trial. They should have the determination criteria for reimbursement figured out and should be able to advise. If they are trying to get 1,000 men to each pony up $25,000 out of pocket for an initial treatment of favorable intermediate or low risk PCa, I find to be a pipe dream. After all, there are many garden variety effective treatments already that are fully reimbursed for these situation.

I just read of a trial that covers all costs and pays $200 . It's just for gay and bisexual men (which is why I'm quoting 2019guy's previous post) You can read about it and start the entry process here: https://malecare.org/restore and on clinicaltrials.gov
https://clinicaltrials.gov/ct2/show/NCT03343093?term=malecare&rank=1 I'm considering joining this, as I suffer from severe urinary incontinence from my prostate cancer treatment,early on.

2019Guy said...
Thank you all for your valuable input. The trial in question is in Palm Desert, CA (next to Palm Springs, home of golf, gay men and gawdawful heat.... but I hear it's a very nice place nonetheless, and besides you can go see where Sinatra, Hope and several former presidents laid their heads 'n clubs) and is for laser focal ablation. I've spoken with the study director who is very nice, generous with her time and quite brilliant. Reading the paperwork leads one down to the bottom line mentioned, but that isn't of course on the link below.

https://clinicaltrials.gov/ct2/show/NCT02243033