Probably a must read if you’re considering a trial in USA.
“Patients eager to contribute to research may not be fully aware of the hidden costs of trial participation.
People who participate in clinical trials may be required to make more frequent visits to the doctor and/or need to travel farther for those visits, and some of the costs of participating in a trial may not be covered by health insurance.
Even when insurance companies and trial sponsors help to cover the costs of participating in clinical trials, patients – who dedicate substantial amounts of time and take significant risks to advance science – may find themselves out of luck once the trial ends.
ASH Clinical News recently spoke with several clinical trial and ethics experts about the hidden costs of clinical trial participation, the prices of post-trial access to investigational drugs, and some of the steps being taken to ease this burden.”
This is a good article. For me, one of the "hidden costs" was that I had to have a CT scan every 74 days. Apparently, the FDA likes to see CT scan data when approving drugs.
Yeah, this is insane. I wish every trial could be run like this:
"At the NIH Clinical Center, a hospital devoted entirely to clinical research, the costs of participating in a clinical trial are completely covered, Dr. Millum explained. A patient’s medical insurance is not billed. There are no co-pays or co-insurance charges."
I have not had to pay a single dime on the Captivate trial (Ibrutinib +Venetoclax). The trial pays for all tests, scans etc and doctors’ fees for protocol visits. They also pay gas + mileage ( yes, both, but not a very high mileage rate), hotel, and my meals, if you are over a certain distance (which I am). My husbands meals are not paid. They would pay airfare if necessary.
I'm doing the the Natural History Study of CLL at NIH. They pay all or part of the cost of the plane ticket, depending on normal cost, and hotel room for me, but not for my wife. Even so, we look forward to the trip.
The benefit to me is another set of educated eyes to look at lab tests, and a trip back to the Washington, D.C. area (Bethesda, Maryland) where I lived for awhile way back when. I used to fix and maintain the mainframe computer systems at NIH back in the 1980s.
Costs of participating in a NIH trial are not completely covered. Yes, all medical expenses, treatment, tests, meds are covered. But unless you live locally, travel costs are considerable. My airfare is paid up to government limit and receive $80 for hotel. But area hotels with free shuttle to hospital are rarely less than $300. Add in airport transportation at both ends, travel expenses, not counting meals, average $450. each clinic visit. That $80 does not go far. Over $9000 out of pocket to date.
Several trial participants have been surprised to discover that things considered to be standard of care, like scans and labs are billed to insurance or the patient if they don't have insurance. Be sure to read the fine print in your contract very carefully, and to double check with both the trial coordinators and your insurance company about all costs before signing on the dotted line!
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