Is it true that if you are approved for a clinical trial, you don't have to pay anything? Just wondering, my wife has cancer and I am wondering about this. Thanks!
Generally, clinical trials will pay the patient. The website ClinicalTrials.gov has some great information including an expansive list of FAQ's you may wish to check out: https://clinicaltrials.gov/ct2/about-studies/learn Two of the questions they recommend are "Who will pay for my participation?" and "Will I be reimbursed for other expenses?". I went through this some years ago with my father who has trigeminal neuralgia (aka the "suicide disease"). Unfortunately, I can only offer input up to this point because he opted against going through a clinical trial in the end.
My wife is in a clinical trial for a substance that may prevent certain diseases in people having major spine surgery. She is being paid $500. The frustrating thing is that she can never know if she has been given the placebo or the real thing.
My son was a participant in a clinical trial, and I worked as a research chef during one at a facility that did a lot of clinical trials (UNC-Chapel Hill) and in the cases I observed, subjects were paid - sometimes a lot. It is hard to get people, so ethically you have to be careful about payment/compensation. I'm doing one next week for NC State and am getting a $50 Gift card. My son, when he did it, was only 10 years old and was given $15. Currently, there is a sperm study here that pays you $600 for a commitment to make weekly donations for 2 months.
Thanks, a clinical trial may be the last resort if the second round of chemo doesn't work. I don't think there will be a lot options left!
I think clinical trials are the best risk when you've exhausted traditional treatment. While it's possible that you'll get a placebo (which they have to do of course) there is no guarantee, either way. We've talked about my good friend whose life was saved by a clinical trial drug for melanoma. He had stage 4 and was in bad shape but pulled through! I'll cross my fingers and say a prayer that her second round of chemo will work, then this will all be moot.
Thanks for the prayers Jenn. I may have made a contact about a clinical trial at UCLA. The researcher is getting Kim's records because she got a second opinion from there already. So he is going to contact the doctor and get back to me I guess. I am hoping something comes of it! But like you said, God willing this second round will work. I am keeping my fingers crossed.
In general clinical trials are in 4 phases. Depending on which phase you are in, you will be getting less and less money. I suggest you do not participate in Phase 1 & 2. They are for safety & dosage, and efficacy and side effects respectively. That is, will it kill you, and will it mutate you into a something horrifying. Phase 3 is for efficacy and monitoring the previously discovered and new adverse reactions, while phase 4 is again to clear up safety and efficacy. Depending on the specificity of the drug and complexity of the monitoring and administration of the medical procedure, the more you will and get. In some instance you can get three square meals (maybe laced with some special sprinkles), daily monitoring and such. In general, medical development companies will contract with doctors, hospitals or intermediaries to perform sequence of procedures, with specific medical equipment, in certain frequencies with matching population. It is often a pain to find the right population. You have a drug, but only works on males between the ages of 25 to 40, Asians who also have the very specific illness. Now go find them in a location where there is a licensed doctor that can administer the medication, has the right, often specialized equipment to monitor the patient... But! You can get free drugs. Or you are just getting the placebo because you are the control group. In general, about 6.4% of drugs make it through the clinical research phase study.
Thanks jhp! I am finding it very difficult to find a clinical trial because they are so restrictive. Damn!
Thanks Jenn! I made a contact at UCLA regarding a clinical trial. Kim qualifies for a certain clinical trial but there are no openings at the moment. We are praying that an opening comes up, hopefully early next year. Of course, as you say, hopefully the second round of chemo works and the clinical trial will be moot.
