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Dr. Weroha: participating in clinical trials DOES cost patients $$. Insurance doesn't pay for the trial drug, true, but it may have to pay for the administration of it - even if it's not SOC. And so patients end up paying the copay for the admin. of the drug. I paid over $110 every 3 weeks for the admin. of Avastin for a trial, plus $30 for each checkup required every 6 weeks, plus parking fees and gas etc., for 22 cycles! My mother participated in a trial at NIH and although they arranged her plane flights, they didn't provide a place to stay, when she had to be near Bethesda, MD for about 3 days every month. Hotels in the area start at $200/night!
Replies to "Dr. Weroha: participating in clinical trials DOES cost patients $$. Insurance doesn't pay for the trial..."
Please understand : I am the patient who got Avastin, along with and after Frontline treatment, which is not SOC. I am now in the SOLO2 trial. My mother participated in a trial of carboplatin & olaparib for treatment of recurrence, including measurement of the pharmacokinetics of their interaction, in an attempt to determine which to administer first. My experiences with my own clinical trials have been positive aside from unexpected costs. However, my experiences with my mother's clinical trial were vastly different and often quite negative. Part of the problem seemed to be that nobody cared for her as a person, but rather as patient # whatever. But please don't tell patients that clinical trials will be "at no additional cost"; it's just not true. <br />
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Thank you for the comment and opportunity clarify. As you point out, clinical trials do not provide all-expenses-paid care, only access to drugs that are not considered standard of care (SOC) and could otherwise cost thousands of dollars per month (an endeavor that is not otherwise feasible). I can’t speak for how trials are conducted across the country but I can say that we make a concerted effort to identify potential charges to our patients for things that aren’t considered SOC at every level. This includes, but is not limited to, cost of scans, blood draws, extra biopsies, and extra tests (such as ECGs or gene mutation testing). If we catch potential reimbursement issues for our patients, we look for ways to get those tests covered or make the patient aware of such charges ahead of time. That said, we could miss a non-reimbursed charge. This would also be dependent on the individual insurance plans and coverage will vary. We have no control over what insurance will cover.
I also share your frustration regarding co-pays and checkup fees every time I get my own bills as a patient, not physician.
Also, I wish there were a way to get free travel. This is a significant limitation for patients wanting to get treatment at Mayo (clinical trial or not). As you can imagine, most of our patients do not live in Rochester, MN, a city of only 100,000 residents with one-third comprised of clinic employees. We don’t reimburse air/ground transportation or lodging for patients who come here for standard therapies and likewise, it wouldn’t be feasible to do this for clinical trial participants either. Because we don’t pay patients to participate in a clinical trial, reimbursement for travel/lodging could be misinterpreted as payment. However, The Hope Lodge has a free place to stay for Mayo Clinic patients getting daily treatment or those participating in a trial. Since it is supported by the American Cancer Society, there is no conflict of interest.
On a final note, Avastin is now considered a standard therapy for ovarian cancer. As such, your mother literally got a standard therapy of the future, but she got it many years before other women who did not participate in the trial. I hope to offer the same “VIP” treatment for every patient who is interested in a trial.