Some companies charge patients to be in clinical trials

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Clinical trials often wind up being the source of life-saving treatments for many patients thought to be beyond hope. But now there may be a new twist: Patients being charged for their enrollment.

Kaiser Health News has reported that some clinical trials include charges for “associated costs.”

In one instance, Linda Smith was told by StemGenex, a San Diego-area firm conducting a clinical trial on stem cell therapy for those losing knee cartilage, that she would be charged $14,000 to enroll. She had located the trial through the National Institutes of Health website clinicaltrials.gov. The website apparently does not disclose if there are any charges related with clinical trials.

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“I went back to the website and looked at the study again. It doesn’t say that patients are the funding source,” Smith told Kaiser Health News. “I was disappointed in the NIH. I thought, ‘Why are you letting this occur?'”

The disclosure that some clinical trials could charge patients thousands of dollars occurs as more individuals shoulder higher out-of-pocket costs and hospital and drug costs in a country that already has the highest cost of healthcare delivery in the world.

StemGenex told Kaiser Health News that it does not charge to participate in the study, but only for the treatment rendered as part of the study.

The distinction did not impress medical ethicists.

“It’s unethical that these companies are saying, ‘Sure, come take part in our study and by the way, we’re going to charge you for the privilege’,” Alison Bateman-House, a postdoctoral fellow in medical ethics at the New York University School of Medicine, told Kaiser Health News. “If you’re going to be charging patients for the opportunity to be involved in the study, they should not be allowed to be listed on ClinicalTrials.gov, or at least the cost should be listed on the site.”

- read the Kaiser Health News article

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