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Bettina Ryll: How did we end up in a situation where we put clinical trials as a method before patients’ lives?
Feb 24, 2024, 17:10

Bettina Ryll: How did we end up in a situation where we put clinical trials as a method before patients’ lives?

Bettina Ryll, Founder of MPN Europe, shared on LinkedIn:

“Working on my talk for the German DKK tomorrow- why do cancer patients participate in clinical trials?

Considering that it was the horrendous clinical trials that we had in Melanoma that got me into patient advocacy in the first place and looking back at some of our first work in MPN Europe, I still find Lori’s story chilling and it makes me angry till the current day.

How did we end up in a situation where we put clinical trials as a method before patients’ lives?!! Where we are so concerned with ‘gold standards’ that we use it to justify to *knowingly* expose patients to inferior treatments? Where we threaten patients when they make use of their RIGHT to leave any trial whenever they think it’s no use to them- don’t believe me? Listen to Lori.

And thanks, folks, for sparing me the lecturing on new not always better, gotten my fair share of THAT in the last decade- we knew DTIC wasn’t working in Melanoma and anyone with eyes could see the tumours disappear with BRAFis- and just because new isn’t always better doesn’t mean that one can just kill some more patients just to prove it is REALLY better. Kaplan Meier curves should only be showing small differences- because if they are large, that was a thoroughly unethical trial.”

Proceed to the video attached to the post.
Source: Bettina Ryll/LinkedIn