Quality of Life Petition

I linked to this petition a few months ago, and I'm going to link again and encourage you all to sign it, and share it with others. It's important for empowering cancer patients like us.

The petition was created by the people at Lymphomation.org, a site that I link to a lot. It's a citizen's petition to the FDA, which is in charge of clinical trials. The petition is called "Assessing Changes to the Patient's Quality of Life (QoL) is Integral to Interpreting the Efficacy of Study Treatments for Cancer."  

The idea behind the petition is to encourage the FDA to require that Quality of Life becomes an official part of determining whether or not a treatment should be approved, and more importantly, to have a record for doctors and patients of how a treatment affects Q of L.

Right now, when a treatment is approved, the FDA basically looks at two things: first, is the treatment effective? What percentage of patients in the trial were cured, or had a good progression-free-survival, or reached a certain overall survival? (The researchers figure out before the trial how they will decide what "effective" means, and how it compares with treatments that are already available.) Second, what is the toxicity? What are the side effects? Are these worse than the side effects for treatments that are already available?

Both of those things can be measured by doctors/researchers.

But Quality of Life cannot. Q of L includes things like fatigue, nausea, anxiety, and pain (as the petition points out). They affect they way you live your life day-to-day. Are you in so much pain, or so anxious, that you can't enjoy the things you used to do, like cooking or gardening or playing with your grandkids? That's what Quality if Life is all about. It isn't included in the toxicity or side effects that researchers can measure -- it can only be reported by the patient.


So by signing the petition, you'll help encourage the FDA to give a voice to patients.

I don't need to explain why that matters.

So please consider signing (and sharing). You're only helping yourself. Thanks.