Medical decisions in the social-media age

Interesting piece about "Save Such-and-Such" petitions flooding the Internet and how they are shaping decisions about who gets what potentially life-saving medical treatment:

http://www.washingtonpost.com/national/health-science/crowdsourcing-medical-decisions-ethicists-worry-josh-hardy-case-may-set-bad-precedent/2014/03/23/f8591446-ab81-11e3-adbc-888c8010c799_story.html

Basically, the petitions start by way of the FDA's "compassionate use" rule, which allows unapproved drugs to be used to treat some cases.

While I understand both arguments, I honestly can't take either side. A true quandary.

 

From further down in the story..

If it can lead to the FDA giving quicker green lights for limited clinical trials, then the social media campaigns can be good.

On the flip side, if it leads to some patients getting certain treatments over others, then its a bad thing.

 

The FDA already does expedite clinical trials if the drugs are to treat life-threatening diseases.

The problem is, it takes 6-7 years to even get to that point. And, after that, it takes another 5-6 years to get a cohort size large enough for results to be meaningful.

I can't imagine they'd do something like this without a stack of informed-consent and release forms. Although, they did something similar with a vaccine a few years ago that wasn't approved for pediatric patients in the U.S. But, A) the trial was ongoing, and B) it was licensed and widely available in Asia.