Can Crowdsourcing Select Patients for Treatment?

Can Crowdsourcing Select Patients for Treatment?PhotoCredit:istock

In March 2014, a small Internet storm was created around #savejosh, a social media campaign that in four intense days got a pharmaceutical company to give a dying boy a potentially lifesaving drug. A bone marrow transplant to treat kidney cancer had left 7-year-old Josh Hardy vulnerable to an adenovirus that would give most people nothing worse than a common cold but in his case was about to be fatal.

His doctors wanted to try brincidofovir, an antiviral drug that was still being evaluated for approval by the Food and Drug Administration. Josh’s family had asked the manufacturer, a small company called Chimerix, to provide it to Josh at no cost under an FDA exception called “compassionate use.” The company refused twice, then yielded to the online outcry. Josh got the drug and survived — but, as explained by Helen Ouyang in the June issue of Harper’s magazine, it’s debatable whether this was the morally right decision.

The debate goes something like this:

It’s a no-brainer; the child will die unless he gets the drug, so give it to him.

But: Lots of people are sick; Josh shouldn’t get the drug just because he’s cute and plays well on the Internet.

But: There’s nothing wrong with using cuteness to appeal for help. After all, kids generally have to wait longer for new drugs than adults do.

But: Fewer kids than adults get fatal diseases, which makes randomized clinical trials – the gold standard for testing new drugs — really hard to do. Researchers just don’t have enough subjects. And every kid who gets an untested drug without being part of a trial is one fewer kid who can be part of a trial.

But: You could give Josh the drug and make him part of a special test, one with no control group. (Which is what happened.)

But: What if Josh got the drug and then died? Outside the rigors of a clinical trial, no one would know if it was because the drug failed or some other reason. This could really hurt chances of getting the drug to market — and since Chimerix was basically a one-product company, it could be destroyed.

But: The company’s bottom line should not be the standard here.

But: If the company went under, there would be no brincidofovir for anyone, and lots of people might die.

And so on.

Ouyang has laid out a very human and much more complex story than this, moving from Josh — who, while surviving, is far from well — to the Chimerix chief executive who was fired shortly after Josh got the drug, to the medical ethicists who strongly oppose using crowdsourcing to make life-or-death decisions.

In the end, there’s no question of what you would want if the child in question was yours. The bigger question is whom we put first as a society. As the ex-CEO puts it, “It’s the person right there versus the statistical future people. … But they’re there! What if your loved one is going to be sick in the future, and they’re not going to get the drug?”

(c) 2016, The Washington Post

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