Wednesday, March 12, 2014

When Your Little Boy Needs A Life-Saving Experimental Drug, What Do You Do? Turn To Facebook.





Yesterday:

7-year-old Josh Hardy was dying.

Today, however, that headline has changed to:

7-year-old Josh Hardy might live.


With the help of thousands of friends - via facebook and change.org - Josh may be given a new lease on life through an experimental drug previously denied to him.

A Durham drug maker announced Tuesday evening that it will provide critical drugs for a dying 7-year-old boy after his family put pressure on the company to do so, largely through social media.

Supporters of a dying 7-year-old had planned to travel to Durham Thursday to convince drug maker Chimerix to release an experimental drug that could save the boy.

"Josh's Army", numbering in the tens of thousands, responded to his dilemma last week with angry tweets and notes on Facebook, and Chimerix's executives have gotten death threats. They screamed for "compassionate use."

CNN

Here's the way it [compassionate use] works: According to the Food and Drug Administration, if someone has a serious or immediately life-threatening disease and has tried and failed other available treatments, they can ask a drug company for an experimental drug, one that they're still studying and has not yet been approved by the FDA.

The All Or Nothing Dillemma

Chimerix, the producer of the experimental drug brincidofovir, at first denied the drug because it was not yet approved by the FDA for Josh's kind of virus. That's when people started screaming "compassionate use" at Chimerix. But the company said that if they gave it to Josh, they would have to give it to the hundreds of others waiting for it - at $50,000 each - a sum that would significantly halt the research on the drug. Chimerix is not a large company - it employs only about 50 people.

For the Chimerix/FDA solution, read HERE.

Let's hope that the combined efforts of Josh, his parents, Facebook, change.org, the FDA and, yes, Chimerix produce the results everyone is hoping for. 

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