7-year-old Josh Hardy is likely to die soon.
The little boy, who has been battling cancer since he was 9 months old, is in an intensive care unit in Memphis, T.N., where his heart and kidneys are rapidly failing him. He vomits blood several times an hour as his family gathers around him, bracing themselves for the worst but hoping for a miracle (via CNN).
A miracle, it turns out, might not too far away. In fact, it could come in the form a yet-t0-be-released drug called brincidofovir, stowed away in a cabinet in Durham, N.H.
It’s a drug that could save his life.
But it won’t, because the drug companies won’t give it to him. Helping Josh, they say, means hurting others. With every “compassionate use” arrangement a drug company approves, the longer it takes to get a drug out to the masses.
This is how “compassionate use” works: 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.
Sometimes the drug companies say yes. According to CNN, 974 compassionate use arrangements in fiscal year 2013 were approved.
But sometimes they say no, and they have said no to Josh Hardy. Providing a Hardy’s parents are begging the drug companies to change their minds.
When asked how he will feel when Josh dies, Kenneth Moch, the president of the company that makes the drug, says he’ll feel horrible and heartbroken.
But he’s still not going to change his mind.
Here’s why drug companies sometimes say “no” to cases like Josh Hardy’s: The company would have to dish out $US50,000 per compassionate-use patient, since insurance doesn’t usually pay for experimental drugs. It would divert manpower in the drug company, since they’d have to handle the requests and then get the patient’s records and follow up with them, as required by the FDA.
“Our son will die without this drug,” said Todd Hardy, Josh’s father. “We’re begging them to give it to us.”
The Hardy’s have taken to Facebook and the media to get their son’s story out. They have asked people to tweet to drug company @chimerix, telling them to “open their hearts.”
Members of “Josh’s Army” have been tweeting endlessly, hoping that their cries will heed a response:
— Jamieson Becker (@JamiesonBecker) March 11, 2014
Others have tweeted out email addresses of the company’s board members. CNN reports Chimerix executives say they have received physical threats.
Moch says he has read these tweets and said he is heartbroken, but the issue is complex and unsuitable for a 144-long character debate.
You can visit the “Save Josh” Facebook page here.
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