I was reading the Washington Post online this morning and there’s an article in the Health section regarding a little boy by the name of Josh Hardy. If you’re not familiar with the story he’s 7 years old and currently fighting a treatable infection after having a bone marrow transplant.
His parents asked the drug company, Chimerix, to provide him with a potentially life saving medication. The drug is still in the experimental phase and according to the drug company hasn’t undergone the necessary tests to be safe for children.
I don’t have children and truthfully don’t have a desire to have any. However, I am a big supprter of childrens’ rights and making sure they are taken care of properly and not given the short end of the stick and when I first heard this story I thought Josh was getting the short end of the stick. Someone told me a long time ago, “Nothing beats a failure but a try” and that’s the way I live my life or at least try to. I get that the drug company discontinued it’s Compassionate Use program and I understand that it hasn’t been tested for use in children yet, but does that mean that a parent should just give up the fight in trying to save their child’s life?
Hell no! It means they should continue fight and fight harder. You know that old saying, “The squeaky wheel gets the oil?” I firmly believe you squeak, you squeal, you scream, jump up and down, whatever it takes in order to save your child.
I also believe the drug company had the right to continue to deny him Comapssionate Use, since they discontinued the program. You may be wondering why I say this since I said I thought Josh was getting the short end of the stick. Here’s the reason very simply stated. They discontinued the program and said no to others asking for the same drug. The drug company didn’t have to kowtow to the court of public opinion. Even the FDA got involved to get Josh this drug. Chimerix could have held firm to their policy and stated that they’ve said no to others under this policy and will continue to say no. They could have let 7 year old Josh Hardy die, but they didn’t and for that I’m glad they’re trying.
But is this article correct in saying that it raises ethical issues? Is one boys life worth more than someone else’s? Has the power of social media become to powerful? Are people/companies being bullied into doing things they wouldn’t normally do because of social media?
20,000 people went to bat for Josh via Twitter, Facebook e-mail, and phone calls to Chimerix, but for those 80 people that Chimerix said no to there weren’t 20,000 people. Just a few loved ones — family, friends, coworkers, classmates, neighbors. Is it right that this squeaky wheel got the oil while countless others who perhaps couldn’t fight or were tired of fighting were turned away and not thought of again by the drug company, but are constantly thought of by their loved ones and saying, “if only they had tried. . .”
Should compassionate use be discontinued across the board? And how does one determine whether to implement compassionate use for you, me, or the Josh’s of the world? Would you take to social media or the media to try and save your loved one’s life?
Since the first round of treatment Josh is doing better. He’s not out of the woods yet.
20/20 Hines Sight 
Compassionate Use has always been a dilemma – especially since it essentially places a panel of corporate officers in the position of choosing who gets a chance to live. That’s why many companies have chosen to discontinue these programs all together- really it’s a no-win situation for the company; they know some will be denied, and others will be publicly gifted then die in the fruitless attempt to save them. I got to live, because Ortho-McNeil (a pharm-development company) allowed a minor onto an early a drug trial and the FDA approved it. But that was a huge gamble for everyone involved- the drug could have killed me, no one knew what it would do to such a small body. Now, with the whole world watching with our 24 hour + news cycle, and social media’s inaccurate reporting- I wouldn’t blame them if they didn’t want to take the risk, or attempt to make the exceptions that Compassionate Use is all about.
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Hi Sarah Mae, I’m glad it worked out for you. And you are absolutely right it is a no-win situation. When I heard that Chimerix said that it wasn’t ready for someone so young, I thought now is the time.
I don’t think people or companies should be bullied into doing anything because the court of public opinion says, “it’s the right thing to do” or “it’s what they should do.” In a way, I think media may hurt the chances of people getting Compassionate Use durgs in the future and I fear those drug companies that still have the program will discontinue them or make it even harder for people to get into the program.
I just hope we haven’t shot ourselves in the foot. I would love to see Josh Hardy continue on an upward trajectory and Chimerix along with other drug companies reestablish their Compassionate Use programs because the can and do work.
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