BROOKE: This is On the Media, I’m Brooke Gladstone. Social media can embrace you, or engulf you. For those confronting cancer its a resource, a burden, or for some, an irrelevancy. They decide.
NICOLE: My name is Nicole. I"m calling from Seattle. I credit social media with leading me to the effective treatment for my cancer. I was diagnosed with stage 4 appendix cancer, which is a very rare cancer. You know, the prognosis is usually quite poor. But I was able to find a Facebook group specifically for appendix cancer and talking to the patients on that group lead me to a specialist in Baltimore. It's helped me cope enormously because if we can talk about what it's like to have lost so many organs to have our lives changed so much, to survive or not to survive, as we lose people pretty regularly on the board, which is pretty hard.
LISTENER: Hi. My mom has jumped from 1B to Stage 3 in about a month. She has pretty much had a social media blackout for everybody. I guess what's tough is that I can't really tell a lot people. I can't really deal with it in that way. But at the same time, I guess personally I don't know what telling a whole group of people online is going to do for her, they're not doctors. They can't help her, they can't fix her. You know? And I'd rather remain anonymous, to be honest, Like I said before my mom doesn't want anybody to really know.
BROOKE: So social media can be a resource and a solace, or an intrusion and a snoop. It also can be a crucible for public action.
One year ago, Aimee Hardy of Fredericksburg, Virginia, was the mother of a dying seven year old boy.
AIMEE: Josh's condition was getting more critical by the day and we heard our medical team say that if he didn't get the medicine that Chimerix had, things weren't going to go well for him.
BROOKE: Josh had endured four bouts of cancer, heart failure and a bone marrow transplant. But the transplant had caused a deadly infection. There was a drug, still in clinical trials, that could save him. But they couldn’t get it.
AIMEE: And I just of put that plea out on Facebook
BROOKE: What was the plea?
AIMEE: Facebook post, March 6 2014, "Please help us save our son, share this post if you believe a child's life is more important than money. The situation is this, our son, who recently had a bone marrow transplant, has developed adenovirus. There is a drug called brincidoforvir. that has been proven to treat the adenovirus effectively. Our doctor at St Jude told us he ran the study for the drug company and he knows it will work, however the drug company has refused to release the drug for compassionate care because they are trying to take it to market. Basically, they're not going to save a child's life for money.
PLOTKIN: When we got involved there were 3 thousands hits on social media.
Richard Plotkin was a retired trial lawyer, who had seen his grandson suffer from cancer. His family launched the Max Cure Foundation, to help similar children. He offered to help Josh by publicizing his case.
PLOTKIN: My small foundation alone had 1.1. million hits in 4-5 days on Facebook and 4 hundred thousand on Twitter. This story reached Brazil, Germany, France, England and the Middle East. I was interviewed by a German TV station because of this. Ken Moch told me that he received emails from friends emails from the Middle East asking him how he was.
BROOKE: Kenneth Moch was the CEO of Chimerix, a small drug company with about 55 employees and one drug, its first drug, Brincidofovir, still in clinical trials. Chimerix had previously provided it to over 400 critically ill people, either individually or under a large government program. But that program ended in 2012. Kenneth Moch:
MOCH and the decision was made to focus the human and financial resources of the company on seeking formal FDA approval for brincidofovir.
BROOKE: But requests continued pour in, and all were denied. It was when Josh Hardy’s request was denied a second time that the family turned to facebook to make that crucial plea. The next day, Chimerix was swamped by a social media deluge.
MOCH: It was an extraordinarily rapid response. There were many tweets........ All the way from very nice, "please, it's the ethical thing to do" to threatening to as violent and demonizing as one can imagine.
BROOKE: Did you suspect that this might happen? Had it happened before?
MOCH: Social media had been used before, by families seeking access to an experimental medicine. It had never been used this intensely, in part because the family members were in contact with several people who were extraordinarily social media savvy…
BROOKE: Among them, Richard Plotkin, that trial lawyer turned activist,, who understood that addressing a crisis like this requires more than a facebook page and a twitter feed.
PLOTKIN : You need a face, because I knew through our sources that I might be able to get them on CNN, Fox and Friends, or Fox News Channel. and the face that was produced was of Amy Hardy, Josh's mother.
BROOKE: What is the right face?
PLOTKIN: The right face is of a mother who's desperately pleading to save the life of her child.
AIMEE: It was very nerve wracking. First of all, your son is sick and you are in the ICU and they're telling you how critical it is, and you need to leave to go be on television. So a large part of me didn't want to do it.
BROOKE: You were afraid he wouldn't-
AIMEE: I don't even want you to say that out loud
BROOKE: I'm sorry.
AIMEE: my husband talked to me, he said we've got to do this, They're giving you the opportunity to state your case, you have to go. So I did. I can remember waiting to go on Fox and Friends, I felt like my chest was going to explode, my heart was going to come through my chest. And I could hear the show going on in my ear and I knew after the next commercial break I was gonna be on television, and I was like, Oh my gosh, I don't know what I'm going to do. But the song that led into commercial break was "You gotta have faith" by George Michael.
I was like, that must be a God-wink, I'm going to settle down right now. I can do this, I can do this. And it was actually a miracle. I cry at everything, I can't even watch a Hallmark commercial without crying. So for me to on national television and plead for my son's life was nothing short of a miracle.
JOHNSON: Why will the drug company not give, as a compassionate use, this drug he needs to survive?
AIMEE: They've definitely given excuses but nothing is acceptable. This is our child's life. We feel compelled to keep asking and begging because he absolutely needs it. If he does not get it he is going to die.
BROOKE; That was just the beginning.
Tonight a local community is fighting for Josh Hardy.
He’s a 7 year old boy who contracted a virus during his treatment for cancer.
The Hardys turned to Facebook... Convincing tens of thousands of Americans to lobby the drugmaker and even the White House for compassion
Now I know you think -- all of us think -- why can’t they just give this little boy this drug?
BROOKE: I asked Richard Plotkin….
BROOKE: D id you consider the position of Ken Moch and Chimerix. You know, the ethics of saying yes to one patient and no hundreds of others?
PLOTKIN: My goal was to get Josh Hardy the drug. If in fact the boy, Josh, died, I'd have done everything in my power to destroy the company and Mr. Moch.
As Plotkin prepared for his interview on Fox News, he decided that Kenneth Moch was the problem, so he’d make him the villain. And he had an eager ally in Fox interviewer Peter Johnson Jr.
JOHNSON: I wrote to Mr. Moch last night and I told him that, unfortunately, this little boy had made a turn for the worst, and as you point out he may not live out the week. I did not get a response whether that in fact had changed his mind
PLOTKIN: All I can tell you is that he is adamant. And as a result it appears the final plea is to the board of directors, to Chimerix, who I’d like to make that plea right now. And I’ll steal a page out of the playbook of Matthew Mcconaughey in the movie “Time to Kill”: I ask the board to close your eyes. And as you close your eyes assume there is a little boy lying in a hospital bed who says to his father, “Daddy, am I going to die? And if I’m gonna die, who will take care of me in heaven?” And then I want you to assume that t his little boy is your child or grandchild. And members of the board of directors I have no doubt how you would respond to that.
JOHNSON: Richard Plotkin, thank you for being a patriot
BROOKE: Okay, so let’s replay that reporter’s rhetorical question.
REPORTER:Now I know you think -- all of us think -- why can’t they just give this little boy this drug?
MOCH: This drug has the potential to be the first broad-spectrum anti-viral against what are called "double stranded DNA viruses."
BROOKE: Kenneth Moch.
MOCH: We've all heard of them, we just don't call them DSDNA viruses--they're cytomegalovirus, herpes viruses, human papilloma virus, smallpox and adenovirus, which causes the common cold but in immuno-compromised people... it can kill you. So those viruses are rampant throughout the global population. If you said yes to Josh, how could you say no to anybody else who came in with a life-threatening adenovirus infection? How could you say no to patients with a life-threatening cytomegalovirus infection? You might swamp the company with requests for compassionate use and not be able to complete your clinical trials necessary for approval of the drug.
BROOKE: It cost 50 thousand dollars to provide compassionate use of the drug to each patient, not to mention vast amounts of time and attention. Remember, Chimerix only had about 55 employees. Moreover, Moch had served 10 years on board of a biotech industry group that had drafted a set of principles he firmly embraced:
MOCH: The first is if you're going to provide access to an experimental medicine, it must be done equitably.making sure that nobody's chosen for a particular parameter- be it friendship, money, politics or social media. The second point is that nothing you do in providing expanded access should delay your program for approval for the drug by the FDA. Because that does influence the near-term patients from the future patients, and while they may be hypothetical future patients now, they are real future patients when their time comes.
BROOKE: A little background on Kenneth Moch: Twenty five years ago, he founded the first company to develop cordblood stem cells since used to treat over 10 thousand people. Before that he ran a company that worked on small molecular therapies for cardiovascular aging and diabetes. So he’s been around the cutting edge treatment block, so to speak. But within a week of the Hardy’s first facebook plea, he did get Josh that drug.
Josh Hardy has a message for all the people who supported the social media campaign that helped save his life.
JOSH: I appreciate your help and I’m good.
BROOKE: So how did Kenneth Moch square that circle?
MOCH: Starting on Monday morning, March 10th, literally just three days after the social media event began, Chimerix and the Food and Drug Administration, began conversations which lead to the creation of a new Phase III clinical trial, a pathway forward that would allow the company not only to provide brinicidofovir to Josh Hardy, but also to provide the drug to many other patients in need and to collect data that could be used in support of the ultimate application to the FDA for approval.
The new trial is focussed on adenovirus, Josh’s virus, which hadn’t been tested before. Of course, once the drug hit the market, doctors could have prescribed it for adenovirus anyway. But, says Moch, you wouldn’t have good data on how well it worked. Now you will. But did it slow it path to market?
MOCH: I don't believe it did. Under a different scenario, it might have. But ...We were able to get him the drug in a scenario which I think was to the benefit of Josh, to the benefit of Chimerix, and to the benefit of future patients. So, I absolutely believe that the solution that was reached created a win-win for everybody involved.
BROOKE: Richard Plotkin was delighted by the solution, and also, by Moch..
PLOTKIN: Let me tell you, it would be a privilege for me, to anything I would do with that man, I think what he did was outstanding, and the fact that he was able to come up with that idea, to start that clinical trial was brilliant, and the fact that he was let go is outrageous in my mind.
BROOKE: Yes. Moch was fired. That doesn’t worry him. But the treatment of the issue across the media, does.
MOCH: The tenor, from the beginning, was "How could you not make this drug available?" There was never a sense in the media coverage of the dilemma or ethical debate that existed.Josh Hardy had a very positive response to brinicidofovir and everybody looked at this and said, "It's magnificent, the child got the drug and he survived." But what might have happened to the development program if Josh Hardy had had an equally rapid and negative response? Is it possible that that might have slowed down the development pathway for brinicidofovir by a week or a month or two months or a year? And if that had happened, would not the patients who might have received the drug in the future, during that month or two months or a year, themselves possibly have died?
BROOKE: Kenneth Moch co-wrote a paper with noted bioethicist Arthur Caplan last August called “Rescue Me: The Challenge Of Compassionate Use In The Social Media Era.” It said the Hardy case illustrates the power of social media to influence health care interventions, and the roadblocks to those in desperate need of them; that there is a moral tension that often pits the few against the many. There needs to be a new system, they wrote, to resolve the logjams, and funding issues, a review board perhaps, so decisions are not forced by tweets and talk show hosts, reporters and politicians. They said that there’s a moral tension that often pits the few against the many.Meanwhile, Josh is doing very well.