• Wed, Mar 12 - 12:00 pm ET

Media Shames Drug Company CEO Into Providing Treatment For Dying Child

shutterstock_166381559

I don’t have any love in my heart for bigwig drug company CEOs with an agenda, and this recent story only proves my point. A seven-year-old cancer survivor in Virginia is desperately in need of life-saving medication. Josh Hardy is suffering from a viral infection that developed after a bone marrow transplant. Josh has battled cancer four separate times in his seven-year lifespan.

josh

As luck would have it, North Carolina pharmaceutical company Chimerex produces just the drug Josh needs—medical professionals believe that Brincidofovir could clear up this life-threatening infection within just two weeks. Though this drug is not yet FDA approved, it has already been given to hundreds of patients in “compassionate use” allowance.

So why couldn’t this dying boy get the life-saving drug he needed? If you’ve ever dealt with insurance companies or drug companies before, you probably won’t be surprised to hear that Chimerex CEO Kenneth Moch flat-out refused:

Previously Moch said that saying yes to Josh would mean saying yes to many more patients, draining the company’s resources and delaying the time it will take for the drug to progress through the formal studies required before it can be given FDA approval and help many more future patients.

However, the company received $72 million in federal funding to develop Brincidofovir.

And:

Moch was accused of hanging up the phone to a charity that offered up the $50,000 needed to buy it for the child.

Dead-inside CEO refuses life-saving treatment for dying child, and media onslaught ensues. In an utterly predictable turn of events, CEO Moch couldn’t take the heat. Moch changed his mind and has now decided to provide Josh with the life-saving anti-viral treatment his family has been begging for.

Moch is trying to put a positive spin on his previously heartless actions: “Kenneth Moch announced on Tuesday night that his firm will begin a pilot trial for the drug on Wednesday – with Josh Hardy the program’s first patient.”

Thankfully, this story has the beginnings of a happy ending. Still, Moch doesn’t deserve a pat on the back. With a little coercion, he did what any caring person would have done in the first place.

(Image: ZerborShutterstock)

Share This Post:
  • MaebykittyRN

    That guy sucks. Actually he way more than just “sucks”, but I’m trying to curb my sailor mouth, so “f*#k that guy with a stick” seemed inappropriate.

  • Taxes Make Kittens Cry

    OK, this particular CEO should have handled this situation better, and I’m glad you’re not attacking all drug companies. I actually read a comment on CNN last night where someone actually said the world would be better off without drug companies… ???

    But the real problem is the Mount Everest pharm companies must climb to get drugs approved by the FDA. And the obstacles aren’t some clinical trials, peer reviews, etc. Most of it is in the endless bureaucratic paper work gauntlet that the FDA forces the companies to go through. I know there’s an interest to prevent harmful drugs to go on the market… but special cancer drugs like this, where the alternative is certain death, why won’t the FDA make it easier to approve it so companies like Chimerex doesn’t have to fear providing compassionate use drugs that will take away valuable resources the company needs to get the drugs approved in the first place.

    Again, this story only took off because that poor kids’ family was able to mount a successful social media blitzkrieg. But what about the thousands of other families who don’t get the media attention? “Sucks for you, your story isn’t as tear-jerking”?

    • Bethany Ramos

      I agree with that one – social media attention was the only saving grace here.

    • Taxes Make Kittens Cry

      Beth, I swear this is the last time I’ll be serious. Don’t be Judgy! >:(

    • Bethany Ramos

      #howdareyou have a smart opinion.

    • Valerie

      Yeah, you hardly ever sound trollish anymore. I think it’s time you go legit.

    • keelhaulrose

      My mom designs medical devices, and I’ve seen her come home in tears because the project she had been working on for seven years was denied FDA approval for a trial because an engineer (one of many) filled out a single piece of paperwork wrong. They’re very strict and every step between “idea” and “approved for human use” is extremely stressful.
      I hate sounding heartless when people online are complaining that a child with a condition is denied entry into a clinical trial for a drug or device or therapy because they are too sick or have another condition as well, but I know why companies do it. You don’t get to explain why a particular patient didn’t get better with your drug, you just get to report they didn’t. And that can delay use of a good drug in many others. In that sense a drug company has to operate as a business and not a charity.
      The CEO here seemed out of order, but I’m really not comfortable with people using the media to bully companies in cases like this because, while it may be good for that one kid, if something goes wrong it could hurt more kids down the line. I get doing everything you can for your kid, but these “big, mean drug companies /doctors/hospital” stories are becoming more common and health care shouldn’t depend on how camera worthy your family is.

    • Taxes Make Kittens Cry

      “Bully” seems harsh. Let’s face it, if it was someone we loved, we’d do the same. Hell, if it was someone in my family, I’d even break into their lab or bribe someone to get it. I wouldn’t care about anything else, really.

      But yea, what if this delays the introduction of this drug for general use? So that this one child can use it now, what if 20 other children later on don’t get it in time?

      Again, my main point is that the FDA priority is to enforce its own rules… Not to serve the best interest of Americans.

    • keelhaulrose

      I had to use the word bully because that’s where it’s going.
      Jahi McMath’s family gets the media portraying a very good hospital that saves dozens of kids for every one that dies on its property as this heartless company that’s trying to kill their precious child by pulling the life support off a still living body. The hospital is not only forced to keep the brain dead girl on life support longer so they don’t look like they’re chomping at the bit to get her off the machine, but eventually has to keep this dead girl on their equipment in their facility for weeks because the delay leads to a court proceeding. Supporters, at one point, threaten (or carry out, I can’t remember which) to loudly march through the hallways (of a busy children’s hospital where there are many other patients and their families) in order to get the hospital to give in to their demands.
      The family of a girl who needs a lung transplant goes to the media, who asks the hospital why they’re refusing to save this child’s life. This ignores the fact that the organ donation system is set up the way it is for a reason. It can’t save everyone, the goal is to save the most. Within a week or so another family goes to the media with the same plight. These evil doctors/hospitals are refusing to make an exception for their baby even though the system is set up so we don’t let emotions rule the day.
      A mother of two sons with the same medical condition goes to the media when one son, whose condition is less severe, is accepted into a drug trial when the other, who is much sicker, is refused. Media asks why the company is being so cold as to refuse the older child, doesn’t care that his involvement might give a bad result and delay a good treatment for other children with the condition.
      I get doing everything for your child and fighting like hell. But at the same time going to the media is accomplishing nothing but forcing companies to choose between bad PR and a medically/economically intelligent decision. There’s not really a way to involve the media without portraying the company you’re angry at in a bad light, and for the media to make a difference in the situation they have to bully the company. Who wants to be the CEO known for telling the truth and saying that they’re still denying treatment to the (somehow always) adorable young child who loves art, singing, and hugging people with a giant smoke on their face? What company wants to be known as the monster who killed little Tommy, who got a 5 minute segment on GMA where he adorably mispronounced words?
      It’s bullying, and it’s turning health care into a popularity contest where the child on screen is more important than the ten you don’t see. And, of course, the cuter the kid and more sympathetic the family, the more likely the media will put their picture everywhere.

    • Valerie

      So much this. I would literally do anything. I cannot blame this family one bit.

    • JLH1986

      I think if he had taken this opportunity to explain in the way you just did why they were denying, while I think people would still be upset at least they wouldn’t think he’s a heartless bastard.

    • keelhaulrose

      The thing is I don’t think there’s a good way to say this, because all people are going to hear is “we’ve got a drug that might save this kid, but we’re not going to give it to him”. And (help me I’m going to sound like a member of the tinfoil hat brigade here) the media isn’t going to help the company by showing the full statement. They’re just going to pick and choose a few things, and while there would be those of us who read the whole statement and argue based on that, most people are going to hear a carefully selected, most likely edited sound byte, and it’s not going to portray a company denying a dying child drugs in a good light.
      If there is a good way for companies to say this that’s short enough it can’t be convoluted I’ll eat my words, but it’s a hard situation and a hard explanation, and in the end if they stick with their guns there’s still a dying child, and there are people who will never forgive you for denying a single dying child even if it saves a thousand children from dying in the future.

    • Lisa

      Regarding the FDA approval-because those special cancer drugs are incredibly dangerous. My friend used to work for a drug company that made cancer drugs, and the processes that you have to go through to make sure the employees are safe just creating the drug…ye gods. A couple of the buildings are so hazardous that the standard protocol was if you were even thinking about possibly becoming pregnant, you weren’t allowed to work in the building. And these are drugs that safe lives.

      And because these drugs are so dangerous, it’s really important to make sure that they aren’t going to cause more harm than good in the long run. Because all it will take in 5+ years is some report stating that this drug caused XYZ, and then chaos will result.

      And then when you add in the fact that the FDA is so ridiculously backlogged…it’s a nightmare. I have no great love for all the insane rules that are in place with the FDA or drug companies, but the overall goal is to avoid harm.

      The sad fact is that you can’t save everybody. And sometimes, in order to save the greatest number, others are going to slip through the cracks.

  • Guest

    Honestly, I think the CEO’s original denial was correct. This is not a massive company, they only have 54 employees. Second, they did a study of the medication several years ago, to help in the manufacturing and meeting of FDA standards. As the CEO said, “It is yes to all or no to all”. While the family feels their son is the most important life, it is not the case. If the child dies while on this medication then it must be reported to the FDA, if several “compassionate use” patients die, then it can lead to the rejection of the drug entirely. So one or three lives are not worth the hundreds that may be saved if this drug gains FDA approval. While I do believe the CEO could have handled better, drug companies should not be swayed by pressure or sentiment. Originally, as I am not sure if a charity is paying for it or not, the company has to eat the $50,000 for the drug. Yes, they received 72 million, but it takes a lot of money to research the diseases, ingredients, studies, and ultimately get the drug to production. Most people probably think the CEO is heartless, but he has to think long-term, including approval, investors, etc. It is unfair to look at one child and call the CEO a bastard, without looking at the future and realizing that if this drug is not approved, is that one life worth everyone else?

    • Ellie

      No – it is not ok to deny a dying child medication that could save them for any reason. How can we put a price tag on a life? Weighing it against how many others we can *potentially* save? Shameful. Shameful.

    • Guest

      Ahh, see that is only one part of the argument. It “could” save the child, it might not. If the child dies that death reflects negatively on the drug, which the FDA looks at. Second, a company has one job and one job only, to make investors money. If this drug does not receive approval, then investors can sue the company, the SEC gets involved. It has the potential for major litigation and since the company holds the patent on the drug, no one else would be able to manufacture the drug. While you may think it is shameful, I look at the long-run. No, one life is never worth hundreds of lives. Does it suck? Yes. Do I feel for the parents? Absolutely, they are doing what any parent would do. However, sentimentalism has no place in medicine. It may sound heartless, but eventually you have to draw the line somewhere. Until the FDA changes their protocols, especially with including compassionate use, then pharmaceutical companies will continue to deny medication, for fear that it will destroy years of resources and research.

    • keelhaulrose

      Every death on a drug, especially one not fully approved by the FDA, must be reported. So allowing these “compassionate use” cases, especially in situations where there’s a good likelihood of the patient dying either way, is playing Russian roulette with a drug that might save 95% of the people taking it. If I allow my drug to go to 50 people for compassionate use, and 45 of them die, and I have a trial where I give it to 150 people and one of them dies my death rate is not 1/150, or less than 1%, but 46/200, or nearly 25%. One of those numbers is good for the FDA, the other could spell death for my drug. If it’s for a condition that 5,000 people in the US currently have I could save over 99% of them, or my drug might never be an option, so yes, it’s not about a single case, it’s about what’s best for the group as a whole.
      Triage happens every day in the medical community, and it means you sometimes let a case that has a good chance of going anyways go in order to save five who have a much better chance of being saved.
      For the record I am not saying that’s the case in the article. I don’t have all the medical info in front of me, and I’m not a doctor or an expert on the drug, but I’ve been around the medical community enough that some times hard decisions must be made to benefit more people.

    • Guest

      Thank you, you explained it much better than I could. Triage is never fun, it is difficult to make that call. But, you have to remain objective, rational, and logical. You cannot sacrifice multiple victims, for the benefit of one. I do not envy people that are put in the position, because at the end of the day you have to live with the decision you have made.

  • SA

    I go both ways on this. I am no fan of pharm companies by any means, but denying a trial drug is a little different than denying a proven treatment. Because there are so many hoops to go through it could cause a delay in this medicine being open to the public and saving a life that needs it then. It is like the transplant media storms that allowed those children to be given the adult transplants, but you don’t hear about someone that may have died that would have received it instead. It becomes picking and choosing while others wait and suffer and I do feel in fairness that social media should be used to change rules and not just make exceptions.

    HOWEVER, I know that if it were my kid I would break any rule, climb any obstacle, and knock anyone down that tried to stand in the way of her and a shot at a life-saving treatment, so that does make me hypocritical.

    Hope this boy can make a full-recovery. I can’t even begin to imagine what he and his parents have been through during his short life.

  • TwentiSomething Mom

    I’m not sure its so much of the money involved to administer the treatment, but this boy is currently dying, and if he takes this drug and dies anyway, this information still has to be reported and can hurt getting the medication approved by the FDA. This is the problem with giving test medication to patients in severe critical condition, you don’t know if they are beyond treatment.

    I can’t stand drug companies as much as anyone else, but I don’t think this was an easy or simple decision for the drug company to make. I really hope this boy can receive the medication in time and it does cure his infection.

  • jordana

    Wow what a d bag!! I guess it’s good to know that the current generation has the option of media shaming corporate giants into doing the right thing, though!

  • Anony-Mom

    Here’s my thing. They had already given it to many many patients as compassionate use – in fact, had JUST started to stop doing so. So it had to be rough hearing that as his parents. “Yeah, last year, we gave it to others as part of compassionate use, but this year, nope.” And honestly, as a parent, I can’t say that I’d do any less than Josh’s family to get him something that could save his life. (FYI, this is actually a local story for me, so my heart-strings may have been extra tugged).

    What I’d actually like to see is a re-vamp of the way that compassionate use cases are treated in the reports to the FDA when there is a trial going on. Because that seemed to be the crux of the problem for Moch, his company Chimerex, and for many of the posters here in letting a very sick person have it – that the compassionate use patient would possibly taint the trial with results that were partly because of their already advanced illness. If that’s what we’re worried about, why not have it set up that if the FDA is allowing for “compassionate use” separate from the trial, that they also allow those patients to have their results be reported and considered separately from the trial?

    • Williwaw

      Excellent idea! I can see both sides here: if it were my kid, I would do anything to give them a shot at life, but I can also understand how compassionate use might influence drug trial results, and thus jeopardize future approval of the drug, and jeopardize future patients. Surely researchers could separate out formalized trials (where patients need to fit specific criteria to take part, and everything is carefully controlled) from compassionate use (where it is acknowledged that the patient is unsuitable for a formal trial because they are too sick or are otherwise unsuitable, but the patient or their guardian is willing to accept the risks of what is an uncontrolled trial in order to possibly save their life).

  • koolchicken

    Well I hope they’re happy with themselves. Now their boy might live, but at what cost? Will this now hold up FDA approval? Will we hear another sob story in a few years about how someone else wants this drug but this “bad” company won’t hand it over because they’re STILL trying to get approval. What about if things go badly because they were bullied into giving this drug to a whole host of people who it might not benefit from it? Then it might never be approved and even more people will die.

    I get that this family doesn’t want their boy to die. But I’m thinking about all the other boys who might die now. If I were the mother in this case I’m not sure what I’d do. I wouldn’t want to sacrifice my child, but I wouldn’t want the blood of so many other children on my hands either. There’s no happy ending here.

  • fireflywander

    This reminds me of the movie “Lorenzo’s Oil” based on true events. You have the boy’s parents desperate for anything to save their son who struggles in pain just to survive each day. When his father finds an answer that keeps his son from death he wants to spread the word and deliver the treatment to others who need it. However the researchers can’t just approve the treatment overnight, they have to go through testing to make sure it wasn’t a fluke and that it won’t harm others, which takes multiple tests over many years. Its a frustrating and heartbreaking position to be in from both sides.

  • gothicgaelicgirl

    I can’t understand how someone can look at a child that is dying and refuse them a treatment that is so readily available!

  • Pingback: Indra Nooyi Says Working Moms Can't Have It All