Profits Before Patients

Today was one of the most difficult days of my life.  I had to sit in front of a CEO and the VP of Research and Development of Shire Pharmaceuticals to hear my son’s fate.  I am in such awe of what occurred,  I am struggling to even write, so here is a quick summary of yesterday’s less then 5 minute meeting that took place.  I do have to say that what you will read is quite alarming, especially for the MPS Community.  

– Flemming stated “We don’t deal with patients.  We don’t deal with families.  We are in the business of developing products.” 

You are correct Flemming, your lack of compassion even for a little boy in your presence yesterday clearly shows that you do not want to deal with the people who make you rich.

– Flemming basically asked Jack to leave, I can’t recall the exact verbiage but he said something like, when we do these types of meeting parents usually don’t have the child present so he does not have to stay.

Of course you wanted to kick Jack out of the room, he might cause you to face the fact that this is the reality of disease and this is what it looks like, and you may not be able to dehumanize my son who just wanted to love you with a hug. 

– They have delivered 4 very different messages to us through an email, on a teleconference, a statement to the National MPS Society, and now in person. They have lied to us all.

It’s clear that Shire does not have any true message to deliver except that they want to make products that are profitable, sacrificing lives while doing it!

– We didn’t give them a chance to speak and redeliver a death sentence for our Jack, we walked out on them and left them with a 700 page binder of over 31,000 petition signatures, and binder of over 300 comments with the name Shire spread throughout.  

I know you had to decide what to do with those binders, can’t throw away a petition with your name all over it.

– Shire had 3 security/body guards at the hotel meeting.

Not even going to comment, just shows who they are and what they do!

As you all know, Jack is an incredibly loving and gentle soul.  As I play it over and over again in my mind, the last thirty seconds of our meeting is a summary of our fight to save Jack.  We didn’t prep Jack for this meeting, we just wanted him to be with us.  Once it was clear that Flemming and Phil were meeting us just as a public relations move, we got up to leave.  As Andrew shared with them, “An immoral decision is still immoral, even if it’s delivered while looking us in the eye and said to our face.”  Soon after and unprompted, Jack got up and went over to Flemming and Phil’s side of the table, neither rose to greet him.  Neither of them even turned their chairs to welcome Jack.  It was a sad and awkward interaction as they ignored Jack’s request for an embrace just as they are ignoring our request to save Jack’s life.

Flemming and Phil treated Jack like he was contagious, even suggesting we not have him in the room for our meeting.  The only thing contagious about our son is his smile, laughter, and love for people.   I keep thinking of the photos that Shire uses on their brochures and website.  Their perception of Hunter Syndrome is skewed.  The majority of patients needing Shire’s help are not boys who have a mild form of the disease going to college or doing interviews for videos, in fact Shire does not address that 2/3rd of the Hunter Syndrome population is a sad and unbearable life, parents watching their children losing skills until they die.  These parents aren’t smiling, they are suffering as are their children.  Nothing is perfect, we are all just fighting for our children’s lives.  But that doesn’t sell drugs and line your pockets, isn’t that right Flemming and Phil?

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Our friend and now family, Andrew McFayden.

31 thoughts on “Profits Before Patients

  1. This is sickening. I’m not going to articulate my thoughts and feelings about this debacle here. Jamie, I am with you all the way and will not give up on helping to #savejack

  2. I was also very disappointed and sickened to hear this news. The news is bad enough, but to be delivered in the manner that it was, is one of the worst things I’ve read or heard in a long, long time. Please know the fight for Jack is not over yet. Continue to fight.

    • Thank you Ryan. Ah yes quite surreal. According to some friends who used to work for Shire or have worked in Pharma biz, they were not surprised. Unbelievable people actually choose these careers, can be so evil, and even have families. I feel sorry for Flemming and Phil’s children.

  3. I am heartbroken to hear this news. My prayers will always be with precious Jack!! Prayers to mom, dad, & family to deal with this. Prayers that somehow & that someone can put some pressure on Shire to do the right thing & give Jack the medication. Hopefully the media can help.

  4. My heart just aches to read your words and your experience with this company. I am glad you brought Jack with you. I am so sorry he was overall ignored. How cruel and inhumane. I can hardly imagine what is happening inside of you. Two things are certain and will not change. We will all be fighting for Jack with you, and Jack is very loved and he will always know that. Keep them both tucked away inside your heart for today and tomorrow too.

  5. Jamie I don’t know how you can write so well as I am sure you are angry and sadden by SHIRE’s decision.I for one cannot conceive how the executives and CEO’s of these drug companies can sleep at night.I would love for them to spend one day in our shoes,in your shoes.
    I think the TODAY’S show or CNN should get their hands on this story and bring to light these heartless drug companies!
    Maybe we should have all showed up at this meeting,that way their security guards might have been put to good use…
    So angry for you!
    Our thoughts and prayers are with you.
    I am glad Andrew is and was by your side!
    LOVE
    Anne and Sebastien

    • Anne, my writing releases my anger. Writing prevents me from throwing more dishes and screaming till my neighbors think I’m kookie. Lol.
      We won’t give up this fight that’s for sure! Thanks for checking in. Love to you all up north!

  6. I say maybe getting a lawsuit filed against shire maybe there shut up then this is redicalus they can’t just give him a chance oh or is money hungry people who are selfish and greed God will heal him sad that this has to go like this

  7. It is hard to believe that two human beings could be so cold and driven by the almighty dollar…. Especially with Jack right there!! I am hoping you get some media involved and maybe find an attorney that knows how to deal with a drug company that forgets who is helping to make their year end bonus!! Know that while they ignored Jack.. He has thousands of people that would love a hug AND hug him BACK! I cannot imagine your hurt and frustration… But hope there is some comfort in knowing you have support and we will do whatever we can! We will help you fight!! Hugs to all!! Bonnie and steve

  8. I am in sheer amazement at the lack of compassion Shire has shown. All this time I thought they wanted to help us save our kids, but I guess they just want a pool of guinea pigs for their next trial. You would think that by showing compassion to one child would unite the families to fight for their cause. Honestly, it makes me consider taking my son off of elaprase completely. Why should I pay for a drug to help fund a trial that they won’t use to save someone. I can’t wait for their patent to expire and let the competition in.

  9. All who comment here please take time to post on your FaceBook page, Tweet if you’re a Tweeter, and spread the word! My prayers continue to be with all of you, Jamie!

  10. This is simply inhumane!! And yes, Jamie, you are so right about the graphics they choose and don’t choose on their website. When I show it to people, I have to explain that “most” of the hunter patients do not look so unaffected. It’s about money first for them, obviously. I am in disbelief at their insensitivity at this meeting. Cold hearted doesn’t quite touch this.

    Amy Kemp / Zain Semones

  11. It disgusts me that doctors, surgeons and their ‘ Higher Ups’ seem to think it is THEIR decision to choose Jack’s fate. Doctors should be helping Jack with everything they have to cure him. What is wrong with the doctors? I believe these doctors must comply with the Hippocratic Oath. I suggest that you may want to seek a more understanding and passionate hospital for children. As parents you have the right to demand correct treatments and medication for your wonderful and brave son. Never give up. Keep after the doctors, and have them research children in other parts of the country who have had a similar situation.

    God bless Jack so he can be well and strong and a happy young boy again.
    Stay strong and find the right care for your son. Maybe you can find a hospital and doctor who knows how to treat a little boy who is fighting for his life.Please keep me posted on his health, and take care of yourselves.

    I so wish Jack to get well soon. Michele Walker (Denver, CO)

  12. I am sorry Jack and family. Not the news I was hoping and praying to hear. Please let us know if there is anything we can do…

  13. So sad the world is only for people who try to play God, deside who can live and who can die!
    Shame tot hem who are in this possition and for once not looking to how to get richer but to do good from the heart!

    So sorry to hear this!

  14. I am a friend of Deb’s, have known Trey since infancy and was a special educator. When teaching in rural Alberta in the 70s, I had a student with MPSII. I cared for him daily, in the classroom, until he was too sick to get to school. I continued to visit him at home until his death. I KNOW what the severe form of Hunters looks like. And though, he was not my son, I know what it is like to watch a child close to you die from it.

    I want you to know that I am part of your fight and will continue to be until Jack gets the treatment he needs. I’ve signed the petition, sent the email, made the phone call and will continue to do whatever I can as a member of Deb’s team.

    I wish I could do more. I can’t imagine your daily anguish. I wish I could change your life with a prayer (I’m doing that, too) or a magic wand. But I can’t. So I’ll keep being the best advocate I can be.

    You have many friends you’ve never met. I hope that helps, at least a little.

    Blessings,
    Leora

  15. Drs. Flemming and Vickers of Shire Pharmaceuticals have background and knowledge to be brave and do the right thing!

    Dr. Flemming worked as a physician in pediatrics and has four children himself. In an interview on August 1, 2013, Dr. Flemming emphasized that Shire is “patient-centric” and relating to patients is part of Shire’s culture (William Looney, PharmExec.com).

    Dr. Vickers recently wrote about the devastating impact of rare diseases (including MPSll) on patients and their families:
    Rare diseases often affect “”patients in early childhood, and are frequently progressive, disabling and life threatening in nature. These characteristics can have a devastating psychological impact on families of children suffering from these diseases” (Drug Discovery World, Spring 13).

    The science, safety, FDA parameters, and ethics are all clear. Chose to Be Brave Dr. Flemming Ornskov and Phil Vickers!

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