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?