Shire Pharmaceuticals has made the decision that Jack will not be granted compassionate usage of their drug. Also, they won’t consider Jack to be eligible for Phase III of the trial. A group of people met and determined my son’s fate. They opted death over life.
“Please recognize that we do not make these decisions lightly.” This decision was not made lightly? So they carefully and seriously opted to allow Jack to suffer and eventually die.
“Data is available for a small number of patients (15)”. Well in the world of rare disease, specifically severe Hunter Syndrome, 15 healthy patients that meet criteria is a whole hell of a lot of patients. And almost 4 years of positive data exists. 4 years in MPS is a lifetime. In the past 4 years, I watched boys lose the ability to walk, talk, play, sing, eat, breath on one’s own, and eventually die. Off hand I can think of 4 boys with severe Hunter Syndrome that were buried before the age of 18 in the past 4 years.
“We remain committed to bringing our potential new treatment to as many Hunter syndrome patients as possible, as quickly as possible.” To as many… – it’s surreal that somebodies have the power to determine who gets treatment and who doesn’t. Jack no, others yes.
Who are these people? Do they have a background or degree in the Arts of Determining One’s Fate? I have no doubt in my mind that if for one second they stepped into my shoes, they would have a different view and change their mind. If it were their son or daughter or grandson or granddaughter dying, I guarantee they would make something happen. They do have the power to offer compassionate usage. And allow Jack a chance to live while ensuring the Phase III trial begins without any negative effects. The answer could have easily and ethically been yes, we will help your son Jack. Shire could have fought for Jack to live.
Lying in bed last night, The Hunger Games popped in my mind. I recalled the reactions to the film, I remember hearing “I’m so happy that it was just a movie. And how disturbing. Or what if this movie was true….” I started to think and feel like our situation is part of a new sequel to The Hunger Games.
My family lives in a community of rare disease, MPS. Then, there is another community, The Capitol, who make decisions for this smaller, complex world. (And I say complex because unless you live in it, you can not understand it.) Anyway, The Capitol, or maybe a pharmaceutical company, decided to tap into this small world for profit. They are entertained by money. There becomes a selection and in our case 15 boys get a chance to live and 1 must die to protect the profit. The world watches 15 boys stabilize and grow in many ways, watching the parents rejoice in hope and sleep without fear. And the world silently watches the one boy slip away from the world, watching his parents in living life engulfed in grief without any hope.
Where am I going with this? It’s so surreal. It’s so disturbing. I wish it wasn’t real. IT IS!
I confront my sorrow. And within the sorrow for Jack lies much more, a deep sadness for our systems that fail. Human beings that are slaves to an industry. Slaves to the government. Those who put aside ethics and do what must be done to create, convince, and sell. And sorrow for human beings choosing or selecting death over giving life.
There is a drug that can save my son’s life. There is a pharmaceutical company that owns that drug. There is a way for this pharmaceutical company to dispense it. There is a physician willing to administer it. There are parents willing to take a risk because they know the other option. There is an opportunity for Shire to show the world that they will do anything to help save lives!
You could save this gentle soul who only wants to be happy and celebrate “birfdays.”
Why don’t they want to save my little boy’s life?