Would you believe I have spent the last three hours talking to various people about this including a reporter from the Boston Globe?
Understandably, this is HUGE news in the rare disease world. You have one of the most profitable treatment production companies in the world being shut down. Around 8,000 patients, including Hannah, are directly affected by this. But it wasn’t done maliciously, and there was no intent ever to harm people. It is a crappy situation that has happened, and we, the patients and parents, have to just suck it up that it happened and work WITH Genzyme towards a solution. I don’t have the energy to get angry over something that is over and done with and that I have no control over.
I still have no idea how this is going to affect Hannah directly. I’ve been talking to one of the people I have been working with over at Genzyme, and there really isn’t anything to share yet. But she promised to touch base with me often, and she has already proven that today.
I keep getting asked “Aren’t you angry at Genzyme” for this? Truth is, I’m not angry at them. I’m disappointed that the situation happened. I’m scared to death for Hannah. But you know, Genzyme was the only one that researched and came up with a treatment for Gaucher’s Disease at a time when no one else touched it. Even though this isn’t a cure for neuronopathic Gaucher’s disease, the Cerezyme directly has impacted the health of Hannah and the other nGD children in a positive way.
The people I have met at Genzyme have been absolutely wonderful and supportive. From our case manager to our local Genzyme rep to their patient advocacy representatives… they have all just been fantastic. They don’t act like a “big company,” and they have treated my concerns with Hannah on a very personal level, not as if she was just another patient.
So “no,” I’m not angry AT Genzyme. I’m just disappointed with this situation and very scared as to how this is going to affect Hannah’s life. I just need to know how Genzyme is going to handle the remaining inventory and the lack of inventory.
i think too it is great that you have created such wonderful and meaningful connections with the people at the company as well! I hope it helps…
Wow. This is an odd and terrifying wrinkle. I’m very sorry that the world is adding another obstacle for you and your family. Keep staying positive and I hope this works out.
I also suffer from Gaucher’s. I have the lighter form and my symptoms came on when I was in my late 30’s. I have my infusion tomorrow and I know that I wont have another for a few weeks. I am sure that I will be able to deal with the fatigue and pains that I will feel, but if our doctors will agree I have 1600 units that I will gladly give up for your daughter’s health. I am not sure if we can co-ordinate it quickly enough but my email is larry@steinhouse.net.
What a beautiful offer Larry :'( This verifies for me that there truly are still wonderful people in this world.
I agree — Larry, you are a big person with a good heart.
Larry-
You are an amazing human being. This is indeed proof that angels do reside here on earth with us. Thank you on behalf of all of Hannahs friends!!
xoxoo