Genzyme Halts Production – Kyle’s Treatment May Not Be Available

Posted by Melissa | Filed under Uncategorized

I just got word that the company that makes the Cerezyme treatment for Gaucher disease, has halted production in the one and only plant where treatments are made.

According to Genzyme, current inventories of Gaucher disease treatment Cerezyme are not sufficient to meet global demand. The plant will not return to full operation until the end of July, with expected shortages beginning in August and inventories stabilizing by year end.

This is terrible news, and I’m praying that enough Cerezyme was ordered for Kyle so his treatments will not be effected. I emailed Kyle’s doctor in Toronto asking about it, so I’ll post when I hear something.

If his treatments are stopped because of a shortage, we’re going to be back at square one, and my sweet little boy is going to suffer. Without treatment every two weeks, Gaucher cells will continue to build up in his liver, spleen, bones, and other major organs. His platlets will drop and so will his appetite, and he’ll feel awful – again.

Worst case scenario is that shortages begin in August and Kyle’s treatments are halted, which means he may go without treatment for possibly 4 months if inventory stablizes by the end of the year. Which is why I’m praying that there has been enough Cerezyme ordered for Kyle to keep him going for the next few months.

I’ll post an update when I know more.

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Permalink | Comments (4) | Jun 16, 2009

4 Responses to “Genzyme Halts Production – Kyle’s Treatment May Not Be Available”

  1. Tina Says:
    June 17th, 2009 at 10:55 am

    OMG Lis… Keep me poseted on this, there has to be something we can do to prevent this from happening. I will talk to the staff here and see if they recommend any other ways about going to get around this NEW roadblock.

  2. Bonnie Says:
    June 17th, 2009 at 11:28 am

    How ridiculous is that! Wow, just when things are starting to look up and you get hit with this. Hopefully someone can do something to get things back up and operating. Aren’t the children suffering enough!! Always thinking of you guys.

  3. Michell McKellar Says:
    June 18th, 2009 at 3:13 pm

    OMG!!! As if…there always seems to be something in the road. I am also praying there is enough treatments for Kyle so he doesn’t miss any. Always thinking of yous. Hang in there little buddy!

  4. Tishia Lee Says:
    June 21st, 2009 at 11:15 pm

    I’m praying that his treatments don’t get stopped. How awful it must have been to get this news. I’m sorry and just know that you guys are in my prayers!

    Tishia Lee’s last blog post..Today is the Big Day

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