I have no friggin’ clue!
I have emailed all of Hannah’s main physicians, and a couple speculate that Hannah should be considered a priority patient because of the severity of her disease and her age, but they have no control or say in the distribution of the Cerezyme that is left. But if they run out of Cerezyme, even if she is a priority (again, purely speculation, no proof), you can’t give her a treatment with a drug that doesn’t exist!
I’m scared to death that Hannah will miss a number of treatments and that her condition is going to go into a decline. She worked so hard for the past 4 months worth of treatments, and we have seen such a huge improvement in her attitude, ability, and just her overall wellness. Even though the Cerezyme doesn’t cross the blood-brain barrier, it definitely has worked for her spleen, liver, lungs, bones, and other organs. Her previous bloodwork and reduction in spleen size is proof of that.
How does this happen? How can a company as huge as Genzyme catch a virus that would completely shut down an entire factory? After talking to our local genzyme rep, it does seem as they are working as fast as they can to figure out exactly what they are going to do and how they are going to handle all 5000 of their Gaucher patients (of which only a couple hundred are GD23).
Based on this Bloomberg article, “The shutdown of the plant, Allston Landing in Boston, will cause a shortage in August of Cerezyme, a drug that treats Gaucher disease…”. August is less than 2 months away!
Doesn’t Hannah have enough strikes going against her already with this disease?! Please, please someone give her a break!!!!
I hope that they get things back up and running quickly so it won’t be an issue. You guys deserve to catch a break!
~Jess
.-= Connor’s Mom´s last blog ..Grow Little Grow Worm, Grow!* =-.
Wow!! What a scary place to be- I will be praying for a quick and satisfactory solution to this issue. And for peace for you and your family.
Blessings!!
I truly hope they get this fixed…and quickly! Do they have ANY idea how much Hannah and other children desperately need this?!
.-= Mary´s last blog ..Setback… =-.
God I feel the same way – it seems like we just can’t freakin’ win. Kyle has been making such progress since he started treatment last month, and I’m so scared that he’s going to have to miss treatments that will send him back to square one.
It’s like telling the people who are going into surgery that they ran out of anethestic, so they’ll just have to suffer through it until they can make more.
Why in the hell doesn’t Genzyme have a backup plan in place in case something like this happens? They make 4.5 billion dollars a year, you think they can afford to have a facility ready to produce this medication should something happen to their current one. This whole thing is just unbelievable!!!
.-= Melissa Ingold´s last blog ..Oops, forgot to mention… =-.