We, friends & family of people with Fabry disease, and those have Fabry disease are requesting you, Shire, to resubmit your application for FDA approval to make Replagal (your drug for Fabry disease) available to United States patients. It is currently unavailable except through trials. This is such an unusual disease that medication is not abundant. We understand Genzyme’s drug Fabrazyme has experienced massive breakdowns in the production and have therefore rationed the consumers of the medication from having none available to possibly a half dose per month. Our understanding is this shortage, with rationing, will continue into 2012. This has led to patients with Fabry having declining health problems resulting in inability to work, hospitalizations, home care, nursing home admittance, and even death due to complications from symptoms of Fabry disease. Those newly diagnosed are ending up on waiting lists & not getting any relief. Please, also reconsider the IND program for aiding these current complications.
Thank you,
The Patients, Friends, & Family of the Fabry Community.
I honestly cannot stop checking my phone because the amount of people joining in is just blowing my mind right now. It means so much to see this kind of energy for a cause that has felt so quiet for so long and I really think someone over at Shire is going to have to finally pay attention if we keep this up. My head is spinning a bit but in the best way possible.
6 Comments
S
Sarah Kumar
14 years ago
Featured
So many people are getting sicker because of these shortages. Families are desperate. Just open it up.
M
Mark Reeves
15 years ago
Featured
Ridiculous that we have to fight for access to life saving meds. Bring Replagal to the US now!
K
Kevin Graham
15 years ago
Featured
Need this approved ASAP. This is peoples lives we are talking about not just numbers on a page.
L
Lisa Robinson
15 years ago
Featured
My brother is suffering so much right now. We cant just sit back while the only other option is rationed to death. Please do the right thing.
D
David Perry
15 years ago
Featured
Been watching my cousin decline for months. It is heartbreaking to see. Shire needs to step up and stop dragging their feet.
J
Julie Aguilar
15 years ago
Featured
Fabry is hard enough without having zero treatment options. People are literally dying waiting for medicine that already exists.
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Status: Closed — this petition is no longer accepting signatures.
We, friends & family of people with Fabry disease, and those have Fabry disease are requesting you, Shire, to resubmit your application for FDA approval to make Replagal (your drug for Fabry disease) available to United States patients. It is currently unavailable except through trials. This is such an unusual disease that medication is not abundant. We understand Genzyme’s drug Fabrazyme has experienced massive breakdowns in the production and have therefore rationed the consumers of the medication from having none available to possibly a half dose per month. Our understanding is this shortage, with rationing, will continue into 2012. This has led to patients with Fabry having declining health problems resulting in inability to work, hospitalizations, home care, nursing home admittance, and even death due to complications from symptoms of Fabry disease. Those newly diagnosed are ending up on waiting lists & not getting any relief. Please, also reconsider the IND program for aiding these current complications.
Thank you,
The Patients, Friends, & Family of the Fabry Community.
I honestly cannot stop checking my phone because the amount of people joining in is just blowing my mind right now. It means so much to see this kind of energy for a cause that has felt so quiet for so long and I really think someone over at Shire is going to have to finally pay attention if we keep this up. My head is spinning a bit but in the best way possible.
6 Comments
S
Sarah Kumar
14 years ago
Featured
So many people are getting sicker because of these shortages. Families are desperate. Just open it up.
M
Mark Reeves
15 years ago
Featured
Ridiculous that we have to fight for access to life saving meds. Bring Replagal to the US now!
K
Kevin Graham
15 years ago
Featured
Need this approved ASAP. This is peoples lives we are talking about not just numbers on a page.
L
Lisa Robinson
15 years ago
Featured
My brother is suffering so much right now. We cant just sit back while the only other option is rationed to death. Please do the right thing.
D
David Perry
15 years ago
Featured
Been watching my cousin decline for months. It is heartbreaking to see. Shire needs to step up and stop dragging their feet.
J
Julie Aguilar
15 years ago
Featured
Fabry is hard enough without having zero treatment options. People are literally dying waiting for medicine that already exists.
So many people are getting sicker because of these shortages. Families are desperate. Just open it up.