fabry
Fabrazyme March-In Request
Submitted by James Love on 2. August 2010 - 12:37New: NIH rejects Fabrazyme March-In Petition
- December 7, 2010. Press release from Fabry patients: DHHS denies patient’s march-in request to end Genzyme’s rationing of treatment for Fabry Disease citing that FDA rules block manufactures from supplying the drug in a timely manner.
- December 7, 2010. Statements by KEI and others on NIH rejection of Fabrazyme March-In Request
Data points for Fabrazyme prices
Submitted by James Love on 29. July 2010 - 6:09Fabrazyme is a very expensive biological product used to treat Faby's Disease, a rare genetic disorder. A typical regime is 1 milligram per kilo of body weight every two weeks. A person weighing 70 kilos would thus require two 35 mg vials every two weeks (26 times per year).
The following are data points on prices for Fabrazyme
USA
Source: Fabry patient (See invoice), August 1, 2010
35 mg vial: $4,879.73 USD
Sweden
Source: Kirsten Myhr, July 22, 1010
Public and Private Sector Research for Fabry's Disease
KEI Research Note 2010:2
23 July 2010
Public and Private Sector Funded Research for Fabry's Disease
Introduction
Fabry's disease is a rare genetic multisystemic disorder associated with progressive lipid accumulation and cell damage, leading to a variety of aliments, including some that are life-threatening, including kidney failure, heart attacks and strokes. The disease was identified in 1898 independently by both Dr William Anderson in England and Dr Johannes Fabry in Germany. Other names for the disease include:
