You would think that for the price we pay for my son Logan’s Cerezyme medication a little more work would be done by the pharmaceutical company Genzyme that produces his medication. Logan has a rare genetic disease called Gaucher which is a inherited metabolic disorder that leads to the accumulation of a particular fatty substance throughout the body.
A “Manufacturing” problem was found almost a year ago and it has cut down the production of two drugs, one of which Logan uses and month after month we are told that production should be back to normal in a month or so. Well, a year later, and now I read in the NY Times that we are looking at more time before we get the right dosage and production is back to normal.
Now I realize that there are only 1,500 people in the United States that are on this medication but that does that make us any less important than other medications? For the cost we are having to pay ($200,000+) annually for the meds. and his infusion, this is getting ridiculous. I have sat back for quite a while with my head in the sand trying to ignore this but to have to find out this information from the NY Times rather than the manufacturer is really ticking me off.
Get your butts in gear and fix the problem Genzyme! Is a 175,000,000 fine not enough to get you off your rear and get this fixed. We depend on you to help our loved ones live somewhat normal lives.