(PITTSBURGH) -- Jerry Walter, a semi-retired Army colonel who lives in North Carolina, said he has led a "charmed life," surviving the terrorist attack on the Pentagon in 2001 and two life-threatening bacterial infections.
At 56, Walter has also outlived a brother and two other relatives who, like him, had Fabry disease, a rare genetic disorder that can wreak havoc on the kidneys and cause strokes and early death. Caused by the lack of an enzyme -- alpha-galactosidase-A -- which is required to metabolize lipids or fatlike substances in the body, its symptoms include chronic gastrointestinal and cardiovascular problems, pains in the hands and feet, renal failure, as well as skin and eye complications, according to the National Institutes of Neurological Disorders and Stroke.
Since 2003, the expensive drug Fabrazyme has kept Walter alive, but since 2009, Fabrazyme has been in short supply, and his dosage has been cut in half.
"I began to have a decline in kidney function and more arrhythmia after the shortages," said Walter, who is founder of the Fabry Disease Foundation.
Jeanette Hyatt, 33, of Royal Oak, Michigan, is currently recovering from a stroke after going two years without full dosages of Fabrazyme.
"I am hanging in there, but I have trouble with my speech," said Hyatt, who is on disability. "It's crazy. I talked to the FDA, but they can't force a drug manufacturer to do anything."
Since early August, Genzyme, the manufacturer of Fabrazyme, has not been able to ship the drug to an estimated 1,200 Americans with the disease, and now patients fear that shipments will be stopped altogether in September.
Now, Hyatt is one of 14 patients who are suing Genzyme for physical damages because of the drug's unavailability. They have also petitioned the Food and Drug Administration to impose a ban on the sale of the drug outside the United States -- Europeans are receiving full dosages of Fabrazyme as Americans get sicker.
Their lawyer, C. Allen Black of Pittsburgh, said many more will soon be joining the lawsuit.
"This is one of the worst avoidable tragedies in American medicine, and the suffering has been incalculable," according to Black, who said patients are suing for millions of dollars in damages because they are so sick they cannot work.
The drugs cost $30,000 for each infusion, and a full dose consists of two infusions a month.
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