Boys' medicine held up by Homeland Security
Monday, April 03, 2006
By Pat Shellenbarger
The Grand Rapids Press
Tyler Fehsenfeld's doctors said the 6-year-old needs a drug from a company in England to delay his deterioration from muscular dystrophy.
The U.S. Department of Homeland Security said he couldn't have it.
Only after U.S. Rep. Vern Ehlers' office intervened last week did the U.S. Food and Drug Administration release it.
Tyler's parents, Anessa and Scott Fehsenfeld, of Rockford, were relieved but perplexed the federal agencies blocked a medication vital to their son's health.
"I'm choosing to give this drug to my son that a doctor says he needs, and my country says he can't have it," Anessa Fehsenfeld said. "As if the diagnosis isn't bad enough, and then you have this to deal with."
She ordered the drug, Deflazacort, in late January after Tyler's doctor prescribed it to slow rapid muscle decline and perhaps prolong his life. On March 6, the couple received a letter from Homeland Security's border protection division saying it confiscated the medicine because it is not approved by the FDA.
Several other parents of boys with an aggressive form of muscular dystrophy called Duchenne received the same form letter. In November, Customs began cracking down on shipments of prescription drugs from outside the United States.
While Deflazacort is available in Canada and throughout Europe, the company that makes it has not sought FDA approval to sell it here. The reason, some doctors and advocates for muscular dystrophy patients believe, is because it is an "orphan drug," with a market too small to be profitable.
While Customs and FDA officials said the goal is to protect Americans from unsafe drugs, Furlong called the seizures "a bureaucratic over-reaction. We have enough evidence to demonstrate it's safe.
Sandy Peterson, of Rockford, said Customs twice held up Deflazacort she ordered for her son, Mitchell. While she eventually got the drug, "Now we have to go through all these hoops to get it through Customs," she said.
Deanne Friar, of Grand Rapids, said she picks up supplies of Deflazacort for her 6-year-old son, Kevin, during visits to his doctor in Toronto. Her 20-month-old son, Kyle, also has Duchenne, but is too young to take the drug.
Without the drug, Duchenne patients typically lose their ability to walk between the ages of 6 and 12, said Marianne Knue, a nurse practitioner who works with Wong. Since the disease also affects the heart and breathing muscles, they often die in their teens.
More....
http://www.mlive.com/news/grpress/index.ssf?/base/news-28/1144075762264580.xml&coll=6---------------------------------------------
Well there you have it sports fans, you can import illegal aliens with impunity but not legal drugs that somehow our drug corporations can't make enough money on. And your government supports it. This country is going to the dogs.
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