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Today's word on journalism

Monday, January 29, 2007

Words as weapons:

"When he had a pen in his hand it was like giving a kid a machine gun."

--Peter Hall, theater director, on "Angry Young Man" playwright John Osborne (1929-1994)

Survival's not the only worry for people dealing with hemophilia

By Devin Anderson

December 11, 2006 | Utah resident and hemophiliac Scott Anderson, 15, knows the burden of hemophilia all too well. Scott has dealt with his hemophilia all his life and endured all the necessary factor infusions that go with it. Scott isn't even able to drive yet, but has been told by his parents that he's already beginning to get close to his lifetime insurance cap. Scott is afraid he'll find himself in a position where no insurance company will want to take him as a liability because of his condition.

"I have to eventually find a job somewhere that will cover my insurance or I'll be screwed," he said.

Scott's parents, USU alumni Rod and Terri Anderson, both felt that Scott needed to know what he would be facing the rest of his life. The hemophilia gene is only carried by females and only affects males. Rod and Terri also have an 8-year-old named Derek who has severe hemophilia, as well as an 18-year-old daughter named Niki who is a genetic carrier of the disorder. Rod and Terri's oldest daughter Kasi is a junior at USU. Kasi managed to avoid inheriting the hemophilia carrier gene. Terri said she wasn't aware she was a carrier of the hemophilia gene until Scott was born. She said Scott nearly died when he was born because the doctors didn't know what was wrong with him.

"We were told there was basically no chance of survival," Terri said. "He's our little miracle."

For people with bleeding disorders, especially those with hemophilia, the burden of chronic pain and expensive long-term treatment is a way of life. According to the National Hemophilia Foundation, current factor concentrates cost an average of $60,000 to $150,000 per patient annually, depending on the brand and type of factor. The injections must be administered regularly to prevent internal joint bleeding from normal everyday movement. Other bleeding disorder-related complications, such as the need for surgery, can also significantly increase treatment costs. This means that even at $60,000 per year, a person with hemophilia could reach a lifetime insurance coverage cap of $1 million before they reach adulthood.

Hemophilia is the result of an inherited genetic mutation that inhibits the body's ability to create certain blood clotting factors. A deficiency of clotting factor VII is known as hemophilia A, and a deficiency of clotting factor IX is known as hemophilia B. The severity of the disorder varies, depending on which clotting factor is deficient and the factor level. Hemophilia A is far more common and about seven out of 10 people with hemophilia A have the severe form, meaning that there is less than 1 percent of the normal level of factor XIII. The National Heart Lung and Blood Institute estimates that there are about 18,000 hemophiliacs in the United States and about 400 people are born with the disorder each year.

Rod Anderson, a physician himself, said he was aware of how debilitating the disorder could be but never thought that it could become a part of his life. Rod said his medical knowledge was almost a curse when his son was fighting for his life because he could see just how grim his son's condition was by looking at the various machines Scott was hooked up to.

Rod expressed hope that a cure could be on the horizon but also expressed frustration that his son's joints could be forever affected by the chronic bleeding. Research is being done to develop a method to insert better functioning factor VIII or factor IX genes into the cells of people with hemophilia so that their blood will clot more effectively. Scientists have effectively been able to do this gene therapy procedure in animals. Rod said he hopes this type of gene therapy will eventually be able to safely increase the levels of the missing clotting factor in humans as well.

"The ability to increase Scott's factor level at all would be a blessing," Rod said. "All we can do for now is pray and hope for the best."


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