Sen. Amy Klobuchar highlighted the boy's worrisome story today to increase support for her drug shortage legislation. The Minnesota senator joined the boy, Axel Zirbes, and his parents at Children's Hospital in Minneapolis today.

The Crystal, Minn., boy has been undergoing treatment for leukemia that includes the use of cytarabine, a chemotherapy drug that attacks cancers of the white blood cells. Amid his treatment, doctors informed his parents this spring that they were running out of the drug.

The Zirbes started scrambling -- contacting a friend of the family who bought pharmaceuticals for a hospital in Oklahoma to see if they could acquire the drug that way. They contemplated traveling to Canada so their son could receive the drug there. At the last moment, Children's acquired a small supply to finish Axel's chemotherapy cycle and provide the drug to other needy children.

"There was a good month where we were worried and sweating about what was going to happen," said his father, Brian. "Having a child with cancer is stressful enough."

Cytarabine is just one in a growing laundry list of drugs that are now in short supply, according to the U.S. Food and Drug Administration. The shortage list has grown from 61 drug products in 2005 to 178 in 2010 -- and includes treatments for cancer, ADHD and other conditions along with everyday anesthetics for surgery.

Klobuchar said her bill would address the problem by requiring earlier notice from drug companies when they experience production problems or other delays that could result in shortages. "If one drug company has one raw material missing or a delay in production because of a quality issue, they might not want to tell the FDA. So they're just putzing along ... It's just a waste of time."

The bill would also give the FDA broader authority to seek drugs in short supply from foreign providers -- as long as there was adequate proof that they are safe. Klobuchar said she would support opening the U.S. market to more foreign pharmaceutical competition in general as a way to prevent drug shortages in the first place.

Brian Zirbes bristles at the notion that companies allow shortages of low-profit drugs: "A parallel most parent would feel is if you brought your child to a hospital for some infection and they said, 'I'm sorry, we don’t have any antibiotics that will fight that.' There are life-saving drugs out there that people rely on. There should be some responsibility on companies to keep those in supply."
Cytarabine is just one drug in a cocktail Axel has received to treat his cancer. Children's has been a leader in developing specific chemotherapy protocols that maximize survival odds. Had Axel not received cytarabine, he would have diverted from those protocols and "entered a no-man's land of not knowing what the outcome would be," his father said.
Outwardly, Axel shows few signs of his illness. His father described him as an energetic, bubbly kid who "plays with his brother, then fights with his brother." His progress during treatment has been pretty good and given the Zirbes family hope.

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