A N   E N Q U I R E R   S P E C I A L   R E P O R T
Sunday, December 14, 2003

Lifesaving drug costs $12,500 a week

By Spencer Hunt
and Debra Jasper
The Cincinnati Enquirer

Blake Jamison, 12, suffers from severe hemophilia. He holds a vile of his medication, which costs over $11,000 per week.
(Michael E. Keating photo)

What if the drug you needed to stay alive cost more than $650,000 a year?

Children with severe hemophilia don't have to wonder. They need constant doses of special blood-clotting drugs to help shield them against internal bleeding that could cripple or kill them.

Some families pay more than $12,500 every week for Advate, a drug made in Switzerland from the cell lines found in Chinese hamster ovaries. Advate is so valuable to people with hemophilia that they will pay $6,000 for a liquid ounce - 15 times more than they'd pay for an ounce of solid gold.

The drug's expense illustrates why America's prescription costs have nearly doubled in seven years. It also explains why some families are sacrificing everything to keep loved ones alive.

Blood-clotting drugs weren't always this expensive, but they once were extremely dangerous. In the 1980s, drugs made from HIV- and hepatitis-contaminated human blood infected and killed thousands of hemophiliacs.

Officials at Baxter Healthcare Corp. say Advate is so costly because it wasn't easy - or cheap - to design and manufacture. They won't say how much they profit from the drug's sale.

"Yes, it's expensive, but look at the payback," says Dr. Bruce Ewenstein, Baxter's global medical director. "We are replacing what the human body cannot create. Without it, there are huge consequences in terms of joint damage and even death.

"If you look at the money we spend at the end of someone's life on virtually a hopeless situation, and you look at the money we will spend on a child to give him a normal life, it's much easier to put the cost in perspective."

Back to Extreme Choices
In Their Own Words
Three parents speak out on how their child's situation affects various aspects of their lives. Hear their stories in their own words.
(Requires Flash player)

Listen to these mothers' advice for other families:
Barb Steele
Debbie Martin
Melissa Hahn

Photo Galleries
A Photographer's Journal
Enquirer photographer Michael Keating tells the story of these families through his own words and photos.

The Hahn Family
Melissa and Randy Hahn are dealing with a daughter that has extensive brain damage, epilepsy and a seizure condition.

Your Choice
These situations are hypothetical, yet drawn from real experiences. What would you choose?

You are a physician, free to accept or refuse anyone as a patient. Do you treat someone who has a low-paying job that does not proved health insurance coverage?
You make the choice.

How much care should your critically ill newborn receive?

How do you pay when your insurance runs out?

You're a legislator. Where do you spend the money?

Did You Know?
Ohio hasn't increased its payments to doctors seeing Medicaid patients in three years, but nursing homes get automatic increases every year. It's state law. Nursing home costs increased 31 percent in five years to $2.2 billion, making it the health care program's single biggest expense in 2001.