By Emily Kaiser, Star Tribune
WASHINGTON - When Lisa Benson gave birth to premature twins, Sophia and Anna, doctors faced a lot of complications, not the least of which was Sophia's rare heart defect.
The cost of the drug used to cure her condition in 2006 had risen recently from $108 to $1,500 per treatment, or by more than 1,200 percent.
But the Bensons were lucky: Children's Hospitals and Clinics of Minnesota paid the difference.
For some families, astronomical increases in the price of prescription drugs for rare conditions aren't covered by a hospital or insurance, leaving parents with a choice between drug treatment and risky surgery that could cost more than their mortgages or monthly incomes.
"It's heartbreaking to hear that," Lisa Benson said. "It's not a position any parent would want to be in."
Cases such as the Bensons' were highlighted Thursday by two Minnesota medical experts who testified at a congressional hearing exploring sharp price increases for some prescription drugs used to treat rare conditions.
The hearing was conducted by Sen. Amy Klobuchar, D-Minn., who has called for a Federal Trade Commission investigation into companies' pricing practices.
The drugs' producers say the price increases aren't a result of gouging but reflect the costs of producing low-volume drugs that might not otherwise exist.
But the increases have caught the attention of health experts in Minnesota and across the nation.
Madeline Carpinelli, a University of Minnesota pharmacy research fellow, was one of those who testified Thursday.
Her research found that, in the past two decades, one in 20 brand drug products from single sources had price increases of more than 100 percent at a single point in time. There were six price increases ranging from 1,000 percent to more than 3,400 percent.
The drug used to treat Sophia -- Indocin -- was sold by drug giant Merck to Illinois-based Ovation in 2005.
The price increase that followed cost Children's Hospitals and Clinics $150,000 and more than $2 million nationwide at major children's hospitals, testified Alan Goldbloom, chief executive of Children's Hospitals and Clinics.
But the companies producing these drugs insist they are providing treatments that otherwise wouldn't be available, and physicians have praised the companies for keeping low-volume treatments on the market despite the high costs.
Ovation spokeswoman Sally Benjamin Young said the prices of their products reflect the cost to buy the drug, update current manufacturing standards and continue small production lines.
"All of these older, but important products were at risk of being discontinued," she said. "We have invested in them to ensure these small numbers of patients who benefit from these products have them available when they need them."
Klobuchar said she is pressing for closer scrutiny of drug pricing.
"If we start to monitor this data, there is more of a paper trail, giving us enhanced ability to do something about these companies' practices," she said.