Next month my granddaughter will be born. I don’t know much about her yet except I hear she’s fond of changing positions in the middle of the night. There is one thing I’m sure of, though. In the baby’s first week of life, a nurse will prick her heel with a needle and several drops of blood will be smeared onto a special collection paper. Then the nurse will affix a Band-Aid, and my daughter will comfort her wailing newborn.
For me, this will be a powerful moment, even though it’s such a simple test. I’ll wince a little but smile, too, just as I did when I was a young mother soothing my own babies from the indignation of their tiny heel stick.
It’s powerful because I knew Dr. Robert Guthrie, the man who invented the test. A physician and bacteriologist, he developed the screening for Phenylketonuria (PKU), an inherited disorder not detectable by physical examination at birth. If left untreated, it results in irreversible brain damage. When PKU is identified by the Guthrie Test, an affected newborn treated by diet and medication can grow up healthy.
This moment is powerful, too, because the story behind his discovery is so distant from recent tales of pharmaceutical companies caring only about their bottom line.
Case in point: Martin Shkreli, founder and CEO of Turing Pharmaceuticals, who became a household name in 2015 when he was not only unapologetic but arrogant about raising the price of the drug Daraprim from $13.50 to $750 for a single pill. Daraprim treats a parasitic infection that can kill unborn babies and patients with HIV and AIDS.
Then there is Mylan, the company that produces the EpiPen, the life-saving injection taken during a severe allergic reaction. Since buying the drug in 2007, Mylan has raised the price of the EpiPen over 500 percent. CEO Heather Bresch has seen her salary increase by more than that over the last eight years.
In 1962, in his laboratory in Buffalo, NY, Robert Guthrie discovered something remarkable for the babies of the world. And he chose not to make a dime.
As his PKU screening test increased in importance in the early ’60s, it became clear that commercial production would be necessary to get it to as many babies as possible. Dr. Guthrie filed a patent and entered into a licensing agreement with a division of Miles Laboratories. At his direction, he would receive no royalties, but 5 percent of the proceeds would be divided among three charities for children with developmental disabilities.
When Miles could not keep up with production, Guthrie began producing his own kits in his laboratory, at a cost of $6 each, to stay ahead of the demand. A year later, he found out that the pharmaceutical company planned to charge $262 for the same product.
Guthrie was outraged when the drug company refused to lower the price. He appealed to the U.S. Children’s Bureau, and ultimately the surgeon general nullified the licensing agreement, keeping the price of the test low.
By the time Robert Guthrie died in 1995, the test that bears his name was mandatory in all 50 states. All these years later, parents still flinch when the nurse pricks their baby’s heel. Lots of them have no idea what this simple little test is.
Here’s what it is: It’s the life’s work of a man who – although famous – never wanted to stand out in a crowd, wore bolo ties though they were horribly out of fashion, and sat with his wife in the third pew on the left at church. A man who chose good over greed. In the age of the EpiPen and Martin Shkreli, Robert Guthrie’s story is a lesson for all of us who look at a newborn with wonder and hope, the way we wish everyone could.