Isabel

The New York Times reported the following story in 2006:

On a weekend day a few years ago, a rural Georgia couple brought their 4 year old son to the children’s hospital in Atlanta. He’d been sick with fevers for several months that just were not going away. The doctors who were on duty ordered blood tests which shoed the boy to have leukemia.

Still, a few symptoms didn’t add up. There were some light brown spots on his skin which didn’t fit the diagnosis, but the doctors had their blood test and scheduled a strong round of chemotherapy to begin on Monday. After all, fighting against leukemia in one so young is always a race against time. While they meant well, and they followed their protocol, they had committed an error which is very easily committed. As Dr. Bergsagel, a senior oncologist at the hospital later said, “Once you start down one of these clinical pathways, it’s very hard to step off.”

What Dr. Bergsagel, nor the other doctors realized at the time was that this 4 year old boy had been misdiagnosed. He actually had a form of leukemia which the strong chemotherapy does not cure. It makes the symptoms go away for a month or so, but they soon return and each round of chemotherapy brings a serious risk of death because the body is in such a weakened condition already.

If only this error was rare. In fact, autopsies reveal that doctors seriously misdiagnose fatal illnesses about 20% of the time. Literally millions of patients are being treated for the wrong disease. The most shocking thing about that statistic, however, is that, according to the New York Times, that percentage has not changed since the 1930's. A big part of the reason for this situation is that, while we have made advancement in the treatment of disease, the emphasis on treatment has not been matched with an emphasis on diagnosis.

Jason had his little girl misdiagnosed in 1999. The doctors called his daughter’s case of flesh-eating infection, chicken pox. When her organs began to shut down, the doctors realized their mistake. Jason was so shaken by the experience that he quit his finance job and founded a company to create software that would help doctors diagnose disease. He named the software “Isabel” after his daughter.

It was that software that Dr. Bergsagel used on Monday morning when he entered that 4 year old’s symptoms into his computer. As a beta tester of the program he was immediately presented with a number of diagnostic options. At the top was the rare form of leukemia that Dr. Bergsagel had never seen before.

Now here’s the tragic part. Even though this program is available, and even though it’s 750.00 price tag per physician is a bargain given the life it may save, at the time the article was written, most hospitals had not purchased the program. The reason: Hospitals get paid to treat illnesses, not diagnose them. They have to way to recoup the money they spend on programs like Isabel.