My children will never have chicken pox. And I have Dr. Michiaki Takahashi to thank for that. Takahashi, who just passed away at the age of 85, is responsible for developing the vaccine that prevents children from getting the disease. According to the Center for Disease Control, “Prior to the licensing of the chickenpox vaccine in 1995, almost all persons in the United States had suffered from chickenpox by adulthood. Each year, the virus caused an estimated four million cases of chickenpox, 11,000 hospitalizations, and 100 to 150 deaths.”
While it was rarely fatal, chicken pox caused plenty of problems and Dr. Takahashi, according to an obituary in Sunday’s New York Times, was actually driven to search for a vaccine as a result of his own personal experience watching his three-year-old son suffer.
Takahashi told the Financial Times in a 2011 interview, “His symptoms progressed quickly and severely. His temperature shot up and he began to have trouble breathing. He was in a terrible way, and all my wife and I could do was to watch him day and night. We didn’t sleep. He seemed so ill that I remember worrying about what would happen to him.”
His son recovered but within five years, Takahashi had developed a test vaccine. It was in clinical trials in Japan by 1972. The speed with which this happened is quite remarkable.
But it took the FDA until 1995 to approve it for use here. According to the Times, “The delay was caused by several factors, including concerns that the immunity created by the vaccine might not last long enough, that there could be unwanted side effects and, more generally, that chickenpox might not be a serious enough disease to warrant a vaccination program.”
The Wall Street Journal has recently put out a heartwrenching and utterly fascinating e-book of how families of children with a rare disease are trying to propel scientists to find a cure more quickly. Chris and Hugh Hempel found themselves totally at sea when their twin daughters were diagnosed with “a particularly rare disease called Niemann-Pick Type C. There are an estimated 500 cases of NPC disease diagnosed world-wide, mostly children. It gradually steals mobility, speech, the ability to swallow. Patients who take ill as children rarely live beyond their teens.”
One of the problems with finding a cure for a disease that affects so few people, relatively speaking, is raising the money to fund the science. In this particular case, there is the Ara Parseghian Medical Research Foundation—set up by the family of the famed former Notre Dame football coach—which has raised more than $40 million and has helped to fund the discovery of the gene that usually causes NPC. There are plenty of rare diseases that don’t have such heavy hitters looking for a cure.
But another problem is surely the FDA, which proves to be an endless source of frustration for families of those waiting for cures. Together, the stories of Dr. Takahashi and the stories of the children with NPC are a reminder of the great possibilities that modern science has to offer those who suffer, as well as the obstacles standing in their way.