May
2007
The Cure
One of the things I love about healthcare is that communities of patients and caregivers come together to do more than treat conditions. They create support groups, they advocate for research dollars, and they spread the word about the medical conditions that bring them together. For the patients and their families, the medical condition, be it cancer or MS or Down Syndrome, defines their lives. It becomes a part of who they are. For the caregivers, it is the passion to care and cure that drives them.
They become experts and advocates.
But what happens when the “fight for the cure” has unintentional side effects? What happens when there are fewer and fewer people with the condition? What happens to the community then?
Such is the problem for patients and families with Down Syndrome. In a wonderful video on the New York Times website, journalists Amy Harmon and Kassie Braken explore the shrinking world of children with Down Syndrome. With the early detection of down syndrome in fetuses and the extremely high termination rate of those pregnancies, the prevalence of children with the condition is sharply declining. And with that decline comes a loss of shared experience and knowledge about raising children with Down Syndrome, about their life expectancy, and about who they are as individuals. In the case of Down Syndrome, “finding the cure” (indeed termination is in no way a cure) comes at the diminishment of the community.
Healthcare is full communities that are fighting for cures. The fight for the cure gives purpose, and sometimes meaning, to people that are struck, at random it often seems, with disease. About once a generation we are able to cure a disease and with billions of dollars spent on medical research each year that rate is bound to increase. As we celebrate the victory of our medical discoveries we need to remember to care for those that weren’t lucky enough to come after the cure, those for whom the cure is bittersweet.