This past couple of weeks have worn us
health policy people down to sad little nubs. In this climate, where cruel and wildly irrational plans are proposed then taken for serious, scored and picked apart by award winning economists…Well it’s no impossible task to pull some data together showing in fact old people do deserve food and disabled children deserve health care. Mounting a well reasoned, sound argument against such insane hypocrisy is indeed possible, but exhausting and futile. Crazy doesn’t listen.
So where are we then? I’m at a loss of how to write about any of the proposed cuts, the losses in insurance coverage for the most in need. Maybe I’m overworked and underfed and teetering on the edge of freaking the freak out but I can’t bring myself to mount a statistical argument for basic human rights.
So I’m going to tell a story instead.
It was the late 1950s and everything was in black and white. A little boy who had been born a surprise was eight years old in Phoenix, Arizona. His early memories of horseback riding in the desert with his two older brothers were of always, always getting the donkey. He swam like a fish. He liked science and had a microscope with real glass slides. He had a nickname whose existence he would, after escaping to college, refuse to speak of (it was Kelly).
The boy was the baby in a family whose two oldest had already fled the troubled scene. He was a native born go along to get along. When the joints in his hands became hot and painful, he didn’t mention it. For some unknowable amount of weeks he would struggle to turn door knobs, button his dungarees, and comb his Beaver Cleaver side part. Finally, unobtrusive Kelly had to ask his mother to help him turn on the water for his bath, his hands stubbornly refusing to form a grip.
He was shopped around from doctor to doctor in the desert town. A number of perplexed specialists later my father was referred to The National Institutes of Health in Bethesda, Maryland. He was all wrong for his diagnosis. Lupus presents in women, not men. In adults, not children. All the same he was enrolled at NIH and became a patient at the Clinical Center. Without prior cases for reference, his initial life expectancy was in the range of months.
Lupus and its treatment took a toll him. At high doses the steroid bloating turned him unrecognizably moon-faced. It robbed him of physical growth. He’d never catch up to his sister and brothers, all between 6′ and 6’5″. But in defiance of his early death sentence and thanks to that Ellis Island of medicine that took him in the little boy would go on to live for months, then years, decades, and into the better part of a century. And NIH would have one hell of a longitudinal case study.
The boy went back to Catholic school where he practiced disruptive anti-authoritarian behaviors on the Sisters. He survived college despite a heavy smoking habit and special trick of putting out his cigarettes by balancing them on their filter end and waiting for them to burn themselves out. He went to work in Washington, DC and happily complied with the dress code by wearing a comically wide tie that fell several inches above his belly button. Beating the greatest odds since that childhood diagnosis, he found the woman who would be my mother and they fell in love. Exactly halfway through his medical miracle life I was born. Over the next years came my brother and my sister.
NIH saved my family by saving my father as a child. They did it again forty years later when as a teen I was diagnosed with lupus, too. A decade after that they were the ones who had funded the studies and knew the science and armed me with the best possible interventions as I ran the gauntlet of the first generation of women to attempt lupus pregnancy. I had a healthy son.
They have all of my gratitude and admiration, several hundred gallons of my blood, and the full sequence of my DNA. I owe them way more.
Thus endeth the story.
My fierce loyalty to the NIH is not only about the comprehensive care of the Clinical Center or the heroic research. Rather, I’m loyal to this national institution dedicated to protecting public health and lessening the burden of human suffering and disease. The clinicians and scientists who make NIH their life’s work are the smartest people in the world (I say WORLD because they’ve come from all over the planet to be here). Even more stunning, they are giving their gifts to public service. I don’t believe that I am entirely naive in saying the greatest dividends on investment in NIH are contributions to the welfare of human kind. Sure, I could put a number on this. But I told you I’m not doing statistics today.
PS- Sometimes I sit in the NIH cafeteria and pretend to read a book while listening to you geniuses talk about your work. Star. Struck.