Saturday, September 08, 2007
The Shadow Side of Progress
Labels: speculative medicine
Here's something I've always wondered: How must it feel to be the last patient, or one of the last patients, to suffer from an illness before some amazing new treatment or cure comes along? How must it feel to be the friend or relative of one of the last people to die of a given condition before the advent of a life-saving therapy?
This photo shows two of the children who participated in the 1954 field trials of the Salk polio vaccine. It's from the archives of the Bentley Historical Library at the University of Michigan, and was displayed on a page celebrating the 50th anniversary of the vaccine. These kids look very happy, as well they should. Among other things, the Salk vaccine meant that they didn't have to be as worried about going swimming in the summer.
My sister was born in 1951, and my mother remembers worrying about polio. I was born in 1960, when we didn't worry about that anymore -- thanks to the vaccine -- although we still worried about other things. What a difference nine years makes!
If you or your child had polio before the Salk vaccine, how would it have felt to watch all those other kids getting their injections and knowing that they'd never have to suffer what you did? Surely you'd be happy for them, but wouldn't there be darker feelings, too: a shadow side of grief or regret, or even anger or envy? If only this had been available for us. A simple shot could have kept us from all that pain and agony. If only we'd had it when we needed it. If only we'd been born a year later, or it had been offered a year earlier. If only!
Here's another photo from the Bentley archives, this one from a page about polio survivor Andrea Lael Cappaert. Andrea was born in 1952 and contracted polio when she was three years old; here, clearly older than three, she's in an iron lung, being visited by her parents. Andrea's mother wrote a memoir of her daughter's illness. It's titled And God Said No.
Andrea was born in 1952 and became ill with polio in 1955. The Salk vaccine was in field trials in 1954, but according to this timeline, it was only tested on children ages six through nine. Infants and toddlers weren't yet being vaccinated, even though they were the most susceptible group. How must Andrea's parents have felt, knowing that a vaccine was available, when their daughter got sick, that could have spared her, if only she'd been considered a suitable candidate for it?
There must be many stories like this.
Think about all the people who suffered terrible infections before the discovery of penicillin.
Think about all the people who died of organ failure before transplants became possible.
Think about everyone unable to benefit from artificial joints, dialysis, or new regimens of AIDS drugs, for no reason other than a fluke of timing. It came too late for us.
Everyone I know who has a disease or chronic medical condition fervently wants biomedical researchers to find answers: treatments, cures, preventive measures. Many people in this category do whatever they to bring this about, raising money and awareness by walking, running, writing letters, starting foundations. Surely they'd rejoice if their dreams came true, even if they were unable to benefit from the new discoveries. Surely Andrea Cappaert's parents would not for a moment have begrudged any other child the protection of the vaccine.
But surely they also must have dreamed of what their own lives, what their daughter's life, would have been like if only the miracle had come in time.