Saturday, September 08, 2007

The Shadow Side of Progress


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.

7 comments:

  1. There is a lot of truth to what you write...

    On the other hand, sometimes that rush to a cure has a much darker side.. it was around the same time that doctors found a cheap, miraculous cure for morning sickness in pregnant women, and rushed thalidamide out to the US... Only to find out what devastating birth defects it caused in the children of women who took it...

    I can well imagine all of those mothers who felt the burden of, "If only I hadn't complained about my morning sickness so much", or, "If only they'd tested it more..."

    As with any decision, hindsight is always 20/20 vision....

    An excellent, thought-provoking post, though

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  2. This post is wonderfully insightful, Susan. I remember taking polio shots as a child. I was later given the drops on a sugar cube or animal cracker. It was a much nicer way of being protected. I can remember meeting people who survived polio. Some fared better than others in the amount of physical damage they sustained. Even today I know people who have diseases that we wish there were solutions. Most notably, a friend was recently diagnosed with Alzheimer's. I pray for him every day because he volunteers at the Alzheimer Center helping people apply for benefits and just being a good ear, I worry how much his future scares him. He manages to be always cheerful which is one reason we all love him.

    May this country's doctors, pharmaceutical companies, research organizations and government be wise in the ways of handling medical progress and may those in a position to make necessary decisions make the best choices for all concerned.

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  3. My father, born in 1942, was one of the last to contract polio in the U.S. His mother was a nurse and immediately recognized the symptoms, fortunately. He shows no signs of it now, but one of the other nasty things about polio is that it can strike again late in life, I understand.

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  4. You put into words something I think about a lot. I lost my son in July to Neuroblastoma, a devastating childhood cancer. He participated in many clinical trials and was the very first participant in one of them. The doctor told us it could be curative. We split up our family and lived for months in another city, only to have the trial fail. I am not bitter that the trial failed, because we never believed the "curative" description. I am thankful that we had one last chance to try to save our child's life - even though the cost was great.

    Earlier in his battle, when he was in remission from his first relapse, we were told he would be able to get a promising new vaccine in a few weeks. Two years later - they are still promising this vaccine will come out "in a few weeks". When it finally does come out, I will have mixed feelings. I pray it really does keep kids in remission, but if it actually does, my heart will ache that they did not get it out there soon enough for my son.

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  5. This is currently a hot topic both in research ethics and in law, as I've noted here.

    Being between you and your sister (1955), I remember both shots and sugar cubes, and also people still getting polio, and a great deal of fear about it all. I've also seen an iron lung in use - a distinctive experience indeed. I appreciate the anxiety of many families none of whom wants to see their loved ones as the last before the treatement is proven. And intellectually I know there will always be someone who's last. Like the man born blind, it's an opportunity for us to demonstrate the love of God.

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  6. This is an interesting topic. It can definitely be frustrating to know that a cure or really promising treatment is "Just around the corner", or know it's out there, but you can't use it because you're not "suitable" for it. That's what happened to me this summer, because of the weird heart and blood pressure issues. I was a half hour from trying a drug infusion when it was decided it wouldn't be safe. That said, there is no direct threat to my life from RSD.

    It's hard because you want a good cure or treatment, but you also want to benefit. I don't begrudge others the chance to benefit from this drug, I just wish I could too...

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  7. Anonymous6:17 AM

    Susan: Nice reflection on your part about those people like my sister, Andrea Cappaert, that got polio just before the appearance of the vaccine. There is a lot I could say, having been born in the year after my parents began coping with the consequences of my sister's disease. For our family, it was a defining tragedy but also an unwelcome--but ultimately accepted--opportunity to try harder, to be more creative, and to engage deeply with all of the people around us.

    You wonder how the parents of a polio victim in 1954 might have felt about just missing the cure of the vaccine. Of course they felt many things, and those feelings are central to a book my mother wrote. But I can tell you that my parents never expressed to me that they felt victimized by fate. The main idea was that you just go on.

    -David Cappaert cappaert@comcast.net

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