The High Cost of Low Expectations

by Beth Skinner

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Sometimes it’s hard to understand a big huge issue like health care from 30,000 feet. Here’s how things look to me here on the ground.

I’ve got an auto-immune disorder called scleroderma. Twenty-five years ago, when I was 24, I started losing feeling in my fingers and toes. Then feeling would come back like pins and needles. Then my skin would flush blue or white. Then I got wounds that turned gangrenous. Then I had amputations. Over and over and over, I lost little parts of me. Now I’ve got 3 fingers left – I’ve lost all my other fingers, all my toes and the front half of each foot. And that is sort of a relief because there’s not much left to lose now. And I don’t have to be in constant pain. Imagine 25 years of frostbite – that’s what it has been like.

Less than half a million people in the US have this condition. It’s a rare disorder. It requires a lot of medications to manage. Every day I take 38 pills. I should be taking more, but I can’t afford them anymore. One of those drugs is Viagra which is made by Pfizer. This drug works by opening up closed blood vessels. That’s how it works to treat erectile dysfunction. It would also open up my blood vessels and allow my body to heal wounds. It did work for me for 8 years. And then a move to a new job meant a move to new insurance, which wouldn’t cover Viagra for me anymore. That winter I lost 3 more fingers and half a foot. Viagra is expensive. It would have cost me $2,000 per month –and I can’t pay that– so we arrive here today.

As it turns out, I was not a very profitable investment for society. I went to school for 25 years – kindergarten through graduate school. Almost all of this was paid for by taxes, grants, fellowships and scholarships. Not a bad risk if you think of the value a college professor could contribute to the world in terms of knowledge, research or even just paying taxes. Instead, I’m living on $1,400 a month in disability and Medicare. You pay for that. In the last year I’ve had surgical procedures more than a dozen times. Those costs, again, paid by you as taxpayers, were more than $100,000 this year. Absent some miracle breakthrough you will be paying something like that each year for the rest of my life. And then there are the hundreds of thousands of other people with my rare condition. There are all the many millions of people with other debilitating conditions. And then there are the 30 million who are still uninsured. And on and on.

So what does this have to do with politics? I’ve thought about this a lot and I’ve read a lot and I’ve talked with a lot of people. I don’t think that America can survive with the health care system we have now. Without single-payer health care, private insurance companies will continue to make short term decisions about profits (for shareholders) that don’t take into account the long term costs (for taxpayers). If this is all just about profitability, then I ought to call it quits for your sake – I am a drain on society and I will be for the rest of my life. My hope is that our nation believes person’s worth is not measured merely by whether she hurts or helps the bottom line of a corporation.

Here’s my bottom line. If the richest, most technologically advanced civilization in the history of the planet chooses not to guarantee health care to all then we should be ashamed. I don’t have money to compete with the campaign contributions from drug manufacturers and insurance companies. I don’t have lobbyists. I’ve just got my vote and my voice. I’m using the strength I have now to fight for universal health care because I believe we all deserve better.

Fight with me.

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3 thoughts on “The High Cost of Low Expectations”

  1. Hi Beth. Thank you for having the courage to talk about what must continue to be a very difficult struggle for you. I work in the health care industry and I agree that we need single payer. I was very disappointed at how quickly this option was taken off the table and I continue to be disappointed by the failings of the ACA, including the high cost of drugs. But I was very excited to be able to offer care to hundreds of newly insured patients, some of whom had not had a primary care provider since childhood. Please continue to speak out for all of us. The profit making motivation really confounds healthcare across the board. It does this in so many insidious ways but all combine to make the system less effective and less efficient. You are proof of that, for which I apologize on behalf of my profession, and my country.

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