How Healthcare Reform Does Not Consider the Chronically Ill
Peter Singer, a professor of bioethics at Princeton University, believes putting a dollar value on human lives is the key to health care reform. Placing a value on human life will enable us to ration health care to get the "most bang for your buck" by denying life-extending medication to someone who's terminal because that money is better spent treating someone who is not terminal. It will be more efficient.
Everywhere you look, people are debating health care reform, what it should look like, what it shouldn't look like and last weekend, Singer, wrote a piece for the New York Times Magazine called "Why We Must Ration Health Care." In it, he discusses allocation of resources and theoretical computations of the value of a human life. His leading example involves a drug called Sutent that can extend the life of someone with terminal kidney cancer for the cost of approximately $50,000. The question is how much is too much to pay for six months more of life.
I've seen this before, applying market theory to health care, using the terminally ill to illustrate the cost and not very subtly suggest that at a certain point, it's too much money, that it is not worth it to allocate scarce resources to merely extend life a few months. And it makes me wonder what such people would think of the cost of keeping me moving. Sutent costs approximately $50,000. The annual bill for Humira can be around $40,000. Not just once, but every year. For many years. What would these columnists, ethicists and economists say to that?
What is a life worth? Is it harder to assess when the person we are talking about is not in a life or death situation, but is bedridden in excruciating pain or out there living their life? Whether the opinion is that of an ethicist or economist or the person living down the street, I suspect there might be an idea about how much is too much. And as I've been thinking about this, a certain phrase keeps popping into my mind: the arrogance of the healthy.
The healthy never quite believe that illness or disability can happen to them. It is a tragedy that happens to other people, but they eat right, don't smoke, exercise and somehow, this lends a shield against illness behind which they can smugly assert that there is such a thing as paying too much for getting your life back.
But what do you get when you pay thousands of dollars to give someone back their life? I live in Canada where we have universal health care. My meds are paid for by The Trillium Drug Program, a government program that helps people with high medication costs relative to their income get the drugs they need (54% of Americans with a chronic illness report not filling a prescription because they couldn't afford it). In my case, the taxpayers of the province of Ontario spend thousands of dollars every year on my medication and this means I am actively involved with my family again, I laugh again and I make my own lunch again. However, I suspect these are too personal to change an opinion. What might change opinions, though, is that as a result of spending thousands of dollars on my medication every year, I have a job again, a job that pays me money of which I pay taxes, which can be used to help someone else like me get back their life, earn a salary again and pay taxes and... You get the idea.
Clearly, I am in favour of universal health care and not just because I have a chronic illness. The idea that someone could be denied medical care because they didn't have the money to pay for it or could have a shorter life expectancy simply because health care has become a commodity is unethical to me, even obscene. But more than that, the current U.S. system isn't cost-effective. In his article, Singer cites the numbers: the U.S. pays more for health care than most other industrialized nations and those other countries achieve better health outcomes. In other words, the current system in the U.S. gives you less bang for more bucks.
Something has to change, but so many believe erroneously that universal health care is the first step to destroying the American way of life. But isn't it a symbol of the American way of life that says "Give me your tired, your poor, your huddled masses yearning to breathe free, the wretched refuse of your teeming shore. Send these, the homeless, tempest-tossed to me, I lift my lamp beside the golden door"? Does the current health care system allow you to breathe free? Isn't one of the cornerstones of the American way of life this wonderful ability to reinvent what isn't working to allow all an equal chance for happiness? Why not apply that to health care?
So the question is this -- Who do you want to have the biggest voice in health care reform: the healthy or people like me and you? We who have a chronic illness tend to have very little energy, sometimes barely enough energy to get us through the day, but this is important. This will determine your quality of life, your ability to live your life. You have been given a rare opportunity to fight not just for yourself, but for others like you, in the present and in the future. So inform yourself, speak up, write your representative, write the President and if you have only the tiniest bit of energy today, fill out this survey on health care reforms on our site and we will send the results to the Obama administration and Congress.
You can read more of Lene's writing on The Seated View.