Monday, June 27, 2005

Hey buddy, can you spare 200 grand?

People always say that money can't buy happiness. And I agree. But did you know that it can buy you life? Don't believe me? Take for instance the recent Terry Schiavo case in Florida. Terry had a great healthcare plan. Full coverage. Fifteen years of excellent medical care and not a single bedsore. In contrast, consider the Texas family of a 6-year boy who was taken off of life support over the objections of his parents, in large part because of their inability to pay for his healthcare. Apparently in some cases, money is life.

Lately I've been trying really hard to grapple with the fact that money is essentially what drives all of our lives, what we do each and every day, and in a very large way, whether we'll live to see another sunrise. We humans have more capabilities to save and improve lives than at any other time in history. Discovering a treatment or cure for just about any medical issue is a matter of time and money. We've been throwing tons of cash at heart disease and cancer for over half a century and we've made tremendous advances. I'm convinced that now is the time to throw that same effort into neurological disorders, and not just because I happen to have one.

But scientific research requires an enormous amount of money, averaging about $62 per minute. As I mentioned in a recent post, our government has already spent more money on the war in Iraq than on research and treatment for all diseases combined in the previous decade. Perhaps people against the war aren't really fans of Saddam or the terrorists after all, as some idiots have suggested (ahem, Karl Rove). Perhaps they're just asking "at what cost?", both in terms of money and lives. Minnesota's share of the bill for the Iraq war in 2004 came to $4.7 billion. That money could have provided healthcare for 608,587 people last year. Seems to me our country's priorities aren't as aligned with our 'moral values' as we like to think they are. The war in Iraq really boils down to managing hypothetical risks. Managing the risks of terrorism and the control of the middle east oil supply. I am not at risk of getting ALS. I already have it. As do the millions of people in this country fighting their own wars against a myriad of illnesses.

You may be wondering about the 200 grand reference in the title of this post. That is the estimated amount of money a family has to pay annually for the healthcare of a loved one in the late stages of ALS. 200 grand. Per year. Do you have 200 grand? 'Cause I don't have 200 grand. And we're talking the bare minimum of care here folks. You want a van with a wheelchair ramp? 40 grand. A lift in your house? 10 grand. These things aren't covered by any healthcare plan, much less Medicare/Medicaid. I've been a hard working taxpayer since I was 14 years old, and now I have a disease (one that I did nothing knowingly to cause) that could take everything I've worked for away from me. But I'm not as concerned for myself as for others, who don't have good health insurance, who don't have a good network of family and friends. I recently read about a woman bedridden with MS in Alabama say that every month she has to choose between food and medication.

ALS is, like many other illnesses, considered an "orphan disease", meaning less than 200 thousand people are living with it in the U.S. And like an orphan, such diseases tend not to feel very much love, especially in terms of government funding. Our government spends less than 400 dollars a year on a person with ALS. By contrast, even though only 20-40% more people are diagnosed with MS as with ALS every year, MS receives 10 times the amount of federal money. Makes sense though. MS patients live longer, so there is a larger patient population to lobby for money. Aha! A larger population also means more potential profit for drug companies, which is why so few companies bother to consider research for a targeted ALS drug. Rilutek is the only drug approved for ALS, and even though it doesn't do a heck of a lot to slow the disease, it still costs about $11,000 a year, and provides roughly $100 million annually to its maker. That may seem like a good chunk of money, but in the big business of pharmaceuticals, it's chump change. As I said, it's about the money. What it boils down to is that curing my illness simply isn't worth the investment by the free market (see my recent posts about government funding of stem cell research). Families dealing with an orphan disease have to beg.

But what if a drug was developed that significantly extended the life of a person with ALS? The longer we live, the more of us there are, and the more money to be made. Seems to me we PALS ('Persons with ALS') are an untapped market, with potential to make some serious cash for a willing investor. As my friends at ALS TDF like to talk about, I'd love to help make a drug company billions of dollars. Just give me that chance. But drug companies see more dollar signs in drugs that get you off, not ones that get you well.

Yep. I've joined one of the most undesirable clubs in history. Roughly 30,000 people in the U.S. have ALS at any given time, with 5600 to 8000 new cases diagnosed every year. Initially I thought that 30,000 seemed really small, but when you consider that 80% of those with ALS die within 5 years, you realize that it affects far more people (not to mention their families) than the numbers suggest. And the numbers are vague because of the wretched ways we track disease in this country. Quite often ALS doesn't show up on a death certificate. A person with ALS who dies during a fight with pneumonia still died because of ALS. But if we consider the numbers going back say, 50 years, they suggest that upwards of 400,000 people have lived and died with ALS, about the same number of Americans killed in World War II. Granted, that's me doing some bar napkin math, but the numbers are still compelling. Like a war, ALS kills people rather quickly. Imagine how many lives we'd save if we invested more time and money into preventing both of them.

And that's really my point here folks. The more I learn about how we spend our money in this country, the more I see priorities out of whack with the supposed moral values we like to pat ourselves on the back for. We like to think that we give the most of any country to the rest of the world and ourselves. But did you know that, per capita, we are 18th in the world in charitable giving? That includes government, corporate, and private giving. We're one of the wealthiest and most powerful countries on the planet, and we give the same amount of money per person as Australia. That really chops my hide. No offense to my friends down under. And props to my ancestors in Norway, who give the most of any country.

Don't get me wrong. I'm proud to be an American. I love my country deeply, and I feel incredibly fortunate to have been born here. And frankly I'm sick of seeing people have to defend their patriotism when pointing out a potential opportunity for improvement, but that's another story. We do indeed give a great deal of our time and money to help others. But let's face it, most of us would rather focus on building our own fortunes, having our own fun, watching our favorite sports teams lose over and over, and finding out if Michael Jackson is a felony convict kind of freak, or just a plain freak. And sometimes rightly so. It's hard work, physically and emotionally, to focus on the hardships of the world. But if there is one quality Americans have uniquely proven to have, it's our ability to pull together as a team, not take 'no' for an answer, and overcome insurmountable odds to make the world a better place. Perhaps that spirit will ultimately win out in Iraq. I hope the gamble will be worth it.

As for me, I'd rather see more focus on solving the immediate problems our families are facing: illness, disease, disability, pain, suffering. And not only a focus on the research to keep us alive, but on improving the quality of our lives. ALS will likely kill me. But it's entirely possible to live with it, if the right tools are available. The 2 to 5 year average death from the time of diagnosis is largely based on respiratory failure. It doesn't include, for those that choose such intervention, the time you can live using a ventilator. If you survive all the other perils until that point, you will essentially die either by accident, or by choice. But it costs a great deal of money to live that way. Equipment, 24/7 nurse care, you name it. As an inspiring ALS patient said to his friends and family, I'd be perfectly willing to be a 'brain in a box'. Just give me that chance.

I'm not just advocating for ALS. I'm talking about all diseases. All healthcare issues. And I ask you, the next time you're frustrated and complaining about taxes, please consider that at least a portion of them are going to help people like me. But a whole lot more are going to pay for bombs. Amidst the media circus surrounding the Schiavo case, a Republican proclaimed on the Senate floor, "the true measure of a country is how well it takes care of its poor, its needy, its underprivileged". A true measure indeed.

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