Harry and Louise are back
One down ...
It wasn't 2,000 people, but about 75 people showed up and we had a good rally. We told stories about Mike and about other people. Danny talked about his experiences with the system, and a dozen others got up and talked about theirs. Even Trey took the microphone for a second to say he misses his Uncle Mike. Then he went over to his mom and cried his eyes out.
People who didn't know Mike came and spoke. One man spoke about the shattered mental health system; another spoke about how even people in the military aren't assured decent care.
We had two television news cameras there and now we're all fired up to do a rally in Asheville.
It's time to fix this. It really is. Nothing will bring Mike back, but maybe another mother won't have to go through what I'm going through if we keep at it.
I kept myself together through the whole thing. But I had Janet and Christian to whisper inappropriate jokes in my ear. And Shannon was there with the kids, and they always cheer me up.
Cindy McKeown came all the way from New Jersey. I could hardly believe it - but then, Cindy is one of the best people I know, so it's not really surprising she was there to support us.
All in all, it was a great day, and we're on our way to great things in the name o' Mike.
It's 1 a.m. and I'm about to fall asleep. I'm exhausted from all of this, but I was doing fine taking care of last-minute details -- until this afternoon when I wound up looking for something in the utility closet. I turned around to see all the kids' measurements on the back of the door. Meghan backed up to the door and then turned around and mentioned that she's a couple inches taller than Mike was at 12. I looked at the door and remembered that Mike spent summers in this house when his father owned it, and there were all the markings from his growing up. There's a line and next to it. "Mike, age 11." And another: "Mike age 12."
I don't know why, but it got to me. I didn't cry for the TV camera yesterday, but I blubbered like a fool today when I saw that door.
12 hours and we're there. Wish us luck.
Plaid and proud
We're just a few days out from the rally now and I'm starting to wonder how I'll fit everything I need into my car. The banner, the table, the amp, the carpet for underneath the table, photos, luggage, my guitar (so Trey and I can play a little).
And then there's the details. I've never been really good at details, so it's good I have people to back me up. Christian has been amazing. He's so into this. He's posting flyers and posters all over town, telling everybody he comes across.
This is one of the most gutsy things I've ever done. One friend asked me yesterday if we're going to get arrested, but I have all the permits and everything and we're not going to chain ourselves the the revolving door at the hospital or anything.
I told the people at Memorial Health that I wasn't going away, that I would be back with a lot of people to talk about health care. I don't think they believed me -- I'm not sure I believed me.
But here we are, permits in a row, posters up, announcements having been published in the paper, and all we need now is for people to come out and tell their stories.
I read an estimate today that 100,000 people a year are dying for lack of medical care. I know it's at least 25,000. When those numbers sound too big to comprehend, I think about how much I miss Mike -- how much we all do. I think about the pain that's physical sometimes and about how much I miss his voice and his complaining about how dumb some people are and how much he loved being out of synch with our comsumeristic culture. He was so proud of being offbeat and often inappropriate and of how he could make people gasp in horror at his sense of humor before they started laughing hysterically at how funny he was. I think about how many people have told me that he saved their lives or made them a better person.
Then I multiply that by 25,000 and that's the pain this country feels every year. What a horrible loss. How could I not respond?
It wasn't a choice
Other people's stories
We've been hoping to get some people to tell their own stories here -- a couple of friends have told me they don't want to be the first, or they don't think having to stay in a job they hate because of the insurance compares to losing a kid.
All the stories are valid. People shouldn't have to stay in jobs they hate because it's their only access to health care.
So, I want to tell three stories I know of:
Deamonte Driver: Deamonte was 12 when he died of what began as a toothache. He had Medicaid, but because the reimbursement rates are so low, the Maryland suburb where he lived didn't have any dentists who would agree to see him.
The tooth got worse and soon he had an abscess.
Still, his mother couldn't find a dentist to see him.
Then the abscess became infected and the infection spread to his brain. By the time he got help, it was too late to save his life. Doctors tried, and the treatment cost about $250,000. But it failed and Deamonte died in February of 2007.
Having a dentist pull the tooth and put him on a course of antibiotic would have cost a couple hundred dollars and he would be alive and healthy now.
Susan Searcy: This is another case that got some media attention, but then the public got distracted by some celebrity gossip and it faded away.
Susan Searcy was a widow with eight grown children who put off going to the doctor for a year despite abdominal pain and blood in her stools because she didn't have insurance and she couldn't afford medical care.
Finally she went to see Dr. Perry Klaasen, who diagnosed her with colon cancer. Of course, the cancer had spread already. She had surgery to remove what cancer they could get and a colonostomy. But she couldn't afford chemotherapy, so she went home. She died about 18 months after her diagnosis.
The doctor who diagnosed her also had colon cancer that had spread, but he had access to chemotherapy, so he lived another four years.
Klaasen wrote about Searcy in a one-page article for the Journal of the American Medical Association, and the story made a stir for a couple of days.
With both of these tragic stories, I had hoped something would change, but it didn't. Maybe we need some sort of critical mass of tragic stories.
So, here's another:
Ewart BallI worked with Ewart for five years until he took early retirement a couple years ago. Nice guy, talented photographer.
But Ewart made a couple of bad decisions when he retired. He was sort of rushed -- he wanted to avoid being named the paper's "mo-jo," or mobile journalist. He would have spent his days driving around and shooting whatever photos he came across and writing short stories to go along with them to be posted on the paper's Web site.
"I'm too old for that crap," he said.
So he retired, and he didn't continue his health insurance because it was too expensive.
A few months later, he was in an accident. He broke his leg, and before the doctors could do surgery, they discovered a problem with his heart. They didn't treat the heart problem, though, because there was no way for him to pay for it.
Ewart has gotten into the VA system now, but his care isn't well coordinated and he has developed other health problems because of the injuries he sustained in the accident. And he's still paying off the care he got after the accident.
OK, he made a bad choice not buying insurance. But that shouldn't mean he has to suffer the way he has the last year or so. In any other industrialized country in the world, he would have the care he needs. He worked hard all his life and he deserves to have his health problems treated.
But here, we don't see access to the health care system as a right. If you make a rush decision, if you get divorced, if your job is shipped overseas, you're screwed.
Just like Deamonte and Susan and Ewart and the 200,000 people who have died in the last eight years because they couldn't get basic health care.
At least somebody's comfortable
This press release from the N.C. Justice Center landed in my inbox the other day:
"Every year more North Carolinians join the ranks of the uninsured, and every year elected officials fail take the necessary steps to expand access to health care in the state. Perhaps the reason politicians are sluggish to respond to the health care crisis is because there is no crisis for elected officials. An examination of health care benefits offered to city council members, county commissioners, and the General Assembly reveals that most of the elected officials surveyed get full-time health coverage for part-time work. ..."
Read the whole report at: http://www.ncjustice.org/assets/library/1240_healthcareelected31jul08.pdf
I don't begrudge lawmakers their health care coverage, but why can't the rest of us get the same access? How about basic access? Just allow us to have the diagnostic tests and the medications that can save our lives.
And don't tell me everyone can get care in the emergency room.
Sure, the emergency room can't turn anyone away, but they can't afford to take everyone in either.
And in trying to be considerate of people they know can't afford expensive tests, they try the simple stuff first. Let's see if this is constipation and give you a strong laxitive.
OK, now let's see if it's diverticulitis. How about gastroenteritis? In a certain percentage of patients, the problem will be a simpler one.
By the time they get around to really diagnosing the problem in more persistent cases, the cancer is stage 3 and no longer curable. It's a gamble, and every year, tens of thousands of people die because the dice landed wrong.
I can't fault the hospital or the emergency room staff, but I can blame these legislators who get total coverage for free and can't get off their asses to do anything for the rest of us.
We got the official approval to use Daffin Park in Savannah in the mail yesterday. I'm excited and I'm scared, and I miss Mike so much. I know he would have loved all this attention, although none of this would be happening if he had lived.
The US Secretary of Health and Human Services, Mike Leavitt was in town yesterday and I got to cover the press conference. He was touting technology as the solution to the health care crisis. Just connect all the hospitals and doctors on a single network so people's records are more available. Medical errors go down, quality goes up and costs fall.
While that's true, it's not enough.
I asked him for an estimate on how many of the 47 million uninsured would get access to quality care as a result of all this, and he said that all this would bring the costs down.
But it won't make a $2.300 colonoscopy affordable for a student who's putting himself through college by waiting tables. It won't make a $300 mammogram affordable to a single mother who's working at a retail store.
As Scott Rogers, a friend of mine who runs a free medical clinic said, "If it's over $30, my people can't afford it."
I don't want to hear about costs coming down because of the free market. I already know it's a lie. Competition was supposed to spur lower costs and better care for people with mental illnesses in North Carolina when they privatzed the mental health system five years ago. All the free market has done is shut people out. People are dying while they wait for care. They're living on the street because they've lost their homes and they can't get care. They wind up in the emergency room and in jail -- exactly where they don't belong.
The free market doesn't want anything to do with really sick people. It wants people that will increase its bottom line, and those are people who don't get really sick
There are exceptions. There are for-profit companies that do a great job (Dan Zorn at Families Together here in Asheville does a remarkable job, but he can't expand to cover the whole state.) But they're not the majority.
Health care shouldn't be in the hands of for-profit businesses. Sorry, Dan.
Every time I hear a government official say the free market will offer people choice and that will drive the price down, I run for cover and wait for the collapse of whatever system they're talking about.
Look at what deregulation of the banks has gotten us - a mortgage crisis that threatens to send the entire country into a tailspin, a power grid that hasn't been updated in 30 years and could totally collapse, skyrocketing prices for home cable, jobs moving overseas and leaving American unemployed and uninsured.
I was talking to a woman yesterday who owns her own construction business. She had health insurance, but it didn't cover anything. It covered a couple of things that came to about a third the price she was paying for the policy, so she cancelled it. Every time she wanted coverage, there was some reason the procedure, the medication or the test wasn't covered.
The free market doesn't work for sick people. Insurance companies refuse to help the people who need it the most.
Here in Asheville, there isn't an anesthesiologist or a gastroenterologist on my insurance plan, so only 50 percent of a colonoscopy is covered. That means I pay over $2,000. When I had carpel tunnel surgery on my right hand, I paid $900 out-of-pocket.
When you sign a contract with an insurance company, you're the only one who's held to anything.
I'm so damn tired of hearing how this tweak or that little adjustment will make healthcare more affordable.
More affordable for whom? Certainly not everyday working people.
It's time to fix this damn mess, and no matter who's elected, we do have the power to hold his feet to the fire and demand something real be done to fix this.
200,000 people have died in the last eight years because they couldn't afford health care.
One of them was my beloved son. I would rather have died myself.