11 June 2007

It really is Sicko, but a package arrived today

Donna Smith, who describes herself as "one proud American appearing in Michael Moore’s newest film, Sicko," wrote up this story about the time of her 31st wedding anniversary earlier this month. She and her husband Larry lost their home after both becoming ill around the same time. They're scraping by these days, walking wounded with him, after three heart bypasses, arguing the need for him to go back to work and her arguing that he mustn't. Donna, a newspaper editor who understands how unlikely it is that she'll ever work in that capacity again since taking up the cause of healthcare justice, wrote this up last week. Sicko opens June 29. Go see it that first weekend.

A package arrived today at my home. It was a welcome sight. It came from a friend, a SiCKO soul mate, who knows what it is to go without medications so that others might have theirs and because there just isn’t enough cash to go around.

Over the past several weeks, I have been weaning myself off of one of my most important medications, my Advair. It is the asthma inhaler that helps my lungs stay open and free from asthma attacks. And I have taken it for almost four years.
Advair is expensive. But even as the doctors in Cuba, where we went with Michael Moore, were taking me off of five other medications, including the beta blocker they said no asthmatic should ever take, they all agreed, “Take your Advair. It is perfect for you. It makes you better.”

But the doctors in Cuba don’t understand. No matter how perfect a medicine or a treatment may be for an American with health issues, unless that American has the cash to pay for the needed item or care, their body will go without.

I first started on Advair four years ago after a debilitating obstructive asthma attack that landed me in the hospital for three days. The pulmonary doctor who saw me then thought I might be helped by the inhaler, and he was right. My lung function dramatically improved with the medicine and my need for the short-acting inhalers to stop acute asthma attacks dropped to almost nil.

It seemed that within a few short months, my lung status was changed from one I feared every time I was outdoors in the cold or near one of my asthma triggers or – heaven forbid – I caught a cold, to one of a nearly normal person. Advair was a miracle for me.

But it' s pricy. Even at the local mega-discount chain pharmacy, Advair in my strength can be $200 a month.

I have insurance, but that doesn’t solve the problem. That same pulmonologist that first prescribed my Advair quit seeing me because we declared bankruptcy in 2004, and his practice group wanted cash up front from me (and then they suggested I submit my own insurance claim). I was devastated since my insurance carrier had always paid handsomely for my care and the only amount this clinic in Rapid City, SD, lost was $200 that had to be listed in the bankruptcy action. So, I couldn’t see him anymore.
I waited until spring of 2007 in Havana, Cuba, to see a lung specialist again. I never got to see an allergist in South Dakota either. The only one my family doc would refer me to was in the same practice group with that “no-dirty-bankrupt-persons” sign on the door.

But over the years, I did manage to talk my way to a continued Advair prescription from whichever doctor I was seeing at the moment. I knew it was helping me, and I knew I had to take it.

Then the bottom fell out of our lives. Insurance premiums topped $600 monthly, and something had to give. Though I was deeply grateful to be participating in the Michael Moore project, that wasn’t going to fix the problems that made me perfect fodder for the film.

When I returned from Cuba, the Advair ran out. My new insurance has a deductible to meet, and it so happened that my Advair was the medication next up on the refill queue for us. My husband takes eight prescription medications for his coronary artery disease, peripheral artery disease, and other conditions. Though I had come off several meds in Cuba, I still needed four – including my expensive Advair.

One local doctor gave me a sample that lasted two weeks, and then offered a sample of a lesser drug. I took it. But as the days wore on, I could feel my lungs starting to tighten again. The pain I had lived without returned. Climbing stairs once again became more taxing; my sleep issues worsened. My asthma was back.

And the shame is all there too. How do I tell the world that I am still a failure – SiCKO “star” and all. I cannot even manage to spring loose $200 to meet my deductible and get my medicine.

The rent, the utilities, the food, the gas for me to get to work, the insurance, the loan payments… my husband’s medications… all must be paid. And my lungs will keep hurting, and all the ground I gained over the past four years will be lost for the lack of $200.

Ask for help, you say. Borrow the money, you say. Get another job. I did but it isn’t helping enough just yet. I’m sure it will if I work a little harder. Stop whining. Buck up, buck up… this is America where if you want it bad enough you can do it.

But how do you admit that no one close to you wants to hear any more health-related trauma? They’d rather buy you dinner or almost anything else than hear you need help to buy Advair.

Grown children might send you a Mother’s Day card, but do not want to help with a prescription. And it isn’t cruelty, it’s denial. Denial that the problem with health care really is as bad as it is in America and denial that your mother is a failure at solving it.

Folks want to hear about the potential fame and notoriety of a film part. What they cannot stand to face is the reality of the situation for me and for many Americans. Thousands and thousands of people will go to bed without their meds tonight.

Being a part of a film with so much potential did not adjust reality for me – not this part of the reality. It’s going to take work and compassion and intelligence to do that over time. Whether a new president will actually tackle the issue is by no means a given, and no one has yet explained to me in a way I can comprehend why the current Congress, including so many of these presidential candidates, cannot and will not act on behalf of the Americans like me who are sinking fast.

But then a package arrived today. My SiCKO sister, more a sister than she can know, sends me the Advair samples she can no longer take. This woman, this friend, stood at ground zero on 9/11. She was made sick by it… very, very sick. Her lungs hurt as mine do, but Advair doesn’t relieve her pain. So she gave it to me.

We also lack the political and moral will to care for her – and thousands of her fellow 9/11 workers. We make them beg for benefits and fight at hearings planned months into the distance. They were our heroes held up to the world yet now they apparently are our albatrosses. Dead weight. It is incomprehensible to me that one of our elected officials does not simply stand up and honor these people by demanding they be cared for compassionately and completely. No explanation suffices for the system failing my SiCKO sister.

The health care system that brought about this chain of events is making many of us sicker than we need to be, and it is costing us so very much.

I will spend, with my SiCKO sister, the next however-long-it-takes fighting for change. The health care system in this nation must change. And it should start today, not with the next presidential election. No, Senators Obama and Clinton – and all of the rest of you — not by the end of your first terms. That’s not good enough.

But for now, I cradle my gift given with only love and complete understanding for what I am going through. Tonight I will inhale my Advair, and a few weeks from now I will breathe easier again.

No comments: