System Failure

To Whom It May Concern (And Who Does It Concern?):

For the most part, my political days are over. I marched on Washington a few times in the name of animal rights back in 1990-1991. Since then, most of my views have fallen more into the gray area. Even on those topics that I still get fired up over, I have lost faith that my lowly opinion would have any influence of our massive governmental machine. When I am in the crossfire of a political debate, for the most part I keep my mouth shut. I just don’t see the point in arguing.

I am writing a book that holds the potential to explore many of our country’s political healthcare issues. In fact, sometimes I feel guilty for not being more involved in that aspect of patient care. Nonetheless, my focus tends to be more on my immediate experience and those things I deem to be within my power as an individual. I don’t really want to deal with politics.

That said, I am feeling nervous about my future and I can not deny the impact our government could have on my life in the coming years. I began working a part time job about six months ago. Because I have been on disability and Medicare, it was my duty to report that I had gone back to work. I’m not nervous because I have done anything wrong. I am nervous because there are a lot of rules and I don’t want to make any mistakes. If I do, I can potentially lose my disability status.

When people learn I am on disability, they sometimes react with surprise. They think because I can walk, talk and stand upright that I should no longer be taking anything from the government. People may judge me because I am on disability but what they don’t understand is that I do not have the energy to work a full time job and I need Medicare. Medicare is directly linked to disability status.

I quit college because of my health and therefore my skill set is limited to lower paying jobs. I do not get benefits where I currently work and even if I did, it’s highly unlikely the office could handle some one like me on their group insurance. I have to approach my work schedule carefully so I can keep my disability status. If I lose my disability, I lose my insurance. Can you even imagine the “pre-existing conditions” list on my private insurance application?

The chance that I could find a company to work for that could provide me with insurance is slim. The prospect that I could pay for my own is simply impossible. What would someone like me do without insurance to pay for all of the transplant medications? The answer to that question is easy: they would die.

All of those ponderings are head spinning but that doesn’t even take into account what would happen if I became terminal or chronically ill for the third time. I would have to quit my job and apply for disability again. What would happen to me in the meantime? How would I survive while I was waiting for Medicare to kick back in? The thought scares me to the bone.

It seems to me a rock and a hard place. If I work, I run the risk of losing necessary, life sustaining government funded coverage. If I don’t work I am not fulfilling the entire goal of transplant: to live a more normal life. Like so many governmental programs, this is one more example of a good idea with no plan to help transition people from one end to the other.

I really have no right to complain. Compared to many other people, I have it good. I have been able to be on Medicare for ten years and have been able to have my father’s insurance as back-up. Medicare paid for two very expensive lung transplants. My insurance pays for a regimen of medication that, in one month, costs about as much as my rent for a year. I am very lucky to be alive and to have gotten the care my insurance provides. I really have no right to complain but I am going to anyway.

I did not get this transplant so that I could sit at home on the couch and collect government money. I also did not go through all of the pain and suffering so that I could live a more normal life, get a job and turn around and lose my insurance. How silly would it be, after all of this, to die because I can’t afford to buy my transplant medications!

Things just don’t add up. Medicare will pay for surgeries that cost a million dollars but won’t follow through and pay for the medications that keep you alive afterwards unless you promise to make less that a certain amount each month? I don’t understand. All I want to do is go from being sick to making a contribution to the world. The organizations that got me well are the same ones standing in my way.

We need a bridge for people like me. Where is the bridge?

Sincerely,

Tiffany