Monday, July 9, 2007


Hey guys,

Have any of you seen the new movie that's out, Sicko? It's a documentary about the American health care system. Supposedly, America is the only developed nation in the western world that doesn't have socialized health care (instead, we have the health care industry).

It's a very interesting movie. Just don't mistake it for a piece of journalism, because it's not. It's a very biased look at the American health care system. Politics aside, it is a very emotionally moving film, and hopefully, a wake up call for Americans to start discussing health care.

Since we are such a diverse group of people (American, British, Spanish, Philippina) and we have all had more medical attention that most of our peers, I think we represent a good sample of different health care systems. I've emailed a few of you privately about how your treatment has been handled, but I was hoping people would be willing to discuss these things publicly. Namely,
  • What do you think are the benefits and shortcomings of your particular healthcare system?
  • How would you describe the quality of healthcare that you have received?
  • How has your illness influenced your ideas about the role of government or private industry in health care?
Here's my story:

Personally, I consider myself to be incredibly lucky. Before I was diagnosed, I had given two week's notice (I quit) to the job that was providing my health insurance. (I intended to go without health insurance until I found my next job, because I figured, I'm young, active, and what are the chances of getting hit by a car?) I guess my manager really liked me because he asked me to reconsider my departure and suggested that I take an extra two weeks away from work to just relax and think about coming back. I was pretty sure I didn't want to continue at my job, but since taking two weeks away was equivalent to what I was planning on doing anyway, I accepted his offer.

Within those extra two weeks, I went to get an eye exam while I still had coverage, and the eye exam led to the discovery of my pituitary tumor. I told my manager the news, and I was allowed to take a medical leave of absence instead of quitting. This single act made the difference between going through acromegaly with and without health insurance.

It's terrifying to think about what might have happened if my manager hadn’t offered me those two extra weeks. Without insurance, I might have found out about the tumor while uninsured and the cost of my MRI's, my surgery, my blood tests, and appointments with all kinds of specialists would have cleaned me out and put me in to enormous debt. The retail cost of my medication (cabergoline) right now is ~$1,020 a month, and if I were on Sandostatin, I hear it’s $2,000+ a month. That’s like a freaking mortgage! I also feel lucky because I feel like I’ve had really excellent care, but if I were uninsured I might not have been treated so well. No one wants to choose a neurosurgeon based on affordability.

There have been times when I have been incorrectly billed for things that should have been covered, so I would have to pay several hundred dollars while I argued with the health insurance company for reimbursement. Luckily, I was able to absorb the costs while the billing was getting straightened out, but again I wondered, what if I were living on a tighter budget? Also, having to argue with the insurance company (who would often tell me I needed to argue with the hospital's billing department, who would direct me back to the insurance company) is really annoying. It's precious time ticking away while on hold, pressing numbers on my phone's keypad to get through automated voice menus, explaining my situation from the beginning over and over again to different customer service reps, taking down tracking numbers to document my phone call, filling out forms, etc, etc. It's just an added aggravation that I don't need when I'm already stressed out about my health.

Even with insurance (believe me, I’m so grateful I have it), I still have co-pays and premiums to pay- I just feel lucky that I am able to afford them. If I were someone who was just scraping by or supporting a family, I'm not sure that I would be. (Note: The premium for my insurance plan is twice as much as some other ones that are available because I want to be able to choose any doctor I want.)

Even with insurance, I live in constant fear of loosing it- if for some reason I have a lapse in coverage, I'll have what's called a pre-existing condition and be "un-insureable." What if I want to pursue a new career? What if I want to take time off? With COBRA the costs of coverage is ~$500/month, just to continue coverage, but even then COBRA only covers a person 18 months maximum. That might seem like a long time, but the possibility of not finding a new job with health insurance in certain time frame is a lot of pressure and downright scary.

I think American's dependency on health insurance definitely affects their freedom. Like the example above, people get stuck in jobs they don't like because they can't go without health insurance, and the cost of insuring their family out of pocket is unrealistic, or they have a pre-existing condition. I know people that stay in relationships longer than they should in order to retain their health insurance through their spouse, and I also know people who fake domestic partnerships in order to gain coverage. The hoops people are jumping through sound absurd when people in other countries can just walk in to a hospital and walk out without paying anything (please correct me if I’m wrong).

Any and all comments are welcome and appreciated. (Since we are such a diverse group, I'm expecting some differences in opinion!)

Friday, July 6, 2007

Has Anybody Done This Survey?

I haven't completed it but I looked at the questions and I liked that a lot of them regard quality of life as opposed to just symptoms and treatment. Looking at the questions were very thought provoking, because it makes you take inventory of yourself.

If anyone is comfortable sharing their answers, I would be interested in reading them...

Tuesday, July 3, 2007

Hey Everybody!

Great idea Ellen. I'm glad to hear Almu's surgery went well, and that Alecia's found Cess. It's amazing to me that there seem to be so many of us out there when we have such a rare disease. Thanks again for all of your support. It's been nice to exchange stories and information, to know we're not alone in this.