I had a great job, great family and thought things were going the way they were supposed to be.  Then came the diagnosis of Fabry's disease.  It is very rare and affects men much worse than women. 

At first they said I couldn't have it since I am a woman, but they are still learning the effects on women who have this disease.  It is a missing enzyme that causes lipids to build up on major organs, joints, nerves, and causes death early in life for many.  I was only 40 years old. 

Luckily, my diagnosis was made in February of 2004 and the FDA approved the orphan drug that had to be infused every two weeks just a few months before my diagnosis.  Sounds like things would be ok, but that drug has to be infused every two weeks....for the rest of my life.  There is no cure, but treatment is the only option for a better existence. 

The cost of that orphan drug is astronomical and it has made insurance a very valuable asset.  But, not only is the drug expensive, you have to pay to get it into your body.  My husband had good insurance and we quickly got approved and started treatment. 

Again, you think things are going to be ok.  Now the bills start coming and you see that your insurance is being billed $20,000 or even up to $30,000 to receive the treatments at the hospital every two weeks.  Insurance was the only option, but then there was the reality that insurance only lasts so long.  You think when you have insurance you are ok, but there is the lifetime maximum to worry about next. 

To cut costs I asked my doctor to let us do to the infusions at home instead of at the hospital.  That saved a great deal, but it still is costing over $12,000 every two weeks. 

I used up all of that lifetime expense in a short 3 years.  

Then what do you do when you run out of insurance?  Luckily, the State of South Dakota has a high-risk pool insurance.  But, there again was a lifetime max of one million, which is changing July 1, 2009.  Thankfully, I have a little more time. 

My options after that are very limited.  I could discontinue the treatments completely and lose the quality of life I have with the treatments. Somehow I could find a job where they are a large enough company to absorb the premiums of a patient with these expensive treatments and/or a bigger lifetime max. 

I feel like I would be a "bad" employee to get a job with a small company that pays the premiums for their employees and shortly after I am on their policy the premiums would be too high for the company to continue coverage for their employees.  Because not only do I have no insurance, but I would cause people I work with to lose out on their insurance. 

My only other hope is that you and President Obama succeed in health care reform soon.  Thank you for the opportunity to tell my story and hopefully, you can tell others how important AFFORDABLE health care can be to those who depend on it every day.

Carol – Sioux Falls, SD

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