Gina Mazer, Montpelier
I have a chronic, genetic illness called Gaucher’s Disease, which means I need to receive an infusion of an enzyme that I am missing on a monthly or twice a month basis, at the hospital. This replacement enzyme (called Cerezyme) is extremely expensive, so much so that if my insurance has a lifetime cap on it, I am likely to exceed even a one or two million dollar cap. A single treatment costs about $20,000!
My disease is rare and only one company manufactures this enzyme. Hence, the extremely high cost of the treatment. Without the treatment, this disease can worsen, resulting in fatigue, weakened bones, lower and lower platelet counts, and enlarged internal organs such as the spleen and liver.
What I find challenging about our current health care system is that my health is tied to my being able to procure decent insurance, generally through employment, that is affordable and doesn’t have a lifetime cap on benefits. Being currently unemployed (and on COBRA) I realize I have a finite amount of time in which to figure out my next source of health insurance. Our state plan (Catamount Health) has a lifetime cap on benefits; otherwise that might be a good option.
My partner (we are not married) can add me to his plan, but it has an extremely high maximum out of pocket (I believe it is $12,000 a year for a family), which is challenging to our budget! I would love to see health insurance not be tied to employment, without a lifetime cap on benefits, and without excessive out of pocket expenses. People with chronic health issues deserve to live without the anxiety of wondering if health care is going to continue to be available to them. I hope that my personal story can be helpful to the healthcare for all campaign.