My name is Melanie Wagner, I am 44 years old, and I live in Greene County. I have a rare disease and even though I have insurance, it does not cover the specialists that I need. Over the last 5 years I spent an average of a month in the hospital each year and have had surgical intervention 2-3 times a year. I do not feel that my doctors can choose the healthcare I need because insurance deems what tests I get, what procedure I have, and how long I can stay hospitalized.

I am self-employed, so I wait as much time as possible between procedures, because I don't get paid for recovery time. My husband hates his job but we need the health insurance, so he is afraid to look elsewhere, even though the insurance costs us about $130 a week plus the copays and medicine which cost me $5229 out of pocket last year. Many people in my support group cannot afford the copays for medicines and treatment.

It gives me hope for the future that the New York Health Act is a possibility now. My daughter inherited my rare kidney disease, and I am trying so hard to make her road smoother than mine has been. Right now, insurance controls everything. Let’s free our doctors to make health decisions for us instead!