Health Care Stories: "Even if I could get health insurance there would be no way I could afford it"

Susan should not have to choose between working and keeping medical coverage.  As a person dually eligible for Medicare and Medicaid, the prospect of national healthcare reform might open new doors for her and lower her unaffordable healthcare costs.

“I am a woman who has been living with HIV for 17 years. I have worked in an industry that consists of small companies, and therefore when I got out of college, I was unable to obtain health insurance due to my status.

I was healthy for quite a while but a few years ago got very sick. After much debt, I finally qualified for Medicaid, and then Medicare. As I have regained my health, I find myself in the same boat as before.

I want to work, to be a productive member of society, however, by doing so, I risk losing what little health care I have and my drugs alone cost $41,000 last year, and that was not including the hospital visits I had the prior 3 years!

Now at 39, with a college degree, I live so far below the poverty line that it will take a lot to dig my way out. I find myself trying to decide between living off of the government to obtain medical care, or working and lose all of it. It is a terrible place to be when all I want to do is build a future like anyone else.

I have permanent kidney damage from the HIV, among other things, but still would simply love to do what I love for a living. The reality is that I will never be able to do that and maintain my health as the system is set up now.

Even if I could get health insurance, there would be no way for me to afford it. Without a drug plan, I would not be able to survive for very long.” 

Susan, Illinois

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*Please note that actual names have been changed to protect individual's confidentiality.  Media interested in interviewing HIV-positive people about health-coverage issues should contact AFC Communications Director Johnathon Briggs at jbriggs@aidschicago or 312-334-0922.