By Sharon Thomas

I had health care coverage when I found out I needed a life-saving heart and lung transplant for a disease called pulmonary hypertension. However, my insurance denied the treatment I needed. Despite the advice of my doctors, they called it experimental. I was left stranded, fighting for my life and trying to find a way to pay for treatment at the same time. It was inhumane and unfair.

Insurance should be a safety net. At the time I needed insurance the most, however, the system failed me. I had to plead with friends and acquaintances to help me raise an astronomical amount of money just to stay alive to see my two young daughters make it to kindergarten.  Denying coverage for pre-existing conditions, or any medical need, robs families like mine of a future together.

They told me that I would only live five years. I’m now in my thirtieth year of life with a heart and lung transplant. I am not a fan of every aspect of the Affordable Care Act (also known as Obamacare), but as our leaders debate health care and health policy they should be very careful to keep the parts of the legislation that Americans want and desperately need.  We must protect coverage for people with chronic conditions like pulmonary hypertension.

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PH Bill

The Thomas Family: Mike Thomas, Sharon Thomas, Amy Thomas, and Shawna Thomas.  July 17, 2017 was Sharon’s 30th anniversary for heart heart lung transplant.  Her daughter, Amy also gave her a kidney more than three years ago.

This post is part of PHA’s The Right Heart blog series. Find out how you can share your story. Click here.