What if they repeal Obamacare? Then what?

By Debby S., Philadelphia, PA

How is my family going to respond to this?

That’s what I’ve been turning over and over in my mind as I watch Congress moving to repeal Obamacare.

In my fifties, I learned why my father died at age 43, and why my paternal grandmother had a series of strokes that rendered her bedridden for most of her life. My family has Fabry, a rare genetic disease — and one that I unknowingly passed on to both of my daughters. A series of tests demonstrated the degree of damage that had already occurred for us, and the most eye-opening one showed that one of my teenage daughters had already had a stroke.

There is no cure for Fabry. The only option as of now is a biweekly enzyme replacement infusion, which isn’t a cure-all but at least a step in the right direction. My husband and I are proud of our daughters who, in the midst of their busy young adult lives, face this disease head-on and spend two to six hours in treatment every two weeks. It’s not easy.

With the cost of each infusion being between $14,000 and $22,000, it’s easy to understand that it wouldn’t take long for us to reach the lifetime cap insurance companies once imposed before the Affordable Care Act became law. And then what?

And what if our daughters become unemployed, forcing them to find insurance with a costly pre-existing condition? Without Obamacare, that would most likely be impossible. The billable cost of treatment without insurance would be horrific.

We also know we’re not the only family who’s afraid of Obamacare being repealed. Take a stand with me — say you’ll help protect the law that’s helped so many families, just as it has mine.

I cannot tell you how relieved we were when the Affordable Care Act passed and eliminated lifetime caps and denial of coverage based on pre-existing conditions. For our family, it meant living a somewhat normal life, even if we’re often in treatment. It’s unacceptable that Congress wants to abolish Obamacare instead of building on the successes of the law and continuing to improve access to care for all Americans.

Don’t stand by and let Congress rip health care away from us — from so many. We should be taking care of our people, not throwing lives in jeopardy to put points on a political scoreboard.

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Originally published at www.ofa.us.