Possible repeal of Affordable Care Act leaves Tampa family in limbo

Karen Clay with her son, Mike Phillips.

TAMPA, Fla. (WFLA) — In a stunning defeat Friday, the Senate rejected a new, scaled-down Republican plan to repeal parts of Obamacare. As the marathon session stretched late into Thursday night, Senator McCain shocked his colleagues by casting a deciding “no” vote, provoking gasps around the chamber as millions of Americans breathed a sigh of relief.

If the bill had passed, millions of Americans would have found themselves in a health care coverage crisis.

“It’s terrifying to think about what can happen to people like Mike,” said Karen Clay.

Karen’s son Mike was born with a rare genetic disorder—doctors gave him just one year to live. But 36 years later, he continues to prove them wrong.

Mike depends on a ventilator to breathe and must be fed through a tube.  He uses sensors on his forehead to communicate. Without Medicaid, he would be forced to live at a hospital, which would cost the family tens and thousands of dollars each month.  Right now, his mom gets a tenth of that to take care of her son at home.

“How do you live in limbo like this? You have no choice,” said Clay.

Barry Edwards, a political analyst, calls the repeal attempt a massive cut bill for the rich and says it leaves people like Mike to suffer even more.

“With the daily votes on a different bill, there’s a lot of heartache and it’s not fair to the citizens of the United States. The Republicans should get with the Democrats, repair Obamacare and move on,” said Edwards.

But for now, as the family is stuck in Medicaid limbo, the future of Michael’s care is still uncertain.

“We don’t know how we’re going to do it, but we’ll do it. We’ll find a way.”

Using the sensors on his forehead, Mike left us with the following message:

“We have to speak out. We have to protest in the streets. It all seems bizarre enough to be reality TV but sadly, it’s pure reality.”

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