I Have a Kid Who Was Born at 24 Weeks. Changes to the Affordable Care Act Matter to Me.

Yesterday, the US Senate unveiled its proposed health care bill which, according to Senate Republicans, attempts to stabilize the health care marketplace and eases the burden on Americans who will lose coverage if the Affordable Care Act (ACA) is repealed. It is expected to be brought to a vote next week, limiting time for debate.

(Update as of June 27: Senate Majority Leader Mitch McConnell will delay the vote on the Senate’s health care bill cnn.it/2siSJO9).

Certain aspects of concern for a mama of an ex-preemie that were included in the House bill are not included in the Senate’s language (for example: discrimination against people because they have a pre-existing condition). Still, the bill could profoundly alter the services and supports that children with special health care needs receive under Medicaid and the ACA.

A public statement from the American Academy of Pediatrics says that “The bill includes misleading ‘protections’ for children by proposing to exempt them from certain Medicaid cuts. A ‘carve-out’ for some children determined to be ‘disabled’ does little to protect their coverage when the base program providing the coverage is stripped of its funding.”

If passed, the bill would go to a joint conference committee to resolve differences between the House and Senate bills, then back to a vote in both chambers before going to the President.

Approval of the legislation will be tricky in the Senate as it will require nearly every Republican in the chamber to vote yes. As of Friday, 5 Republicans have publicly said that they will oppose the bill.

We are lucky – we have private insurance that covered most costs during my son’s NICU stay and still today for his continued care. But without ACA, he – and many other medically complex children – would likely max out on coverage (In Will’s case, this would have happened before he turned 6 months old) and continued care, necessary therapies and life saving measures could be challenged throughout their entire life simply because they were born too soon.

In my view, any ACA replacement plan needs to hold on to key aspects of the current law such as providing coverage for people with pre-existing conditions and banning insurance companies from dropping people just because they get sick. And always ensure that patient care comes first.

I care about healthcare coverage for my son and kiddos with complex care needs like him. If this bill concerns you and someone you love, get up to speed on the key points and have your voice heard! Call your Senator and express your viewpoint.

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Or call (202) 224–3121 to ask for your Senator by name