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My Son Could Die If the New Health Care Bill Is Passed

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Health insurance is almost always on my mind these days. Like one in four Americans, I have, as they say in the insurance world, a pre-existing condition—an illness that could disqualify me from health care plans if the Affordable Care Act is repealed and replaced with the newly proposed health care bill.

I'm a survivor of thyroid cancer. In 2008 I had surgery to completely remove my thyroid gland and then a second surgery two years later to remove a lymph node to where the cancer had spread. Not having a thyroid means that I have to get regular check-ups with an endocrinologist and take medication every day, for the rest of my life.

But that's not even the scariest part for me. What really keeps me up at night is what this means for my son, Levi, who has cystic fibrosis. We adopted Levi in 2009 and just three weeks later discovered he had CF, a genetic disease that causes mucus to build up inside the body, particularly in the lungs, and can be deadly. Levi requires daily treatments to survive—and they're not cheap. At 15 months old we had to get him a special $16,000 vest to give him at-home treatments. His current medications have copays that exceed $500 every month. There's a new drug that addresses his specific genetic mutation but the list price is $300,000 a year—so that's off the table. And that's not even counting the costs for the antibiotics he needs to fight chronic lung infections, the copays for all the visits to doctors, the trips to see specialists, and so on.

We've managed to afford Levi's care so far thanks to a provision in Medicaid for adopted children with special needs. We have primary insurance coverage through my husband's job and secondary Medicaid benefits that are keeping my son alive. But not all families with CF are so fortunate, and now there are proposals to cut Medicaid benefits as well. If mandates in the ACA are repealed, employers may not be required to offer insurance, and insurance providers will be able to reject people with pre-existing conditions, putting our family in a very precarious position. Add proposed Medicaid cuts into the equation, and our son could lose all his benefits.

This isn't just a mental game of what-if. Unfortunately, we've seen first-hand what this would do to our family. Before the ACA my husband's job at the time stopped offering insurance benefits, instead giving all employees "mini-med" plans. This gave everyone coverage... up to $1,500 a year. Just breathing in the ER could rack up a bill over $1,500, so forget about all the treatments my son and I needed. We were forced to look into "catastrophic" insurance plans—often the only option for people with pre-existing conditions before the ACA. It would have cost us $2,250 a month with a $10,000 deductible. That meant we'd have to pay $37,000 a year out of pocket before our insurance would even kick in.

When I say the ACA saved our lives, I mean that quite literally. I'm really scared about what could happen to me, and especially my son, if it's repealed and the new healthcare bill is passed as it's written now. Losing our health insurance benefits would be a major blow to our family—perhaps even a fatal one.

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