Our Healthcare Story: Why Repealing the ACA Would Be Disastrous

I graduated from college at the end of 2008, in the middle of the recession and just before President Obama took office -- not the easiest time to be thrust into the "real world."

My on-campus job let me keep working part-time for several months after graduation while I looked for another job, but that of course didn't come with health insurance. I was uninsured for a couple of months and relied on Planned Parenthood for basic needs until I decided it was time to apply for an individual health plan.

The application asked all sorts of questions about my health history, and I remember wondering if anything in my file would make them reject me.

My application was approved, however, and a full 25% of my income started going toward insurance premiums. Between that and rent, there wasn't much left over. Thankfully, I only had to do that for a few months before landing a full-time job with benefits.

Fast forward to late 2013. By that point, I was married to Eric, a freelancer with no employer group plan to add me to, and I'd stopped working full-time to go back to school. Our insurance was going to be terminated soon.

This time, we were able to get individual coverage at a reasonable price, thanks to the Affordable Care Act and the newly-created, subsidized insurance marketplaces. Questions about pre-existing conditions were noticeably absent from the Covered California application.

The Advance Premium Tax Credit allowed us to afford to maintain coverage until I got another job with benefits. We eventually decided to start a family, and I planned to go back to work after a few months of maternity leave.

Then, when I was 26 weeks pregnant, our son ("Jojo") was diagnosed with heterotaxy syndrome and several complex heart defectswhich would require life-long, specialized healthcare from the moment he was born.

We were covered by my employer for about 6 months after Jojo was born, while I was still protected by FMLA and CFRA.

In those 6 months, he became a member of the "million dollar baby" club, with insurance paying for multiple open heart surgeries, cardiac catheterizations, and frequent outpatient care.

I shudder to think about what we might have faced if we had to worry about annual or lifetime caps.

At the end of my protected leave, we decided that it was best for me to resign and continue to stay home to care for Jojo. Now that we were down to one income, Jojo became eligible for Medi-Cal (California's version of Medicaid), and Eric and I re-enrolled in a subsidized Covered California plan.

The Affordable Care Act, with its provision to expand Medicaid coverage for adults, was there for us yet again last summer.

Typically, summers are Eric's busy season of work that float us through the slow winters, but since Jojo was in and out of the hospital so much, he wasn't able to take on a full summer workload.

That drop in yearly income made Eric and I eligible for Medi-Cal too, and all 3 of us have been on it ever since.

It terrifies me to think about what might happen when we don't qualify for Medi-Cal anymore and we have to go back to the individual insurance marketplace, with all of the efforts underway to repeal the ACA.

The massive proposed cuts to the Medicaid program are also very scary when it comes to Jojo's care.

Currently, Medi-Cal covers EVERYTHING he needs, without any push back. I'm sure he's part of the $2 or 3-million dollar baby club by now, after additional surgeries, hospitalizations, and the like, but I don't know for sure because I haven't seen a bill in a long, long time.

Oh, and I'm also 9 months pregnant. 

When I learned I was pregnant again, I felt at ease about not having gone back to work yet, since we would either stay on Medi-Cal or could always get back on a Covered California plan.

Now, unanswered questions keep running through my head:

"How long do I have before I need to go find another job with benefits?"
"How would we even manage to find qualified, affordable childcare for a medically complex child so that I can go back to work?"

The peace of mind I had before, when the ACA was more firmly in place, doesn't really exist anymore. Our whole family depends so much on having access to healthcare; it underlies every major decision we make in our lives, and being on such shaky ground now feels so unsettling.

As I state in my little manifesto of sorts, "my hope is to humanize the debate while sharing our story.  I did not create this site with the intention of using it as a platform for a hot-button topic, but I quickly found it impossible to write about anything here without being reminded that access to healthcare is the backbone for our entire existence."

The effort underway in California to implement a single-payer healthcare system (Healthy California Act, SB 562) gives me some hope that, no matter what happens in Washington, D.C., we might still be okay. But there's just so many unknowns for my liking, amid such a heavily-politicized topic.

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