Voices of Care: Mendy in Virginia
This blog is part of an ongoing series of stories from people across the country who would be negatively affected by the ACA repeal bill currently being negotiated in Congress.
My family’s whole world was turned upside down in September 2015 when my husband, Ed, survived a massive stroke caused by hypertrophic cardiomyopathy (HCM). Doctors knew that he had HCM beforehand and they had taken preventive measures, including placing a pacemaker in. But still, nothing could have prepared us for what happened next.
The stroke left Ed severely disabled - he lost the ability to verbally express himself, needed a wheelchair, and required help with all basic functions, including bathing and toileting.
When the stroke hit, Ed was working for an insurance company and I was a stay-at-home mom. His employer was kind enough to keep us on their health insurance for as long as they could. But within a couple of months, it became apparent that the damage was too severe, and Ed’s recovery would take too long. His employer had no choice but to let Ed go, and with that, we lost our health insurance.
It was frightening - I knew that Ed needed help and that COBRA was too expensive at $600 a month.
A friend recommended that we make an appointment with a navigator at a local health center. I had no idea help like that even existed, but we walked out of an appointment with a silver plan for $15 a month after the subsidy. Our son was able to receive coverage through CHIP.
The insurance is the best insurance that we could ask for—it covers Ed’s physical therapy, speech therapy, our family doctor, his cardiologist, neurologist, and all of the medications he needs to make sure he doesn’t have another stroke. It also gives me the freedom to stay at home as his full-time caregiver while we focus on his recovery.
Almost two years after the stroke, Ed can move around with the help of a cane, but he still needs assistance standing. And he still struggles recalling words. We still have an incredibly long road ahead of us in his recovery.
I feel helpless, broken, and terrified at the thought of Congress repealing the Affordable Care Act.
What are we going to do if we lose access to insurance?
We cannot afford insurance without the help of subsidies.
We have no other way to pay for the doctors and treatments that are making Ed better.
If there aren’t protections for people with pre-existing conditions, Ed won’t even be able to get a plan because of his heart condition.
There’s over a year left until he qualifies for Medicare, but even then, what would happen to my care? Or my son’s care? We need insurance, too.
I’m not being dramatic when I say this is life or death. My husband will die if we lose access to affordable coverage.
And what’s more, hypertrophic cardiomyopathy is hereditary. Our kids have a 50/50 chance of developing it at some point in their lives and as a result, they will need testing every 1-5 years. We’re terrified that if insurance companies are again allowed to discriminate for people with pre-existing conditions, that our kids won’t be able to access the screenings to know if they have HCM and worse yet, that they won’t be able to get care if something does happen.
I wish lawmakers could understand that they are cutting our family's lifeline. And for what purpose?