Hi! Those of you who are actually connected to me in real life may know me from such hits as “losing my job and health insurance while pregnant is pretty crappy” and “single-payer healthcare systems are great, I've lived under two different ones, and I think we should have one in the US.” It’s come to my attention that the administration has elected not to defend against a state lawsuit seeking to completely repeal the Affordable Care Act, which if the current court’s decision stands, would completely overturn the ACA, including protection for pre-existing conditions and lifetime caps - two of the most popular features of the ACA, regardless of your political persuasion. It also includes the more controversial state Medicaid expansion, which our state - Massachusetts - has very luckily taken advantage of. Guess what? This is awful and scary as hell.
With this Dravet Syndrome misery, M has a pre-existing condition through no fault of his own. He, and we, cannot “personal responsibility” our way out of this. If the ACA is overturned, and we were ever in the position of losing employer-sponsored insurance again, or if my employer plan decided to do what they used to be able to do and exclude certain pre-existing conditions, it is entirely plausible that insurers could refuse to sell us insurance for him. This would be financially catastrophic for us and a danger to his health.
Before his diagnosis last year, even with our decent insurance through my job, we dropped thousands of dollars out of pocket on his hospital stays, tests, doctor’s appointments, and so on. We were fortunate to be able to do this without significant hurt, but I can't say it was comfortable. After his diagnosis we were able to get on a Mass state CommonHealth plan, which is part of the state Medicaid expansion the ACA allowed, and it covers all out-of-pocket costs after primary insurance stops paying for children with disabilities - which Dravet qualifies as. We pay an additional premium (which is on a sliding scale depending on income) each month, but it’s worth it, and makes budgeting for our yearly additional outlays far easier.
We cannot "shop around" for his care. Perhaps we could for his epilepsy team - we are extraordinarily lucky that we live near and have insurance coverage for care from one of the best teams in the country for Dravet - but most of his care that costs so much is ambulance rides, ER visits, and hospital admissions following those ER visits. A thing that is not uncommon with Dravet is severe status epilepticus resulting in intubation in an ICU for several days. In that scenario, we wouldn't have time to shop around to different hospitals. We don't get to elect to drive him ourselves rather than take an ambulance. We have to get him the lifesaving care he needs ASAP. There is no "free market" when you're held hostage by life-or-death desperation.
If the ACA is completely overturned and not replaced with some of these important protections we rely on in place, our CommonHealth secondary insurance program goes away, and on top of that, and he could be refused primary coverage. That could quite possibly bankrupt us. Or, y’know, we could move back to my husband's country of origin, which has a default single-payer system to which everyone has access and an option for extra private insurance on top if we wished to use it, and in that country, bankruptcy due to medical bills would not be a concern for us. There are many reasons we prefer to be in the US right now, but this would easily tip the scales the other direction. We literally would not be able to afford to live here and still give M the medical care he will need for the rest of his life. And look how privileged we are to be able to consider moving to a country with a civilized healthcare system! What about the millions of others in the US who aren't in this lucky position? They get to choose between bankruptcy or electing not to get potentially life-saving care for their child. What a choice. Freedom!
I sincerely hope that you have never and will never in your lives look at your tiny baby coming out of a violent seizure and wonder to yourself whether it is worth the hundreds or thousands of dollars (WITH INSURANCE!) you know it will cost to take that tiny baby to the hospital. Forcing a parent to make such a decision is gut-wrenching and cruel. Supporting the complete overturn of the ACA without any equally functional replacement in place immediately will put a lot of people, including us, back into that position. I beg you to do whatever is in your power to keep that from happening. Contact representatives. Vote. Advocate. March. Whatever it is. Please.
Of course the ACA is imperfect. Frankly, any system where coverage for health services is driven by profit will be inherently broken. We can better, and much more tightly, regulate insurers (other countries do this!) or we can do away with them as the default and go to a single-payer system, leaving insurance companies to offer supplemental plans for anyone who can afford a higher level of access (as other countries do!). There are models for this. They work. The fearmongering here in the US about them is ridiculous. Ask anyone in those other countries if they’d rather have a US-style insurance system, and I don’t care how long they’ve been on a knee replacement waiting list, I promise you they’ll say no.
When we progressives say that "healthcare is a right, not a privilege," what we mean is that your ability to access care should not be based on whether or not you were born with shitty health luck, or happen to have a job where you can afford to drop tens or hundreds of thousands of dollars on medical bills - it means that a single national insurance plan is - AS ALREADY SHOWN IN OTHER COUNTRIES - a much more effective and ethical way than our profit-driven private insurance infrastructure to spread the costs fairly and ensure that everyone in our country can access care without fear of financial ruin. There is no healthcare equality until that is reality.
If we can send people to the moon, we can figure out how to disentangle the economics of medical care from the predatory private insurance industry. Whining about it being hard is to deny what we know perfectly well America is capable of when we make something a priority.
This is going to be a huge topic in the upcoming presidential election. I urge you, when it comes up, when you picture in your mind the type of family that is impacted by these decisions, please think of mine. Here but for the grace of God go you.
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