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The Human Face of ACA Repeal: A Montana Family

The conservatives who want to repeal healthcare for 30 million Americans want us to only think about the issue in abstract terms and generalizations. It’s time to stop letting them get away with that and to listen to the stories of people whose very lives depend on access to health care they can afford. This post is the kind of story we simply cannot ignore and one of the many reasons we need to fight back.

Our story about the ACA doesn’t sound like some you may have heard. To start, we will be financially stable if the premiums we currently pay rise, even if they double. We can afford a high deductible. We still have some money in our health savings account, should we need it. I’m not saying this to brag, just to be completely honest about our situation. We aren’t alone, as there are many folks who purchased individual insurance through the ACA who don’t need or qualify for the subsidies.

Why are we worried it will be repealed without a replacement? Two words. Pre-existing conditions. And one more thing. We are in the age gap. I am 55, which means I have at least 10 years before I can qualify for Medicare. My husband is 62. (We are hoping Medicare exists when we are counting on it.)

I have a rare disease called systemic mastocytosis. The prescription medication I take keeps my body from attacking the food I eat and the environmental irritants I encounter. Without it, I am in a constant state of low-grade anaphylactic shock. Any ingredient or chemical, natural or man-made, can push me over the line to full blown anaphylaxis. Without immediate medical attention, I would likely die. Even though I take the medication religiously, I still have unexpected reactions. Part of my complicated care requires me to get regular blood tests, x-rays and specialist visits.

My husband also has a preexisting condition. It is an immune deficiency. He has difficulty getting over his frequent respiratory illnesses. Pneumonia is something we don’t like to think about. He also takes prescription medication and sees a specialist to keep him healthy.

My husband, a retired dentist, volunteers in leadership positions in the community by serving on boards in arts, health and wellness organizations. I am a part-time interior designer. I also serve in leadership positions in the community, and take care of my adult daughter, who has Rett Syndrome and requires 24/7 hands on help with daily living.

Right now, with the help of the ACA and insurance that includes us, we can manage this and keep all of these balls in the air. But if the pre-existing conditions clause is eliminated, then we lose our ability to shop for health insurance. As the premiums and deductibles rise, as they did before the ACA was enacted, they quickly become unaffordable to even the most financially stable families like ours.

In a post-ACA scenario, insurance companies can exclude any illness or treatment related to our conditions from coverage. That means we are paying a huge amount for insurance that doesn’t cover our illnesses or anything they could conceivably cause, adding to our out of pocket expenses. Don’t forget about prescriptions and monitoring of the illness, also not covered any longer. Why would we choose to buy insurance if this is true? Because of the possibility that we could get an additional illness, like cancer, that could easily wipe us out.

Please consider the far-reaching consequences of eliminating the pre-existing condition clause and the ACA. It is not just the insured people who will be affected, but their families and communities as well. When all of those balls we are keeping in the air fall, they will make for a very big mess.


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About the author

Nathan Kosted

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