What the ACA Has Meant to Me: Coverage of Pre-Existing Conditions

Part II of a three-part series.

I’ve been following the current controversy and debate about the Affordable Care Act (ACA) with some trepidation. There is certainly room for improvement in the legislation and steps need to be taken to reign in increasing healthcare costs. That being said, as a person with rheumatoid arthritis (RA) I shudder at the thought of returning to the pre-ACA days (see part I of this series for statistics). That’s due to key provisions in the ACA that have been very important to me.

As it turns out, the provisions that have been of greatest personal benefit are also the most popular nationally. A recent poll showed that 92% of Americans support the requirement that health insurers provide plans to people with pre-existing conditions, and 79% support the provision that allows children to remain on their parents’ insurance plan until the age of 26.[1] This article will focus on coverage of pre-existing conditions, and part III of this series will focus on dependent coverage and removal of lifetime benefit caps.

There are many stressful factors of having a disease like RA, a degenerative condition without a cure.

There is a wide variety of medications that can mitigate the disease and in some cases even cause medically-induced remission. However, these medications are among the most expensive on the pharmaceutical market. For me, medical treatment makes the difference between living a productive life and being so mired in pain that I can barely move. Therefore, I don’t view going without treatment as an option, yet without insurance it would be unavoidable.

Being diagnosed with RA at the age of 22 after years of symptoms, I have structured my adulthood around maintaining health insurance. I was 32 when the Affordable Care Act went into effect, and the decade between my diagnosis and the ACA were fraught with health insurance worries. Before the ACA, it was imperative that I maintained “continuous coverage.” The importance of continuous coverage was that pre-ACA, even major employers with big group plans could deny eligibility of health benefits for the first year of employment for new employees who had pre-existing conditions and did not have health insurance. It was an RA catch-22: I had to have health insurance in order to get health insurance. Therefore, I could not let my coverage lapse.

Here’s what maintaining continuous coverage involved for me. After graduation, I took college courses I didn’t need because my parents’ health insurance would cover me until the age of 26 if I was a student (a provision ahead of its time that I’ll discuss in more detail in part III of this series). I priced an individual plan, and with my pre-existing condition my premium would have been $1,800 a month with a $6,000 deductible. It was cheaper to pay for college courses I didn’t need and stay on my parents’ insurance than it was to be a young person with a chronic condition on my own insurance plan.

I then proceeded to get my master’s degree sooner than ideal for my circumstances so that I could finish while on my parents’ plan. There were three months between graduating with my master’s and starting a job with benefits, and during that time I paid for a COBRA plan. It was crucial that I not let my coverage lapse, or else the jobs-with-benefits I was angling for wouldn’t have to cover me for the first year due to my pre-existing condition. Even though the COBRA plan’s premium was $1,200 a month, I couldn’t afford not paying it. While paying $1,200 a month on top of the actual treatment expenses required me to go into debt, not paying that premium would have meant going my first year of employment without my standard treatment. The uninsured ticket prices for biologic RA medications can be as high as $50,000 a year, and my credit limit would have maxed out before I reached the year’s end.[2]

Even with the ACA, many jobs in the U.S. do not provide health insurance for their employees.

While the continuous coverage clause and the additional costs it involved were hardships, I was fortunate in landing a job with a large employer that had a benefits plan that would cover me. I know that not everyone has the benefit of the education and training I have received, and cannot get jobs that provide adequate benefits. That being said, there were a couple of dream job opportunities I couldn’t pursue because they didn’t provide insurance. When it comes to my career, I’ve never been able to focus solely on the salary, job responsibilities, hours per week and distance from home. Instead, I’ve had to narrow my career options to jobs that provide insurance, even though it has meant ignoring opportunities that involved higher pay and/or responsibilities that are a perfect fit for my interests and skill set.

While I have never had an “Obamacare” insurance plan, the ACA has given me breathing room by doing away with the need to maintain continuous coverage. While I was pregnant and breastfeeding my two children, I was not on a biologic medication. There was a month between jobs when, for the very first time during a transition, I wasn’t daunted by the need to maintain continuous coverage. I opted to be uninsured for a month, as my scaled-down medical regimen at that time was less expensive than paying for both a new plan’s premium and deductible would have been (we crossed our fingers that no unexpected emergencies happened during those 30 days, and fortunately, they did not).

For the first time, I didn’t have to worry that my employer would deny coverage of my RA expenses for a year due to that lapse in coverage.

In addition, for the first time I started entertaining the notion of working in settings previously unfathomable for me, because I’d always needed employer-provided insurance. I felt freedom exploring amazing job opportunities that don’t offer insurance. However, the last time I changed jobs was a year ago, right in the middle of the presidential election, and I decided I’d better play it safe and go for a standard job with benefits instead. With all the current uncertainty about the future of the ACA, I’m grateful for my employer-provided plan.

Many politicians in favor of repealing the Affordable Care Act say they will find a replacement that covers people with pre-existing conditions but does not require everyone to have insurance. Most experts agree that is simply impossible[3]. The cost would simply be too high for insurers to cover those of us with RA and other expensive chronic health conditions if there aren’t healthy people paying into the pool as well.

Some people argue that healthy people shouldn’t have to pay for health insurance they may or may not need just because others are sick. However, we do this with other forms of insurance without batting an eye. We are required to have auto insurance even though we may not need it. We pay for home insurance with hopes of never making a claim. We do this both because we’re required to but also because if someone does crash into our car or a tree does fall on our house, we will be covered. Those of us living with RA are like the car that’s repeatedly getting rear-ended or the house whose roof is perpetually beset by fallen tree trunks. Impending destruction is a daily reality for us, and we’re doing everything we can to stave it off.

Should those of us unlucky in health, already suffering from the symptoms and all the daily implications of having a disease, also be unable to get the care we need because insurers won’t cover us? None of us asked for this condition, and everyone I know with RA would give it up in a heartbeat if we could.

I hope that politicians take into consideration how frightening a disease like RA can be even with insurance, let alone facing the condition without medical treatment. I would love to see improvements made in the Affordable Care Act, but any changes that will enable insurers to opt out of covering me or return to “continuous coverage” requirements will not be legislation that serves the millions of us living with pre-existing conditions.

Have you been impacted by the Affordable Care Act? What changes would you like to see in a possible replacement for the law?

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