The Healthcare Coverage Burden
In 2000, during what should have been the last semester of my undergraduate experience, I was diagnosed with rheumatoid arthritis/rheumatoid disease (RA/RD). I was 22 years old, in a lot of pain, scared about what the diagnosis would mean for my short term and long term plans, and trying to process what it meant to have a degenerative autoimmune disease.
Insurance coverage with chronic health conditions
To add to this load, I became aware of the importance of maintaining health insurance. Before the Affordable Care Act (ACA), a lapse in insurance coverage could result in insurers denying employer-provided plans to people with pre-existing conditions. As my older sister had type I diabetes, my parents were all too familiar with the high costs associated with chronic health conditions. They outlined how health insurance coverage could be lost, an event that would render me unable to afford treatment.
Thus, I picked up a “must maintain health insurance” lens and began viewing all major life decisions through it. For the past 20 years, staying insured has been prioritized in decisions regarding education, career, and parenting.
Insurance factored into my timeline
Fortunately, I was still able to attain my education goals, but the need for insurance did change my timeline. The ACA requires that family health insurance plans cover dependent children until the age of 26. However, I was diagnosed a decade before the ACA was enacted. Fortunately, my father worked at a university whose plan covered dependent children until the age of 26, provided they were enrolled in college courses.
Completing undergraduate and graduate school
When I was diagnosed, I dropped all my classes via a hardship appeal due to the debilitating pain I was in. I was put on Enbrel, and the drug reduced my symptoms enough to complete my bachelor’s degree. I’d hoped to eventually go to graduate school.
Getting diagnosed with RA/RD meant that “eventually” needed to be “immediately.” The clock was ticking until my 26th birthday. To get a master’s degree I would need to keep taking expensive biologic medication, which meant remaining on my parents’ insurance and completing my graduate degree before turning 26. Luckily for me, I was able to pull it off.
Limiting employers or career opportunities
While the considerations around health insurance changed in the transition from college to career, they certainly didn’t go away. As I shifted from my student life of part-time jobs to full-time employment, my job search was limited to employers that provided health insurance. For the past 16 years, this consideration has hugely impacted my career path. There are numerous opportunities that were exciting and fit my skill set, but I couldn’t seriously consider them because they didn’t provide health insurance.
I met and married my husband, an incredible man who is a wonderful partner. However, he is a self-employed small business owner, so marrying him did not come with health insurance. I have been our family’s insurance provider, and this has meant averting my eyes from really interesting work opportunities to focus solely on options that came with benefits packages.
Insurance also impacted my parenting
As we grew from a couple to a family, the need for insurance also impacted my parenting choices. When I became pregnant, I was concerned about my ability to work full-time while off my medications and carrying additional pregnancy weight on my joints.
Making hard decisions
We decided to go into some debt to pay for an expensive COBRA plan, as this enabled me to leave my full-time job for the end of my pregnancy and the first few months after the baby was born. I was able to spend five months bonding with my baby girl before needing to return to a job that provided health insurance, but I would have loved to have stayed home with her longer or to have worked fewer hours than employers required for benefits eligibility.
My husband also would have preferred that I had more time with our baby, but with an expensive, chronic condition the only viable avenue I had to insurance was for one of us to be insured through an employer-provided plan. We didn’t want to shutter his business so he could become an employee for a larger company. He’d spent years building a business, client base, and workforce of employees he cared about. So I returned to the workforce.
A weight off my shoulders
As my husband’s business continued to grow over the next eight years, he achieved the goal of offering health insurance to his employees and their families. He excitedly hoped this would extend to me and give me more work options.
However, in wet blanket fashion, I explained that I would “break” the plan. The risk pool of 20 employees was too small to shoulder my expensive intravenous Orencia treatments; after the first year, the insurance company would increase the premium to a point beyond affordability. Therefore, I continued in my role of insurance provider.
Until now. My husband’s business has successfully joined in a larger risk pool, and our family can finally be insured through him. As I completed our insurance enrollment, a feeling of lightness suffused my body. For 20 years I’ve had a message constantly playing in the back of my mind: gotta provide insurance. I knew this had a huge impact on major life decisions, but I didn’t realize how it registered in my body. It turns out the phrase “a weight off my shoulders” is not purely metaphorical. When becoming insured through my husband went from dream to reality, I felt a physical pressure in my body release. I literally felt lighter.
Structuring life around accessing care
This journey makes me ponder all the opportunities, creative pursuits, educational goals, and innovations that have been lost in our nation due to the lack of universal health care. I am a privileged person: I was able to attend college and graduate school, my parents had an insurance plan that would cover me as a student, I have always been able to maintain employment with benefits, I’ve been able to afford the employee share of health insurance premiums, and I had the credit available to go into debt to cover COBRA when we opted for that path.
Insurance coverage that enables us to live our fullest lives
Millions of Americans don’t have any of those privileges, and they are faced with much more dire limitations such as budgets too small to pay for ongoing medical care. What if these limitations were lifted to free us to make decisions that are best for the growth of ourselves, our families, and our communities, rather than just keeping our heads above water?
I do realize these are complex issues without simple answers. Yet, in structuring my life to access health care, I can’t help imagining what it would be like to have health care structured to enable us to live our fullest lives.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?