Transformed by the Affordable Care Act

Sept. 17 was a big day for me. It was a day I lived in great fear of for over a decade — the day that I no longer could be covered by my parents’ health insurance.

Since I was 2 years old, I have had juvenile rheumatoid arthritis (JRA), an autoimmune disease that causes pain, swelling and, if not treated, erosion of joints. For people slightly older than me, that meant multiple surgeries before age 20 just to walk. For meand those younger, it means exorbitantly expensive medications, many lab tests and even more medical appointments. Either way, it means a lot of money just to live “normally.”

As a child, the only reason I cared about my disease was because it made me hurt and because I had to take medicine that made me sick; most of the people I interacted with had no idea that kids could even get arthritis. As I got older, I learned of new fears: the effect these medications could have on my liver, the potential for joint replacements in my future, and the very high likelihood that when I finished college I would not be able to find a health insurance plan that would cover my doctor appointments, medications, or anything related to my arthritis because carriers would deny costs for my pre-existing condition.

This is no small matter, when biologic medications for JRA cost upward of $30,000 per year. Without insurance, I would need to pay this and all medical costs related to arthritis out of pocket — just to live a relatively typical life.

I’ve been interested in health since a young age, and recognizing my own privilege of growing up in a family where I had access to medical care, I’ve wanted to work with people and populations that don’t have the same access. I’ve always been encouraged to follow my dreams and always thought I would work for a public health nonprofit organization on the issues I am passionate about. All of a sudden, because of my realization that having a pre-existing condition meant that I would likely need to pay for care without insurance, money became much more of a concern. Howcould I think about following those dreams when I knew I would need a well-paying job in case I needed to pay out of pocket for the drugs that allow me to get out of bed in the morning? What would happen to me if I didn’t find that job right after graduation when I no longer had access to my parents’ health insurance?

So the day I would lose access to health insurance through my parents’ plan was on my mind for over a decade, generating fear and affecting how I made decisions about my future. But it turned out to be anticlimactic — a Saturday like most any other. No crisis. Why? Because of a component of the Affordable Care Act that prohibits insurance companies from denying coverage for pre-existing conditions.

This policy transformed my life: I stayed on my parents’ insurance until I was 26, and now I am covered by my graduate school’s insurance — arthritis and all. At least for now, I have been able to follow my dreams of working internationally and of pursuing a career in public health.

Of course I still worry about what will change in the future and whether I will always have access to coverage, especially during this election season. And more importantly, I recognize that many people with chronic conditions are not as lucky as I am, that for many people, their disease and their medical costs still play a much larger role in defining who they are able to be and how they are able to live their lives.

Through the ACA we have made progress, but there is a lot more to be done. Biologic drugs still cost thousands of dollars a month. There are still manystates without a pediatric rheumatologist. There are huge inequalities in access to overall health services and in access to the other factors that are crucial in creating good health.

Many will continue to work on issues of access, of payment, of making sure programs are defined by the communities they are aimed at, of innovation — issues that are important to consider in this election. But for now, for today, for myself and everyone else with pre-existing conditions, I want to say thank you to President Obama and everyone involved in drafting the ACA for giving us, for giving me, an increased ability to keep dreaming.