Trans­formed by the Af­ford­able Care Act

Baltimore Sun - - COMMENTARY - By Eryn Eby Eryn Eby is a stu­dent at the Johns Hop­kins Bloomberg School of Pub­lic Health; her email is eeby1@jhu.edu.

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.

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