I have a pre­ex­ist­ing con­di­tion

The Washington Post Sunday - - SUNDAY OPINION - BY DONNA F. ED­WARDS The writer, a Demo­crat from Mary­land, was a mem­ber of the U.S. House of Rep­re­sen­ta­tives from 2008 to 2017. She is cur­rently a se­nior fel­low at the Bren­nan Cen­ter for Jus­tice.

Dear col­leagues in Congress, I strug­gled over whether to write, but fol­low­ing the House pas­sage of the Amer­i­can Health Care Act, and now the work that’s go­ing on in the Se­nate, I knew I must. In March 2015, when I de­cided to run for U.S. Se­nate in Mary­land, I felt great. I had the en­ergy to cam­paign across the state and also to make our votes and com­mit­tee hear­ings in the House. I rarely missed a lead­er­ship or Demo­cratic Cau­cus meet­ing be­cause I was de­ter­mined to con­tinue do­ing my job even as I cam­paigned across the state.

All my life, I’ve mostly been ac­tive and healthy (save for the oc­ca­sional sports in­jury). While in Congress, I rode my bi­cy­cle reg­u­larly to clear my head. I played on our con­gres­sional women’s soft­ball team and on our foot­ball team. Each Jan­uary, I jumped in the ice-cold Po­tomac River to call at­ten­tion to climate change. In 2015, I ran a hand­ful of 5K and 10K races. I thought I was in great health. I was not.

Af­ter my loss in the April 2016 Se­nate pri­mary, I wasn’t just dis­ap­pointed, I was ex­hausted. Dur­ing the re­cess that May, I de­cided to spend a week re­lax­ing in the Outer Banks of North Carolina. The beach was beau­ti­ful, but it did not cure my ex­haus­tion. One day, on an early-morn­ing run, my legs felt like spaghetti. As­sum­ing I had a pinched nerve or stretched ten­don, I de­cided to see my doc­tor on my re­turn. Still, I went to work and kept up my sched­ule; af­ter all, we had votes in the House on Mon­day.

The doc­tor found noth­ing out of the or­di­nary, though I was still tired. Be­cause all the tests were nor­mal, I de­cided to go for a 10-mile bike ride the fol­low­ing week­end, think­ing the ex­er­cise would make me feel bet­ter. Try­ing to avoid some run­ners and chil­dren on the bike path, I up­ended on my bike and flipped into the brush. I was scratched and bruised, and my an­kle was pretty badly sprained, but I sur­vived. I was for­tu­nate, though, be­cause the ac­ci­dent prompted some ad­di­tional delv­ing into my symp­toms.

As a mem­ber of Congress, I had pretty de­cent health care. Af­ter the pas­sage of the Af­ford­able Care Act — Oba­macare — we were re­quired to leave the Fed­eral Em­ploy­ees Health Ben­e­fit Plan and go into the D.C. Health Ex­change. I chose a gold-tier Blue Cross-Blue Shield plan with a $400-a-month premium (plus de­ductibles and co­pays) that en­abled me to see all the spe­cial­ists I needed. I fi­nally got my di­ag­no­sis af­ter nearly two months of tests and anal­y­sis. It came June 22, 2016 — the day of the House sit-in in sup­port of gun-con­trol leg­is­la­tion.

That morn­ing, I went to the House floor to join the sit-in. But hours into our protest, the House at­tend­ing physi­cian called me to his of­fice to tell me I had mul­ti­ple scle­ro­sis, an au­toim­mune dis­ease that at­tacks the cen­tral ner­vous sys­tem. At first, I couldn’t process what he was say­ing. I thought I had a pinched nerve; I didn’t know any­thing about MS. Dev­as­tated, I blinked away my tears and went back to the cham­ber, where I stayed for the re­main­der of the evening.

I’ve learned a lot about MS since that day. It’s likely that I have had the dis­ease for the past decade, un­di­ag­nosed. I’ve learned that more than 400,000 Amer­i­cans have MS, that it’s not fa­tal and that it af­fects dif­fer­ent peo­ple in dif­fer­ent ways. Once I re­ceived my di­ag­no­sis, I was de­ter­mined to find a great neu­rol­o­gist, which I did. I read up on the lat­est treat­ments and re­search stud­ies. I wanted to take con­trol of my treat­ment. I also knew that I was for­tu­nate to be di­ag­nosed rel­a­tively early and to have great health-care cov­er­age, which en­abled me to take care of my med­i­cal needs with­out wor­ry­ing.

A year later, I am no longer in Congress, and my fu­ture health care is un­cer­tain. I am not em­ployed, and I pay $800 a month for my CO­BRA cov­er­age, which ends in June 2018. I’m not sure what I’ll do then. My med­i­ca­tion, which has thank­fully halted the pro­gres­sion of my MS, costs roughly $73,000 a year. I’ve had three sets of MRI scans and will re­quire one each year to check my progress; that’s roughly $7,000 each. I ad­mit, I do not com­pletely un­der­stand all of the bills. It’s very con­fus­ing.

Un­like some of you, I am not wealthy. When I was younger, I had the ex­pe­ri­ence of not hav­ing health in­surance, and I al­most lost my home af­ter land­ing in the emer­gency room. One rea­son I ran for Congress was to help make sure no one would have to go through that, and I was proud to be one of the pre­sid­ing of­fi­cers when the Af­ford­able Care Act passed. I did not think the law was per­fect; I be­lieved it was a good start. I never thought I could have to go back to a time when I would not have health-care cov­er­age.

And yet, with the health-care bills you are now ad­vanc­ing, here I am. If we re­turn to a time when peo­ple with pre­ex­ist­ing con­di­tions can be charged more than healthy peo­ple, it will surely re­sult in my never be­ing able to af­ford in­surance again. If we re­turn to a time of life­time caps, I will no longer have health in­surance.

In Jan­uary, I set out in a 25-foot mo­tor home and logged 12,000 miles through 27 states over three months. I talked to a lot of peo­ple in Alabama and Mis­sis­sippi, Ari­zona and Texas, Kansas and In­di­ana. We talked about our dreams and aspi­ra­tions — about jobs, ed­u­ca­tion and health care, about chil­dren and grand­chil­dren. I heard peo­ple’s sto­ries about los­ing jobs, work­ing in re­tire­ment, not hav­ing health care and fam­ily mem­bers dy­ing. They told me about their can­cer, di­a­betes and heart dis­ease. I told them about my MS — all strangers.

Most of the peo­ple I met in RV parks across the coun­try were Repub­li­cans. They had no idea that I once was priv­i­leged to serve in Congress as a Demo­crat. And this story, my di­ag­no­sis of MS, is not about me; it’s about them — mil­lions of Amer­i­cans who are trust­ing you to help, not harm. Like them, I’m scared. Like them, I’m scared of be­ing sick and not be­ing able to af­ford to go to my doc­tor or pur­chase the medicine that is sav­ing my life; like them, I’m wor­ried that one day I will have to sell my home or spend my re­tire­ment sav­ings on my health care. I don’t know what I will do next or whether I will run for pub­lic of­fice again. I do know that my MS will not stop me. But not hav­ing health-care cov­er­age be­cause of my MS could stop me per­ma­nently.

I’m do­ing fine. I’ve ad­justed to my new body and dif­fer­ent ca­pac­ity. But I pray that as you fin­ish do­ing what­ever it is that you are do­ing with health care, you re­mem­ber that I was one of your col­leagues, that I worked hard and that I don’t have a pre­ex­ist­ing con­di­tion be­cause I was a bad per­son who led an un­healthy life. I have a pre­ex­ist­ing con­di­tion sim­ply be­cause I do; and I, like mil­lions of other Amer­i­cans in the same sit­u­a­tion, de­serve qual­ity, af­ford­able health care.

Last year, I found out I have mul­ti­ple scle­ro­sis. I didn’t know any­thing about MS but knew I was for­tu­nate to have great health-care cov­er­age. A year later, I am no longer in Congress, and my fu­ture health care is un­cer­tain.

Warm­est re­gards, Donna

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