Donna F. Edwards, 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.
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