The former Democratic Representative from Maryland uses her condition to write To my colleagues in Congress: I have MS. Don’t make my insurance unaffordable. That appears in today’s Washington Post.
She begins
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.
Edwards then goes through a bit of her health history. Now 59, she had never had health issues, and talks about all the energy she had while running in a primary race (which she lost) for the US Senate.
She had several incidents after her loss which took her to her doctor, although nothing out of the ordinary was originally found. But the doctors kept looking. She writes
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 diagnosis , of Multiple Sclerosis, was as you might expect, devastating.
Edwards tries to put what her diagnosis means into context:
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.
She is not wealthy, unlike many of her former colleagues, as she reminds them. Although she had a handsome congressional salary of over $170,000, absent insurance she would be unable to continue to afford her medication.
She had almost lost her home with a previous medical incident before she was in Congress. She was proud to be one of the presiding officers in the House while the Affordable Care Act was being debate, and while she knew it was only a good start, never imagined she might have to go back to a time where she had no insurance.
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.
Let me stop for a moment, and take a bit of discursus. I have known Donna since meeting her at an event full of progressive types immediately after Markos and Jerome had had a book event, hosted by among others Adam Connor, at George Washington University. That was in 2006. In the conversation she had with me she told me she was going to challenge then Congressman Al Wynn for the Democratic nomination for the 4th Congressional District. She did, and lost narrowly (with some shenanigans with one ballot box), ran against him the next cycle and defeated him. Despite attempts by establishment Dems, including trying to gerrymander her into a less friendly district, she held her seat until she lost her Senate primary to Chris Van Hollen.
When she ran the 2nd time, her campaign manage — and later her Congressional Chief of Staff — was Adrienne Christian, a good friend from Jim Webb’s 2006 Senate campaign, where she was Deputy Campaign Manager. Adrienne came and talked to my students. Donna herself did an even with Governor O’Malley at Eleanor Roosevelt High School where I taught (although the school was actually in Steny Hoyer’s district). I would occasionally see either or both of them on the Hill, and would pretty regularly go to an annual event Donna held. In short, this is someone I know and respect. She has always been a real progressive. She is the 2nd friend from Congress who has had major health issues — former Representative Carolyn McCarthy, my closest friend among the electeds, left the House because of her lung cancer. Donna’s disease is also something that has very much limited the activities of one of my close friends, a man I got to know when he was an Orthodox priest who is now a psychologist on the West Coast who with his wife are close friends with my wife and myself: his wife is a musician as was I, and he was very much into literature as is my wife. I can remember our crowding into my car to drive to NYC from Philadelphia for a dance performance, something all four of us loved. As a result of his experience, I am very aware of what MS can do to one.
Returning to the op ed, I doubt that most of her former colleagues knew about this medical condition. In the past Donna has been fairly private about things like this. Her going public now is not because of what she faces, but because she realizes the impact on the American people of what the Republicans in Congress are trying to do.
She got in a 25 foot RV and traveled around the country. Many of the people she met in RV parks were Republicans. They did not know that she was a Democrat, a former Congresswoman. She writes about the sharing they and she did. Donna tells us
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.
She also tells us
I do know that my MS will not stop me. But not having health-care coverage because of my MS could stop me permanently.
And before she closes this open letter with her warm regards, she offers this final paragraph:
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.
Indeed. As the spouse of a woman with Multiple Myeloma, these words resonate strong:
I don’t have a preexisting condition because I was a bad person who led an unhealthy life.
Perhaps the words of Donna Edwards may have some impact upon some Republicans, because they knew her.
Perhaps the expenses that Rep. Scalise would already be facing if he did not have insurance may have an impact — it could have been one of them.
As we wait to see how the debate over health care plays out, I am grateful that my friend Donna Edwards decided to be public about herself, and offer this op ed to help people more completely understand what could happen to many Americans if the Affordable Care Act is dismantled or undermined further, rather than having its problems addressed.