Former rep with chronic illness: GOP health care repeal a 'disaster' for millions like me


Former Rep. Donna Edwards is battling multiple sclerosis and confronting costly treatments — which will only get worse under the GOP's "so-called 'Better Care'" plan.

Try as they might to deny or ignore it, it is no secret that the Republican Party's health care plan is massively unpopular.

Lawmakers have encountered vocal, vehement resistance to the bill from coast to coast, and across the political spectrum. And support for the Affordable Care Act continues to thrive, even in red states like Kentucky, home of Senate Majority Leader Mitch McConnell.

But McConnell is still dead set on forcing the bill through, even if he has to lie to his own colleagues to do so.

Many Republican lawmakers won't listen to their constituents. So former Rep. Donna Edwards is speaking up on their behalf — and her own.

The Maryland Democrat, who served in the House from 2008 until January 2017, recently penned a powerful open letter to her former colleagues, pleading with them to recognize the damage their health care bill would do to so many Americans.

And she includes herself in that group: In June 2016, after months of increasingly troubling symptoms, Edwards received a diagnosis of multiple sclerosis, an autoimmune disorder that attacks the patient's central nervous system. MS is not fatal, but it is exhausting, and requires extensive, costly treatments and exams.

As Edwards explained to MSNBC's Joy-Ann Reid, looking ahead to life with a chronic illness under the GOP's plan is daunting and frightening.

"I have a pre-existing condition that's one of the most expensive for chronic long-term care," Edwards noted, adding that she "will be left in the lurch just like millions of people, with care that is astronomical in cost or completely unaffordable" if the GOP's plan becomes law and the Affordable Care Act is repealed.

EDWARDS: A year ago in June, actually June 22nd, I was diagnosed with multiple sclerosis. And in the year time period, in trying to get my hands around this disease, one of the things that I discovered is that, first, I've had to COBRA my coverage since I came out of Congress in January 2017. That cost about $800 a month. But the real kicker is that my care runs to about $100,000 a year, including $73,000 as part of my prescription drugs. And what I know is, at the end of my COBRA coverage in June 2018, I had planned to transition to the Affordable Care Act, because it would be affordable and I'd continue to be able to get my health care.

And what I know is that under this Senate bill, certainly under the House bill, I have a pre-existing condition that's one of the most expensive for chronic long-term care, that I will be left in the lurch just like millions of people, with care that is astronomical in cost or completely unaffordable. And so I just decided to raise my voice on behalf of millions of people to my former colleagues who know me — they know me as an athlete, somebody I played congressional softball with them, with football, tennis, and very active, a bike rider — and I will no longer have health care.

And I didn't know a year ago that I had this condition, but I have it now, and I think it's important for all of us to speak out, to contact our senators, and to really let them know the disaster that this version of so-called 'better care' will have on all of us.

Anyone could find themselves in Edwards' position: Taken by surprise with a devastating diagnosis, finding their lives in sudden upheaval as they try to negotiate treatment and the new reality of their life as a person with a chronic illness or severe injury.

The last thing anyone in that situation should have to worry about is how they will pay for the care they need — or whether they have to simply forgo that care in order to keep a roof over their head and food on their table, to provide the basic necessities for themselves and their families.

If the Republican Party truly wanted to provide "Better Care" — as the title of their plan insists — it would behoove them to listen to those most in need of it, and to work with Democrats to improve the system we have, rather than tear it all down and replace it with something that will help nobody except themselves and their wealthy friends.