When You Have MS, Politics is Personal

Since last summer’s failed congressional efforts to repeal many provisions of the 2010 Affordable Care Act (ACA), the hashtag #IAmAPreExistingCondition has peppered countless social media updates.

Current and former cancer patients use it on Twitter, Facebook, and Instagram. Asthma sufferers post it, too. Ditto for people with diabetes, mental health issues and heart ailments.

It was during those debates last summer when I publicly associated myself with this hashtag. Since my July 2014 relapsing remitting multiple sclerosis diagnosis, I have felt extraordinarily blessed to have the ACA already in place so that if my spouse loses or changes jobs, health insurers will not be able to deny me coverage because of my MS.

However, every time a member of Congress proposes a revision to U.S. health care policy that would potentially compromise insurance coverage for those with pre-existing conditions, I experience a surge of anxiety not just for myself, but for my family.

Politics, when it comes to health care, is deeply personal.

The fact that I’m a college journalism lecturer and a serious news junkie–I read three dead-tree newspapers a day (I know… I’m a dinosaur), as well as consume copious amounts of news-oriented programming and social media–means that nearly every time someone floats a health care proposal, I’m almost certain to read about it. Then I watch as patients respond to this news with abject fear. Fear that is embodied by the hashtag #IAmAPreExistingCondition.

Patient advocacy groups ranging from the American Cancer Society to the National Multiple Sclerosis Society typically issue statements in the wake of these bills, urging lawmakers to protect patients’ care. For example, in a June 2018 joint statement, organizations rallied together to state that repealing insurance protections for those with pre-existing conditions would have a “devastating impact” on the estimated 130 million Americans under 65 who have illnesses which, in pre-ACA days, would render them ineligible for most health insurance. 

Armed with the knowledge that should there be changes to both the ACA and my spouse’s employment situation, my expensive treatment (regular MRIs, neurological office visits and prescription medicine that costs tens of thousands annually) would jeopardize my family financially. Rescinding pre-existing condition protections would make it legal for insurers to once again discriminate. That’s why every proposal feels like a mortal threat. The threat seemed so dire last summer that I invoked the hashtag #IAmAPreExistingCondition so followers on social media would note the proliferation of this hashtag and realize just how many Americans would be affected by legislative changes.

More than a year later, the specter of once again returning to the days of legally rejecting coverage for people who have (or once had) serious illnesses, continues to rear its head.

A recent New York Times article stated: “In the past year, the Trump administration has… asked a federal court to throw out parts of the Affordable Care Act, including the popular protections for people with pre-existing conditions.” While the Republican Senate majority leader has been quoted as saying, “Everybody I know in the Senate–everybody–is in favor of maintaining coverage for pre-existing conditions,” 20 governors are currently suing the federal government and asking a U.S. district court to repeal the ACA. Attempts to eliminate legal protections are ironic, given that a late-June 2018 poll by the Kaiser Family Foundation found that most Americans, regardless of party affiliation, consider preserving health insurance coverage for people with pre-existing conditions to be “very important,” and 57 percent of respondents said they or someone in their home has or had a pre-existing condition.

In my little world here in the Boston area, the fear that, in addition to coping with the impact MS has had on my life–like severe heat sensitivity, difficulty scaling stairs, frequent nausea, fatigue, and migraines–I live with the omnipresent threat that the health care which keeps me functioning, which enables me to continue teaching, writing books and articles, and raising my three kids–could be taken away, depending on in which direction the political winds are blowing at any given moment.

#IAmAPreExistingCondition. I don’t want to be, but I am. And I’m very, very worried.

Get involved in the conversation. Use #DefendPreEx and #IAmAPreExistingCondition to share your voice.
Tags Activism & Advocacy, Healthcare, Insurance & Money Matters      10 Appreciate this
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Meredith O’Brien

Meredith O’Brien is a Boston area writer and journalism lecturer. She is a die-hard Red Sox fan who lives with her husband, three kids ,and two noisy dogs. Her fourth book, "Uncomfortably Numb: A Memoir," about her MS experience, will be published in March 2020. Follow her on Twitter @MeredithOBrien, or visit her website at mereditheobrien.com.  

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  • Linda L Halvorson   Aug 28, 2018 11:55 AM
    Totally agree!
  • Jon Strum   Sep 7, 2018 4:12 PM
    Last week, 10 Republican senators introduced the Ensuring Coverage for Patients with Pre-Existing Conditions Act. It's the biggest (and most underhanded ( healthcare lie yet.

    What this bill actually does is guarantee that people with pre-existing conditions can buy health insurance -- while allowing the insurance companies to refuse to cover the pre-existing condition! So if you have MS, you'll still find coverage, but it won't cover anything associated with your MS!

    I hope everyone votes their own self-interest in November, and casts their vote for the candidates who will vote for you
  • Jereme D Crane   Sep 20, 2018 2:23 PM
    I have Relapsing Remitting Multiple Sclerosis. I was diagnosed in 2004. I am a 46 year old Man. Health Coverage is Paramount to me. I have one leg smaller than the other and I can’t work. Like many in this World with ms I need all the help I can get from our Government in the way of Health Care, not the other way around. Help from anyone with or without ms is so greatly appreciated!! 😇
  • Larry JR   Sep 20, 2018 11:43 PM
    The dirge of MS. Medical mobility equipment. Accessible van.
    Intrathecal Baclofen pump and refills. Cancer treatment. CPTSD.
    Home modifications. Caregiver.
    Politicians ... what were you thinking? Have you no compassion?
  • SHERYL HAYES   Sep 21, 2018 10:49 PM
    Don't sink the insurance ship yet! I truly believe that coverage will continue to cover pre-existing disorders like MS. I know my company does. Stay positive. God will take care of it. It's way too early to have anxiety. My daughter has MS and her coverage takes care of her. Plus, there are existing programs for assistance otherwise. Don't stress, it's not healthy.
  • Brenda   Sep 22, 2018 8:48 AM
    I was dx in 2002 and have been fortunate that my treatment has worked incredibly well and kept me stable for all these years. With that being said as of the end of January next year my cobra insurance will come to an end and I will need to find other coverage. I find this whole insurance situation disturbing. There is no way I can afford the medication that has worked so well which was $1400 a month when my journey began and for the same formulary is now $5800 a month. When my late husband and I were both working and both had insurance I could handle it but seriously the people who are making these decisions need to take a walk in our shoes and face this situation. I worked in the medical field billing insurance companies for surgeries, etc for 30 years so I understand.
  • Joy   Sep 23, 2018 11:15 AM
    I was forced to retire 6 1/2 years early, secondary to failing health.
    We spent over 18,000 and then over 17,000 the first two years I was sick.
    Cobra is very expensive. I was thankful to be eligible for Medicare this past spring. The only problem is that I could not afford a secondary insurance, as I have a pre-existing condition. My husband obtained Medicare at 65 and purchased AARP /UHC for a secondary. He pays 178 for the secondary, but If I wanted to buy the same plan would cost me close to $600 a month. I am dinged for having a pre-existing. That rule is from our past administrations. Now I have a managed care Medicare and have to pray I don’t get very sick because I very high out-of-pocket.
    Hopefully a better plan to fix our very broken health care is coming sooner, then later.
  • Linda Cook   Sep 25, 2018 5:05 PM
    I am totally sick to my stomach about pre-existing conditions. Not only do I have MS but I have diabetes, heart ailments and I'm sure that other issues I have will fall under pre-conditioners. The folks in politics have money enough that they don't worry about pre-existing conditions.
  • Avatar
    golgotha  Dec 22, 2018 11:23 AM
    I agree that politics is personal. Doubly so when it comes to health care and you have an incurable, debilitating disease in a country with no national health care.

    But with that said, I've always viewed the ACA/ObamaCare as an abomination.

    I've lived in Europe and in other countries that had actual national health care (call it socialism or socialized medicine or whatever, you know what I mean). I lived in the dirt-poor country of the Republic of the Marshall Islands which also had national heath care.

    In those countries there is no such thing as "medical bankruptcy" -- people don't even understand the concept. When you explain the American health care system to them, people generally think it's barbarism.

    Those systems of socialized medicine have their strong and weak points, but trust me, they're far superior than the US system of privately-owned health insurance corporations! And they have the cheap costs (US health care is by far the most expensive in the world!), longer life expectancies (US life expectancy is going down!) and better health care statistics (US health care stats are only in the middle of OECD countries!) to prove that socialized medicine is superior.

    I was repulsed at Obama unilaterally ruling out a single-payer health care system (like the second-most expensive health care country in the world, Canada, has) and instead insisting on feeding us all to immoral, for-profit, privately-owned health insurance corporations.

    Those health insurance corporations are privately owned by wealthy shareholders.

    The ACA/ObamaCare "mandate" requiring Americans to get health insurance from those corporations literally means that Americans are "indentured servants" required to pour profits into the pockets of the wealthy shareholders of those private corporations -- all under penalty of law.

    Sorry, this former civics teacher thinks that mandate is "indentured servitude" (a form of slavery) and is a violation of the 13th Amendment and is unconstitutional.

    Many in Congress (mainly Republicans) want to go back to the stone age and tell people to "pull themselves up by their bootstraps" with no medical care. That's barbarism in a country as rich as the US is.

    Many Democrats in Congress are opposed to "MediCare for all" inventing various rationales to oppose it. Instead, they are working to re-implement the unconstitutional "mandate" and re-ignite the ACA/ObamaCare.

    Instead of fighting to replace a flawed, immoral and unconstitutional idea like the ACA/ObamaCare and its legal mandate to pour money into the pockets of wealthy owners of private health insurance corporations, we should instead be fighting for either (a) MediCare for all, or (b) copying one of the actual national health care systems of Europe that are proven to be far cheaper and much more effective.
  • Avatar
    Larry-T  Dec 22, 2018 1:55 PM
    Wow this says a lot how I am feeling right now with all of the political crap Thanks
  • Miel D'Rodilique   Apr 11, 2019 2:55 PM
    Every girl and woman in America is a pre-existing condition.