A Matter of Life and Death

pillsby Brenda W. Clough

This is not the first post on this blog I have written with this title. I first used it three years ago, in 2013 when the Affordable Care Act was being debated. This post summarized the story of writer Jo Clayton, who died for want of health insurance. The ACA was upheld, and I was able to add encouraging reports later.

Now the ACA may well be doomed. (This turgid pdf tells you why — skate down to page 43. Lord, these people need an editor.) Nor are the allied services of Medicare and Medicaid safe. Healthcare may be expensive. ACA may be a royal pain in the ass to deal with. All three programs are in crying need of adjustment and fixes. But ACA’s vanishment will literally destroy a lot of people. People who blog here. Whose books you read. Whose life and health is sustained only by the meds or doctor care that the ACA helps them with. This is not a metaphor, not a figure of speech, not writers making the words do the loop-de-loop. This is really real. We are now being advised to get the health treatment we need, now, because it may be unavailable later. To get insurance if we can, now, because it’ll be harder to kick you off if you’re already on the rolls. To switch from the Pill to implants, because birth control may be constrained in future. Winter is coming, and GRRM would know.

I’ve asked witnesses to put their stories in the comments to this blog post, so that you can hear it in their own words.

It is sober fact that most artistic careers do not pay a living wage. We are not all J.K. Rowling or Brad Pitt or Mikhail Baryshikov. Poets starve in attics; actors wait table; artists lay out ads; novelists write tech manuals. Mostly we are cool with this. Poverty for a creative is often a deliberate choice — if we didn’t have to create we would go be CEOs of General Motors or something. We can live on ramen noodles. But health costs are beyond the artist.  They’re beyond nearly everybody; medical bankruptcy is the most common cause of insolvency in the nation. The Muse can’t stand up to medical bills.

I hate to state the obvious. But we can’t write if we’re dead, folks. Ouija boards are a lousy publishing platform. We need health insurance.















A Matter of Life and Death — 23 Comments

  1. I am a single woman of middlin’ years, freelancing to support myself/save money for retirement, otherwise healthy – with a pre-existing condition that requires I take a pill every single day to remain healthy.

    With the ACA, I am able to get my blood levels tested regularly to ensure I’m at the right dose, and afford my pills. It’s not cheap (it’s not even inexpensive) but I can manage it. Once the ACA goes away, insurance companies will gleefully raise my rates (or deny me coverage because of that well-managed pre-existing condition), and I will have to choose between paying for my health, or my housing. I have no other option – I’m already working as hard as I can, and if the economy dips even a little, there will be even less work out there for all of us.

    I’ve already had a Canadian friend offer me their boyfriend in marriage, to protect me. Normally, I would have just laughed… This time, I cried a little.

    • Aw, that breaks my heart. It truly does. I sincerely wish there was something those of us observing from the outside could do. It’s like watching a burning house, knowing that there’s someone trapped inside, but also knowing there’s no way you can possibly get to them to pull them out. All we can do is hope that the fire trucks arrive soon to put out the blaze…

      I know. That doesn’t help at all, does it.

      Health care is a basic human right. It seems so clear to me—I honestly don’t understand why so many refuse to accept that.

  2. Thanks, Brenda! I know very well the tough life of the writer, years on the edge, and then scraping by even with a teaching job that sucked away most of my creative energy. (Now incredibly lucky to have good insurance through my husband’s job, but that will cost a lot more once he’s retired.) It’s a harsh world for so many, and we need to stay vigilant against the efforts to dismantle ACA.

  3. The ACA was to hold me over until I am eligible for retirement. I can’t afford my meds, much less my doctors, without it.

    I never dreamed of a day when my 65th birthday would be anticipated with such desperation.

    • Pay attention to Paul Ryan’s plan to privatize Medicare. I’m worried about that as well. I’m just hoping all those right wingers who wanted to keep the government’s hands off their Medicare (as if it wasn’t a government program) will weigh in and help stop this.

  4. Yep. This is my insurance. I’ve no idea what I’ll do if it goes away, so next week in an effort to feel like I’m doing SOMETHING I’m looking at funding an HSA. I’m not a spring chicken any more, and while I’m basically healthy (knock wood) I’m well aware that it’s at this point in a person’s life when Trouble usually rears its head. What happens if I break my hip? Get cancer? Even get hit by a bus, no respecter of age or gender or race? ACA has saved lives. So congratulations, the election of Trump and those who want to abolish the ACA may well force authors like me to A) stop writing and get a “real job” with benefits, which will be fun as I’ve not been in the workforce for 25 years, B) spend more money than I can afford…somewhere that offers insurance, or B) die. C is not an exaggeration. Others have.

  5. I’m two years shy of Medicare (if they leave that alone, please God). And I’m covered by my husband’s insurance. Older child has aged out of our coverage but is now on ACA, and I dread her being without insurance–she just got a diagnosis of Fibromyalgia, which is manageable but needs… management. Younger child is still on our insurance for now.

    I have a real job. It doesn’t have benefits (tiny wee underfunded start-up non-profit). And what the people who rail against “socialized medicine” don’t seem to understand is that we were always paying for the care of the less fortunate–just at the more expensive end when they landed in ERs because they’d had inadequate care up to that point. Now it’s back to that… or somewhere really, really terrifying.

  6. One day after Trump’s election, I find out I will need surgery.

    I may have to have it pretty much immediately, while I am still sort of covered by the ACA system. Because if this drops out next year and I delay I will probably end up not getting the surgery at all because I literally don’t have the tens of thousands of dollars it costs these days (my father was in hospital FOR OBSERVATION, i.e. no medical procedures other than a scan, but just in hospital for observaiton, for *two days* three years ago. The bill came to $20,000+. That was three years ago; today it would probably be half again as much. And for me it would be that PLUS a surgeon’s fees PLUS anaesthesia PLUS aftercare and meds and whatnot, and I am probably staring down the barrel of $90,000 or more. I don’t have it. I go under the knife before Christmas or I don’t do this at all and it’s all up to God and his better angels.

    That’s all she wrote.

    • I hope it all goes well. Please keep us posted.

      If you have to put it off, please remember that the ACA coverage will be good at least through 2017. I don’t think they can pull the plug once you have a contract, even if they act immediately.

  7. I’m on Medicare and am not worried about losing my coverage or being forced to a voucher system. I think that’s politically impossible. However, I am very concerned about friends and family who might have a future of shoddy insurance in their old age if the threatened voucher system is phased in (Paul Ryan is talking about folks 55 and under). Also those who rely on ACA subsidies or Medicaid (MediCal in our state — like my older daughter).

    Pre-ACA, my family went from COBRA to the only option being a high-risk pool because of my husband’s (completely benign, requiring no treatment) pre-existing conditions. The rate would have been $3900/mo for 3 of us. At the suggestion of a financial adviser, we formed a simple partnership and were able to get a small-group policy that was a stretch but doable. As our income diminished, it was a greater and greater struggle, even at group rates for a high deductible policy. The ACA/CoveredCA saved us financially.

    My other thought is that we have a breathing space. 2018 isn’t that far off, and the GOP is talking about a 2 year transition period. Depriving 20 million people of their health insurance won’t happen immediately. And 2018 is when many GOP lawmakers will be up for re-election. It’s time to begin working on taking back Congress!

    I’d love to see single-payer emerge from this, but am not holding my breath.

  8. I’m on Medicare. It is the most cost-effective healthcare delivery system in the country. It makes no sense to make any significant changes, except to let more people buy in, but this isn’t about sense, it is about Randian ideology, which is very bleak unless you are the one breaking the system and walking away from the wreckage.

    • And of course Rand herself relied on Social Security and Medicare in her later years. (Teenaged Paul Ryan lived on Social Security for a while.) It’s always different when it’s about them.

      • I have a simple plan to achieve this. Alas, no one is interested. My idea is to simply grind the year of eligibility down. I believe it is now 65. So, next year, we make it 64 — everybody turning 64 to 65 signs up. If this causes some glitches, stall a bit, keeping it at 64. But then, 63. Year by year, the eligibility age gets lower until finally everybody is on Medicare.

  9. From my facebook page, by request:

    I want to keep this a politics-free space, because so many people of so many different views have managed to get together here. Twitter is where I do my rabble-rousing and opinionating.

    But I do want to say one thing.

    I’ve been on the losing side of elections before. I lived through 22 aggregate years of Reagan and two Bushes. Losing is never fun.

    This is worse. Twitter is where I go into all the ins and outs and variations and ramifications. This is my personal page, and in this election, the loss is direct and personal.

    I will be losing my health insurance. There is no sign of any viable replacement, and there is no indication that whatever does replace the flawed and rickety ACA will be an improvement. Most likely I will have to return to the old choice between mortgage/living expenses and insurance. I call it the “Bankrupt or Die” plan.

    It’s also quite likely that Medicare and Social Security will be on the table, and changes made that will not favor low-income, noncorporate, pensionless people like me. But that’s speculative. What I know, today, is that the majority leader of the Senate has stated that repeal of the ACA is an immediate priority.

    And that’s my life on the line, and the lives of 20 million other people. Already I have heard of a person who committed suicide because they could not see a way ahead without their insurance. There will be more. There may well have been more already.

    Do not tell me it will be OK. Do not ask me to give the incoming administration the benefit of the doubt. Do not votesplain or politicalsplain me. Do not for the love of little green men rant at me about Evil ACA. I have been understanding, I have been careful to see all sides, I have recognized that the program is seriously flawed, on many other days, and will on many days again. Not today. This, for once, is about me, on my page, and I ask you to respect that.

    I do know the ACA is a bit more complicated to shut down than just “Off with its head!” on January 20th. I also know that, for the past six years, the party in power has done nothing and proposed nothing that in any way reassures me that there will be any workable or affordable alternative. If I’m wrong, fantastic. I have no reason, today, to expect that I am.

    When something goes wrong and we say, “Well, at least no babies will die,” that’s black humor.

    Not today. When the ACA goes, babies will die.

    And that’s what this election result means to me. Above and beyond any ideology or policy.

    Now back to horses, dogs, cats, roses, daily life, and all the things that make this is a safe and calm space.

    ETA: Someone did try to Trumpsplain me. They truly believed everything will be OK. I wish I could.

  10. I’m one of those starving poets with a preexisting condition.
    On Monday, I’m heading to the dentist to get the work done that I need, but can’t really afford.
    This is going to eat up every penny we’ve saved, and put us back in debt.
    But I have to do it now, while it’s still even barely feasible.
    If I lose the ACA, I will not be able to get ANY insurance.
    Life is a struggle, even with insurance. Without it, I don’t know what I’ll do.
    At that, I’m luckier than a lot of my friends.

  11. So many things about these election results threaten not just the quality of life, but the lives, of some of us.

    My past 30+ years, my life choices have revolved around health insurance. Getting it. Keeping it. Getting the right kind–group instead of individual. Being in an area where I was paying a third of my yearly income and more to keep it even though none of the local (meaning within three hours) doctors were signed on with it, and then the only nearby hospital wouldn’t take it, either, while the premiums sky-rocketed and the insurance program wavered.

    I moved to New Mexico before ACA was a thing, because they had a high risk pool that I could get into via that previous group insurance. With the advent of ACA, that state offering has wavered (and is now just on the verge of imploding)–because the agencies involved have understandably decided to shift everyone to ACA plans. This year they made profound changes to drive the transition, crippling the program in ways they haven’t even yet detailed.

    I am a giant walking pre-existing condition. I have the edge-of-poverty variable income of a career writer with fifty publisher titles but no actual name recognition. ACA was broken–a little more every year, thanks to the interference of a political party that chose to interfere instead of help improve–but it was *something.*

    My life will be a whole lot shorter and a whole lot more agonizing if this administration torpedoes my options.

  12. Deep breath….

    I am alive today because of ACA. Not simply because my ACA insurance (and the subsidy I was eligible for last year) meant that I could pay for insurance and use it. That was critical. I am paying for ACA this year, but have carefully not used it. I treat it like a catastrophic policy. I take very good care of myself, but the things I need are not covered by a gateway doctor visit.

    I’ve bought medications from Canada to try and balance my budget. I did everything I could to put off surgery, first because I had no insurance (I dropped it when it cost more than my rent) and secondly because I might have been able to save the organs involved. But medical science had not caught up to what might save one organ–and the MD I went to did not tell me a treatment for the second condition existed. By the time I tried it, it merely eased pain. It could not reverse the situation.

    I was working up to emergency surgery. An emergency surgery would have been the expensive version of that surgery, and meant hospital time and slow recovery. I would have wiped out my “investment” account and had to tap my ROTH at 58. It had enough money for me to live at poverty level for ten years.

    Then, apparently I was supposed to die.

    Do not think I am a person who didn’t save against the rainy day–I saved copiously, and am alive because I did. I can live on rice noodles and chicken broth, and have. I bought my first new clothes in over a decade in the last year.

    But ACA is critical for many, many people. 50% of all women over 50 who want to work, no matter their field or education or work history, cannot find fulltime work. And no, you can’t get a fast food job, folks. They won’t hire you because they think you won’t stay. Need I say that this impacted my ability to create?

    We need another solution for health care. I would be a lot less worried now about it, for friends and for myself, if the governing party (the Congress, where laws happen) would stop posturing and come up with an actual alternative. Or even some good tweaks. One that takes effect and picks up seamlessly when ACA ends.

    Because I may have more money today–but I still have arthritis (among other mysteries). And arthritis is a “pre-existing condition.”

    You can’t walk in cold and get a non-group health policy with arthritis. Not without a waiver for pre-exsiting conditions. I fear there is not enough money for insurance for most people if the pre-existing waiver disappears. My sister has calculated $120,000 in payments for herself until Medicare kicks in for her–if it is still there. With the waivers.

    Think of that.

    I don’t have to explain why I used arthritis as my example, do I?

  13. And in immediate news: my 27 year old daughter had her appendix out last night. The appendix had ruptured, but they got her cleaned up, and she’s on serious antibiotics, and she’ll very likely be home tomorrow night. Apparently they got her to the hospital just in time.

    Thank God for the ACA and Covered California. The girl is still looking for a job, aged out of our insurance, and if she didn’t have this coverage she could be looking at years of debt. Six months from now?

    • So glad she had the ACA coverage. This happened to my father when he was about Julie’s age, so I was raised on appendix caution stories and know just how dangerous and scary this is.

      And no one should ever end up in debt from medical bills. I remember how shocked I was to find that, in many states, you can lose your home for unpaid medical bills. (In Texas and some others, your home up to a certain large value is protected from all debts except the mortgage on it.) And, of course, if you’re young and don’t yet own anything, not paying those bills means you’ll never be able to afford anything.

      The ACA represents progress. We cannot go back.