A Matter of Life and Death

By Brenda W. Clough
Jo

Look around you — the room you are sitting in as you read this.  Perhaps you live in a cave, mysteriously equipped with wifi. A meditation room in a Tibetan monastery in the remote Himalaya, perhaps? No? Well! Then you know about the white-hot debate about health insurance that is raging in this country today.

What you are probably not aware of is how many creatives — writers, musicians, actors, dancers, artists — are going bare. By and large the arts do not pay enough for personal health insurance coverage. And in our little corner of the world the poster girl for this cruel situation is Jo Clayton.

Jo was a prolific and beloved fantasy and science fiction author. But like nearly all of us she never earned enough dinero from her writing for health insurance. Like most people in that situation she flew through life on a wing and a prayer, hoping she would never get sick. Most of her friends never knew this. She was a shy writer who came into her own with the advent of the Internet. She lived in Oregon, so I never met her except on GEnie, the proto-Facebook of the ’90s, where she had a galaxy of friends and held court almost every waking moment. How she found time to write 35 novels is a mystery!

However, a day came in 1996 when there were no posts from Jo on GEnie.  Here’s one account.  And our own Deborah Ross tells me:

Marty [Grabien] was one of the people who noticed Jo’s absence, but I was the one who called Mary [Rosenblum], who was local in Portland. Mary went to Jo’s apartment, knocked on the door, asked how Jo was and if she needed anything. Jo called out, “Food!” and if I’m remembering right, Mary had to get the apartment manager to unlock the door because Jo had fallen and couldn’t get up.

Phyllis Irene Radford recalls,

I remember the weeks on GEnie when she complained about a backache. But without insurance you don’t go to the doctor for a backache. Except this time it was stage 4 multiple myeloma — a form of bone cancer… The fact that I can spew out all these memories is an indication how much impact Jo and her rescue had on all of us.

Jo Clayton died in February 1998. She was 57 — exactly my age. With minimal medical care, how many more stories could she have delighted us all with? Nor is she the only creative person who died this way, not by a long shot. George Alec Effinger had a congenital condition that kept him in pain for years. He struggled with overwhelming hospital bills until he died, too young. And Katharine Eliska Kimbriel tells me:

Melissa Mia Hall died of a heart attack because she would not call an ambulance.  She was afraid that she would lose her house from the bill.

And, if you are present at all in the social media, there’s always a Facebook fundraiser or a Twitter campaign, a Kickstarter, or a begging bowl out, to pay the medical bills of another author or artist. There are entire websites devoted to this in case you need to start your own campaign. SFWA runs an Emergency Medical Fund.  This was not created casually, but out of appalling, heartbreaking need. The fans in Oregon are still running a Jo Clayton Memorial Medical Fund, to help writers in the Pacific Northwest with their medical bills. If you attend SF conventions you will frequently find an auction or an event being held to benefit these various funds.

Is this the way we want it to be? We are living in the most powerful and wealthy nation in the history of the human race. C’mon, folks. Yes, buy our books, enjoy our art, see our performances, because we can’t produce without that support. But help us to live. Nobody can write novels if they’re dead. Nobody should have to go without health insurance.

The next time you read a book or see a performance that thrills you to the core, that makes your heart sit up and sing, that makes you glad to be a human being, think about it: whether the author, the artist, gets basic medical care.

My newest novel Speak to Our Desires is out exclusively from Book View Café.

I also have stories in Book View Café’s two steampunk anthologies, The Shadow Conspiracy and The Shadow Conspiracy II, as well as in BVC’s many other anthologies, including our latest, Beyond Grimm.

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A Matter of Life and Death — 30 Comments

  1. Good post, Brenda. Self-employed people also have trouble affording health insurance. Until we (at last!) qualified for Medicare, my husband and I paid $700 a month for a $6000 deductible policy. I put off a colonoscopy until I got Medicare, taking a chance that I wouldn’t regret it. (Fortunately, I didn’t.) It saddens me, living in rural Virginia, to see so that so folks here, who are struggling financially, and who could most benefit from a national healthcare program, are the ones so vehemently opposed to it.

    Susan Kroupa
    http://www.susankroupa.com

  2. Brenda, this was an education. Thank you for writing it. This is a point that I have never seen expressed before, and although I was dimly aware of it, this brought it into the light. I hope you don’t mind, that I forwarded it to Bill Moyers–hoping that he takes up on it.

    • Thanks, Anthony! I hope that word does get out a little. There are people who believe that all writers are rich, and all actors are millionaires. Would that it were so!

  3. This is one reason I worked day jobs. They had health insurance, and I was not going to do without. I might have written more, if I’d had more time, but at least I could go to the doctor.

    • And what if you have kids? I might be willing to go bare, but my kids have to have health insurance. Yes, a day job, if you can get one with benefits, is a common solution. But good luck with that if you need one now.

  4. Yesterday, my massage therapist told me that she had been paying more than $400 a month for plan that really just covered catastrophic need. In Oregon, with subsidies, she can now get a better plan for $70 per month. She’ll be scheduling that colonoscopy that she should have had 5 years ago.

  5. Thanks so much for telling this story. Jo survived another year and a half, but how many others — less well known, without friends to jump in and insist on helping — either die or live with significantly worse health?

  6. Sadly, my friends and I are dealing with this now. A person who has helped all of us time after time has only basic Medicare because she can’t even afford to pay for the extra programs. Medicare pays for 20 days of assisted living, and then they boot her out. She can’t walk. She can’t afford a nurse. She has no family. She won’t be able to cook for herself. The medications she’s on makes it impossible for her to exercise–which is the only way the doctors say she’ll get better. It’s bad enough that the medical profession treats us like this, but is this how we as a country want to treat each other? Her friends are scattered across the country. I’m 3000 miles away. Medical care ought to be just that–care until one is well. We should all be willing to pay a little extra to help those who can’t help themselves–because one day, those people will be friends and family of ours and we won’t be able to help.

  7. I was one of the lucky ones; I was managing to scrape enough money together to pay for a very basic medical insurance policy. Last month I got a letter from Blue Cross informing me that my premium will be going up approximately 75% on January 1st, and the new plan will cover more, regardless of whether I want or need it. I went to the state’s web site and looked for a cheaper plan, but discovered that underwriting standards have gotten…strange. I could understand charging more for current medical conditions, but for something that was permanently fixed by surgery 30 years ago? So I guess I’ll be staying with Blue Cross, assuming I can come up with the extra money. (How much was that fine for being uninsured? And how long will it take them to catch us and impose the fine? Maybe I can get my outstanding debts paid off before then.)

    • Elizabeth, the scandals of insurance companies trying to rope people into policies that are going to be flatly illegal are starting to come out. Check again–and if you still can’t find decent rates, contact your local representative. Make sure they understand that there are still rather large loopholes that state citizens are falling through.

      I am approaching my venture into ACA land this week with trepidation. I have been so ill the past two years I have earned very little. But Texas did not take Medicare/Medicaid extension, and since I have savings I have lived on, I am not sure what I will qualify for. And we have almost no navigators, Perry and his crew fighting their very existence, and trying to delay their helping people by setting up extra hoops for the navigators to jump through.

    • Please check on Healthcare.gov after the website is fixed. I believe you will find good health insurance policies available to you, for a price you can afford. The plans that BC/BS is trying to force people to accept now are far higher priced than what is available on the exchanges.

      • Yes, the situation is definitely in flux right now. But people should not give up. For the first time in the lifetimes of everyone reading this there is hope for health insurance for all.

    • Elizabeth, part of the ACA already in effect forbids insurance companies from denying coverage due to pre-existing medical conditions, which seem to be part of your problem. I don’t know what you can do to challenge them on this, but there must be something. Many people including Jay Lake have been commenting on the benefit this has already meant for them.

  8. It is not difficult to find stories of writers and artists in Europe or England. How very, very different their stories are! They are boring: I had bronchitis, went to the doctor, and he gave me antibiotics and I am fine. Lawrence Watt-Evans fell off a curb in France and broke a bone in his hand. He went to the doctor expecting to be picked clean like a carcass in the desert. But after they put him into a cast they pushed him out. No bill. This is France, they said with pride. You poor American.

    • Um. Not what happened.

      It was in England, not France; I tripped in a pothole in London where someone had considerately painted a crosswalk over the hole, rendering it almost invisible, and I broke my hand in three places because I was unwilling to drop the expensive camera I was holding.

      I did not seek medical attention while in England because I had no idea it was broken; it didn’t particularly hurt, so I thought it was just a sprain. I waited until I got back to the States to get it examined, where I was very surprised by the diagnosis. Had reconstructive surgery and spent a couple of months in a cast, all but $20 of it paid for by my wife’s excellent medical insurance.

      (Every so often we get a questionnaire from her HMO asking, “Are you sure you don’t have any other insurance?” Which I don’t. But hers is great.)

  9. My mother (a college professor) and I saved up for two years to go to England one summer, when I was 16. Of course, in the middle of our three-week trip, I got sick: a very bad case of chicken pox. My mother took me to a hospital in London, where a very nice (if frazzled) doctor took a look at me and gave us some advance and a list of drugs to help with the itching. When my mother pulled out her wallet to pay, he straightened up and proudly told us that this was England. Health care was free.

  10. Nice and timely post Brenda (I’m including it in this Sunday’s news roundup).

    I attended college in England for a while and got shingles while I was there (ages ago); I wasn’t too happy with the diagnosis or the treatment (rest, calamine lotion for the itching) but called my family physician stateside who informed me (again, ages ago) that since it hadn’t been caught early enough, I was being treated in about the only effective way known at the time. My cost? zip.

    I find the fight over single-payer/universal health care for US citizens to be an ideologically strange one: every study I’ve ever managed to look up strongly suggests that such a system, especially one that emphasizes preventative care/wellness care, costs far, far less than any other approach – especially when it comes to the effects of medical care, illness and injury on business. Yet big business seems to be largely on the side of preventing such from coming into being. Yes, insurance carriers are big business and they stand to lose billions and billions – that they’d make back in a heartbeat by increased worker production, lowered industry insurance costs, etc., etc. Furthermore, most businesses love to be able to move an expense from the “unknown and highly variable” column into the “known & consistent” column.
    Just boggles my mind….

  11. It distresses me that the conversation in the USA is always about health care *insurance* rather than *health care.*

    The person who has difficulty with living alone might find some assistance from Medicaid.

    England’s national health service is often held up as an example, and perhaps it was, but are folks not aware that their current conservative government is privatizing NHS hand over fist? Some of the conflicts of interest are appalling.

    The NHS situation was the cause of the mostly-incomprehensible-to-US-Americans Children’s Hospital section of the Olympics intro a couple of years ago. It was meant to warn the government to keep hands off NHS, according to Daily Kos.

    Apparently it didn’t work.

    • Agreed, Vonda. The proverbial phrase “Yankee ingenuity” didn’t come out of nowhere — so why haven’t we used it to solve more therapy problems, particularly with new technologies that are affordable?

      This is one way in which I personally feel betrayed by the current crop of political leaders. With all the talk about improving health care, they implied that we’d be developing better therapies … but what emerged was merely a scheme to have the same therapies paid for differently.

      I won’t say, “If we can put a man on the moon, …” because we can’t at the moment. But by gum, we DID. We set ourselves a goal, and we achieved it. The SFF people I know and respect think along these lines constantly, often presenting scenarios in which problems were faced and solved. How have we changed?

      Furthermore, the current depiction of the private center seems to be saying that all other interests have been subsumed to increasing the bottom line. I’m looking for those corporate leaders who will show us that this isn’t true, that non-government people are interested in actually improving the quality of life. Particularly in health care.

      • My idea for all this was simple. It was just to grind Medicare down the age scale. This year, you qualify if you are 65 (I think). Next year, you would qualify if you were 64. Gradually, un-disruptively, the entire population would be added on; probably by the time you got to the relatively small remnant of people between the ages of 24 and 29 (or whatever it was) they would just bite the last bite of the apple in a gulp. And then, voila! Total coverage for all, in our lifetime!

      • During my misspent time as a graduate student in genetics, I did notice that most research in our department was directed toward *basic* research — figuring out how things worked from the molecular level up. That was a long time ago.

        These days it looks to me like most research is top-down — how do we cure the Disease of the Month? — and in my opinion this is a horrible waste of research dollars, time, and energy.

        Researchers shouldn’t have to spend half their time finding money.

        Politicians shouldn’t give “stupid research project of the month” awards (an attention-getting activity of very long standing) to projects whose title they don’t understand and about which they’ve bothered to find out nothing.

        But I don’t have strong feelings about this or anything.

        V.

        • One of the most hugely devastating effects of the current budget nonsense ongoing in DC is the effect of draconian sequestration upon the sciences. We are devastating one of the great intellectual achievements of our age, the research culture. (The other major casualty will be more short term, when they gut the military budget.) Congress is corporately and individually irresponsible, a batch of neglectful caretakers of our country.

    • I HAD kindasorta medical insurance for a while there – catastrophic only, high deductible, you know the works. And then I crossed another age bracket barrier and the premiums – which i was already struggling with, on a monthly basis – these people don’t care that YOU don’t get a nice tidy monthly check, so long as THEY get one from you – shot up and out of range completely. I am a relatively healthy middle aged woman who has never smoked – but oh, hey, I am now getting to an age where, you know, I might actually NEED CARE – and that will COST SOMEBODY MONEY – so therefore my insurance against such an eventuality is immediately priced out of my reach, so that the person whom it will cost is finally and ultimately ME (and if I die, oh well, I just wasn’t capable enough at living to deserve it, I guess). Upshot of all this – I quit having health insurance and just hoped to God I didin’t get sick. That might change come Jan 1. We shall see.

      But also, I find it INSANE that in the USA they basically treat things like spectacles and hearing aids and dentures – eye, ear and dental health – as somehow separate from “real” health. Medicare, which covers old people who might be expected to have problems with hearing or seeing or chewing…? SPERCIFICALLY doesn’t cover these things.

      It’s like the entire focus in America is to make absolutely sure that as much money is extracted from the “patient” as possible without actually providing any actual services for those fees. I’m sorry, but I don’t get it. I am European-born. I still think in those terms. In America, so long as the almighty dollar is left to rule unchallenged, actual people are disposable.

      • Alma, I agree with your rant about the American health care system. A single-payer system that gets the insurers out of health care would be so much better. Unlike car insurance or home insurance — which only kick in if you have the bad luck to be in an accident or disaster — health insurance is something we use all the time. It really shouldn’t be insurance. Yes, some people use more than others because they get cancer or something else bad, but all of us need health care.

        But the Affordable Care Act, despite its flaws, is a hell of a lot better than the previous system. (I used to cover issues related to it for my day job, so I know what’s in the law.) Please do try applying for coverage under it. I think you’ll find you can get decent coverage for a lot less than the catastrophic plans that used to be the only real option for the self employed.

        It’s awful that the program has been so plagued with bad computer design, because I think a lot of people are going to find good insurance through it once they can get into the system easily.

        In fact, I don’t think President Obama was being dishonest when he said “if you like your plan, you can keep it.” He probably couldn’t imagine that anyone with a plan with very high deductibles and limited coverage liked it better than a cheaper plan with better coverage. I can’t either.

        • When you consider how complex the issue is, and how many people need to sign on, it is no wonder that it had a rocky start. I too am confident that after a shakedown period the ACA will be a great asset and will save many lives.

  12. Thank you for remembering Jo! I still think of her every day. She wanted her story to be tod and re-told to remind people of the risks that come with being uninsured.

  13. I have been paying for the BC/BS high deductible insurance for 7 years already, since for the first time in my working life, my employer does not insure us. I am nearly 59. No health concerns whatsoever, never smoked or took anything ever, don’t drink. Never went to a doctor in all of these years. YET, if I switch to this new insurance which would cover more, and start getting preventative care, and like it, then what happens if this insurance deal falls through? If I then have to return to BC/BS, my rates will be astronomical because I went for a mammogram and maybe even a colonoscopy. I have no idea of whether to go with the new insurance plans or not. Very confusing.

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