Illness, Disability, and Servitude

Early_Summer_SunriseToday is cool and rainy and the garden seems grateful. Although we are now into June, the songbirds greeted the rain this morning with noisy jubilation.

Friday I attended an ethics conference that sought to address ethical concerns of mental health professionals. As too often happens, the presenters seemed more concerned with legal issues than with the moral and ethical issues that drive clients to seek aid. At the end of a mind numbing, profoundly frustrating day, a colleague told me that his spouse had been diagnosed with a rare cancer. Apparently the cancer can largely be managed, but at a cost of $175,000 per year. My colleague and his partner had sought aid from their insurers, but were denied. Fortunately, she is a vet, and the cancer was deemed likely to be service related, so the cost will be covered by the V. A.

Driving home, I thought about a former student who died of breast cancer a few years ago, when she was in her early forties. For some years she had been on a cancer medication that was affordable and effective. However, the manufacturer decided it was no longer financially viable and, although knowing this would likely be a death sentence for a number of women, discontinued production; my student, who had been vital and deeply engaged in our community, died a few months after that. I also know a man who uses an expensive anti-cancer drug to control prostate cancer. Although his insurance covers almost half the cost, his portion of the cost would be out of reach of most of the folks.

The new model for cancer treatment is to render the illness a chronic condition. This strategy offers much hope, yet, given the greed and indifference demonstrated by the pharmaceutical industry, also opens the door too much misery. There seem three likely, perhaps overlapping, outcomes if current trends continue: a system that only treats the wealthy; a system that bankrupts patients before abandoning them; and a world in which healthcare absorbs most of every dollar.

I wonder: what solace or advice are we healers and health care practitioners to offer patients caught between terminal cancer and impossible medication costs? What sort of moral sense are we to make of what seems, increasingly, to be a form of indentured servitude? Why are there not more voices for change, within government and medicine, and in the population at large?

This problem of affordability is also faced by the vast majority of individuals and families with disability. We have been looking for a vehicle that could accommodate a lift, and my scooter, and are again reminded that it is very expensive to be disabled; accessibility is costly, both to the public, and particularly, to those who are disabled.  I wonder how my parents managed the expense of having a Polio child, especially after the March of Dimes withdrew support from Polios, post vaccine. With the vaccine, and the subsequent end of the epidemics, fundraising focused on other illnesses, leaving over a million Polio survivors, and our families, to fend for themselves. This after promising support for as long as it was needed; for many of us this would be a lifetime!

Thinking about the ways catastrophic illness becomes a rich resource for non-profits and corporations alike, I am reminded of the wider arc of  U.S. history. The U.S. grew wealthy by stealing the land, culture, and resources of Indigenous people, before reaching out to plunder much of the rest of the world. Now, as the world challenges our country’s domination of markets, resources, and peoples, corporations have begun to use the techniques and technologies they honed on others, on us, and are doing so in an increasingly blatant, hungry, and soul-destroying manner. (They have become Windigo.) I find myself enraged and heartbroken that the promise of humanely managing disability, cancer, and other illnesses, as chronic conditions, moves ever closer to being a nightmare.

 

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12 thoughts on “Illness, Disability, and Servitude

  1. I, too, am enraged with how greed (corporate and individual) continues to suck the soul out of our country. The pharmaceutical companies claim they need to charge that much because of the high cost of the research, but there are a whole lot of people at the top who are getting rich and the companies are posting high profits. This is a very well written essay, Michael. I think you should do a little editing and submit it to the Wall Street Journal.

      • Funny that I was looking back at some of my older posts and came across one that touched me deeply – I like it a lot and think it worth editing and submitting for publication but then had the same thought as you. Is it worth it when the chances are slim? I wonder what the acceptance rate is. Anyway I would really enjoy giving you suggestions but would prefer to do it in word. If you are comfortable doing so, e-mail me at jimpatbailey@gmail.com so I can send my suggestions to you by e-mail. After you record my e-mail, would you please delete this comment so I don’t end up with unwanted e-mails.
        Here is a link to useful information for op-ed submissions to the New York Times. http://www.nytimes.com/2004/02/01/opinion/and-now-a-word-from-op-ed.html

  2. Your important post about the greed of the medical and pharmaceutical industries and the treatment of Native Americans reminded me of a visit Tommy Thompson made to an under-funded reservation clinic when he was the Secretary of DHHS under Bush, Jr. The tribal newspaper quoted his remarks. “You all need to eat a better diet, get more exercise, and become organ donors.” I was shocked that there were no editorial comments on his message…

    • Carol, I am so disturbed by the silences that surround us. Not the “silences” of Nature, who is never really silent, rather the refusal to speak to the abuse of power that seems the norm in our culture. The enormous number of microaggresions used against minority groups of all sorts is truly astounding and, very often, terrifying. Yet most folks seem to simply not get it, which I find adds much to my sense of disturbance. So often, those who do not know blame those who do. Maybe if we ate better we could overcome poverty and hundreds of years of genocide. Really?

      I am relatively privileged, in that I usually have more than enough food to eat and share. I also have access to health care, although I also know, as a provider, that access is slippery and finite. None of this erases my knowledge of the capriciousness of life, the sadism of too many people, and the presence of injustice and suffering. This week, I am angry. I’m sure this will be interpreted as a personal failure by many, especially those who want me to fit whatever their version of a healer may be. Well, I want them to be angry enough to speak truth to abuse. But, of course, you know all about this already. Blessings.

      • Anger is understandable and an appropriate response to the brutality of the past and present, Michael, as is deep, deep sorrow. I send blessings to you, too. Our paths are not easy…

      • Thank you, Carol. For whatever reason, the anger and sorrow remain present and strong. There is a deep sadism in the marketplace that continues to mystify me. The destruction of beings and ecosystems defies thought.

  3. Greed make people to do almost everything, sad but true Michael.
    It is costly to have chronic illness too and again, greed either from the pharmacy world or by the government destroy it for many.
    Ethic and moral come far behind the greed…

    • Fortunately, there are many people who manage most of the time to place ethics over greed. Sadly, a few bad actors can do much harm.
      I am looking forward to a virtual tour of your new home.

      • You are right Michael and I’m grateful for that.
        I didn’t move far away, 5 minuts walk from the latest apartement, as was just beside the Mediterannean Sea, but I found a house with garden close to, so more easy to move, when I can walk between the homes.
        I will show some photos from here and from my walks.
        Wish you a happy new week.

  4. I have a friend who just returned from a vacation in Greece. Before she left there, she fell and seriously injured both knees and sought medical treatment. The Greek doctor was very knowledgeable and kind. He ordered an MRI just to confirm his diagnosis. The MRI cost $375. Here in the US, just reading an MRI apparently costs about $1,200.
    I’ve heard of medications that are very expensive in the US but cost only pennies on the dollar in poorer countries (sold by the very same companies).
    Big Pharma’s greed seems to have no limit. Anger is an appropriate emotion and it needs to open a path to limit the power of HMO’s profit motives and to reign in the power of the pharmaceutical companies. I am at a loss for what that would look like, though…..

    • Yes, the medical-insurance industry seems determined to generate profit without regard to the consequences for people. I’m at a loss as well. Perhaps having a real, public conversation about the issue would help.

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