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.
© Michael Watson, essay and photograph