The COVID-19 pandemic challenges our notions of how “normal” life works. Work-at-home, virtual education and social distancing are giving our entire population a taste of how everyday life functions for many of the USA’s nearly 60 million people with disabilities. What typical people are unable to share in, however, is the way people with disabilities are treated as expendable, somehow not-as-fully-humans, by our political, legal and health systems, and the responses to COVID-19 are bringing those distinctions more clearly to light.
Calls are spreading across the country for withholding health care from people with chronic and severe disabilities, to expose everyone in order to “cull the herd” or to preserve scarce resources for “normal” or younger people. The states of Alabama and Tennessee have already declared that certain groups, including people like me with ALS, are not to be admitted to hospitals so that people who are more qualified for living can receive care. Official crisis guidelines in many states even call for removing ventilators from chronically ill people who use them in order to give the machines to others deemed more worthy of life.
I will be blunt: this is state-sponsored murder.
These are systematic, premeditated plans to actively take lives.
This is discrimination against people with disabilities.
These are decisions to kill people who are arbitrarily deemed expendable.
Our for-profit health care system, and those who support it, is an accomplice to these crimes. For-profit hospitals treat unused beds and equipment as unsold inventory and strive to maximize occupancy and utilization in normal times, resulting in far too few beds and other equipment available in health crises. My local hospital has 55-inch flat screen televisions for every patient, but at last count just one cough-assist machine for clearing out fluid in people’s lungs. Do we entertain people so they care less about the cost? Or do we entertain people in order to drive up the profits? We are already experiencing a massive disparity in health outcomes for poor (read: people of color) areas due to deportation fears and the excuse of treatment not being economically viable, and now people who are otherwise not typical are being told to give the ultimate sacrifice in order for "normal" people to live longer.
Germany, which has a rational health care system and a culture that believes in protecting the common good, has 4 times more hospital beds per capita. The U. S. has 1.5 times more COVID-19 cases than Germany, but we have nearly 6 times more deaths. Finland has 1/10th the cases, 1/25 the deaths. Sweden and Canada: same as Finland. Norway: even better.
To be sure, governments in those countries were better prepared for a pandemic (and didn’t deny they had one) and they have populaces who actually listen to their governments. But they also have health care systems with more reserve capacity available in times of crisis. Our system, built and enabled by our governments, has failed in the first and most vital responsibility - protecting, without discrimination, the lives of its citizens.
I anguish with my fellow people with ALS, and all those with disabilities, who now are faced with the prospect of not seeking medical care for fear of having their ventilator taken away and being left to die, alone, in a hospital. I grieve for medical professionals who are forced into choosing who lives and dies. Mostly, though, I am genuinely angry that society is so quick to judge my life, and that of others like me, as less worthy of living.
I have a lot of political hot buttons and, while I try not to write about them all, this is one that is not particularly partisan and drives me absolutely bonkers. Yesterday at his now daily coronavirus press conference President Trump touted the possibility of people using the Right To Try legislation to access prescription treatments not approved by the Food and Drug Association (FDA). Drafted and lobbied for by the libertarian Goldwater Institute think-tank and pushed by several people with ALS (pALS) and pharma companies, Right To Try was signed into law in 2018. I was against Right To Try (RTT) before it was law, and nothing I have seen in the past two years has changed my mind. RTT was, and is, nothing more than a red herring that distracts people and politicians from the very real issues facing those of us with life-threatening illness and no options. I, more than most, understand the desperation that goes with fighting a terminal illness that has no effective treatment. I share the frustration of seeing one drug after another look promising in mouse trials and flame out in humans, doing nothing or even accelerating death. And I also chafe at FDA trials that take too long and have participation requirements that are too restrictive. Unfortunately RTT solves none of these problems. Right To Try legislation allows a person with a life-threatening illness to request of a company making a treatment that has passed FDA Phase 1 (human safety) trials access to that treatment. Proponents of RTT argue that the government, in this case the FDA, should not stand in the way of a person with informed consent trying to save their own life. The FDA drug approval process consists of three major phases, and phases 2 and 3 can take 3-10 years to complete after a drug is proven safe. The average pALS has only 2-5 years to live. The criteria for participating in a Phase 2 or 3 trial are so restrictive that finding enough qualified and willing participants with relatively rare diseases can take years. And God knows none of us want to spend precious months in a trial only to find we have been receiving a placebo. Given this situation, RTT sounds like a good idea. Bypass the FDA and go straight to the company to get an unapproved drug that just might lengthen your life. But here are the problems:
Steve needs a creative outlet since he no longer plays instruments due to ALS. He believes there can be music in words, too.
Oysters, Scallops, Conches
We are created to have abundant, meaningful life. Life where joy, beauty and love abound even in the most tragic of circumstances.
Find out how in Shells: Sustained by Grace Within the Tempest.