The day began at 3:00 a.m. -- not my favorite hour to crawl out of bed. I hit the snooze button at least twice and at 3:30, the phone rang.
It was Mom, calling to make sure I was up and ready to go to Kroger's in Fountain City, Tennessee to get in line for a flu shot. I told her I'd be ready to go by the time she got to my house. She hadn't slept much the day before because, well, she was worrying about one of her kids. At 41, I don't feel much like a kid anymore, but at 71, mom still thinks of me as her "baby."
There was little traffic at 4:00 on Monday morning, but Mom punched the accelerator at every light like a horse starting the Kentucky Derby. She was determined to make good time and beat the crowd, pushing her 16-year-old, four-cylinder Honda Accord to the limit.
I was number 56 in line, according to the number on the chair I took. Mom took number 57. The chairs were lined up facing each other along an aisle where the "feminine products" and Depend undergarments were neatly stacked. Once seated, we engaged in small talk with the folks around us, most of whom qualified for their own numbered chair by virtue of being at least 65 years old.
Soon, the stories began to circulate -- stories of family members and friends, local politics, life in retirement homes, and stories of others going through the ordeal of obtaining, or in some cases, being denied this season's scarce flu shot. I knew how long Mom had waited in line to get her flu shot the previous week, but we didn't want to bring that up for fear that someone would ask her to give up her seat. If that happened, I'd need to depend on the kindness of others to help me navigate the line and fill out the paperwork. I didn't want to ask a stranger to check the box that indicated my need for a flu shot: "weakened immune system." That one always raises an eyebrow.
As the hours passed, I began reflecting on the experience as a classic dilemma in medical ethics. After all, this was an exercise in allocating scarce medical resources, an issue I had written about in grad school.
As a person with AIDS, access to health care is a big issue for me. Before I contracted HIV in the '90s, I remember hearing about activists in the '80s demonstrating for early access to AZT in the streets of New York, Atlanta and San Francisco, so that they and other people with HIV might live a few short months or years longer. I have often thought of those early AIDS activists as soldiers who took the first and worst casualties in the war for access to HIV health care -- and how I likely owed my life to them. Now that I've joined their ranks, I have a better appreciation for their sacrifices and how hard they worked to knock down the social, cultural and economic barriers that stood in their way. I also have a greater appreciation for how much work still needs to be done.
As I sat sipping coffee among these people roughly twice my age, I listened to their own struggles with health and health care.
The man next to me was diabetic. A lady across from me had palsy. Several people down the line had heavy coughs. The man next to mom complained of severe neuropathy down his right side. He was a tall, fit, 75-year-old, who, up until last month, had worked out every day, doing bench presses and arm curls with heavier weights than I ever lifted when I was a young, healthy, weight-lifting, ball-playing jock. He had stopped lifting after his doctor told him that such strenuous workouts could make his neuropathy worse.
I had read a lot about neuropathy, so I talked to him about how the nerve cells are covered in a fatty, insulating sheath, much like electrical wires are coated with plastic or rubber. In neuropathy, when this protective coating is damaged, our nerves "short-circuit" and cause us to feel sensations like bee stings or needle sticks. He'd been suffering from this considerably.
As we talked, I mentioned how this flu shot experience brought up the ethical issues of allocating scarce medical resources that I had studied. I outlined the various systems used to administer rationing, such as the principle of medical necessity, the "lottery method," and "first-come-first-served." Waiting in a series of numbered chairs seemed to fit the latter model. He also figured that anyone who could afford to plunk down $500 would likely have no trouble obtaining a shot. No doubt.
Then he told me about his son -- a disabled Vietnam veteran -- who had recently waited in a long line for a flu shot but was turned down because he wasn't elderly and didn't "fit" any of the other acceptable risk categories -- like having a weakened immune system.
I was speechless for a moment. No longer proud of what I knew about medical ethics or neuropathy, I was shocked to hear that such basic medical care had been denied to a disabled veteran. I said, "That's a crying shame."
His story reminded me of another, often theoretical, criterion for allocating scarce medical resources -- moral worth. While a person's demonstrated moral worth is often discussed as a possible criterion to consider in divvying up limited resources, it's generally thrown out of the mix as ethically problematic: How do we determine a person's moral worth? By how hard they work? By how much they contribute to charity? By how often they attend church? Okay, but if these criteria are used, only those able to work hard, give to charity, or frequent churches would be able to access needed health care, leaving the poor and infirmed and incarcerated out of the running. Where's the justice?
Mom got up to get more coffee and pastry. She returned with two half-filled cups of coffee, and one sweet roll, cut in two. She said they were rationing the refreshments to make sure there was enough to go around.
I was reminded of the '70s, a decade I can remember, when gas was rationed. I was reminded of World War II, a time I never knew, when the whole country was forced to ration coffee, gas, and other staples for the war effort. My grandmother's stories of the Great Depression came to mind. I looked at Mom and asked, "Wasn't World War II the last time we had to ration goods in this country?" She laughed.
After waiting nearly five hours in line, I finally made it to the nurses who were taking forms and deciding who would and wouldn't get their flu shot. One nurse noted my white cane and guided me to the folding chair next to her table. She asked me if I had been blind since birth. I informed her that I had only been blind since 1996. She said, "Okay," and continued examining my form. I realized she didn't have all the information as she needed to make a decision, so I leaned closer to her. In a low voice, I explained that my loss of sight was due to CMV retinitis related to HIV. She immediately put down the form. She asked me if I was feeling okay today. I said "Yes." She asked me if I was allergic to eggs. I said, "No." She asked me if I had ever gotten a flu shot before. I said, "Yes." She swabbed my arm, administered the shot and stuck on a band-aid.
Why did I feel guilty after I got my shot? Maybe it was because I hadn't always worked hard, or contributed to charity, or gone to church, like many of those around me had. Maybe it was because I had never served in the armed forces. Maybe it was because I saw a woman, about my age, with no apparent medical condition putting her into a "high-risk category," get turned away just before I stepped up for my shot.
Today, I heard that 20 million more flu shots are going to be made available. Health Secretary Tommy Thompson is telling senior citizens not to wait in lines anymore, but instead, to ask their doctors for the shot, when it gets here, from Canada, in a month or two, or three.
I wish I knew how many "people years" of experience were in the line yesterday at the Kroger's in Fountain City, and I wish I could take all that wisdom and transplant it into the minds of our leaders so they'd think and act in a more proactive and responsible way.
Nevertheless, I want to thank all the Health Department workers and the folks at Kroger's who have been getting up in the wee hours of the morning to help ensure access to basic health care -- for those who "qualify." I also want to thank all the healthy people who are giving up their shot for not-so-healthy folks, like me, and I offer them my hope for a mild flu season.
And, last, but not least, thanks to Mom, who, by the way, gave her place in line to a lady in a wheelchair.
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