I am alive today because of world-class medical care. In the 1980s I was diagnosed with an aggressive cancer that used to be 100% fatal within six months. But I live in the San Francisco Bay Area, home to some of the world’s best hospitals and medical schools. My cancer cell type was identified by a pathology professor at Stanford who wrote the textbook on diagnosing the disease, after first being mis-diagnosed at my local hospital. My cancer doctor had sent a tissue sample to him for a second opinion. Without his second (correct) opinion, I would be dead. I also received a new treatment protocol developed at Stanford, one that changed the disease from being fatal to being 80% curable—a miracle cure, essentially.
Then in 1999 I fell ill with viral encephalitis, a brain infection that has no treatment and a high rate of mortality and, even if you live, possible dire aftereffects like blindness and paralysis. Due to a crackerjack ER team (many of whom were trained at the world-class local medical schools I mentioned), at a hospital in one of the most affluent counties in the country, I not only survived the illness but avoided any “residual” aftereffects. I made a full recovery—another miracle, in the words of my neurologist.
I am quite aware that had I lived anywhere else, or had I been a person of color, or even simply a woman, things might not have gone so well. I might not have been seen immediately, received the correct diagnosis, or had the latest treatment. In other words, I might be dead. My experience is one instance of the pervasive inequality that exists in American medicine. There are many parts of the country—especially rural areas—where hospitals and clinics are few, where it is difficult to recruit first-class doctors, where people often have multiple chronic conditions that are not tracked and treated, and where their reported symptoms are sometimes not taken seriously.
In other words, medically speaking, I am a person of privilege. My very continued existence is an aspect of that privilege. These same inequalities were brought out in stark relief during the Covid epidemic. A recent article on the Mayo Clinic website pointed this out, saying, “Overall, racial and ethnic minorities in the United States have had higher rates of infection and death caused by the COVID-19 virus than white people.” Among the possible causes the article mentioned were other medical conditions, type of work, geographical location, access to health care, and racism. Other medical conditions could include obesity and high blood pressure, type of work could include occupations like working at Amazon or Walmart where remote work was not possible or where workers had to be close together. Poorer neighborhoods or states, lack of nearby clinics of doctors, and racial prejudice in diagnosis and treatment are also factors.
There is more to this picture: a recent study cited on the NRP website showed that white people feared Covid less after learning that other races were hit harder. One of the study’s authors said, “What we found was that the more people perceived there to be racial disparities, the less fearful they were of COVID-19, and the less they supported safety precautions to prevent the spread.” I had always found it difficult to understand the resistance to masks and vaccinations; why wouldn’t people want to protect themselves from serious illness and possible death? It seemed illogical to me. This study reveals what might be an explanation—the notion that Covid was a disease of “other people not like themselves.” People interviewed at the time would say, “Well, I don’t know anyone around here with Covid, I think the government is exaggerating.” If we believe the NPR article, there may be a hidden meaning behind such comments.
Because of my personal experience with medicine at its best, I am sensitive to the knowledge that, through no fault of their own, many people would not have access to the “medical miracle” that I had. It’s one of many areas where inequalities in our society hit the hardest. We are not just talking about educational, vocational, or income disparities ( e.g. women making less money than men). We are talking about life, survival itself.
I fear that in the coming months and years these medical inequalities are likely to become even starker, leading to even more societal strife, and, in some cases, even violence. People know when they are getting a raw deal, and if the deal is raw enough, at some point people will say, “Enough.”
Not a pleasant prospect to think about, but if we want to be an aware, awake and engaged member of our society and country, we need to think about it.
Lew,
Great article as always–Personal, perceptive, helpful, and thought-provoking.
I, too, have had a number of medical challenges that were potentially deadly, but am alive because I had a doctor who was well-trained to recognize the symptoms of a rare adrenal tumor that most doctors would have missed and then was referred to a world-class teaching hospital in San Francisco where a surgeon who had performed the surgery numerous times before saved my life and followed up with me over the next 10 years.
Two comments. Even the system that favors people like us is failing in many ways and if we had the same problems today, we may not get the kind of care we received in the past.
Plus, if you are not as privileged as us, you are even worse off.
Healthcare could be better for us all.
Hey Lewis,
Thanks for being a medical miracle in a place of special care. I’m in Canada and we too have great health care and some of the best outcomes in the world.
And there are also many other ways to do this well.
As you note in this column, you “might be dead” were it not for a lot of interventions. Costly, I might note, entitled too.
My wife of more than 40 years, Jeannie, died 2 years ago of GBM brain cancer. Her first cancer was breast cancer, which she survived more than 20 years ago. What I have learned by living with aging and disease and dying and death is that interventions are not always possible, necessary or even desirable.
Why fear aging? But our societies do. It’s as much a natural process a birth and growing up and reaching our maximum potential.
Or disease? “What does not kill you makes you older” Jeannie often quipped. Or she could have been run over by a truck while bicycling which she loved to do and continued enjoying even after her terminal cancer diagnosis.
Or the dying process? All of these are a new adventure. Jeannie lost sight in the left side of both eyes due to the cancer, so she asked our daughter to put green tape on the floor from her bed to the bathroom so she could continue with her passion for being autonomous. She also said “RUM TIME!” every afternoon at 5 pm. And she had all kinds of other things she loved, including the song LOVE by Joni Mitchell. When Jeannie’s words failed her she just held up three fingers and that was the sign to me to put the little Bluetooth speaker on her chest and play LOVE three times in a row. So many ways to do this well.
Or death? Another adventure. Stay out of hospice, and certainly out of hospital, if you can and die at home. Cheaper, more fun, and you can decide on the drinks and music. Brownies too – with tweaks. Jeannie had a “good death” as these things are defined – she died where she wanted to die, how she wanted to die, and with the people she wanted with her. No muss. No fuss.
You mention “inequalities” inherent in the system that has kept you alive. I was born in Cuba and grew up in Venezuela and have watched as many of my family members, friends and other have walked to death’s door. I’d say one of the inequalities in the health care system in so-called developed countries is that aging and disease and dying and death are seen as failure.
What’s up with that?
We all come into this world naked, leave it the same way.
This is an area of education and struggle and growth for each of us, our communities and our society as we learn to embrace all parts of life with wonder and enthusiasm.
Health care resources, no matter where we live, are limited. The sooner we reset our expectations and priorities the better….
Thanks, David 403-383-4428