"Is This the Message You as a Doctor Want to Send?"
Talk about sobering and thought provoking. That question arrived from a physician I deeply respect in response to my last post on racism in medicine.
"No matter how strongly you feel about [the long history of medical discrepancies and systemic racism in medicine], think what sharing this post now means in terms of encouraging people to trust enough to get vaccinated."
I understand my recent writing raises uncomfortable issues; for every blog post since June, I have had as many unsubscribes as new subscribers. And I have received many replies that excoriated me, challenged me, or queried my motives, most of which, I confess, I have thought long and hard about. (Except one who said, in response to my post on Confederate Monuments, "Don't write me again until you are less bitter." That was a no brainer, delete. )
And I gave considerable thought to this one. But, yes, as a physician, yes, I want to be speaking the truth. Denial of hard truths doesn’t erase them. And I owe the world my truth.
Gratefully, most of the responses I had from medical personnel were more on the lines of “Thank you for the education." "May I share?" Which for me was the intent.
Race is woven into every aspect of American life. And our US refusal to reckon with that has been a devastating and expensive failure, and is the root of many of our current issues.
Black and white people in the US really live in parallel universes, heightened by socio-economic and class differences. Most of my blog readers are theater going audience members, majority white, middle to upper middle class. Yet many lack deep awareness/information of/on the history/impact of racism in this country. In the current climate, I have chosen to use my blog to increase awareness of what we (Black, POC) have experienced/endured, with the philosophy that knowledge is golden.
(Meander: A Black female sociologist, Courtney Cogburn, PhD , has developed a VR game to allow people to experience being a black male at 4 stages of life in typical situations where racism manifests: nursery school, teen outing, job applicant. But without her game, absent marriage to a Black person, raising Black children, or perhaps attending a HBCU, visceral understanding of our lives is elusive.)
I do not believe that speaking truth undermines trust. Quite the contrary. Failing to speak truth is failing to acknowledge the elephant in the room ; it only looms larger. In this time of "alternate facts" and highly politicized discourse, with 45 threatening to fire the FDA chair if he failed to approve the vaccine on demand, confronting difficult truths is what we all must do, especially in the realms to which we alone are privy to real facts.
Long before I was a doctor, I was a young Black girl growing up on the Upper East Side of Manhattan, educated at Dalton School, then Hunter College High School - so privileged, many would think (if not say), what do I have to complain about? Well, relative privilege didn’t shield me. In fact, it made me more of a target in many, many, many ways. (Just as Obama’s success galvanized white supremacists.) My grade at Dalton had two classes of 20, by 6th grade, each had exactly one Black student, and we were both girls. The sole Black boy's mother pulled him from the school after 4th grade, feeling the school was toxic for him. The sole Asian, a Chinese girl, my best friend, left a year or two later. At the end of 8th grade, I left the school I had started as a 3 year old (to attend a magnet public High School, Hunter College High School), as did the other Black girl (to attend her local public school), though the then all girls high school was a crown jewel of NYC education.
Sadly, I didn’t recognize the extent of the damage until Stanford, when I met Black students (valedictorians and salutatorians) who grew up in the segregated South, where all the doctors, lawyers, dentists, judges, social clubs, etc were Black. The ease of their being in the world, where they had been kings and queens, was stunning, akin to the African and Caribbean Blacks who were the first Black faculty members in most white US universities. But I digress.
Because my father was a physician, and the only MD I had ever seen, I had no fears or knowledge of how systemic racism medicine could impact lives. That is until, at age 16, one Thursday night, with our parents at the Philharmonic, I had excruciating bilateral eye pain and difficulty moving my eyes. My older sister took me by taxi to New York Hospital/Cornell, where my father was on the faculty. We went to the emergency room. Asked why we were there, my sister (who became an ophthalmologist) said, “Something is wrong with my sister's eyes, and our father works here.” The white male resident looked dismissively at us. “What is he, a janitor?” My sister bristled, straightened and responded, “No, an attending physician and professor.” The instantaneous change in his demeanor was revolting, though a part of me relished the micro-expression of fear I observed before he got to work.
(My problem was new onset allergic conjunctivitis, which continues to plague me, but can be medically controlled.)
My eyes were opened. Of course medical education, practice and life opened my eyes further.
Sadly for many people of color, negative experiences in the medical system begin at or even before birth, and have lasting repercussions well beyond psychologic.
So though I pulled together a sketch of historical issues in my recent blog, it is a statement of facts, facts many might not have known, but which have nonetheless left a huge penumbra over the Black and brown population, which is felt, and expressed in suspicion and distrust. I chose to omit many many egregious episodes (how many does it take to make the case?) and more ambiguous ones (like Henrietta Lacks), all of which demonstrate abuses of the black body.
(Another meander, when my 88 year old mother was diagnosed with glioblastoma multiforme, a fatal brain cancer, hers about the size of a golf ball, against my recommendation, she chose surgical excision. This despite the nature of the tumor, which can only be debulked and never fully excised, her age and history of hypertension, both of which increased the risk of surgery. And the benefits were uncertain- at best surgery might buy her 6 months, at worst, do her in. The night before the surgery, one of the consent forms was clearly a post Henrietta Lacks disclaimer: it stated patient acknowledges the specimen, anything derived from it, all rights and financial rewards belong to Cornell Medical College and Hospital, with no rights or residuals whatsoever to the patient. I let her sign it, figuring the research might lead to a breakthrough, and that whether or not she signed, they'd use it anyway! Sadly, she had a stroke the day before the surgery, not appreciated on the pre op MRI done to check for tumor progression and surgical planning!!! and was dead within 30 days.)
Those involved in encouraging people to get vaccinated need to know the origins of distrust that will complicate their mission.
I know there are anti-vaxxers, many here in CA. But overwhelmingly, they are white and privileged. Black and brown people WANT care, good care, sensitive care, but care they can trust from people they can trust. Yes, many are reluctant to be vaccinated. But look at our history in this country. Who could not be dubious???? I recently participated in a BIPOC Zoom Vaccinate or Not discussion, and what struck me was how many people just wanted to hear the truth about vaccines (and the virus, and public health efforts) from someone they could trust. I spoke to what I knew, and the expressions of gratitude were overwhelming. Some suggested public relations efforts through Historically Black Colleges and Universities (despite the stain from the Tuskegee Study) will be crucial, others hoped the Biden administration could find trustworthy spokespeople to educate local communities.
Truth is the way. Not speaking the truth never increases trust.
The hundreds who joined the Tuskegee study did not know they were being studied, they signed up for treatment! The underlying hypothesis justifying the withholding of treatment in what was planned as a 2 year study was that Blacks didn’t want treatment (disproved within the first 6 months). And yet it went on for 40 years!!! Lies upon lies. Yet stunningly, the few studies that have looked at Black and brown distrust of the medical system have found many totally ignorant of the Tuskegee study! Their distrust is based on personal experience, family stories, and their experiences in white institutions. (Think about that!)
In my blog, I used a smallpox image above (one vaccinated, one not) to make clear where I stand on vaccines! I did that despite my awareness that non medical people find pathologic images troubling if not flat out revolting. Sorry. As a child, my job was to tear out the drug company advertisements from the advertisement laden medical journals (JAMA, Medical Economics, etc) my father received at the house. He felt that the advertisements were intended to corrupt physicians' judgement, leading them to prescribe the most heavily advertised products, which, of course, were more expensive than those not advertised, and beyond the budget of many of his patients. And though he wanted the content of the journals, he wanted no part of the for profit motive. For me, it was a game, to ensure I didn't rip out any text, but got all the bad ads!! (Not quite Super Mario but....) A game which also forced me to read many of the captions and articles, and likely increased my interest in medicine. Many of the photos were of skin conditions, which both intrigued me and grossed me out (I am NOT a dermatologist), but I did what Daddy wanted.
Personally, I am terrified about how racism will play out in the administration of the vaccines. Though some have advocated immunizing the communities hit hardest in the first and second waves first, no such plan has been advanced. Just as 45 and his cronies got Regeneron and other treatments, while black and brown people and first line responders died without them, just as FDR’s New Deal was bankrolled by the Federal Govt (read, our taxes) but administered by the states (read, denied to Blacks across the South), so the Covid-19 vaccine program seems likely to repeat the pattern. Already, Florida has told the CDC they have no intentions of following the guidelines. Over 65 seniors will be immunized before essential workers! What does that tell you about who counts? People who pay for concierge medicine are already clamoring for early access, with offers of monetary "donations" to expedite their
receipt. And already, the NYPost revealed a Brooklyn network of health clinics is under investigation for offering "unauthorized" Covid immunizations for a fee- 3,500 doses of Moderna vaccines apparently "diverted in violation of state guidelines".
Below, two contrasting state distribution priority guidelines, Texas (yellow), Massachusetts (blue)
Massachusetts Priority List Below:
Black and brown people know we are the ones dying. We need to know the people speaking to us do so with full awareness of past injustices. I have been heartened to see Dr. Fauci, the surgeon general and others attempting to reach out to communities of color.
From UK Daily Mail 9 Dec:
On Tuesday Dr. Fauci spoke at an event hosted by the National Urban League. He said it was important to acknowledge the US history of racism in medical research and understood how it has fostered mistrust among some black people.
But Fauci also stressed the Covid-19 vaccines were both safe and effective emphasizing African American scientists had been involved in their creation.
Interesting not only to see Fauci acknowledge the past, but to see the news highlighting Black health professionals getting their vaccines, the black scientists involved in developing the vaccines.
Dr. Fauci after vaccination (Moderna, what arrived at the NIH).
And so it goes.
BTW, I'll be doing a short piece on MarshStream Solo Arts Heal on Wednesday, 30 th December, 7:30 PM, celebrating a healthy, healing, and spirited 2021!!! Also, doing a medical version of Not One of Us, my new work on the intersection of race, class and privilege at Playground Festival, Saturday, January 23 and Friday, February at 7 PM. Details to come.