Health Care for Black People in America

I’ve dedicated this blog to telling my family’s story about misdiagnosis and healing within the American health care system. It’s been a cathartic way to process my grief over what happened over nine years to my daughter, Sammi.

Today, you won’t read anything about that here.

I had a significant advantage all those years: I am a white woman. I was more likely to have health insurance (which I did, for me and for my family); I was more likely to be listened to (sometimes, I was!); I did not interact with doctors from a position of deficit in a system that is implicitly and sometimes explicitly devaluing my life and the life of my child. So today, I’m going to share some links to articles about what it is like to operate within that system for Black people.

Spoiler alert: it’s way, way harder.

The Century Foundation: Racism, Inequality, and Health Care for African Americans 

“African-American women are three times more likely to die of pregnancy-related causesthan white women (see Figure 1).25 The African-American infant mortality rate is twice the rate for white infants (see Figure 2).26 African Americans are more likely to die from cancer and heart disease than whites, and are at greater risk for the onset of diabetes.27:

Nature: Millions of Black People Affected by Racial Bias in Health Care Algorithms

“An algorithm widely used in US hospitals to allocate health care to patients has been systematically discriminating against black people, a sweeping analysis has found…. the algorithm was less likely to refer black people than white people who were equally sick to programmes that aim to improve care for patients with complex medical needs. Hospitals and insurers use the algorithm and others like it to help manage care for about 200 million people in the United States each year.”

American Bar Association: Implicit Bias and Racial Disparities in Health Care

“…one study of 400 hospitals in the United States showed that black patients with heart disease received older, cheaper, and more conservative treatments than their white counterparts. Black patients were less likely to receive coronary bypass operations and angiography. After surgery, they are discharged earlier from the hospital than white patients—at a stage when discharge is inappropriate. The same goes for other illnesses.”

Zora: What No One Tells Black Women About Heart Disease

“A 2010 study from the American College of Cardiology found that only 3% of practicing cardiologists in the United States are Black. Having a Black doctor increased Boucicaut’s confidence in her treatment plan. ‘The doctor said he’d treated many people my age — mainly Black men — who had the same heart condition,’ she says. ‘That gave me comfort.’ Kalinowski shared a similar sentiment. “It is extremely crucial… to increase the pipeline of Black women and men who are addressing these issues,” she says. ‘We need to continue to invest in the diversity of researchers and providers who are researching these issues and committed to seeing these data turn.'”

NBC: Black Kids Get Less Pain Medication Than White Kids in the ER

“If there is no physiological explanation for differing treatment of the same phenomena, we are left with the notion that subtle biases, implicit and explicit, conscious and unconscious, influence the clinician’s judgment…”

Washington Post: The Disturbing Reason Some African American Patients May Be Undertreated for Pain

“Researchers at the University of Virginia quizzed white medical students and residents to see how many believed inaccurate and at times ‘fantastical’ differences about the two races — for example, that blacks have less sensitive nerve endings than whites or that black people’s blood coagulates more quickly. They found that fully half thought at least one of the false statements presented was possibly, probably or definitely true.

“Moreover, those who held false beliefs often rated black patients’ pain as lower than that of white patients and made less appropriate recommendations about how they should be treated.”

New York Times: Black Americans Face Alarming Rates of Coronavirus Infection in Some States

“For many public health experts, the reasons behind the disparities are not difficult to explain, the result of longstanding structural inequalities. At a time when the authorities have advocated staying home as the best way to avoid the virus, black Americans disproportionately belong to part of the work force that does not have the luxury of working from home, experts said. That places them at high risk for contracting the highly infectious disease in transit or at work.”


Though this blog focuses mostly on health care, it’s important to understand not only the extreme challenges in attaining quality medical attention as a Black person, but on the overall racist and structures that form the base for American society. There are many lists of articles and books you can read to educate yourself. This week, I also listened to several podcasts that formed a good introduction to this important consciousness-raising decent white people must undertake:

The Daily: The Systems That Protect the Police

Stay Tuned with Preet: Protest, Pain & Hope (with Karen Attiah)

Unlocking Us: Brené with Ibram X. Kendi on How to Be an Antiracist

Finally, please, if you do nothing else, watch this:

We owe this to our fellow Americans.

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Trigger

triggering

 

She was sitting on the couch facing me when I opened the door to the apartment. In a deep-cut v-neck t-shirt, beaded necklaces dipping into her cleavage, my roommate asked me why I’d put the ironic knick-knack I loved back on top of the stereo speaker.

“Because I think it’s funny,” I said.

“But you know I hate it,” she answered, her fingernails pressing into her thighs.

“I know,” I answered her, clutching my backpack, “but you do a lot of things that I hate, too, and you don’t seem to care. Why should I?”

“So you put it up there for revenge?!” she asked, still sitting. I watched a patch of red begin to creep up from between her breasts into the v of her shirt.

“Basically, I guess?”

“You know,” she said, rubbing her hand along the knee of her jeans, “I sometimes come home at night when you’re sleeping, and I stand outside the door to your bedroom, and I have to force myself not to come in there and beat the shit out of you in your sleep.”

“You’re crazy,” I answered, staring at the french doors to my room, and then at her neck, which has grown crimson to match her chest. “That’s what a crazy person says.”

“I’m not crazy. I just hate you.” Continue Reading…

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This Is Not Normal

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Yesterday, my daughter Sammi went under general anesthesia for the nineteenth time.

The surgery was minor compared to some of the others she’s faced, and I wasn’t worried about it going poorly, but the moment I stepped off the elevator into the hospital corridor leading to the Pediatrics ward, I felt something in the air settle on me and seep in. It was familiar, heavy and soft and warm. It had a smell — cleansers covering up disease — and a visible quality like steam just moments before it evaporates completely. I walked through yellowish, dim light, floors and walls an indeterminate shade of grey or green or beige. There’s a haze to the air, and a weight. I felt something gently pushing on the top of my head and my shoulders. Gravity is more powerful on a hospital ward.

I’d forgotten that. Continue Reading…

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What I’m Learning: Part Four

what-im-learning-4

There’s so much to learn, and so much to know.

As I try to grasp why my daughter was so grossly misdiagnosed by doctors and why so many of them failed to see me as a potential partner in her care, the best way I know how to access some clarity is to read and listen. Of all the things I’ve felt about our experiences, I’ve never felt alone. Whether I knew it or not, there were people all over the world joined to us energetically in our fear, our resentment, our minor and major victories. Every time I tell a story about us at a Moth story slam, I’m approached by strangers who say, “wow, you too?”

So, I keep telling, and I keep reading the tales of others. I’ve been reading and reading and reading this last few years. Here are two books I’ve read over the summer and early fall, and what they made me think.

Continue Reading…

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There Was Joy

rear-view-mirror

There are so many things I had to refuse her.

I was newly a mother of two when a doctor – a kind doctor, a thoughtful doctor – told me that my new daughter would almost certainly end up in the hospital with every respiratory infection she got. Not a great idea, he said about twice-a-week daycare. Probably not, he said about baby-and-parent music classes. No, I don’t think so, was his answer to my hopeful questions about baby swimming, a smaller daycare, a playgroup. After two hospitalizations in her first five months, I believed him.

Through that first winter watched through front windows into an empty courtyard or through car windows into big sister’s preschool, my new daughter and I eyed the world with suspicion: me because it contained too many germs and her because nothing in it made her feel quite right. There was no sleep, no break, no time apart for the two of us to learn the beauty of missing each other and being reunited. There was just us, with the world outside the window a mystery.

The winter turned into years, isolated and treading water. Continue Reading…

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