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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The Cost of an Ear Infection

When my best friend visited me from Israel in the summer of 2006, her daughter — the same age as my younger daughter, Sammi — was recovering from an ear infection. Like Sammi, my friend’s daughter had been through a lot of ear infections that year, and my friend had been traveling with a small bottle of ear infection medication just in case. When they left after a week at my house, I found the bottle had been left behind.

I panicked. I started emailing, sending messages through Yahoo Messenger, calling her temporary US cell phone. I couldn’t reach her for two days, and I imagined her in a panic, desperately searching for the bottle of medication. When I finally did get in touch with her, she was already home.

“Do you want me to ship it back to you?” I asked. “I don’t know how much express shipping to Israel is, but I know how miserable these infections can be. How is she?”

“Nah,” she said. “It’s just an antibiotic. I’ll get more if she gets another infection. You can throw it out.”

“Seriously!?” I answered. “But just the whole hassle of going and getting another prescription…do you know for sure it wouldn’t be cheaper to send it to you?”

“What? No, it’s no big deal,” she responded. “It’s just a quick visit down the street, and the meds are, like…ten shekel?”

I did the calculation to dollars — about two dollars.

“Right, but the visit to the doctor,” I pressed. “How much every time?”

“Nothing,” she answered. “Nothing, it’s free. Wait, how much does it cost you?” Continue Reading…

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OK Fine, I Get It

roll

No good deed goes unpunished, right? Isn’t that the saying?

I have never been a fan of those “my word of the year” nudges that start trickling in around mid-December. “What’s your word of the year for 2020?” It showed up, seemingly, EVERYWERE, this winter. I always thought it was kind of simplistic to boil everything down to one concept, as though my needs would never change over the course of twelve months, as though my scattered, low-attention-span mind could hold just one word in the front of it for twelve months and then, once it had a good, solid grip on it, be able to just release it and pick up another.

Besides that: I love words. How would I ever be able to pick one?

But then, toward the end of 2019, a lot of big change seemed to be coming for me and my family. I had finally signed a contract with a literary agent for the memoir I’ve written; my oldest daughter was a senior in high school and applying to college; my parents, who live far away, were beginning to struggle with some health issues; and I just couldn’t picture any longer what my life would look like in three months, six months, a year. When my kids were small, the path forward was pretty clear: fourth grade and then fifth, middle school and then high school; I’d work and make dinner and go to their soccer games and plays on the weekends. Even when my younger daughter’s illness made some things murky (would she ever eat well? would she make it through this next surgery?), I could imagine life on the other side even if I didn’t like what was coming. At the end of 2019, though, none of the next steps were predictable.

As the new year began, a friend invited me to her birthday party at a local boutique where we could make our own hand-stamped jewelry. (Side note: this boutique sells wonderful things and is doing online orders. It’s run by a lovely person who could really use some sales, so maybe buy some stickers or jewelry or a mug or some greeting cards!) At my friend’s party, I was trying to decide what to write on my little piece of metal.

I’d been talking with friends the week before about how I’ve been thinking about all this change coming my way, and knowing it was all too big and too much for me to control or brain-my-way through, I’d just decided to roll with it. Continue Reading…

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I Was Made to Cook Like This

born-to-cook

No more restaurants, my husband and I said to our daughters when the stay-at-home order began. And no takeout. Just too risky.

But I’m a good cook — inventive, curious, mostly patient. I’ve been pressure-tested in ways that have made me adaptive and flexible. I understand substitutions on almost a molecular level because, for the first nine years of my daughter Sammi’s life, I learned to cook in a gauntlet of food restrictions I could never have predicted.

I learned to cook first without almost all forms of acid: no citrus or tomato or chocolate for my toddler with severe reflux.

Then I learned to cook without dairy, soy, eggs, nuts, and wheat (all at once) when she was misdiagnosed with eosinophilic esophagitis.

Eventually, worst of all, I learned to cook without fat after a surgeon nicked her thoracic duct after cardiac surgery.

So after all of that, cooking normal, unrestricted meals every night while we’re staying at home seemed like it would be no big deal. At first, it was exciting — unlimited time to make whatever I wanted. I even started a journal for the first time since middle school: a few sentences about our day and then a note about what was for dinner and what we watched on tv. My tone was light and my dinners were pretty impressive. I felt proud of the fact that my family could eat well — both in quantity and quality — with me at the stove.

Over the ensuing weeks, I learned to be careful about planning in a whole new way than I’d learned when Sammi was little. Now she and her sister Ronni are both teenagers, and instead of planning around holes in our diet from medical restrictions, I started planning around holes in our diet from grocery shortages. It was — and remains — nothing like shortages in the history of our country or the world; the stores are full of food, and after one fraught trip to our local grocery on March 19, we’ve been ordering our supplies online. They simply arrive at our door, where we sit on the stoop and wipe down package after package of treasures, but always, there are some things the grocery store doesn’t have. Continue Reading…

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Let Me Weep

I am a midnight writer
I am a sole survivor
I am chemicals colliding

Awake late in the night with a baby in my lap, I have turned the tv on low, the mist from the nebulizer clouding the screen. Though the steroid drugs wafting from the machine should amp my daughter up, she is limp across my thighs and sweating damply into the crook of my elbow. It takes twenty minutes to give her a full treatment, until the hissing starts breaking up and popping sounds come from the ampule of liquid feeding the machine. I run my finger down her velvety arm, feel my pulse quicken.

Years later, I find that an afternoon Diet Coke takes me past the edge of hyper over-exhaustion and into sleep. What should stimulate me — caffeine — sometimes helps me rest. I drink it in the bright sun streaming through my window and then lay on the couch, drifting. My daughter and I, it seems, have our own rules about sleep.

Continue Reading…

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