Black History Month and Why Doctor Trust Matters
In a Kaiser Family Foundation poll conducted recently, about 35% of Black Americans have no plans of getting the COVID-19 vaccine, citing fears about safety and concerns that the vaccines need more data because they are so new.
This is alarming to me considering the fact that Black, Hispanic, and Native American people are about 4 times more likely to be hospitalized and nearly 3 times more likely to die of COVID-19 than white people. What's more, figures from the Center for Disease Control (CDC) show that Black people make up only 5.4% of people who have received at least the first dose of a vaccine compared to 60% of those who are white.1
A brief (medical) history lesson
The burning question is why are Black people so hesitant when it comes to using the American medical system? "We are right to be paranoid and to ask tough questions," said U.S. Rep. Ayanna Pressley of Massachusetts. "History has shown us when we do not ask questions, the consequences are grave, and in fact life and death."2
How it all began
February is synonymous with Black History Month in the US and Canada (and most recently in Ireland, the Netherlands, and the UK in October). This wasn't always the case.
It actually started off as just a week when in 1926, Carter G. Woodson (known as 'The Father of Black History'), a Harvard-trained historian and the son of freed Virginia slaves, organized "National Negro History Week". Concerned that black children weren't learning about the achievements of their ancestors in schools, Woodson picked the second week of February because it coincided with the birthdays of President Abraham Lincoln, February 12, and social reformer Frederick Douglass, February 14, who were both instrumental in helping to end slavery. Woodson believed that “those who have no record of what their forebears have accomplished lose the inspiration which comes from the teaching of biography and history.”3
Representation and history matters
And this is true. We know that representation matters and when you see someone in a position of power who looks like you, doing something you love or thought couldn't be done, you become inspired. This was most recently witnessed as the world watched the swearing-in of Kamala Harris as the first Black and South-Eastern Asian woman Vice President in American history.
We've come a long way since our sordid history however "It’s not that Black people have an irrational fear of new medical technologies, it’s that they have an awareness of a long history of being disrespected, mistreated, and violated by the government and by health care professionals," says Dorothy Roberts, JD, founding director of the University of Pennsylvania's Program on Race, Science & Society.4 It is a history of systemic racism that goes back all the way to medical experimentation on slaves. Doctors used slaves no longer deemed profitable as subjects of medical research. They would conduct surgeries without anesthesia and there were no laws protecting the rights of African Americans.
A history of doctor mistrust
Tuskegee Syphilis Study
One glaring example of medical distrust was the Tuskegee Syphilis Study. Conducted during the years 1932-1972, hundreds of Black men, under the direction of the federal government, were injected with syphilis at the historically black college, Tuskegee Institute in Alabama. The purpose was to study the natural progression of untreated syphilis in poor, rural black men. To do this study the black participants were lied to by public health officials and had fake procedures performed and were withheld treatment. Many participants developed serious health issues, went blind, and even died. The unethical program was exposed and ended in 1972, and then-President Bill Clinton formally apologized in 1997.5
Henrietta Lacks and Fannie Lou Hamer
In 1950 doctors at John Hopkins Hospital used cervical cells from Henrietta Lacks, a Black mother of five who had cancer, to pioneer medical advances and research that are still being used today. Lacks died in 1951 and never gave her consent and her family was never financially compensated.
Civil Rights Activist Fannie Lou Hamer had a hysterectomy without her knowledge or consent in 1961. According to Hamer's own research, 60% of the Black women residing in Sunflower County, Mississippi, the same place Hamer was illegally sterilized, were victims of the same medical malpractice while they were giving birth. As Lindsay Wells and Arjun Gowda said in their clinical commentary, "In time, African Americans associated 'western' medicine with punishment, loss of control over their most intimate bodily functions, and degrading public displays".6,7
How can we rebuild trust today?
It is against this historical backdrop that we must examine Black people's hesitancy about taking this unprecedented vaccine. When you mix the historical mistrust with misinformation being peddled on social media -- in a pandemic -- it's a recipe for disaster. To address this hesitance, experts such as the Director of the Johns Hopkins Center for Health Equity, and a former MacArthur genius fellow for her work in health disparities Dr. Lisa Cooper has this to say: "Medical authorities should listen to people's concerns and connect communities with accurate and accessible information."8,9
With the chaos of the outgoing administration, fake news and misinformation were at an all-time high. False rumors about the COVID vaccine spread like wildfire.10 According to Dr. Walters, Chief Medical Officer of St. Bernardine’s Medical Center in San Bernardino, "African American doctors have to reach out to educate and set an example for their patients in order to get them to accept the vaccine."8
This is why it's important to highlight the significance of seeing doctors and scientists like Kizzmekia Corbett who led her team in developing the Moderna COVID-19 vaccine. Well respected, national doctor Anthony Fauci was interviewed saying: "The first thing you might want to say to my African American brothers and sisters is that the vaccine that you’re going to be taking was developed by an African American woman. And that is just a fact."11 The fact is representation matters.
Lung cancer racial disparities
Studies show that historically, while African Americans begin smoking at older ages and smoke fewer cigarettes per day than whites, they are more likely to be diagnosed with and die from lung cancer than white people.12Why is this?
One factor could be the evidence suggesting that minority groups exhibit hesitancy, skepticism, fears of racial conspiracy along with high levels of suspicion when it comes to taking part in clinical trials and genetic testing about participating in research linking genes, race/ethnicity, and health outcomes.13
To sum it up, Black people want to be reassured by health professionals who look like them that the procedure they'll be undergoing is safe for them. As Dr. Cooper put it: "The key is for them to feel a sense of empowerment and control over their own health and their own decisions."9 Dr. Mary Pasquinelli, a nurse practitioner at the University of Illinois with a 60% patient population who are Black, knows this all too well. She observed that when discussing various treatment options with her patients, her most common question is, “What would you do?”13 This lends credence to her practice of building meaningful relations with her patients, particularly given the mistrust of the American health system amongst Black communities.
Let's give visibility to those creating change
2020 was a year like never before. For the first time in a long time, Americans experienced, as a collective, what racial injustice looks like and how close it can hit to home -- all during a global pandemic. So as we continue to celebrate Black History Month as a nation and globally, let's at least acknowledge that systemic racism persists, including the health care system.
And while we're at it, let's give visibility to those organizations and individuals creating awareness and change. For my part, I was fortunate enough to have a vaccine available for me to take and not only did I take it but also documented it on Instagram so Black people in my network could see someone like them busting those myths making the rounds.
Editor’s Note: We are extremely saddened to say that on May 26, 2021, Angie Brice Hessbruegge passed away. Angie's thoughtful writings and advocacy efforts will continue to reach many. She will be deeply missed.
Do you find that staying zen through your lung cancer diagnosis has helped you in your journey?