- By Rachel Schraer
- BBC 100 Women
27 minutes ago
How do you ask a community to trust medicine when history has given them many reasons not to?
It’s a dilemma American nurse Victoria Baptiste faces every day as she travels around Baltimore County, Maryland, in a mobile clinic, administering Covid vaccines.
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Over the past two years, one question keeps coming up, especially from his black patients. We have been subjected to experiments in the past – how can we trust this treatment?
They often came across inaccurate posts on Facebook or Twitter. But her black patients’ fears don’t just stem from misinformation online — their distrust began a long time ago.
When they start telling their story, they say, “Remember Tuskegee and Henrietta Lacks, they’re always experimenting on people of color,” she explains.
Tuskegee was a 40-year experiment by the US government in which hundreds of black men were deliberately left untreated for syphilis without their knowledge. After its exposure, regulations were introduced in 1974 to require voluntary and informed consent from all subjects participating in research.
As for Henrietta Lacks, few people are better placed than Victoria to understand this story of unethical medical research. Henrietta was the mother of Lawrence, Victoria’s beloved grandfather.
Henrietta Lacks was an African-American woman who died of cervical cancer in 1951 and whose cells were used for medical research without her or her family’s consent.
While being treated for her cancer, tissue was removed from Henrietta’s cervix and placed in a Petri dish, as part of the search for cells that can be studied and experienced outside the body .
We didn’t tell him that was the way it was. Victoria tells me that she was also not fully informed of the effects of the treatment she was receiving for her cancer. She was sewn radium – a radioactive substance – into her cervix in an attempt to kill the tumor. It was an accepted treatment at the time, but she was not told that it could prevent her from having more children.
While other cell samples quickly died despite scientists’ efforts, Henrietta’s cells not only stayed alive, but multiplied at a rapid rate, earning them the label “immortals.”
The growing number of these cells, a hallmark of her cancer, proved devastating to her, but groundbreaking to science.
This stock of human cells can then be used to test treatments for diseases, improving the speed and safety of medical research.
Henrietta Lacks cells, dubbed HeLa, helped to understand cervical cancer, tuberculosis, Ebola, and HIV, and laid the foundation for vaccines against polio, the human papillomavirus ( HPV) and Covid.
They have benefited millions of people – and potentially made billions of dollars for the pharmaceutical companies that use them to test their products.
Yet the Lacks family never saw a dime of those profits. At one time, some family members couldn’t even afford medical insurance.
The full details of the HeLa cells only came to the attention of some family members when science writer Rebecca Skloot, who has written a bestselling book on the matter, began to investigate.
Also, when Victoria says she understands why people might be suspicious of the pharmaceutical industry, she really means it.
A family nurse
Victoria grew up hearing about the mother her grandfather Lawrence lost before reaching adulthood: a mother of five who cared for everyone and yearned for more, and who loved to cook, dance and look beautiful.
Victoria and her gang of cousins — her best friends to this day — spent their early years running around the house of Henrietta’s husband, David, Day says. And it was really thanks to him that Victoria became a nurse in the first place.
“He had to live with diabetes when I was little, and I was always very curious and asked questions like, ‘Dad, why are you giving yourself shots? And what is this for ? And he’s always been very patient with me.” She eventually learned how to give him his insulin shots.
At the start of 2020, Victoria was working as a nurse in a kidney unit at a hospital. But when Covid hit, her job changed dramatically. Like many healthcare workers, she was afraid of bringing the disease home.
Fearing burnout, but wanting to continue caring for people, in 2021 she became a traveling nurse, administering Covid-19 vaccines. She quickly realized that she had a knack for working with anxious or hesitant people with questions – directing them to the best research and helping them find the information themselves.
And the story of Henrietta Lacks was always in the back of her mind.
“Knowing what my family’s story has been, I don’t want anyone else’s family to have the same story. I don’t want them to feel like they’ve been silenced or belittled. to be a silent voice in their care, as Henrietta was.”
For someone who feels personally connected to the darker side of what’s been done in the name of science, Victoria knows that simply asking patients to ignore online rumors and trust science wouldn’t be enough.
“I will never try to circle around these difficult topics,” she says.
“Yes, those things happened to Henrietta. We’ve come a long way since then. And we’re still fighting to make sure these kinds of injustices don’t happen today.”
But at the same time, Covid was disproportionately affecting the black community, and vaccines were the most powerful tool available to prevent serious illness and death.
Victoria believes in recognizing the real problems of medicine and the pharmaceutical industry and holding them to account, while acknowledging the weight of independent data on a vaccine that saved an estimated 20 million lives in its first year.
She will explain to her patients how things have changed since Henrietta’s time, including safeguards such as the Institutional Review Board, designed to ensure research is conducted ethically, and the need for a informed consent.
“We’ve come a long way since 1951. Research goes through a lot of checks and balances before the results are made public,” she says.
That doesn’t mean there aren’t problems to solve yet.
Today, in addition to her day job as a nurse and her family’s HELA100 initiative, Victoria is a World Health Organization Ambassador for the Elimination of Cervical Cancer, which she considers it a kind of personal mission.
“We know what we know today about cervical cancer thanks to the loss my family had to go through,” she said.
This is another disease that black people are more likely to die from in the United States.
Victoria wants as many people as possible to be tested for the HPV virus, have access to the vaccine and early treatment, in order to bring down the number of preventable cancer deaths in more in 90% of cases.
“We lost our loved one to cervical cancer,” she said. “But thanks to his death, science was able to develop the vaccine,” concludes the nurse.
Photographs courtesy of CELLebrate Henrietta Lacks #HELA100