- Rachel Schreyer
- 100 women – BBC
How do you ask the members of a society to give their trust to medicine when there are many historical reasons why they do not trust medicine and doctors?
It is a dilemma that American nurse Victoria Baptiste has to deal with every day as she travels around Baltimore County, Maryland, as part of her work in a mobile clinic to administer vaccines against the Corona epidemic.
And one question has been being asked repeatedly over the past two years, especially by black patients of hers, which is: We’ve been used and exploited in trials in the past, how can we now trust this vaccine?
The immediate trigger for this question is often posts containing inaccurate information they encountered on Facebook or Twitter. But her black patients’ fears didn’t just stem from online misinformation. Their distrust of medicine and the US health system goes back much further.
“When they start telling their stories, they say, ‘Remember Tuskegee and Henrietta Lacks, they’re always experimenting on people of color’,” says Victoria.
Tuskegee was a 40-year experiment conducted by the United States government in which hundreds of black men were deliberately left untreated for syphilis, without knowing it.
But after that spotlight came to light, in 1974 new regulations were introduced requiring “informed” and voluntary consent from all persons involved in any scientific research.
Informed consent means obtaining a person’s permission before any medical procedure or participation in clinical research, after explaining to him all aspects, effects and consequences of the procedure or participation in research.
Informed consent must have been given based on a clear appreciation and understanding of the facts, implications and consequences of the procedure.
As for Henrietta Lacks, Victoria personally is one of the most knowledgeable about the details of the unethical medical research story associated with this name, as Henrietta is her great-grandmother, the mother of her great-grandfather Lawrence.
Henrietta Lacks was an African-American woman who died at the age of 31 of cervical cancer in 1951, and whose cells were used in medical research without her or her family’s consent.
During Henrietta’s treatment for cancer, some tissues were scraped from her cervix and preserved in a so-called “Petri dish”, to be used in research on cells that could be studied and subjected to experiments outside the body.
Henrietta is not told what happened. Nor was she informed of the full effects of her cancer treatment, Victoria told me.
She was being treated with radium, and radioactive material was sewn into the lining of her cervix in an attempt to destroy the tumor. This was an acceptable treatment at the time, but she was not told that it could cause infertility and make her unable to have more children.
While cell samples taken from other people died quickly despite the great efforts of scientists, Henrietta’s cells not only remained alive, but multiplied at a rapid rate, which made scientists describe them as “immortal” cells.
The exponential multiplication of the number of these cells, which is characteristic of her cancer, was devastating for Henrietta, but it was a revolutionary discovery for science.
Henrietta’s preserved cells, which became the first immortal human cell line, were used to understand how diseases affect the body, as a model for testing the first treatments, and to improve the speed and safety of medical research.
And she produced from Henrietta Lacks cells, new living cells on a large scale, and became famous in the world of medical research, and was dubbed “HeLa”, and contributed to the understanding of cervical cancer, tuberculosis, Ebola, HIV, in addition to contributing to the research of polio vaccines Children, human papillomavirus (HPV), and COVID-19.
Millions of people have benefited from the results of experiments and research using HeLa cells, and the pharmaceutical companies that use them to test their products have made billions of dollars. But the Lacks family did not get a single penny from these earnings. At one point, some family members needed treatment but could not even afford health insurance.
The family did not know the details about the “Hela” cells, except after investigations conducted by the author of scientific novels, Rebecca Skloot, who wrote a book about the case entitled “The Immortal Life of Henrietta Lacks” and became a bestseller.
And when Victoria says she understands why people don’t trust the pharmaceutical industry, she means the story about her great-grandmother’s cells.
nurse in the family
Victoria grew up hearing the tale of the mother that her grandfather, Lawrence, lost before he reached adulthood. Henrietta was a mother of five, cared for everyone, longed to have more children, loved to cook and dance, and took care of her looks.
Victoria and a group of her cousins, still her best friends, spent their childhood years running and playing around Henrietta’s house, where her husband David, who helped Victoria become a nurse, remained a resident.
Victoria says: ‘Grandpa David had to live with diabetes, and I was a little girl then, and I was always very curious, asking questions like ‘Why give yourself a right? What’s the use of this?’ He was always very patient with me.” Eventually, Victoria learned to give her great-grandfather insulin injections.
In early 2020, Victoria was working as a nurse in the kidney unit of a hospital. But when the Corona pandemic hit, her work changed dramatically. Like many healthcare workers, she feared bringing the disease home.
In order to avoid the exhaustion caused by working in the hospital during that difficult period, and with her desire to continue helping people, Victoria in 2021 began working to give vaccines against the Corona virus and was traveling around the United States.
She soon realized she had a special gift for working with people who were anxious or hesitant about vaccines and had questions about it, guiding them to the best research, and helping them find information on their own.
The story of her great-grandmother, Henrietta Lacks, was always on her mind. “Knowing my family’s history, I don’t want anyone else’s family to go through the same situation. I don’t want them to feel like they’ve been silenced, or to be a silent voice like Henrietta,” she says.
And Victoria knows well, from her personal relationship with the dark side of what was committed in the name of science, that asking patients to ignore rumors spread on the Internet and give their trust to science is not sufficient and convincing.
“I will never try to sidestep these difficult issues,” she says.
“Yes, those things did happen to Henrietta. We’ve come a long way since then. We’re still fighting to be sure that that kind of injustice won’t happen again.”
But at the same time, the coronavirus was disproportionately affecting black people, and vaccines were the most powerful way available to prevent serious disease and avoid death.
Victoria believes in recognizing and addressing the real problems and errors that occur in medicine and the pharmaceutical industry, while also acknowledging the importance of the independent data collected on the COVID-19 vaccines, which have saved an estimated 20 million lives in their first year of use.
Victoria explains to her patients how things have changed since Henrietta’s day, including safeguards such as the establishment of the Institutional Review Board, whose job it is to ensure that research is conducted ethically and protect the people involved in biomedical research, and to ensure that informed consent is obtained for all participants.
“We’ve come a long way since 1951,” she says. “And when doing any research there are a lot of controls and considerations that have to be taken into account” before bringing the idea of participating in research to the public.
But this does not mean that there are no longer problems to be solved.
In addition to Victoria’s daily work as a nurse in the initiative launched by her family under the name “Hela 100”, she is also an ambassador for the World Health Organization to eliminate cervical cancer, which she considers her personal cause, and Victoria was chosen in the BBC list of the most influential and inspiring woman of the year 2022.
“We know what we know about cervical cancer today because of the loss of my family,” she says.
Cervical cancer is one of the most common diseases among blacks in the United States.
Victoria also wants as many people as possible to be tested for HPV, and to provide access to vaccine and early treatment, to reduce deaths from cancer, which is more likely to develop after infection with types of papilloma virus, but is preventable in more ways than one. 90 percent of cases.
She says, “We lost a dear person to cervical cancer, but thanks to her, science was able to reach the vaccine.”