- 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?
This is a dilemma that American nurse Victoria Baptiste faces every day as she travels through Baltimore County, Maryland as part of her work in a mobile clinic to administer vaccines against the Corona epidemic.
And one question has been asked repeatedly in the last two years, especially by black patients of hers, which is: We have been used and exploited in trials in the past, how can we trust this vaccine now?
The immediate trigger for this question is often posts containing inaccurate information that they have come across on Facebook or Twitter. But her black patients’ fears did not just stem from online misinformation. Their mistrust of medicine and the American health system goes back much further.
“When they start telling their stories, they say: ‘Remember Tuskegee and Henrietta Lacks, they always experiment on people of color’,” says Victoria.
Tuskegee was a 40-year experiment conducted by the US government in which hundreds of black men were deliberately left untreated for syphilis, without knowing it.
But after that spotlight came to light, new regulations were introduced in 1974 requiring “informed” and voluntary consent from all persons involved in any scientific research.
Informed consent means obtaining a person’s consent before any medical procedure or participation in clinical research, after all aspects, consequences and consequences of the procedure or participation in research have been explained to him.
Informed consent must be given based on a clear appreciation and understanding of the facts, implications and consequences of the procedure.
As for Henrietta Lacks, Victoria is personally 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 of cervical cancer in 1951 at the age of 31, 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. She was also not informed about the full effects of her cancer treatment, Victoria told me.
She was treated with radium, and radioactive material was sewn into the lining of her cervix in an attempt to destroy the tumor. It was an acceptable treatment at the time, but she was not told that it could cause infertility and prevent her from having more children.
While cell samples taken from other people died quickly despite the best efforts of scientists, Henrietta’s cells not only remained alive but multiplied at a rapid rate, leading scientists to 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 to test 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 cent from these earnings. At one point, some family members needed treatment but couldn’t even afford health insurance.
The family did not know the details about the “Hela” cells except after investigations conducted by science fiction author Rebecca Skloot, who wrote a book about the case titled “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 with the narrative of the mother who lost her grandfather, Lawrence, 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 appearance.
Victoria and a group of her cousins, still her best friends, spent their childhood running and playing around Henrietta’s house, where her husband David, who helped Victoria become a nurse, remained a resident .
Victoria says: ‘Grandad David had to live with diabetes, and I was a little girl then, and I was always very curious and asked questions like ‘Why give yourself a right? What is 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 worked as a nurse in the renal unit of a hospital. But when the Corona pandemic hit, her work changed dramatically. Like many health care workers, she was afraid of bringing the disease home.
To avoid the exhaustion caused by working in the hospital during that difficult period, and with her desire to continue helping people, Victoria started working to give vaccines against the Corona virus in 2021 and she traveled through the United States.
She soon realized she had a special gift for working with people who are anxious or hesitant about vaccines and have questions about them, 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 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 has been perpetrated in the name of science, that it is not sufficient and convincing to ask patients to ignore rumors spread on the Internet and place their trust in the to give science.
“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 make sure that kind of injustice doesn’t happen again.”
But at the same time, the coronavirus disproportionately affected black people, and vaccines were the most powerful way available to prevent serious illness and avoid death.
Victoria believes in recognizing and addressing the real problems and mistakes that exist in medicine and the pharmaceutical industry, while also recognizing the importance of the independent data collected on the COVID-19 vaccines, which are estimated to be 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 creation of the Institutional Review Board, whose job it is to ensure that research is carried out ethically and to 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 any research is done, there are many controls and considerations that must be taken into account” before the idea of participating in research is brought to the public.
But that doesn’t mean there aren’t more 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 takes as her personal cause considered, and Victoria was selected on the BBC’s list of the most influential and inspiring woman of the year 2022.
“We know what we know today about cervical cancer because of the loss of my family,” she says.
Cervical cancer is one of the most common diseases among black people in the United States.
Victoria also wants as many people as possible to be tested for HPV, and provide access to vaccine and early treatment, to reduce deaths from cancer, which is more likely to develop after infection with types of papillomavirus but is more preventable is. as one. 90 percent of cases.
She says: “We lost a loved one to cervical cancer, but thanks to her, science was able to achieve the vaccine.”