Alfred Lacks-Carter Jr., whose late grandmother, Henrietta Lacks’, cancer cell line led to treatments for COVID-19, AIDS, polio, cancer and other illnesses, wants to educate more people on the legacy of this African American woman and the importance of early cancer detection.
That brought him to town Monday to speak at Governors State University’s second annual Epic Cancer Prevention and Awareness Fair, which includes free cancer screenings and is designed to raise awareness on cancer prevention and detection.
In 1951, Henrietta Lacks was diagnosed and treated for cervical cancer at the Johns Hopkins Hospital. She died from the disease, but before her death, a tissue sample from Lacks’ cervix was removed without her permission and without her or her family being informed.
The cells, called HeLa cells, were the first cells that could be easily shared and multiplied in a lab setting, according to Johns Hopkins website. They have aided more than 17,000 patents in treatments for conditions including AIDS, infertility, hemophilia and Parkinson’s disease, according to the Smithsonian Institution website. Decades passed before Lacks’ family learned of the role she has played in medical research and modern medicine.
“Henrietta Lacks was 31 years old when she passed away from cancer,” Lacks-Carter Jr. said in an interview. “She had five children. She was a mother, a wife and she was beloved by her community. Her cells changed modern medicine and I want people to understand that.”
He said he also wants to educate people on the importance of patient advocacy and being informed about treatment options and risk factors “and that early detection is very important because a lot of times, if you are detected early, treatment percentage of being cured goes up astronomically.”
“It’s important that Governors State hold an event like this. It’s going to enlighten people, give them a different perspective on cancer and cancer treatment and how to maneuver through different barriers,” he said.
The health fair targets students, faculty, staff and south suburb residents. Besides cancer screenings, information on clinical trials as well as cancer awareness and prevention information were provided.
The event grew out of community engagement and outreach efforts over the past three years, said Tony Roberson, director of community engagement at Governors State. She helped organize the fair along with Tareylon Chairse, director of clinical education; and nursing department Chair Nancy MacMullen.
“We noticed in our work in the community that cancer health has been in the top five issues and concerns of our community members,” Roberson said. “We saw that there was a need for education to increase awareness about prevention measures and to have resources.”
The National Kidney Foundation [of Illinois] and nursing department faculty from Governors State helped with renal screenings and diabetes testing. Jewel-Osco provided free flu, pneumonia, COVID-19 and shingles vaccines, said Chairse.
Representatives from the University of Chicago were on hand. They are participating in the National Institutes of Health All of Us Research Program to build one of the largest health databases of its kind, allowing researchers to learn how biology, lifestyle and environment affect health, according to the University of Chicago website.
Participants contribute data through electronic health records, survey responses, activity monitors and DNA through blood or saliva samples. Researchers are already using the data to learn more about why people get sick or stay healthy and to find better ways to prevent and treat illnesses, the website states.
Participants included Sisters Working It Out, a nonprofit with the mission of eliminating breast cancer disparities in the Chicago area, said Chairse. It has programs that educate and empower women of color and connect them to preventive health services.
Other participants included Governors State’s Lambda Chapter, a nursing honor society that provided hands-on education concerning breast and prostate cancer; the Illinois secretary of state’s organ/tissue donor program, the American Cancer Society and the UChicago Medicine Comprehensive Cancer Center.
It was an honor to have Lacks-Carter Jr. participate, Roberson said. She said he is helping educate future health care providers, students, patients and community members about the importance of Black and brown people participating in clinical trials and to increase awareness about the importance of health literacy and patient advocacy.
Lacks-Carter Jr. said clinical trial participation is good as long as patients are informed and fairly represented, because research helps find cures and save lives.
While the story of the Tuskegee experiment, in which African Americans were withheld proper treatment for syphilis as part of a government study, is often cited as a horrific example of unethical behavior in medical research, Henrietta Lacks’ story is another critically important example of such unethical behavior. It’s important that her story and contributions be told and honored, Roberson said.
Indeed, it’s an important part of African American and world history.
Lacks-Carter Jr. has traveled to other U.S. cities and internationally to share his grandmother’s story. Her story was the subject of the 2010 book by Rebecca Skloot, “The Immortal Life of Henrietta Lacks,” and a movie by the same name that starred Oprah Winfrey.
The family of Henrietta Lacks earlier this year settled a lawsuit with biotechnology company Thermo Fisher Scientific Inc., that they accused of reaping billions of dollars from a racist medical system, The Associated Press reported. Terms weren’t disclosed.
“We’re continue to pursue justice for Henrietta,” said Lacks-Carter Jr., who has launched a perfume in honor of his grandmother.
He said he is extremely proud of her legacy.
“I think she would be very happy that her cells are changing the world, that her cells were used to create vaccines and for infertility,” he said, when asked what he grandmother would think of her role in medical science.
“I’ve had young ladies come up to me with tears in their eyes and say it was because of my grandmother they were able to have children. It’s just overwhelming,” he said. “Here a young lady who passed over 70 years ago is still creating life for other people. It’s just so amazing, so powerful, so profound.”
Francine Knowles is a freelance columnist for the Daily Southtown.
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