Roland Pattillo helped keep Henrietta Lacks' story alive. It's key to his legacy

Dr. Roland Pattillo and his wife Pat O'Flynn Pattillo paid for Henrietta Lacks' permanent headstone, a smooth, substantial block of pink granite. It sits in the shape of a hardcover book.

Henrietta Lacks was a Black mother in Baltimore who died from cervical cancer in 1951.

Her story became the subject of a bestselling book and later an HBO movie starring Oprah Winfrey as Deborah Lacks, Henrietta's daughter, and Rose Byrne as the writer Rebecca Skloot.

The headstone was unveiled in late May, 2010 at a family cemetery in rural Clover, Va. Lacks' resting place was surrounded by her family members, the Pattillos, Skloot and others. The headstone's book design was a poignant symbol of her voluminous legacy. The Lacks family chose the words.

"Henrietta Lacks August 1, 1920 - October 4, 1951"
"In loving memory of a phenomenal woman, wife, and mother who touched the lives of many. Here lies Henrietta Lacks (HeLa) her immortal cells will continue to help mankind forever. Eternal, love and admiration, from your family."

Pattillo, an African American oncologist, stem cell researcher and professor, died in May at age 89. His death went largely unreported. The New York Times ran an obituary last month. The Nation published the news in September. His death was due to Parkinson's disease, according to his wife, Pat. He is survived by children Sheri Pattillo Johnson, Catherine, Mary and Patrick Pattillo, and his stepson, Todd Thomas, known more familiarly as Speech, bandleader of Arrested Development, the famed Grammy winning recording group. Carolyn Pattillo Davis is his sole surviving sister. Eight grandchildren, nieces and nephews also form the rest of his survivors. Marva Parks was his first wife until they divorced. Three children preceded him in death, his son Michael Pattillo, a stepson, Dr. Terence Thomas, and an adopted son Bright Boateng.

He protected and elevated Lacks' memory for decades. A Louisiana native, Dr. Pattillo is often described as a quiet, determined man, and a major reason why millions know Henrietta Lacks' story.

He befriended the Lacks family and protected them from reporters and other people. He was aware of the HeLa cell line story, the medical discovery that Henrietta Lacks' cancer cells successfully grew outside her body, but he learned more about the donor when he worked with biologist George Gey, his mentor at Johns Hopkins. Gey was responsible for harvesting her biopsied cancer cells and successfully growing them in culture, the first human cells to do so. They were put to use for medical research in labs around the world.

Pattillo carried Lacks' name and story everywhere he worked. After his research fellowship at Hopkins, his focus continued in gynecological oncology at the Wisconsin School of Medicine, in Milwaukee, where he worked for 32 years, and then at the Morehouse School of Medicine in Atlanta, beginning in 1995.

In 1996, he led the first HeLa Women's Health Symposium at the Morehouse School of Medicine. He got Bill Campbell, Atlanta's third Black mayor, to declared October 11, 1996, Henrietta Lacks Day in time for the event.

Henrietta Lacks left behind five young children in 1951.

She was treated at Johns Hopkins, a Baltimore charity hospital that cared for Black patients during the Jim Crow era. Her tumor cells were taken without her knowledge. Her cells became the first successful "immortal" cell line, grown outside her body and used for medical research. They have been instrumental in breakthroughs ever since.

Patients rights and the rules governing them were not like today.

HeLa cells were used to understand how the polio virus infected human beings. A vaccine was developed as a result. More recently, they played a significant role in COVID-19 vaccines.

Pat Pattillo says her husband wanted to share how Lacks' gift benefitted humanity since her death at age 31. But he also hoped to extend empathy for the family she left behind. Pat revealed an interesting set of coincidences: she noted Lacks had five children. Roland Pattillo was the father of five from his previous marriage, and Pat herself is the oldest of five siblings. (Pat was the mother of two of her own from her first marriage.)

"That was an African American woman who was suffering severely with cancer after her fifth child," she says.

Her husband wanted to ensure people knew and felt for the young mother, but also to have sensitivity for her surviving five children, and the husband left behind to raise them in the 1950s.

"He grilled me about race in America"

Rebecca Skloot spoke with NPR about Roland Pattillo from Portland, Ore., her hometown.

"He was the first person to say, 'Thank you, Henrietta.' And he was also the first person to ever say, 'I'm sorry for your suffering to members of her family.' " she says.

Pattillo regularly opened the conferences at the Morehouse School of Medicine by thanking Lacks for her life and contributions to medical science.

Skloot says Pattillo didn't readily grant her the access to the family when she first reached out to him.

Soon, she unexpectedly found Pattillo was interviewing her.

"He grilled me about race in America. Rightly so," she says.

"He was like, you know, 'Why should I put some young white girl in touch with Deborah? All of the white people who have come along wanting something from this family have caused harm to them. And I'm not going to be part of that,' " Skloot says.

"He was very stern. He had a mission. But he was definitely giving me a chance."

It took several phone calls--she had homework between them--before Pattillo finally gave Skloot what she wanted.

"Many years later," she recalls," when he and I would talk about this moment, he said why he went down that path with me was because he heard something in me that was similar to Deborah. Which is, they were really two very driven women who were obsessed with the same question."

"'Who was Henrietta Lacks? What did she do for the world? Why doesn't anyone know about her?' And also, we were both women who were not going to take no for an answer."

Skloot shared her experiences with a tone that mixed light laughter and deep reverence. "In some ways, he was like a teacher," Skloot says.

"He was my mentor in terms of the bigger, social issues of the book. He really believed in my ability to learn and understand race in America and all the important elements of the science and ethics that were part of the story."

Keeping the story alive

Skloot's book, The Immortal Life of Henrietta Lacks, raised new and old questions about how people of color are treated by the medical community.

When it was published, Johns Hopkins was in a potentially vulnerable place.

"I think at this point we were saying, 'Well, we can't shy away from the tough issues,' " Dr. Daniel Ford says. He is director of Hopkins' Institute for Clinical and Translational Research. Along with colleagues, he saw how Skloot's new book provided a new chance for outreach in Baltimore.

"Let's use this story to delve into what went on. What are the contributions that people can make?" he says.

In 2010, Hopkins launched the Henrietta Lacks Memorial Lecture series. Rebecca Skloot was the first guest speaker. Ford learned about Dr. Pattillo's long running HeLa symposium at the Morehouse School of Medicine while planning the gathering at Hopkins.

"I said, 'Wow,' you know, 'This Dr. Pattillo has really kept the story of the Henrietta Lacks' HeLa cells alive,' " Ford says.

"And then, I found out that he had trained for a couple of years at Johns Hopkins. I said, 'What a great opportunity to expand the story, give a different perspective.'"

He invited Pattillo and his wife.

"He has come to every symposium he could until COVID made us virtual. And, even then, he participated," Ford says.

"You can imagine the (Lacks) family had mixed feelings about the whole approach," he says, alluding to their feelings towards Johns Hopkins.
Ford gave Pattillo credit for the family's acceptance and participation the past 13 years.

Dr. Pattillo was remembered in remarks at last month's Baltimore event.

"Dr. Pattillo's contribution, that focus, he had that very persistent but gentle resolve that he would just keep the story going," Ford says.

Each year, the Hopkins program awards a scholarship to a promising Baltimore area high school student interested in careers in health or science. He says a total of $560,000 has been distributed.

"I mean, he loved seeing the high school students that got the scholarship. And one of them graduated from Morehouse."

This month, the Morehouse School of Medicine held its 26th annual He La Women's Health Symposium and Conference.

"It started as a place to really look into cell biology, immunology, the women's health experience in obstetrics and various other women's health topics," says Dr. Cheryl Franklin, an associate professor in the OB-GYN department. She joined the staff in 2008.

Franklin was on a telephone call with NPR from the medical school with two colleagues.

She helped Pattillo over the years in different capacities, including several conferences.

Dr. Franklyn Geary, a professor in the Division of Maternal Fetal Medicine, added that the women's health symposium "really spans across the board of all obstetrics and gynecology" since its founding.

Geary says Skloot's book is required reading for the students in the Masters of Science program.

"Henrietta Lacks really is kind of used as a springboard, before the students engage in a lecture on ethics," he says.

"He was, in so many ways, just a gentle giant. Dr. Pattillo raised awareness of Henrietta Lacks and invited extended family into community with the Morehouse School of Medicine," Franklin adds.

"We learned so much from him," she says. His humanity and empathy shone through, she pointed out.

Dr. Roland Matthews adds, "I've known him for all the years and he really truly has been a mentor to me."

Matthews chairs the Department of Obstetrics and Gynecology at Morehouse School of Medicine. Matthews' views the women's health conference named for Henrietta Lacks, her story and her contributions as the first of its kind in the country.

Matthews says Pattillo was an "excellent listener" and a mentor to residents, students and faculty alike.

"He was really that type of person who one could talk to about, not just their career, but any other matters. His knowledge was immense. His surgical skills were impeccable."

Matthews says Pattillo was at his 2013 retirement by having an award to honor his name. The Top Hands Award is issued to a graduating resident with good surgical skill.

"Even those who might have been working on those cells who did not know the history, now know it because of what he has done."

"His mind was so clear and so brilliant"

Pat O'Flynn Pattillo and Roland Pattillo got married 28 years ago. By then, his involvement promoting the life of Henrietta Lacks was decades old.
Pat recounted her husband's life from her suburban Atlanta home.

"I think only as I have seen him with Parkinson's and the debilitating disease, seeing him locked into the disease when his mind was still so clear and so brilliant and so ready still to work."

She says he not only wanted to get to know Henrietta Lacks' family but to continue work on prevention and a cure of cancer.

"I presume some of the biotech companies began to sell them (HeLa cells). But they were initially given free so that this kind of science could be shared all over the world. And Dr. Pattillo was very much that kind of Renaissance man and Renaissance doctor. He wanted that kind of information and possibility to be shared."

"He was driven throughout all of these years to find a cure to cancer."
She says the phrase "do no harm" from the Hippocratic Oath meant more than words to her husband. It extended to the patient's story and her family.

Pat is accomplished in her own right. She's founder, CEO, and publisher of the Milwaukee Community Journal, the largest African American newspaper in Wisconsin since 1976.

She says her late husband not only did research with the HeLa cell line, but he developed two additional cell lines himself. The CaSki cancer cell line and the JAR cell line, the latter originating from tumor cells found in the placenta.

"One of his cell lines (CaSki) was an integral player, much as HeLa has been for the human papilloma virus. And I know that he worked directly along with Merck, which is one of the pharmaceutical companies. He was not paid for that at that time. It was never as a paid researcher. But he was driven to tell the stories and to still strive to bring about this cure."

"Saying yes"

Even before she completed her book, Rebecca Skloot says she wanted to start a foundation for the Lacks family.

"He was right there with me on that whole journey," she says of Roland Pattillo. "We would talk about sort of how to shape the mission of the foundation, how to explain it. And also what Deborah would have wanted me to do." Deborah Lacks died before they created a foundation.

Skloot says she and Pattillo first had a mentor and mentee relationship, but it blossomed into a collegial one, especially when they formed the Henrietta Lacks Foundation.

"So, it provides financial support for people who made important contributions to science without their knowledge or consent," she says. "And their descendants, specifically people who were used in historic research studies like the Tuskegee syphilis studies, the Holmes Burke prison studies, and Henrietta Lacks family."

Skloot says she spent a decade alongside Pattillo receiving applications, reading them, "and saying 'yes.'"

"We get to do that. 'We're going to pay that person's college tuition. We're going to pay off all of those student loans.' We had moments related to that where we just got to look at each other and (say), you know, like, 'This is awesome.'"

"We get to do this, right? Like, how often do you get to do that?' " Skloot says.

Rebecca Skloot remembers the day she stood together with Pattillo and others at the unveiling for Henrietta Lacks' headstone in Clover, Va.

"I don't think I've ever seen anyone beaming as much as he was beaming, just surrounded by her children and her grandchildren and great grandchildren. Great, great grandchildren," she says.

She remembers a photograph from that day, a moment encircled by the lives of Henrietta Lacks' family.

"You know, there's a little baby, babies crawling around on the ground in front of the stone. And yeah, like, that was very him," she says. "It was such a 'him' thing to do."