The book “The Immortal Life of Henrietta Lacks”, authored by Rebecca Skloot, a top ten book-seller for over three years, told the story of the Henrietta Lacks, a 31 year old woman who died from cervical cancer, with only nine months between her initial diagnosis and her demise.
Born in Roanoke, Virginia, August l, 1920 and raised in Clover, Virginia, this wife, mother and new citizen of Turner Station, Maryland, moved, with her family, to find employment at Bethlehem Steel Companies, that employed over 38,000 people during that industrial period. Henrietta Lacks, typified women of her time.
She loved, attended church, helped others coming to Maryland from the South for employment opportunities and dreamed the dreams of women her age. She loved to dance, play cards, and help her family by cooking delicious meals. Those who knew her say “ she was a giver”. So many are not surprised that her cells now continue to give to so many, yet today.
Mrs. Lacks was first seen by Dr. William Wade, one of the doctors of Turner Station, Maryland, five months after the birth of her fifth child, Zakariyya. When Dr. Wade could not halt the bleeding, he referred Henrietta to Johns Hopkins’ Gynecology Department. It was there that Dr. Howard Jones took a biopsy and told her she had cancer.
Over the months, the standard of care, for that time, was administered but her cells, taken without her knowledge, continued to proliferate instead of dying. After a very painful eight months, Henrietta died on October 4, 1951 and was buried in an unmarked grave. A grave that was ultimately marked in May, 2010 with funds donated by Dr. Roland A. Pattillo, who worked under Dr. George Guy, at Johns Hopkins Medical School. Dr. Gey, who had been working to find live cells lines that could be used to test, develop and create pharmaceuticals to address the scourge of polio that was crippling the nation, including President Franklin D. Roosevelt.
Trillions of Henrietta Lacks cells were grown and promulgated at the Tuskegee Institute, in Tuskegee, Alabama, at the same time that the Department of Public Health was also funding the testing of Black men, alleging to find cures for syphilis and gonorrhea. These cells were said to have come from a woman by the name of Helen Lane, not Henrietta Lacks, as the family would later learn.
For many years, it was not known that Henrietta’s cells had been harvested, nor that she was the donor of HELA cells. Over twenty years, after her death, when the family was approached for various science/research projects, and lawyers began to propose money-making opportunities, that never materialized, did the family learn about their Mother’s cells.
While it was known that penicillin was a cure for syphilis, men continued to come to Tuskegee where they were guaranteed meals and free health care, during the Great Depression. At the same time, the Lacks Family was in the throes of their loss and deeply affected by the maladies associated with lack of funds. Ultimately, several family members agreed to care for the Lacks children. The after-effects of such a travesty certainly affected the family’s economic, educational and social opportunities. Multiple abuses were remembered by the children, these scars inflicted indelible wounds.
The oldest son, Lawrence and his wife, Bobbette, attempted, to the best of their ability, to keep the family together. To their credit, they always remained a committed, loving, family, who worked to better themselves and uplift the whole, as they continue to do today.
Many approaches to the Lacks family, over the years, never led to full-understanding of what HELA cells were, nor any compensations for the trillions of dollars earned by world-wide pharmaceuticals that provided cures and better lives for many. These discoveries and cures continued to allude the Lacks family. And today, many need new discoveries to improve their quality of life. Cancer, stroke, diabetes are maladies that have affected several family members.
Deborah, second daughter of Henrietta Lacks, whose only sister, Elsie, died after years of institutionalization for epilepsy, shortly after Henrietta’s death, continued to ask about her Mother. Throughout the years, Deborah was the persistent, consistent advocate that sought more information, more hospital records and expressed her feelings of deep loss as a teen, as a young Mother, and certainly as a mid-lifer, with many illnesses, herself.
Regrettably, Deborah did not live to see the book published, nor has she heard the many accolades we all wish to give her, for she passed in May 2009, after years of battling high blood pressure and acute diabetes. We honor Deborah, for without her there would have never been “The Immortal Life of Henrietta Lacks”.
Dr. Roland Pattillo, in the interim, had begun the annual symposium on women’s health at the Morehouse School of Medicine, in 1996. Named in the honor of Henrietta Lacks, whose cells he had first worked with in his undergraduate chemistry class at Xavier University, in New Orleans. Dr. Pattillo had witnessed the affects of hydroxy urea on HELA cells, while working, with his professor, for a cure for cancer.
He also knew that the cells had come from Henrietta Lacks, a Black woman, often un-named, in the past. So when the opportunity came to work on HELA cells, at Johns Hopkins, as a Fellow under Dr. Gey, Dr. Pattillo worked aggressively on other things the HELA cells could do in discovering cures for cancer, while learning more about the Trophoblast and stem-cell identification. His cell lines continue to be used and are one of two lines used in testing for the Gardasil inoculation that prevents cervical cancer today.
Dr. Pattillo continued to challenge science and the use of the HELA Cells, and in1996, invited the Lacks Family to the first HELA Conference held for the Morehouse School of Medicine at Morehouse College’s Dr. King Chapel. David Lacks, Sr., Deborah, Sonny and other members of the family were honored by the City of Atlanta. This proclamation of Henrietta Lacks Day in Atlanta represented the first official introduction of the Henrietta Lacks family.
The report of the 1996 HELA Conference in the American Journal of Obstetrics and Gynecology was read by Rebecca Skloot a scientific writer who had heard of Henrietta Lacks in her biology classes as a young college student. Enthralled by the story of the cells and bolstered by the knowledge that this story had never been told, she reached out to Dr. Roland Pattillo. Dr. Pattillo, after much scrutiny, determined that Rebecca was sincere about telling the true story. The rest of it is history, as the book, “The Immortal Life of Henrietta Lacks” remained in the top ten book category for over three years. It has been translated throughout the world, read by millions, and has become the impetus for many discussions, additional scientific, scholastic, bio-ethic symposiums and speaking engagements plus opportunities to relate to inquiries about the needs of the Lacks family.
Johns Hopkins School of Medicine, under the leadership of Dr. Daniel E. Ford, Vice Dean for Investigation and Director of Johns Hopkins Institute for Clinical and Translational Research, began a scientific, scholastic, community and family initiative four years ago on the Johns Hopkins campus. Noted speakers have been at the forefront of addressing the major health concerns from the community, particularly East Baltimore where community-based organizations, schools, including a partnership with the Paul Lawrence Dunbar High School, where two $ 15,000 scholarships have now been awarded, and the hospital community comprised of employees of Johns Hopkins are very supportive.
The name, image and significance of Henrietta Lacks are no longer an anomaly. Few have not read the book, or watched television shows about the family. And soon there will be the movie about Henrietta Lacks’ life, that has been scripted and will be ultimately casted for view on HBO, with underwriting supporters, including Oprah Winfrey.
This year’s, Johns Hopkins HELA Memorial keynote speaker was Dr. Gary H. Gibbons, Director of the National Heart, Lung and Blood Institute, NHLBI, who oversees a staff of over 900 scientists working to cure, sustain and improve the quality of life of those affected by heart, lung and blood diseases. Dr. Gibbons was full Professor and Director of the Heart Institute at Morehouse School of Medicine, after stints at Stanford University in California and Harvard School of Medicine. He is an outstanding, creative scientist, himself, respected highly for his leadership in the American Heart Association.
Dr. Gibbons quickly identified with the Lacks Family and the need to ensure that they are always remembered and honored for their gift of life to so many. Over 70,000 papers have been chronicled and presented using HELA cells. Thousands of pharmaceuticals have begun their initial tests and slides with HELA cells.
It is said that if they were connected, HELA cells would go around the world multiple times and be one hundred times taller than the Empire State Building . They have traveled to the moon to study the affects of zero-gravity as a precursor of space travel and resultant cellular affects. Yet, the Lacks Family has never been monetarily rewarded for this magnanimous gift to science.
The family were introduced to the cells, their proliferation, and their significance to science through the Johns Hopkins symposiums; and annually they learn more as they now transfer their knowledge to additional memorials that honor their Mother, grandmother, great grandmother and aunt.
Some of the family are now speaking about memories, also sharing the new things coming to the family by way of opportunities, yet their health challenges and desires to continue to grow, while helping others, remains a challenge .
The maladies that disproportionately affect the African American community certainly have not escaped the Lacks family. Bobbette, the wife of Lawrence Lacks, the oldest son, suffered an acute stroke in January 2012 and continues to require daily home nursing care.
“Sonny”, David Lacks, suffered a stroke in June of 2013, after going to many colleges and universities to share how the family continues to remain focused and united in honoring their Mother’s legacy of giving. His hospital bills are in the hundreds of thousands of dollars and now unable to work, his expenses remain a legitimate personal concern.
Zakariyya’, the youngest’s, knees are so bad that he now is cared for in a senior-assisted living complex. Hopefully, the Affordable Healthcare Act will help to address these medical and economic challenges.
More universities are making the life of Henrietta Lacks required reading and the second, third and fourth generations are making education, increased exposure and augmented involvement in all future Henrietta Lacks activities a requirement for the use of her name and image. The unification of the Henrietta Lacks legacy justifiably warrants involvement of the family.
Recently, with help from Johns Hopkins, the family, forged an agreement for the utilization of Henrietta Lacks’ genome. Concerned about what this knowledge might mean to descendants of HELA, they agreed, in writing, to permit her genome to be used but it requires approval of a formal committee, comprised of Lacks Family members, scientists from Johns Hopkins and the community, that will determine which scientists and which projects would be permitted usage.
The Henrietta Lacks Legacy Committee, led by tenured advocate Courtney Speed, of Turner Station, where the Henrietta and her family resided before her death, held a plaque ceremony at the New Pittsburgh Avenue address, Saturday, October 7, 2013. Over 200 people witnessed the unveiling, including the Lacks Family, Mrs. Speed, her Board and residents from the community, including Dr. William Wade, Jr., plus Dr. Roland A. Pattillo, from the Morehouse School of Medicine and Dr. Daniel Ford, from Johns Hopkins Medical School.
The Lacks Family Foundation is available at www.helafoundation.org where your donations support other families affected with major health issues, and provide employment and training opportunities. Administered by the Lacks Family, the foundation made its first grant to a Baltimore group that supports outreach and workshops for prostate and breast cancer patients. Called Time 4 the 99, the organization’s goals are prevention and reducing the disparities in African American diagnosis and care.
“HELA FAMILY STORIES”, with memoirs from Lawrence and Bobbette Lacks, is available exclusively at Amazon.com. It captures the memories of the children and its affects on their lives and thoughts, as shared by the oldest brother and his wife, who became surrogate parents for this young family, after Henrietta’s death, 62 years ago.
Dr. Roland Pattillo, along with a group of scientists, HELA family members and residents of Virginia are working to actuate CRIL-HELA, the Committee to Recognize the Immortal Life of Henrietta Lacks. The dilapidated cabin, where Henrietta was raised, before coming to Turner Station, Maryland, remains in Clover, and many believe this should be a national historic site, with national recognition and designation. Additionally, Morehouse School of Medicine continues to lead by honoring HELA during their annual symposium, in September, while working to further refine the CRIL-HELA mission.
If you have not read the book….you must…for it is an engaging discourse on the lives of people of a different era yet so impacting on our lives today. “The Immortal Life of Henrietta Lacks “ illuminates the challenges of a woman whose cells continue to give so much to testing, trials, and future discoveries. We know who Henrietta Lacks is….she is a heroine. Thank you Henrietta!