By Asha Davis
BALTIMORE – African -Americans have had a complicated relationship with the health care system for years, going back at least to the distrust and fear caused by dangerous “studies” performed on African-Americans without their permission. In the most infamous of such studies, from 1932 to 1972, African-American men suffering from syphilis were used as unwitting “guinea pigs” to study the progression of untreated syphilis by U.S. Public Health Service researchers at Tuskegee Institute in Alabama.
Because this issue is so important to the health of African-Americans, I’ve decided to learn more about the causes of distrust and how it can be dispelled through my work at the Urban Health Media Project at Morgan State University.
I found a great opportunity to explore more of my topic recently when the oldest son of Henrietta Lacks, Lawrence Lacks, visited with UHMP reporters at Morgan to discuss his late mother and the complicated history of the cell line derived from her fatal cancerous tumor – the famous HeLa cells named for the first two letters of her first and last names.
HeLa cells, first cultured from Henrietta Lacks in 1951, according to the Johns Hopkins Hospital web site,are the first and were for many years the only cell line that could reproduce itself indefinitely. Because the HeLa cells were “immortal,” they have proved of tremendous value to researchers studying cancers like leukemia, developing vaccines against diseases such as polio, and inventing new techniques such as in vitro fertilization. Soviet cosmonauts even took a batch of HeLa cells into space one time to study the effects of zero gravity on cell development. Johns Hopkins Hospital has endowed a college scholarship, an annual scholarly conference and a high school science research program, all in the name of Henrietta Lacks.
James J. Potter, assistant professor of gastroenterology at Johns Hopkins Hospital, says “Henrietta is probably, if not the most important, then certainly one of the most important women in science and medicine.” The hospital web site calls her simply “the mother of medicine.”
But as I learned by listening to and interviewing her oldest son, these world-renowned cells that advanced the medical field once belonged to a very special person, a mother, sister, wife, and, in the view of some of her family, ultimately something of a victim.
Henrietta Lacks was a beautiful black woman who lived in Turner Station, MD. She loved to go with her girlfriends to the local bar named Adams and dance the night away. “She was a dancin’ machine,” her son recalled. Those days ended, however, after she visited Johns Hopkins Hospital in early 1951 for bleeding and a small pain in her lower abdomen.
Henrietta was diagnosed with a very aggressive form of cervical cancer, which killed her within a year. At this time, Johns Hopkins was known as a research hospital located in the middle of a poor black community. Henrietta’s grandson, Ron Lacks, said, “In the black community, there was a legend that you get ‘snatched’ if you walk past John Hopkins at night.” This means that in the surrounding black communities, Hopkins was notorious for using black people as test subjects in their research. Henrietta was treated with radiation, which Ron and Lawrence Lacks believe worsened her condition.
After a period of time, Lawrence began to realize that every time his mother came home, she seemed to be getting worse instead of better. As time passed, Henrietta’s health drastically declined due to the radiation. Therefore, she taught her son, Lawrence, how to raise and take care of his siblings. On October 4, 1951, Henrietta died. Lawrence was 16 years old.
Hopkins’ version is different. The hospital’s website, which includes a video and more than a dozen pages devoted to Mrs. Lacks, notes that in the early 1950s Hopkins was one of the few Baltimore-area hospitals that accepted black patients. Henrietta’s treatment, Hopkins says, was state-of-the-art radium therapy but that Henrietta’s cancer was too far gone to save her.
One thing that is not in dispute is what happened after her cells were harvested and given to a researcher whose past attempts to grow cancer cells outside the human body had failed. What the doctors didn’t tell Henrietta was that her cells were being sent to a lab for such research, and that a doctor would test her cells in a culture. In this study, her cells were the first to successfully grow in a culture medium.
Hopkins donated Henrietta’s cells to researchers, and received no remuneration. But biotechnology companies have made millions developing techniques and products based on research using the HeLa cell line. This has placed the family, Lawrence and Ron Lacks say, on an emotional roller coaster. They’ve received no remuneration either, and are not likely to. But they have the knowledge that their mother’s suffering, and her donation to science, has saved or improved the lives of countless people, and that HeLa cells are not done working. They are grateful, though, that the family’s complaints about Henrietta’s experiences have caused a major change in how Johns Hopkins and other hospitals carry out research. They now require tissue donors to be advised of their rights and to give “informed consent” before taking any tissue from them. The family, say Lawrence and Ron Lacks, has to settle for being happy for the millions of lives her cells have saved. How would you feel about this?
With the Henrietta Lacks story in the back of my mind, I set out to question some black men of today about their attitudes toward the health professions. Keith Warrens, is a volunteer at the No Boundaries Coalition 10th Annual Block Party. He allowed me to ask him some questions regarding African-American men’s health in this community.
When asked to describe his health he used the term mediocre. I thought it was an interesting choice of vocabulary used to describe health care, knowing it means moderate or low quality. This shows Warrens’ belief that his healthcare can be better. Warrens shared that he just had a Wolff-Parkinson-White syndrome procedure at Sinai Hospital of Baltimore.
Wolff-Parkinson-White (WPW) is a syndrome one is born with where an extra electrical pathway is formed between the heart’s upper and lower chambers. This causes the heart to pump at faster pace at different times in the person’s life. Warrens did not know he had this heart condition until he visited the emergency room at Sinai for chest pains, which he had been experiencing for three days.
While at Sinai, he noticed that there was a lack of African-American doctors on staff. Yet, even with the lack of diversity he felt comfortable and trusted the doctors because he was raised to believe that doctors, ” should know what they are doing.”
Reflecting on that, a few questions came to my mind. Such as, if Warrens had been going to his regular check-ups shouldn’t his doctors have noticed this condition earlier? What would have happened if Warrens went to seek medical help on the first day he experienced chest pain versus the third? Would his outcome be different? Questions similar to this one really begin to focus in on the question – did his regular doctors really know what they are doing?
Another young man interviewed at the block party was Justin James. James was giving out information for the University of Maryland Medical System’s Medicare supplement plans.
He described his health as good because he goes to the doctors twice a year, unlike most people in his neighborhood. His regular doctor’s office is located at Potomac Health Care at Owings Mills. Justin has also expressed that their of lack of African-American doctors and would like to see more in the field. He believes seeing more people who bring a sense of comfort to the patient. He also believes if there were more African-American doctors at a pediatric doctor’s office, African-American children would have more role models to look up to in the medical field.
My experience learning the history of Henrietta Lacks and her famous cells, and in talking about health issues with contemporary African-Americans, has convinced me to continue to explore the issue of trust. I believe I am on the right track.Throughout my time participating in the Urban Health Media Project at Morgan, I will continue to talk to Baltimore men and others in health care to learn more of the history of this poor relationship and what is being done to improve the relations between the health care system and African-Americans.
Contributing: Riley Johnson