Getting Her Say:

The Immortal Legacy Of Henrietta Lacks

Patient Advocate and CEO of Clinical Ambassador.

Prior to working in marketing/public relations, Sumaira worked as an actress/model in Bangladesh & India starring in numerous music videos, a documentary, and was the lead actress in an English-language independent film. She is also a classically-trained Kathak dancer and has performed at Madison Square Garden, Kodak Theatre, and the Rudolf Steiner Theatre. In 2010, Sumaira earned her bachelor’s degree in public relations from Boston University’s College of Communication.

Save the Date!

What follows is a collaborative blog that commemorates the life and legacy of Henrietta Lacks written by two women of color— both members of the Medable Patient Advocacy Council (PAC). We offer our observations here in two parts.

It seems unfair that so many are unaware of her - a woman responsible for saving countless lives and counting. However, in celebration of Black History Month, I feel privileged to educate our readers about the unforgettable story of a young black woman whose remains transcend mortality and quantifiable impact.

She was only 31 years old when she passed away, after failing multiple treatments for cervical cancer. She left behind five devastated children, her husband, and parents. Her name was Henrietta Lacks.

Unbeknownst to her, a sample of Henrietta’s cancer cells had been biopsied by Dr. George Gey, the Head of Tissue Culture Research at Johns Hopkins Medicine. The hospital lab frequently obtained specimens from cervical cancer patients but found that average human cells had a brief shelf-life which resulted in virtually ineffective samples, the vast majority of which only survived a few days outside their human host. In an ironic twist of fate, given her tragic end, the cells biopsied from Henrietta Lacks were found to be freakishly durable. Gey was able to consistently propagate these cells in tissue culture. Paying homage to Henrietta Lacks’ monumental contribution to science, Gey did the decent thing and named the cell line for her.

As it turned out, HeLa cells were unlike any other, both replicating and mutating under direction at a rate that provided ample cell supply for future, groundbreaking discoveries in a broad array of research conducted by scientists all over the world. In fact, growing HeLa cells quickly became a very profitable business that struggled to keep up with demand.

The beauty of it all? By utilizing the HeLa cell line, scientists have made significant advancements in medicine without having to resort to tying their discoveries in live human beings as their first step. Scientists could now pursue all kinds of novel treatments by testing in HeLa cells first.

The uses for HeLa cells quickly expanded beyond cancer research. Most notably, the cell line played a significant role in developing polio vaccine and subsequently eradicating the disease. Additionally, Henrietta’s special cells have had an impact on a long list of scientific breakthroughs across a wide spectrum of therapeutic areas and applications including but not limited to virology, genetics, and even in ‘space microbiology.’

The infinite contribution of Henrietta Lacks to science inspires me as a woman, a person of color, a patient, and an advocate. While it’s upsetting to think that she’ll never know the magnitude of her contributions, I feel privileged to share that out of Henrietta’s tragic story has come so much good. Her posthumous impact on the entire human species is one of the most fascinating stories I have ever heard and will forever be etched in my mind and heart.

— Sumaira Ahmed, a member of the Medable PAC

As Sumaira outlined, the unusually robust HeLa cell line utterly revolutionized medical research. As a matter of fact, famed scientist Jonas Salk used the HeLa cell line to develop the polio vaccine, which sparked mass interest in these cells that lead to massive and commercial efforts to clone Henrietta’s cells starting in 1955. Since that time, registered patents involving HeLa cells have exceeded 10,000 (ten thousand). Researchers have consistently benefitted by using Henrietta Lacks’ cells to study disease en masse, and millions of living people (three generations to date) have benefitted significantly, mostly unbeknownst to them. It’s accurate to say that literally millions of human lives have been impacted by the knowledge derived from testing the safety and sensitivity of new products and substances on HeLa cells.

But the story of Henrietta Lacks is an object lesson in how betraying public trust impacts the entire scientific community. Adding more insult to more injury, Henrietta Lacks’ family were entirely clueless about her scientific legacy and the existence of HeLa cells until 1973. At that time, her living relatives were contacted not to finally extend an apology, an explanation, or compensation for what Henrietta had provided the world, but to further exploit her relatives in pursuit of extending their library of genetic samples. The family represented the potential to gather more medical insights from the people who carried the same unique genes.

Exposure snowballed when the BBC screened an award-winning documentary on Lacks and HeLa, which prompted Rebecca Skloot to author her very successful book titled The Immortal Life of Henrietta Lacks. The rest has become history, albeit a conflicting blend of medical miracle, systemic racism and patient abuse.

You see, the story of Henrietta Lacks is also a profile highlighting the lasting harm of medical mistrust based on historical abuses, unresolved accountability, and modern-day urgency to address disparities in the very patient community from which she came. All of these issues swirl around, but for people who look like Henrietta and my mother, the conflicting issues persist.

At the heart of this story lies the issue of trust— or lack thereof. As a community, we experienced the Tuskegee Syphilis Experiment through the lens of our grandparents who depicted the medical establishment as stone cold, self-serving and paternalistic. We then witnessed our parents’ palpable and righteous outrage at Henrietta’s demise. And for millennials who have now witnessed a barrage of injustices in real-time— sometimes up close— pursuing medical solutions to persistent health disparities against the backdrop of police brutality and other overt forms of toxic racism keeps eager participation at bay. Not surprisingly, simmering anger is the more likely response, and it is sometimes not even beneath the surface. Thus, is it any wonder that concerns about exploitation. on repeat,have become multigenerational in this environment.

The exploitation of Henrietta Lacks took place in a void of medical ethics that has since been addressed in an official and regulatory capacity. But the reality is twofold: This story is sadly emblematic of a bigger history of immorality fueled by ongoing systemic racism, but is alive in our collective memory of how that feels and these issues cannot easily be teased apart. And yes, it is ultimately ironic that our distrust can itself be a barrier to better outcomes and is outright harmful to the very people most likely to benefit from medical progress. You will observe that “betwixt and between” results in a schizophrenic relationship with health and healthcare, yet we sit here at this intersection.

Given the dark legacy of medical research conducted by virtue of sanctioned racial discrimination, it is entirely unsurprising that African Americans continue to report greater mistrust of physicians and medical researchers than any other groups. A 2006 study found that 44 percent of African Americans reported low trust in health care providers compared to one-third of white patients. When consistent, positive, or consistently positive interactions with physicians are scant, so too is the trust.

Don’t ask why Black people would not move swiftly toward providers made more accessible through Obamacare or toward interventions that would appear to suit our own best interest, or to participate in clinical trials. Instead, ask how minorities— and Black people in particular—would not be leery of medicine and all things related to it.

It’s an undeniable fact that minority groups have been touched by racism and discrimination in the health care system. However, so is the harm that comes from withholding our trust in the medical sphere. Medical distrust (not “mistrust” because in this case, lack of trust is based on actual observations or experiences) has dangerous, even lethal consequences for those withholding their confidence in the context of health. Numerous studies found an association with lower health care engagement, compromised medication compliance, and (surprise!) less participation in research meant to address disparities and with the intention and potential to enhance health outcomes.

As contentious relationships within the clinical care environment persist, it cannot help but feed stereotypes of Black patients being "difficult" or disagreeable, which can ultimately result in some providers justifying the suboptimal care still documented by some Black patients. Not surprisingly, this feeds a vicious cycle of unsatisfactory clinical encounters and patients who respond with more distrust and a reluctance to engage in practices that can ostensibly protect against the need for more aggressive medical interventions. And so, it goes.

Reluctance on the part of African Americans and other minority groups to participate in medical research risks significant harm to the health of our communities. When medical treatments like cardiovascular disease, diabetes or cancer drugs are derived from exclusively white research participants, they've been found to be less effective for minority groups. Or, at the very least, adjustment of dosages was required in order to be more effective in some cases, and less toxic in others.

While the most basic common sense says that equal inclusion in research trials for people of all races and ethnicities is essential to finding the best treatments for all patients, it doesn’t address the issues of trust.

Racism, paternalism, deception, exploitation and injustice permeated both clinical care and clinical research during Henrietta’s lifetime. It is true that the world is not quite the same as it was 70 years ago, ethically or medically. But, it must also be said that just coming to grips with medicine's past is not enough. We have to acknowledge the many ways those antiquated attitudes have been stoked, reignited, and reinforced under the deplorable guidance of recent administrations. Progress has experienced a setback. Much must be addressed again as if for the first time. However, we cannot let the grip of the past and the psychosis of white supremacist ideology be a barrier to delivering on the promise of medical ethics, health equity and doing what pragmatically serves everyone's health today.

Henrietta Lacks was singularly responsible for ushering in better screening tools, diagnostics, and treatments across the spectrum and beyond the speculum, if you will. The advent of pap smears and the HPV cervical cancer vaccine are but one area of impact by HeLa cells. Henrietta’s legacy is, at once, invisible and undeniable, both microscopic and telescopic. Her epic cells have reduced pain and suffering and extended life of millions of human beings. The irony that she would never know this always catches me in the throat.

I don’t have all the answers, but I do have perspective. As someone who is also a Black woman, who is a scientist by training and who was raised by a Black woman scientist, who is now an entrepreneur who has carved out a niche in patient recruitment and inclusion, and who also remains a cautiously enthusiastic participant in clinical trials, I will tell you that the answers must be bathed in a solution of transparency and allowed to germinate in a basic acknowledgement of the larger social construct in which we operate. The answers probably require that you continue to endure more venting about these things on the patient and community side. There will be no avoiding that. The catharsis demands it, actually. Just pledge to be better listeners moving forward, in both structured and casual settings. It should also go without saying that the solutions we seek should include regulatory policy that actually possesses ‘teeth’ and consequences for our industry’s lack of compliance diversity standards that are still lacking in many areas. Enough is enough.

And, as someone who very easily sees her own mother in the profile of Henrietta Lacks, her story sits a little differently in my spirit. The obligation to address this chasm is definitely personal, so you’ll have to forgive my impatience.

— Allison Kalloo, MPH, a member of the Medable PAC