Henrietta Lacks’ iconic story of inequity, injustice, and disparities in health holds Australian relevance

Associate Professor Lisa Whop stands with her arms folded and looks at the camera. Image credit Jamie Kidston, ANU

Dr Mary-Anne Land (PHAA) & Associate Professor Lisa Whop (ANU)

As a young mother, Henrietta Lacks and her husband were raising five children near Baltimore when she fell ill.  She went to Johns Hopkins – one of the few hospitals at the time which would treat black people – after experiencing extensive bleeding and was diagnosed with cervical cancer.  Despite treatment, it cut her life short on October 4, 1951.  She was only 31 years old.

During her treatment, medical researchers took biopsies from her body without her knowledge or consent.  That “HeLa” cell line – derived from the first two letters of her first and last name, became a scientific breakthrough: the first immortal line of human cells to divide indefinitely in a laboratory.

Over 50,000,000 metric tons of commercialised HeLa cells have been distributed around the world, the subjects of over 75,000 studies.

In addition to the Human Papillomavirus (HPV) vaccine, HeLa cells allowed for development of the polio vaccine; drugs for treating the effects of cancer, HIV/AIDS, haemophilia, leukemia, and Parkinson’s disease. HeLa cells have been used in research that has contributed to the understanding of the effects of radiation and zero gravity on human cells; breakthroughs in reproductive health, including in vitro fertilization; research on chromosomal conditions, cancer, gene mapping, and precision medicine; and HeLa cells are used in studies responding to the COVID-19 pandemic.

Despite the HPV vaccine, in Australia and globally, Women of Colour continue to disproportionately develop or die of cervical cancer, showing that inequity in health remains.

Australia is a recognised leader in cervical cancer prevention and control, with a national screening programme since 1991, and HPV vaccination programme since 2007.

While Australian cervical cancer incidence has halved since 1991 to 8·5 new cases per 100,000 women per year, Australia has not adequately addressed the inequitable cervical cancer burden in Aboriginal and Torres Strait Islander women.

Cervical cancer incidence among Indigenous women is double that in non-Indigenous women (19·1 new cases vs 8·5 new cases per 100,000 women per year). Mortality is more than three times higher for Indigenous women (7·0 cases vs 1·9 cases per 100,000 women per year)[1].

“Henrietta Lacks’ story is still relevant today and to Australia as it’s a clear example that inequities are deeply rooted in racism,” Associate Professor Lisa Whop, a PHAA member and a cervical cancer research specialist at The Australian National University (pictured above), said.

“The inequitable cervical cancer burden for Aboriginal and Torres Strait Islander women is profound and unacceptable. It’s neglected because it’s a women’s issue, and because it is an issue that hurts Black Women.”

Cervical cancer is preventable and curable if detected early and adequately treated, but we see inequitable burden, and inequitable access to programs and interventions. In 2020, for the first time ever, the world committed to eliminating a cancer: cervical cancer.

WHO launched the Global Strategy to Accelerate Cervical Cancer Elimination a historic and remarkable moment. Achieving the 90-70-90 targets (below) by 2030 would mean that median reduction in cervical cancer incidence rate would be 2%, 42% and 97% by 2030, 2045 and 2120, respectively, resulting in 74 million cases averted. Correspondingly, the cumulative number of cervical cancer deaths averted would be about 2 million, 5 million and over 62 million by 2040, 2050 and 2120, respectively.

Three graphics from a WHO report on cervical cancer


Image source: WHO Global Strategy to Accelerate the Elimination of Cervical Cancer

At the recent Australian Public Health Conference Associate Professor Lisa Whop presented on the realities of achieving cervical cancer elimination in Aboriginal and Torres Strait Islander Communities and asked why have our public health programs not afforded the same benefit to Aboriginal and Torres Strait Islander women?

In Australia, it is predicted elimination will be reached as early as 2028, though this may have been impacted by the COVID-19 pandemic on routine immunisation and screening programs. But it is highly probable this won’t include Aboriginal and Torres Strait Islander women. Data or lack of, is masking significant and persistent within-country inequities.

WHO targets for elimination – are we on track for Aboriginal and Torres Strait Islander women?

  • HPV vaccine coverage: lower amongst Indigenous adolescents 68.5% overall, 71.6% in females and 65.4% in males
  • Screening participation: unable to report by this measure however, screening participation is estimated to be substantially lower
  • Treatment of precancer and cervical cancer: no routine data available, some evidence indicates differences.

Elimination is achievable for Aboriginal and Torres Strait Islander communities but will require equitable delivery of public health programs and a major focus on increasing screening among never and under screened women. A 68% reduction in cervical cancer incidence is required to achieve elimination for the Aboriginal and Torres Strait Islander population. Lisa believes this is possible and the only future to see is one free from cervical cancer for all.

On 13 October 2021 Dr Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization (WHO), welcomed the Lacks Family for a special dialogue at WHO headquarters in Geneva, acknowledging the legacy of Henrietta Lacks and her contribution to revolutionary advancements in medical science.

The event was broadcast live and included remarks from WHO’s Director General, the Lacks family, Dr. Soumya Swaminthan, Chief Scientist at WHO,  Dr Princess Nothemba (Nono) Simelela, Special Adviser to the Director-General on Strategic Programmatic Initiatives at WHO and other special guests.

Today, Henrietta Lacks continues to enhance many lives, even those who are unaware of her past existence. Her life has incontestably impacted global health, scientific research, bioethics, patient rights, and equity that benefit all people.

[1] Australian Institute of Health and Welfare. Cervical screening in Australia 2018. Canberra: Australian Institute of Health and Welfare, 2018

IMAGE: Associate Professor Lisa Whop. Credit: Jamie Kidston/ANU

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