I just finished The Immortal Life of Henrietta Lacks by Rebecca Skloot. The book has been highly praised and rightly so. Rebecca Skloot is a poised and passionate storyteller who doesn’t absent herself from that which she weaves, nor does she impose upon it. The story is so compelling that she is at once invoked and dwarfed by it.
The book is about a woman who died of cervical cancer in 1951, and the cells taken, without consent, from her metastasized tumor, which became probably the most famous cells in the world. They live on and multiply almost effortlessly, the first cell line to do so, thus enabling a myriad of scientific research.
While the world has heard about, and benefited exponentially from the cells, dubbed HeLa, the story of this woman has remained untold. She is Henrietta Lacks, a poor African-American mother of four from Baltimore.
Henrietta is part of a community with little trust (for good reason) in, or familiarity with, the medical institution. A snapshot of Henrietta’s medical history shows a lifetime of misdiagnosis, overlooked symptoms on the part of hasty doctors, refusal of treatment on her own part due to cost or time, or lack of health knowledge.
It seems that Lacks suffers less at the hands of racist doctors, though, than at the mercy of racist institutions, that simply don’t offer or prioritize the level of care and prevention that white folks might have enjoyed at the time, and simultaneously exploited the poverty and position of African-Americans to run undue tests and disregard common ethical courtesies. Remember this is all happening simultaneously to the horrible Tuskegee Syphilis Experiments.
During her cervical cancer treatment, her cells are taken without her consent, and
then proliferate for decades without the knowledge or consent of her family … while HeLa cells jumpstart major medical breakthroughs and earn their proprietors millions, Henrietta’s husband and children struggle to make ends meet, and suffer with debilitating chronic illnesses.
Without any background knowledge of biology, when do they learn belatedly of their mother’s “contribution” to science, they understand her cells as a proxy for her and are traumatized by the descriptions of all the wild experiments being done on their mother. It is a startling look at inequities both in health literacy and health care access.
Since the time that Henrietta Lacks was diagnosed and eventually succumbed to cervical cancer, screening techniques have improved dramatically. But access to screening and prevention continues to be riddled with inequity, both in the US and worldwide.
In the US, Black and Latina women have a much higher incidence than white women of cervical cancer, which is linked to strains 16 and 18 of the Human Papillomavirus (HPV). Last year, a study in California found that African-American and Latina women received the HPV vaccine far less often than White women. And that’s just one example of the inequalities; there are others.
But globally, the true burden of cervical cancer falls cruelly on women in the developing world, who account for 85% of all cervical cancer deaths. Many developing countries do not have screening regimens in place, or if they do, it shouldn’t come as a surprise that the countries’ poorest women still won’t have access to these facilities, knowledge of cervical cancer screening, or the funds to access either.
Yet there is growing momentum to address the issue of cervical cancer and the inequity that plagues it, with the development of high technology, high usability screening options that can be used in low-resource settings, such as the new careHPV test – in development. Other more rudimentary methods of screening are also radically improving access to early detection and treatment for the world’s poorest women.
And even more amazing is that Henrietta’s cells, taken from cancerous tumor on her cervix, have helped advance the very genetic profiling technology that is now making breakthroughs in cervical cancer screening. Last year, a study showed that the HPV DNA test is more effective screening tool for cervical cancer than the Pap smear, by a long shot.
As awareness grows about the worldwide burden of cervical cancer, there is increased awareness about the links between HPV and a number of other cancers, including anal, throat, and penile, and even questions about whether men might also benefit from the new HPV vaccines on the market (Gardasil and Cervarix).
Needless to say, there has been a world of change in cervical cancer screening and prevention since Henrietta Lack first visited Johns Hopkins for an exam almost 50 years ago. Yet the question nags in my mind as to whether her access to such measures, should she be alive today, would be any different.
Inequality in access should be continually on our minds as we pioneer these breakthroughs. For, what good are technology and innovation if not to shatter the barriers to health care access?