On Saturday the wind blasted from the east and there was rain all day. And all day I read, gripped by The Immortal Life of Henrietta Lacks by Rebecca Skloot. Ten years in the making, this book is well-written and beautifully structured. It tells the story of the making of the book, Skloot’s investigation, Henrietta Lacks and her family, medical ethics and Lacks’s cells, which have been astonishingly vigorous. The book is thoroughly researched, the author’s treatment is compassionate, knowledgeable, honest, lucid.
Back in the day, not as far back as one would hope, scientists and doctors experimented on vulnerable populations: African-Americans, soldiers, psychiatric patients, orphans, and others who were either disenfranchised or sold for the purpose. This is the context for the horror and suspicion which Henrietta Lacks’s family felt when they discovered that she lived on in some incomprehensible way, blasted into space, used in cancer research, and a thousand other ways.
Her family was poor. Their education, such as it was, ended in grade school. They’d suffered from systematic poverty and racism for 150 years. And the most recent generation has also suffered from familial abuse that included torture and starvation by step-parents. They did not choose, or understand, how Henrietta’s cells led to uncountable medical and scientific discoveries, including the Salk vaccine for polio.
When Henrietta Lacks underwent surgery for cervical cancer in 1951, at the age of 30, the doctor sliced a bit of her tumour. This slice was used in research on culturing cells. Up to this point, human cells had quickly died in culture. But Lacks’s cancer cells turned out to be uncommonly vigorous. They multiplied in the millions, for decades, and are still doing so. Ironically, the disease that resulted in her sad and early death provided the human tissue necessary for testing drugs, vaccines, and even effects of space travel. Known as HeLa cells, they were freely shared among scientists at first. But then a bright entrepreneur took on the task of turning HeLa production into a billion dollar business.
Yet her family can’t afford health care. They suffer from diabetes, high blood pressure, osteoperosis. They die young from strokes and heart attacks.
This is her younger daughter, Deborah Lacks speaking. She was a toddler when her mother died of cancer.
Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make. (p 256)
A poem by Deborah Lacks:
white and rich gets it
my mother was black
black poor people don’t have the money to pay for it
mad yes I am mad
we were used by taking our blood and lied to
We had to pay for our own medical, can you relieve that
John Hopkins Hospital and all other places, that has my mother cells, don’t give her
Nothing. (p 280)
Just a few years ago, Henrietta Lacks’s middle son had a quintuple bypass when he was 56 years old. He woke up from surgery $125,000 in debt because he didn’t have health insurance to cover it. (p 306) His mother’s cells sell for about $200 a vial. The quantity of cells would cover the earth several times over.
The doctors who treated Henrietta Lacks did so to the best of their ability and the medical knowledge at the time, at a hospital which was established specifically to treat poor people regardless of race at a time when most hospitals wouldn’t treat African-Americans at all. George Gey, who did the original research on HeLa cell culture lived modestly, putting his own salary into the lab equipment and working around the clock, while his wife, Margaret Gey supervised and ran the lab with no salary at all.
But there is something immoral and callous about the subsequent arguments and court cases around use of human tissue. Protesting (successfully) that scientific progress would be halted if people had rights over the use of their own discarded body bits, scientists, their lawyers and other authorities seem to have no problem with the fact that those people have no access to the benefits that are derived thereby.
This is not only a fascinating book, but an important one. While never stated as such, it is a clarion call for universal healthcare.