Tuesday, November 20, 2012

My Introduction to the Amazing Henrietta Lacks

Left to my own devices I would read almost exclusively non-fiction. While I won't necessarily take you up on your recommendation for a movie, I love hearing about the books others are reading with the exception of the Shades of Gray trilogy. When I heard the Fresh Air interview of Rebecca Skloot, the author of "The Immortal Life of Henrietta Lacks" early last year, I knew it was going to be a good read or more likely...listen. (One of the benefits of my long commute is that I listen to a lot of books  in the car.) The fact that most of the story took place in my hometown of Baltimore was an added bonus. I even choose to accept the invitation to join a new book club simply because they had the good sense to have chosen it as their November book selection.

Definitely not a work of fiction, this book details the "benevolent deception" of arguably the most important woman in modern medical history, Henrietta Lacks. 
Until she walked into the Johns Hopkins Hospital in 1951 to have the "knot on her womb" biopsied, doctors and scientists had been unsuccessful growing human cells outside the body. Henrietta Lacks' cervical cells both malignant and capable of living in laboratory petri dishes. More than 60 years later they continue to multiply! Before your eyes glaze over, understand that HeLa cells, "the workhorse for laboratories around the world" have profoundly impacted the way we live today - polio, influenza and the HPV viruses are no longer the mortal threats they once were because HeLa cells were instrumental in the discovery of the vaccines that prevent them. HeLa cells allowed scientists to see chromosomes for the first time, played a prominent role in the capturing the Nobel Prize for Physiology or Medicine in 2008 and have even been to outer space.

It is an utterly amazing and well written story that is both technical and heartfelt.  It is also sorrowfully polluted by the many callous actions taken (or not) by a medical community guided by their own arrogance and our nation's deleterious history of racial inequality. Mrs. Lacks was a beautiful, vibrant, simple woman - a wife and loving mother of five who also happened to be black. The most indispensable person in medical research was African American!! And most certainly also because of her skin color, her cells were harvested during a routine procedure but without her consent nor that of her family. In fact, her family had no idea these cells even existed until 25 years later when researchers sought them out them for blood samples.  Henrietta's cells are tenacious little buggers and can transport themselves through the air and on surfaces (I told ya, these are very special cells) and thus had infected million dollars of other cell lines even as far away as Russia. Scientists were looking for dna markers to differentiate HeLa cells from the others, so they contacted the family. While HeLa cell lines were initially shared for free and later for $25, today a single vial of the cells can be purchased by anyone for $236.  Labs around the world still purchase millions of vials annually and have for decades."If you could pile all HeLa cells ever grown onto a scale, they'd weigh more than 50 million metric tons -- as much as a hundred Empire State Buildings" the book says. Sadly neither Mrs. Lacks' husband, 4 children who survived to adulthood, nor other descendants have ever received a cent of the proceeds. Financial hardship rather than an annuity has become their legacy. Most of them having gone some period of their adult lives lacking the very basic health insurance coverage. Once it was discovered how crucial the cells were to research, if her family had been given just a percentage of the proceeds, say 1/2 percent, from every vial of HeLa cells that have been ordered, their legacy would be radically different. This book very well might have been told by one of her grandchildren who would have become a medical researcher rather than an prison inmate.

A great deal of the story is seen through the fearful eyes of her only living daughter, Debra, who has been damaged as much by her mother's absence as she has been badgered, deceived, and disregarded by the medical community. The story is as haunting as it is infuriating. I will admit to having trouble sleeping after visualizing both her horribly painful death almost certainly made worse by the radiation treatment she was given that also turned her entire abdomen black and her autopsied body strewn throughout with pearl like tumors, invading nearly every organ. But I will view those HIPAA forms demanded at every medical facility with far less annoyance now because my medical information is protected in no small way because hers never was. Her information medical information was obtainable to almost anyone asking, especially in the medical community . The book raises issues about the ownership of tissue and/or blood samples. FYI-when taken expressly for the purpose of routine testing but not research they are considered medical waste and the donor has no claim with which I'm not certain I agree. When the physician/scientist intends their use in research those cells/fluids/tissues are donor property and an informed consent form is required before proceeding. Finally, the author wonders aloud with the reader how often doctors and scientists forget these specimens originate with living, breathing, sentient, if frail beings whose memories and loved ones deserve tenderness regardless of economic status, depth of understanding and especially race.
HeLa cells
HeLa cells splitting
In the end though, the curiosity that was sparked in the writer as a young girl and the patience of a few doctors who took the Hippocratic oath "to first do no harm" to heart, is what helped Henrietta's baby girl, Debra put past tribulations aside and understand  and feel honored how all those cells from a mother she never knew "had really done good in the world." I thoroughly enjoyed this book and I think it is definitely worth the read.  If you do or have let me know your thoughts.

Peace and Blessings, VBG


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