I inherited several traits from my father. First and foremost was Type I/adult onset diabetes. But, on a more cheerful note, I am also an avid, if not obsessive, reader. I remember him sitting on the stairway leading to the upstairs bedrooms reading western novels until early in the morning so he wouldn’t disturb my mother. That’s me.
Over the years I’ve had many fantastic reads. One that my father shared with me was “Bury My Heart at Wounded Knee” by Dee Brown. But none was better than “The Immortal Life of Henrietta Lacks” which I finished a few months ago. It is a masterpiece written by Rebecca Skloot, a science writer who has written several award winning articles, but this is her first book. Even though it is non-fiction, the book reads like a historical novel in the tradition of James Michener. I wish my dad was still here so I could have shared it with him.
There are so many aspects to this story it is hard to do it justice in a page or two. Ms. Skloot captures the socioeconomic hardships and racial politics endured by Mrs. Lacks and her family, and how they dealt with these indignities as best they could, ultimately with pride and grace. The author also transports the reader back to vividly portray how medicine was practiced in the era Mrs. Lacks’ cervical cancer was diagnosed and treated.
From a personal perspective, as a medical oncologist who has participated in clinical trials for 36 years, and who has served as Chairman of the Investigational Review Committee at my community hospitals for 22 years, this book has essentially achieved textbook status. I must confess I did not know HeLa stood for Henrietta Lacks. I also didn’t know the biography of Johns Hopkins the person, and the history of that hospital. It made sense that the reason her cancer was so aggressive was that it was an adenosquamous carcinoma rather than the usual squamous cell type. It was no surprise that her cells subsequently tested positive for HPV 18. I also found the history of cell culture techniques fascinating as was the economics of the industry that resulted. So, there was a lot of information that was new to me.
One chapter that was especially moving was 11. “The Devil of Pain Itself”…1951, pg. 83. The description of her level of pain was hard to read. Our ability to manage pain has improved, especially with the advent of Hospice and more emphasis on palliative care recently. But, last year I attended a symposium on Pain held at UCSD, and the first speaker discussed why no new analgesics have been added to our basic armamentarium of Aspirin and Morphine and derivatives of each for decades. A sobering thought.
Chapter 17. “Illegal, Immoral, and Deplorable”…1954-1966, pg. 127, discusses in detail the issue of informed consent, not only as it relates to full disclosure of the nature of the illness and the proposed treatment, but whether or not the latter is standard of care or experimental. During my fellowship training, I was fortunate to have an attending physician one month who was considered a giant in hematology. So, I decided to take advantage of my opportunity and asked him how he tells parents that their child has acute leukemia and his treatment recommendations. His rule was to never use the word leukemia because “they can’t handle it”. Remember this was 1973-1975 and a paternalistic attitude of physicians was not uncommon then. I learned a lot from my attending. The example I cited was a valuable lesson of what not to do.
Chapter 25. “Who Told You You Could Sell My Spleen?”…1976-1988, pg. 199, brings up a second research topic of who actually owns the tissue after it has been removed from the patient. Later chapters discuss the current hot topics of ownership of genetic material and stem cell research. Since my internship and residency training was at UCLA and Wadsworth VA Hospital, and the incident cited occurred at UCLA when I was there, the story brought back memories of those days (and nights and weekends). It is more personal and memorable for me as a result of this coincidence.
One of the colleges my daughter applied to (over 25 years ago) was the University of Redlands. Prior to the start of the freshman year, they encouraged incoming students and their parents to read a book which would be discussed with faculty members in a “town hall” meeting. The book chosen was Robert Pirsig’s “Zen and the Art of Motorcycle Maintenance”. Even though my daughter didn’t attend that college, I read the book anyway (and loved it). I wonder if “The Immortal Life of Henrietta Lacks” should be required reading for all doctors, healthcare personnel and staff involved with research? Hmmm….