Sunday, May 9, 2010

A Mother's legacy: did her cancer help cure mine?

In l951, some twenty years before President Nixon would declare war on cancer, a technician at John Hopkins Hospital in Baltimore meticulously cut a biopsy sample into one-millimeter squares, covered them with a culture medium developed in the same lab, sealed them in test tubes and put the tubes in an  incubator.
         The lab assistant had done this hundreds of times before, in an attempt to establish an infinite line of cells -- the Holy Grail in medicine then – for research.

        Within days something that had never been witnessed before occurred.   The cells from the cancerous tissue were not only still alive but multiplying “…with mythological intensity.”  To this day these cells, HeLa, as they were labeled after the first two initials of the women they came from, have not stopped. 
         This incredible moment in science – for all its ramifications – is just the tip of the iceberg that journalist Rebecca Skloots taps in The Immortal Life of Henrietta Lacks, the spellbinding story of Henrietta Lacks and what happened to the cancerous cells removed from her without consent.  The book holds up a mirror of the past century’s biggest issues – race, women’s rights and health, the commercialization of medicine and research, the term “informed consent”, the rise of the patient advocate movement, the search for cures and vaccines, inequality in health care. 
          You could develop a year-long high school curriculum from The Immortal Life of Henrietta Lacks, and still have ample topics remaining, starting with the obvious beauty of teaching science in a way that cements discovery to time and place, ethics, public policy, journalism and even literature.  Because in essence this story is so deeply human, I’m finally writing it on Mother’s Day, even though I’ve had the book since January.
           The Immortal Life of Henrietta Lacks is one young Afro-American mother’s equally wondrous and equally devastating legacy.  The first follows the time bomb that made Henrietta Lacks “immortal” in the first place: a malicious adenocarcinoma of the cervix.  Her cancer was made worse by the diseases her husband brought home with him as well -- HPV, gonorrhea and syphilis. HPV implants itself into a cell’s DNA, where it spits out proteins that lead to cancer, and venereal diseases weaken the immune system.  Both of these factors probably contributed to the aggressive nature of her cancer.
From those vicious, cancerous cells the resulting HeLa cell line would eventually become a commodity, purchased from one lab to another for research, making millions of dollars many times over.  None of the funds ever went directly to tDr. George Gey, whose lab replicated the cells, or the Henrietta Lacks family. HeLa cells we learn, helped develop a vaccine for polio, researched the genes that start and stop cancer, and helped develop drugs for some cancers and Parkinson’s, among others.  As of 2009, more than 60,000 scientific articles have been published on HeLa research.   
But for Henrietta Lacks in l951, cancer treatment was something she endured primarily alone.  She knew something was wrong and told the receptionist at John Hopkins that, “I got a knot on my womb.” Her cervix was not removed, nor did she have a hysterectomy. She received two radium treatments in the “colored-only” operating room of John Hopkins then began a month of x-ray therapy.  By August she would be back in the hospital, tumors beginning to fill her body.  When she died on October 4, she left five children.  Two were still in diapers.  Her daughter Deborah, was about 15 months old.
This is the other, devastating legacy of Henrietta Lacks’ short life, the loss her children experienced growing up without a mother, and then some twenty years later, finding out that a part of her was still alive, written about, and sold.  The Lacks themselves could not afford health care, and their lack of education and experience to understand the health care system?  Today this is called  “access to care.”  It doesn’t mean that they couldn’t physically get to John Hopkins (although it certainly can) but it does mean that the lack of understanding about how that hospital works put them at a terrible disadvantage. 
At one point, one of Henrietta’s sons simply calls the switchboard at John Hopkins and asks the operator “where the mother cells are,” as though everyone there might know. Their misery, loss and anxiety leaves Deborah especially, suspicious, sometimes paranoid, and vulnerable to others who would do them harm.  At one point Deborah said in footage edited from a documentary by the BBC, “I often visit her hair in the Bible (she had both a lock of Henrietta’s hair and her Bible).  When I think about this hair, I’m not as lonely.  I imagine, what would  it be like to have a mother to go to, to laugh, cry, hug.”
Many of the issues raised in The Immortal Life of Henrietta Lacks will leave you thinking, which is as it should.  Rebecca Skloots does a superb job of weaving all the story lines and not injecting herself into the narrative any more than is absolutely necessary to accurately recount a situation or conversation.  This in itself is exemplary, given the ten-year quest Skloot was on to research and write the book, the special care she took with Deborah Lacks.  Eventually Deborah comes to call Skloot “Boo” and would say such things like, “HI, my name is Deborah and this is my reporter.” 
Ultimately the story is Deborah’s story, Rebecca’s story, and anyone sharing the same post-war generation.  Eventually I realized that one of my brother’s was born the year Henrietta died, and that both Henrietta and my mother were born the same year: 1920.  Like Henrietta, my mother also lost her mother at a very early age so I’ve witnessed the legacy of a motherless child.  It gave me pause.
And I have nothing but accolades for Rebecca Skloots and the final twist of this incredible story.  While many are jaded about journalism, or might cop an attitude about searching for the truth The Immortal Life of Henrietta Lacks shows us otherwise.   By following the string of facts about Henrietta Lacks, her cancerous cells, and the impact of those cells on her family and society Rebecca Skloot gave the Lacks family back part of their history, part of their life.  Skloot has established a foundation to help, in part, provide scholarship money and health care assistance for the Lacks family.  The story was also a gift for this survivor, in that Henrietta Lacks’s cancer may have helped cure mine and thousands of other individuals.  It is a story to remind us to never, ever say never.

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Photo from: photo by KJ Murti 


Annemieke said...

Dear Jody,

Wow, you've done it again. This very well written blog has left me with many questions to answer but most of al with enough new information that triggers me to go out and find and read the book you talk about. I can't believe this has happened to this poor lady and her family and than again I can, putting it in the context of the day and age she lived in. That doesn't make it right but does sort of explain it. I do believe that this lady has contributed, unknowingly, to curing or partly curing others. Too bad she and her family didn't benefit. I can't imagine what her kids went through growing up without a mom and am so grateful I still have mine. Thank you for teaching me again. Big hug, Annemieke

Unknown said...

Thank you, Jody, for this and other blogs. Megan had tweeted about this post, and I'm glad I followed that pointer. Then I was further moved to see Anne's name in your memorial. Thank you.
Bruce Robinson

Running the race said...

Jody, what a story! You find some of the most amazing stories to share with your readers. It makes me think of how far we have come in the field of research via this woman. Far...sometimes I think to far with all the govt. regulations that are impossed on say medicine where the waiting period is too late for some.

Also the truth of it is not what you ask but how you ask it using the right "Hospital lingo" to get the correct answer. Thanks for the thoughts! Hugs today..Luann

Anonymous said...

Wow Jody, this is another incredibly piece of writing with such terrific about a mother's day post with a difference!

Jody said...

Thank you all for your comment. I do so encourage to read the book -- it flies along like a mystery! I've barely touched the surface.

Come back and visit again soon!

Bruce, really thrilled you stopped by. Anne made a last impression on me in the short time I knew her. Megan and I talk about her often. Hugs to you.

Debbie said...

Thanks for this great post Jody. I have heard about this story but now have enough info to know I must get it and read it. What a tangled web of medicine, race, health care, patients rights and family issues, among many other things. It shows that so much in life is inter-connected, as are so many of us.
Love, Deb said...

What a phenomenal book!! I need a book to read on an airplane & will get a copy. The title of this blog is also very thought provoking. Thank you.

Unknown said...

Thank you, Jody for having shared this fantastic article. Wow! I came about the book by accident; however, I've known about Henrietta Lacks for many years; I first read a story about her in "The Afro American" newspaper, and again years later. I remember having read that Mrs. Lacks' cells were in Russia even! And, that was before the iron curtain came down. I am into names, so when I came upon the last name, "Lacks" it dawned on me that I know a family in Baltimore by that name, and sure enough it is the same family. I will be contacting them, soon. I am a 7-year breast cancer survivor. Wouldn't it be something if Mrs. Lacks' cells cured my cancer!? Wow!

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