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Tag Archives: Henrietta lack

More To The Henrietta Lacks Story

25 Wednesday Apr 2012

Posted by @JustOncology in Uncategorized

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cancer, clinical trials, elder wisdom, epatients, evidence based medicine, health, Henrietta lack, medical education, medicine, physician, physicians, research, social media, twitter, wellness

By Richard Just, MD

A few weeks ago, my wife and I attended “A Conversation With David ‘Sonny’ Lacks” at the California Center for the Arts, Escondido.  The event was a sellout with 900 attendees.  As it turns out, most of the colleges and universities in San Diego County designated “The Immortal Life of Henrietta Lacks” as the book discussed by students and faculty this past academic year.  The conversation was sponsored by California State University, San Marcos.  As an added bonus, Mr. Lacks’ daughter appeared with him on the podium.  I had previously attended a similar lecture with the author, Rebecca Skloot, at UCSD.

The story of Henrietta Lacks can be viewed from several vantage points.  As a medical oncologist, and Chairman of the Investigational Review Committee as well as Medical Director of the Research Institute at Palomar- Pomerado Health, ethics in medical research certainly occupies a position of paramount importance to me.  In fact, the book is being discussed locally primarily from this perspective.  Ms. Skloot points out that obtaining ‘Informed Consent’ from patients to do research on their tissue was not required, nor was it considered, in 1951 when Mrs. Lacks’ biopsy was obtained for research purposes.  Mr. Lacks stated he did not feel the family should receive financial compensation for using her tissue for research purposes.  But, Henrietta and the family should have been told that her cells were going to be used for research purposes, what the research involved, and knowledge of the results.  In other words, essentially informed consent as we now require in all patients undergoing clinical trials.

On the other hand, he did feel that the family should receive financial remuneration from the companies that commercialized his mother’s cells by selling them to labs around the world.  This proposal seems fair.  To date, no financial restitution has occurred.

But despite all this, Mr. Lacks maintains an air of dignity that engenders respect.  Throughout the evening, there was no expression of anger or hostility; no complaining.  When asked if he thought that racial discrimination played a role in how they were treated, Mr. Lacks said no, people of all races were treated the same at that time.  Sonny said that although no one from Johns Hopkins has ever formally apologized, they have honored his mother in other ways.

Sonny Lacks was 3 years old when his mother died.  So, he has no direct recollection of her.  In fact, the picture on the front of the book is the only picture of Henrietta in existence.  All that he and his daughter know about her they learned from his older siblings and Ms. Skloot’s research for the book.  When Henrietta was treated, Johns Hopkins was the only hospital in the state of Maryland that treated the uninsured.  Fast forward to the present and this sore is still festering in our country.  Mr. Lacks stated that he recently required stents placed in his coronary arteries on an urgent basis and he, like all the members of his family, is uninsured.  This brought an audible gasp from the audience.  He said he had $100,000.00 in unpaid bills, and he opined that health care should be a right as it is in other countries, not a privilege for only those who can afford it.  This elicited a vigorous round of applause from the audience .  I would add that the number of people in the U.S. who can afford access to healthcare is dwindling also. [Editor’s Note: For specific discussion on the impact in the Black community, see: ‘Blacks See Largest Decline in Health Insurance Coverage.’]

The closest we have to universal healthcare provided by government is Medicare and Medicaid (MediCal in California), see: ‘Medicare: The Basics.’  I recently crunched the numbers in my own situation at age 70 to decide whether or not to convert from my medical group’s health plan (since I’m still working to full Medicare coverage.  Plan A is free and mandatory at age 65.  But I needed Plan B, a Medicare Supplement Plan and Medicare Part D for prescription drugs.  Part B involves an annual fee of $140.00 + monthly premiums of $99.00 + something called “Modified Adjusted Gross Income” (MAGI).  The IRS now sends Medicare a report of my income and a graduated monthly charge is added to my premium.  The monthly total amounted to $259.70.  Added to that is the cost of the Supplement and Medicare Part D.  Then the out of pocket expenses including cost of drugs in the donut hole and now you’re talking “real money.”  Of course, you can opt for a Medicare HMO but choices are limited. So for effect, I will quote myself (drum roll please!):

My conclusion was that being insured does not equate to being covered, and I needed to be a CPA to figure this out.  So, I stayed with my group health plan.

The most poignant moment of the evening occurred when Henrietta’s granddaughter was asked how she felt her grandmother should be remembered.  Her answer:

The gift that keeps on giving.

Not a dry eye in the room.

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The ‘incident’

My life was essentially on autopilot. My oncology practice was very successful; in fact, too successful. All my time and energy was devoted to keeping pace with the increasing demands of the profession. Other pursuits, be they personal or professional, always seemed to take a back seat. My main unfulfilled passion was writing.

On January 7, 2011, everything changed. I had a new bovine aortic valve and three new coronary artery grafts. A life altering event, to say the least. Fortunately my recovery has been uneventful, and I had no evidence of muscle injury. So I’m extremely grateful for the pre-emptive surgery, and since I’m back to work on a part time basis, I now can devote some of my attention to writing.

For the past several years, a colleague, trusted advisor and friend of mine, Gregg Masters, had been prodding me to “just do it”, i.e., just start blogging, podcasting and life streaming my experiences in Medicine. He pointed out the value of my 36 years in clinical practice of hematology and medical oncology as 'elder wisdom' currency in relative short supply. In truth, there is certainly a lot to write about as the clinical knowledge base has grown enormously, to the point where management of all this information requires computers. Fortunately, technology has developed at a rapid rate also so that we can not only mine all this data to obtain meaningful information, but better disseminate it to each other, health plans (including government) and especially our patients. With the advent of social media including Twitter, Facebook and You Tube, this flow of information becomes a two way street allowing physicians to listen as well as talk. On a personal note, my wife published daily status updates during my surgery and through the post-operative period on a website called Caringbridge. She posted pictures as well as narrative. Colleagues, relatives, friends and patients had a window opened to them as to how I was doing, and they in turn wrote back notes of encouragement that touched me deeply.

When Gregg and I thought about it, his background not only in 'web 2.0' (social media) but perhaps more significantly his considerable experience in the business aspects of medicine brings value into the conversation as well. In today’s environment, physicians are constantly reminded that we not only are responsible for all aspects of caring for patients, but we are running a business as well. Years ago, I remember reading an excellent book called “The E-Myth Physician” by Michael Gerber. One of the chapters was devoted to the subject of “Money”. So Gregg’s knowledge complements my clinical background resulting in the birth of JustOncology.com.

Certainly there is no shortage of topics to discuss. Utilizing a variety of media: blogging (which addresses my passion for writing), audio and visual interviews with as many of the stakeholders in cancer care as possible, we hope to provide a forum for discussion of problems facing us. From these interactions, the desired outcome is to identify solutions that can only come from a collaborative effort.

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About

JustOncology.com is a joint publication of Richard Just, MD, aka @chemosabe1 on Twitter and Gregg Masters, MPH, aka @2healthguru on Twitter.

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