Thursday, May 31, 2012
More on Henrietta Lacks and compensation for medical test subjects
A few weeks ago, my wife and I attended "A Conversation With David 'Sonny' Lacks" at the California Center for the Arts in 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 the University of Calirfornia-San Diego.
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, 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.
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 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. [Author'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 and Medicare Part D for prescription drugs.
Part B involves an annual fee of $140 plus monthly premiums of $99 plus 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.
This post by Richard Just, MD, ACP Member, originally appeared at JustOncology.com, a joint publication of Richard Just, MD, aka @chemosabe1 on Twitter and Gregg Masters, MPH, aka @2healthguru on Twitter. Dr. Just has 36 years in clinical practice of hematology and medical oncology.
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