The MS Diet Study: A Radical Idea

I value this study of the effect of diet on MS, not the least because it is radical. It isn’t often a rigorous clinical trial is run in which the end goal is not a marketable commodity in the form of a drug.

The end goal of this trial is patient health. It’s not about profits. There’s no cookbook cabal conspiring to profit from the chronically ill. Sure, a few thousand farmers markets may see a rise in sales of organic produce. No harm there. The fish oil industry may get a bump. But overall, no single party involved in the outcome stands to gain as much as wealth as Big Pharma does every time they release a new medication they can sell to captive consumers for as much as $7000 per month.

And yet: if you are to follow this link to the logical, researched TED Talk by the inventor of the Wahls diet, you will encounter a red warning label superimposed over the opening frame:

“Note from TED: This talk, which features health advice based on a personal narrative, has been flagged as potentially outside TED’s curatorial guidelines. Viewer discretion advised.”

And if you follow this link to learn more about the Swank Diet, Wikipedia will inform you, “The widespread claims made for the diet have not been substantiated by independent medical research.”

The good news: this MS Society sponsored clinical trial is being administered by the University of Iowa, and should finally provide the objective substantiation all people with MS deserve.

And while Big Pharma might not have much to gain financially from the results of this study, that doesn’t mean this study, if successful, won’t have a mighty economic impact. If we trial participants regain our health by merely adjusting our diets; if we leave our walkers and our reclining wheelchairs and our social security checks and go back to full time work, to do whatever it was we were schooled in, and trained for, if we can once again have the freedom to follow our dreams—we will be more effective than any worker who has had the luxury of taking health for granted. And if those $7,000/mo drugs are no longer needed, that will go a long way to correcting our nation’s disgracefully costly health care system.

Follow this link to Dr. Wahl’s rebuttal of the TED Talk warning.

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The Immortal Life of Henrietta Lacks Asks the Wrong Questions

Rebecca Skloot’s painstakingly researched, thought provoking book, The Immortal Life of Henrietta Lacks, is the engaging story of a young white science writer who makes it her mission to humanize the patient behind the HeLa cells, a strain of apparently immortal cancer cells with a Zelig-like existence.

The HeLa cells have made and lost researchers millions of dollars. They’ve been instrumental in countless medical triumphs, and they’ve corrupted test results the world over. They’ve been shot into outer space, and into the arms of powerless prisoners. The HeLa cells originated in a woman who was never asked if she would agree to be a tissue donor, and who would never live to see any of the spectacular consequences of that surreptitious biopsy.

Henrietta Lacks was a young mother of five who felt a painful knot in her womb, and sought free medical care in the “colored” section of Johns Hopkins Hospital in 1951 Baltimore, Maryland. That knot was one of many fast growing tumors. The doctors at Johns Hopkins followed the treatment protocol of the day, and met with no success. The researchers at Johns Hopkins, however, met with great success. Their unpatented protocol for cell preservation would prove to create an ideal, indestructible new home for those aggressive tumor cells.

In the interest of promoting scientific progress, the Johns Hopkins researchers shared the HeLa cells, sending them out, without any motive of personal gain, to any scientist who requested them. As it happened, requests would flood in from all over the world.

Henrietta’s identity was, perhaps inevitably, certainly unforgivably, leaked. When news got back to the Lacks family, they were not as enthusiastic as the John Hopkins researchers about the notion of forfeiting personal gain for gains to society. They were all still smarting from their loss.

Rebecca Skloot chooses to open her book with a moving reflection by Henrietta’s daughter, Deborah, which reads, in part:
“But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors. Don’t make no sense. People got rich off my mother without us even knowin about then takin her cells, now we don’t get a dime…But I don’t got it in me to fight. I just want to know who my mother was. ”

Skloot does a fine job of telling us who Deborah’s mother was, and an even finer job of bringing Deborah Lacks to life on the page. But I think she does society a disservice by championing the Lacks children’s supposed right to profit from the cancer cells that killed their mother.

Why not  instead champion the right of every American to access to affordable medical care?

And why not acknowledge that the medical advances we’ve reached so far are due primarily to the innovations of brilliant doctors, scientists and researchers, and almost incidentally to the donors who provide the raw material?

As a donor myself, I am far more interested in promoting lasting scientific advances to the best of my limited abilities than I am in obtaining a quick buck. If every donor thought they were entitled to monetary gain, medical progress would freeze to a halt. As a person with multiple sclerosis, and moreover, as a person with a child in this world, I stand to lose a quite a lot if that were to happen.

Did an injustice take place at Johns Hopkins in 1951? You bet. The existence of separate sections for whites and colored was an injustice. I’m not sure I would go so far as to say that taking Henrietta’s cells without her permission was an injustice. I’d say it was a discourtesy. Those cells were doing their level best to kill her, after all. Henrietta Lacks was getting up-to-date medical care free of charge. If she had been asked for her cells as a form of payment, she could have had the opportunity to accept the treatment with a bit of dignity, knowing she was giving something of value in return. No one, in 1951, had any idea just how valuable those cells would turn out to be. Yet those cells would have had no value whatsoever if not for the innovations of Johns Hopkins researchers. Had they been turned over to the Lacks family, the HeLa cells would have been as valuable as nail clippings. Let’s not forget that.

The cover paragraph clearly intends to stoke outrage, and maybe not so incidentally, to sell a bunch of books:
“Doctors took her cells without asking. Those cells never died. They launched a medical revolution and a multi-million dollar industry. More than twenty years later, her children found out. Their lives would never be the same.

The Lacks children do bear considerable pain. Ms. Skloot’s own research points to the obvious party responsible for that pain, and it isn’t any researcher with deep pockets at Johns Hopkins.

If they want to locate a guilty party, they should look no further than their dad.

If anyone can claim credit for actively creating the HeLa cancer cells, it would have to be Henrietta’s first cousin and husband, David Lacks. David Lacks habitually cheated on Henrietta, infecting her with the multiple strains of syphilis that led to her cervical cancer and her untimely death.

David Lacks disregarded Henrietta’s dying plea that he care for their children. He left those children with a woman who beat them and starved them. This woman was particularly cruel to the youngest, Zakariyya. She would leave him bound in tight knots in their basement for hours at a time. Is it any wonder Zakariyya would later kill a man?

I don’t disagree that the Lacks children have suffered over the HeLa cells. But much of their suffering was caused by ignorance. They thought their actual mother has been cut up in pieces, squeezed out of syringes, blown up in nuclear tests, shot into space, and cloned into rat-women. Naturally, they got a bit upset. They figured somebody’s making big money on their eternally suffering mother, and that they deserve a cut.

For me, the most poignant scene of the book occurs when Ms. Skloot takes two of Henrietta’s children, Deborah and Zakariyya, to meet Christoph Lengauer, a researcher at Johns Hopkins. Lengauer shows them a freezer full of HeLa cells, and invites them to hold a HeLa vial, and then to inspect some HeLa cells under a microscope. Here we see how, even after extensive dealings with Ms. Skloot, there is still so little Deborah and Zakariyya actually understand. Christoph spends a half hour drawing diagrams and explaining basic cell biology. He explains DNA. Deborah is relieved. She thought she’d be cursed with immortality.  “So we don’t have the thing that made her cells grow forever? Now you tell me, after all those years!”

Christoph suggests that Henrietta’s heirs should get the money from the research. He points out that ‘when oil is found on a person’s property, it doesn’t automatically belong to them, but they do get a portion of the profits.’

I don’t think the two situations compare. When oil is extracted from a person’s property, the extraction harms the property value.  Without some compensation, the owner suffers a loss. Whereas when cancer cells are extracted from a person’s body, the loss of those cells is ultimately the patient’s gain.

Though I differ from  Christoph’s point of view, I very much admire his actions. As I see it, the Lacks children deserved…exactly what he gave them. They deserve to live in a world where they are treated with respect. They deserve as much information about their mother’s cells as they can possibly understand. But do they deserve a percentage of the profits from every HeLa experiment that went right? If so, should they reach into their pockets for the hundreds of experiments contaminated with HeLa cells that went wrong? I don’t think so.

While the book itself charmed me, the afterword scared me. Apparently, “there are a growing number of activists—ethicists, lawyers, doctors and patients—arguing cases and pushing for new regulations that would grant people the right to control their own tissues.”

Here’s my problem with that: after living over twenty years with multiple sclerosis, I can tell you that as much as I would like the right to control my own tissues, I have made the painful discovery that my tissues have a mind of their own. Without medical intervention, my T-cells would continue to attack the cells in my central nervous system, and I’d be out of luck.

Maybe these people complaining about their rights are still healthy. I have news for them. “Their own tissues” are going to betray them some day. And where’s the first place they will turn? They won’t turn to their lawyer. They will turn to their doctor.