a change of place

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ES

(what follows here at ML will be old posts, rotated occasionally):

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By |September 7th, 2014|Blogs, from the author, journalism|Comments Off on a change of place|

“The Dallas Buyers Club” Takes on AIDS, Peer Patients, and Not Taking “No” for An Answer

If you’re a doctor or nurse of a certain age, the Dallas Buyers Club will jog memories. If you’re among those who lost a loved one or friend to AIDS maybe 20 or 30 years ago, or not, this new film might wrench your heart. Anyone watching will be pushed to think hard about drug development today, the slow pace of progress for metastatic breast cancer and other young life-takers, and the FDA’s role in sanctioning, or blocking, treatments for adults with terminal illness.

Dallas Buyers Club image from FOCUS films copy

scene from “the Dallas Buyers Club” (Focus Films)

The movie draws loosely on the story of Ron Woodroof, a Texan rodeo rider who developed AIDS around 1985. A rail-thin Matthew McConaughey, who says he dropped nearly 50 pounds for this role, somehow nails the look of young, HIV-infected men who were filing into hospitals and clinics back then. After absorbing his diagnosis and said prognosis of 30 days to live, the cowboy teams up with Rayon, a (fictitious) transgender woman portrayed, memorably, by Jared Ledo. Together with an oddball group of sympathetic accomplices, the pair set up shop, to procure and distribute unapproved medications the doctors won’t prescribe. Jennifer Garner plays a sympathetic young physician, Dr. Eva Saks, who in the movie crosses lines a bit incredibly, too personally in the second half, to help the AIDS patients and commiserate. But otherwise the film is spot-on. It captures the desperation, determination and clinging together of people, then, affected by what was incurable disease.

One question that sticks with me, as a physician reflecting on the story, is how unclear it is which drugs, exactly, helped the protagonist. Woodroof, as depicted in the film, briefly takes AZT and then moves on to all kinds of substances including DDC (Zalcitabine) from Mexico, interferon of unknown purity or dose from Japan, protein supplements and more. Through a mix of stuff he lives until 1992, seven years beyond what the doctors first told him to expect. An old-school clinical trialist, almost any of my former teachers, and anyone who appreciates evidence-based medicine (as I do, for the record) would know and state and insist that you can’t draw any conclusions based on what happened to the movie’s protagonist, or Woodroof in real life.

On the other hand, clinical trials are painfully slow. Published trials can be flawed. Even if they’re randomized and well-analyzed, the findings can be hard to interpret when it comes to a single patient’s course and well-being. What’s a dying man to do?

Another relevant point, for people affected by almost any health problem, is the extent to which the patients took charge in the Dallas Buyers Club. They found and shared information about their disease independently of their physicians. The image of an AIDS patient using an old computer in a library, looking up articles about his condition, anticipates patient networks of which there are hundreds, on-line and in communities, today.

I came away from this movie feeling optimistic. Because when I was a student, 30 years ago, I wouldn’t have believed that a man afflicted by AIDS, as McConaughey portrays, could now, likely, live for a long time.

#hope, and happy Thanksgiving,

ES

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You’re Sick and I’m Not, Too Bad

“The insurance market as it works today basically slices and dices the population. It says, well you people with medical conditions, over here, and you people without them, over here…

– Jonathan Cohn, Editor of The New Republic, speaking on The Brian Lehrer Show, February 16, 2010*

There’s a popular, partly true, sometimes useful and very dangerous notion that we can control our health. Maybe even fend off cancer.

I like the idea that we can make smart choices, eat sensible amounts of whole foods and not the wrong foods, exercise, not smoke, maintain balance (whatever that means in 2010) and in doing so, be responsible for our health. Check, plus.

It’s an attractive concept, really, that we can determine our medical circumstances by informed decisions and a vital lifestyle. It appeals to the well – that we’re OK, on the other side, doing something right.

There is order in the world. God exists. etc.

Very appealing. There’s utility in this outlook, besides. To the extent that we can influence our well-being and lessen the likelihood of some diseases, of course we can!  and should adjust our lack-of-dieting, drinking, smoking, arms firing, boxing and whatever else damaging it is that we do to ourselves.

I’m all for people adjusting their behavior and knowing they’re accountable for the consequences. And I’m not keen on a victim’s mentality for those who are ill.

So far so good –

Last summer former Whole Foods CEO John Mackey offered an unsympathetic op-ed in The Wall Street Journal on the subject of health care reform. He provides the “correct” i.e. unedited version in the CEO’s blog:

“Many promoters of health care reform believe that people have an intrinsic ethical right to health care… While all of us can empathize with those who are sick, how can we say that all people have any more of an intrinsic right to health care than they have an intrinsic right to food, clothing, owning their own homes, a car or a personal computer? …

“Rather than increase governmental spending and control, what we need to do is address the root causes of disease and poor health.  This begins with the realization that every American adult is responsible for their own health.  Unfortunately many of our health care problems are self-inflicted…

Now, here’s the rub. While all of us can empathize, not everyone does. And few citizens go to medical school. Some, uneducated or misinformed, might sincerely believe that illnesses are deserved.

So let’s set some facts straight on real illness and would-be uninsurable people like me:

Most people who are sick – with leukemia, diabetes, osteogenesis imperfecta, heart disease, multiple sclerosis, scoliosis, glycogen storage disease Type II, depression, Lou Gehrig’s disease, sickle cell anemia, rheumatoid arthritis or what have you – are not ill by choice. They didn’t make bad decisions or do anything worse, on average, than people who are healthy.

Rather, they became ill. Just like that.

The idea of an insurance pool is that when everyone in the community participates, whoever ends up with large medical expenses is covered, explained Jonathan Cohn. When contributions come in from all, including those who are healthy, funds are sufficient to provide for the sick among us.

As things stand, the insurance industry divides us into likely profitable and unprofitable segments. “So you know if you’re one of the people born with diabetes, you have cancer, you had an injury that requires lengthy rehabilitation, tough luck, you’re going to end up in that pool of unhealthy people,” Cohn said.

Insurance is no cure-all, to be sure. It won’t take away my cousin’s cancer or fix Bill Clinton’s heart. That would require research and better medicines.

Depriving insurance, or care, to those who need it most is inconceivable to a society as ours was intended. It’s uncivil.

*as heard on The Brian Lehrer Show 2/16/10: Rates on the Rise

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Henrietta’s Cells Speak

“One of the ways that I gained the trust of the family is that I gave them information.”

(R. Skloot, a journalist, speaking about her interactions with Henrietta Lacks’ family, Columbia University, Feb 2, 2010)

This week I had the opportunity to hear a terrific talk by Rebecca Skloot, author of a new, flying-off-the-shelves book –The Immortal Life of Henrietta Lacks.

Mrs. Henrietta Lacks died of metastatic cervical cancer in the colored ward at Johns Hopkins Hospital in Baltimore, MD in September 1951. She lived no more than 31 years and left behind a husband, five children and an infinite supply of self-replicating cancer cells for research scientists to study in years to come.

HeLa cells with fluorescent nuclear stain (Wikimedia Commons)

Like many doctors, I first encountered HeLa cells in a research laboratory. Investigators use these famous cells to study how cancer cells grow, divide and respond to treatments. I learned about Mrs. Lacks, patient and mother, just the other day.

Skloot chronicles her short life in fascinating detail. She contrasts the long-lasting fate and productivity of her cells with that of the woman who bore them. She connects those, and her human descendants’ unfortunate financial disposition, to current controversies in bioethics.

In the years following their mother’s death, scientists repeatedly approached her husband and asked her young children for blood samples to check the genetic material, to see if their DNA matched that of cell batches, or clones, growing in research labs.

The issue is this: her husband had but a third-grade education. The children didn’t know what is a “cell,” “HLA-testing” or “clone.”

The family had essentially no idea what the doctors who’d taken, manipulated and cloned their mothers’ cells were talking about, Skloot recounts. They thought the doctors were testing them for cancer.

Years later, when they learned that their mother’s cells were bought, sold and used at research institutions throughout the world, they became angry and distrustful. The problem was essentially one of poor communication, she considered.

“Even a basic education in science would have helped,” Skloot said. “Patients, they want to be asked, and they want to be told what’s going on.”

Well said!

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