Book Review: The Immortal Life of Henrietta Lacks (Part 1)

Not long after I moved to Washington, DC in 2004 to begin a post-residency fellowship in family medicine, I volunteered to lead a discussion at my new church about HIV/AIDS. The District has the highest prevalence of HIV infections in the U.S.: at least 3% of all residents over age 12 years were infected in 2009. The group that suffers the most is Black men, who have a prevalence of 6.5%, or slightly less than 1 in 15 men. Given these grim statistics, and the fact that my church's congregation is predominantly Black, I hoped that I might be able to make a difference by communicating the facts about this deadly but preventable illness.

Instead, I found myself almost immediately on the defensive. A man asked me where the HIV virus had originated. It was beside the point, I said, but most experts thought that the first infections had occurred in West Africa in the late 1970s. "Why does it have to be Africa?" demanded the man. "Everybody wants to blame the Africans. I heard that this plague was created by white scientists to kill off all the Black people." I ended up spending most of my talk trying to convince this man that HIV is in fact an equal-opportunity disease that targets no particular racial or ethnic group. But I wasn't sure that he had been convinced.

Frustrating as that experience was, it was hard to blame him for believing that HIV was the result of a racist plot. Only a generation before, the infamous Tuskeegee Syphilis experiment had ended. From 1932 to 1972, the U.S. Public Health Service studied 399 Black men with untreated syphilis in order to learn about the natural history of the disease. Even when penicillin became widely available, the scientists declined to offer the cure to the subjects, and even prevented the U.S. Army from providing it to men who were drafted during World War II and tested positive for syphilis. The scientists never told the men (illiterate sharecroppers who were grateful to be receiving any medical attention at all) the true purpose of the experiment, resorting to deceptions such as calling diagnostic lumbar punctures "Special Free Treatment." Before the study ended, 128 men had died of syphilis or its complications, and 19 of their children were born with congenital syphilis, which causes blindness, deafness, and facial deformities.

In The Immortal Life of Henrietta Lacks, science journalist Rebecca Skloot explores another unsavory chapter in the history of American medical science. In the early 1950s, Henrietta Lacks, a poor Black tobacco farmer from southern Virginia, visited the Johns Hopkins University Hospital for painful symptoms that turned out to be from an aggressive, and ultimately fatal, cancer of the cervix. (Although the Pap smear, a screening test for early cervical cancer, was introduced in 1943, it had not yet become part of routine medical care - which Henrietta didn't have access to anyway.) Before Henrietta's death, her gynecologist sent a sample of the tumor to his colleague George Gey, a scientist who was trying to grow large quantities of cells for use in laboratory experiments. Unlike the cells Gey had previously collected, Henrietta's cells never stopped growing and dividing - they became the first "immortal" human cell line. Over the past 60 years, the HeLa cell line, as it came to be called, "were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the effects of the atom bomb; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions."

A week ago, I talked to Rebecca Skloot during a reading at the East Columbia Library. In the second part of this post (to come next week), I will go into more detail about this remarkable book, which seamlessly interweaves three distinct stories: that of Henrietta Lacks, her descendants (particularly her daughter, Deborah), and the amazing scientific discoveries that would not have been possible without HeLa cells.

Health care reform as spectator sport

Since I am a federal employee as well as an active member of a physicians' organization that stands to gain or lose a great deal from the outcome of the U.S. health reform debate, I plan to refrain from commenting in this blog on tomorrow's televised bipartisan healthcare summit. However, I would like to share a serious excerpt from Matt Miller's otherwise tongue-in-cheek editorial (which I recommend reading in full) titled "Going for Health Care Gold: Who's Got the Better Game Plan?" in today's Washington Post:

The uninsured may seem invisible, but today their ranks are equal to the combined populations of Oregon, Oklahoma, Connecticut, Kentucky, Iowa, Mississippi, Kansas, Arkansas, Utah, Nevada, New Mexico, West Virginia, Nebraska, Idaho, Maine, New Hampshire, Hawaii, Rhode Island, Montana, Delaware, North Dakota, South Dakota, Alaska, Vermont and Wyoming. Would America turn its back on the citizens of these 25 states if every one of them lacked basic health coverage?

Does patient-centered health care mean never saying "no"?

Many commentators on U.S. health care, including me, have written that our existing models of care are far from patient-centered. In a Health Affairs piece written last May, pediatrician and Institute for Healthcare Improvement president Donald Berwick, took this one step further by arguing that instead of revolving around the needs and wants of patients, health systems are generally designed to meet the needs of clinicians. He relates an episode during which a close friend who was having chest pain requested that he accompany her to the cardiac catheterization lab for emotional support and to help explain the procedure's results afterwards. The nurse and cardiologist both rejected his friend's request, giving no explanation other than "it's just not possible." (And I remember, with dismay, hearing these exact words from a physician when I wanted to accompany my newborn daughter to the hospital nursery for her first bath.)

After tracing the recent history of "patient-centeredness" as an aim of various groups devoted to improving health care quality, Berwick proposes what he calls an "extremist" definition of patient-centered care:

The experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one's person, circumstances, and relationships in health care.

To me, this definition sounds hardly revolutionary, and more like common sense. The sticking point for most clinicians, of course, is "without exception." Does this mean that clinicians should be required to fulfill patients' all-too-common requests for tests and procedures that have inconclusive clinical benefit or are likely to lead to harm? Well, in many cases, such as antibiotics for colds or imaging for acute low back pain, most of us already do, despite knowledge of potential adverse consequences. One might assert that these seemingly irrational requests occur because the health professional hasn't done enough to explain the risks and benefits of various options, or more importantly, understand what those risks and benefits mean from the patient's perspective.

This topic leads me a study about getting to "no" published in today's Archives of Internal Medicine, in which "standardized patients" (trained actors posing as patients) visited the offices of internists and family physicians, and, after complaining of vague symptoms of fatigue, requested a specific medication for depression that they said they had learned about in an advertisement. In the majority of these encounters (111 out of 199), doctors simply fulfilled the request, even though the information that the actors gave clearly did not meet criteria for the diagnosis of depression. Of the 88 who did not, 31 either gave no reason for saying no or deflected the request by ordering (unnecessary) tests or prescribing a sleep aid. In the remaining 53 encounters, the doctor attempted to further explore the content of the request or suggested a referral to a mental health counselor to accomplish the same end.

Although the study's authors did not explicitly endorse a particular approach to saying "no," it seems to me that the last one, which one might call the "patient-centered" strategy, is the most likely to benefit the physician-patient relationship and improve health care in the long run. I'm not saying that this negotiation is easy, and it certainly isn't the sort of thing that is routinely taught in medical school or residency. It's only what primary care physicians do, day in and day out - and like many other aspects of the current practice model, we need to do it better.

Are obesity and smoking contagious?

The Framingham Heart Study is perhaps the most famous long-term medical study. As every medical student learns, starting in 1948, the lifestyle habits of thousands of residents of Framingham, Masschusetts were followed to determine important risk factors for cardiovascular disease. It is because of this study that your physician can, with a few keystrokes, predict with great accuracy your risk of having a heart attack within the next 10 years and what you can do to reduce that risk. I've found the "Framingham calculator" to be a terrific educational tool in my practice, especially to illustrate the typically underestimated heart benefits of quitting smoking versus taking costly drugs for high cholesterol or high blood pressure.

In recent years, researchers have begun mining data from the Framingham study for other purposes. Last September, a New York Times magazine article described the work of Harvard physician Nicholas Christakis to test the theory that health-related behaviors, such as eating, exercise, and smoking, could be "contagious" - that is, could spread in a fashion similar to the way an infectious disease spreads. In 2007, Christakis and his collaborators published a paper in the New England Journal of Medicine that gave new meaning to the term "obesity epidemic": they found that Framingham Heart Study participants who had siblings, spouses, or friends become obese were at much greater risk of becoming obese themselves, an effect that was independent of geography. A year later, Christakis's team published another paper that showed the same phenomenon in smoking cessation. Your friends quit, your spouse quits, your brother or sister quits, and chances are good that you will follow their lead.

Doubtless most family physicians won't find these conclusions to be earth-shaking; since they care for all members of a family and are often tightly connected to the community in which they practice, FPs may have long suspected that the one of the keys to motivating patients to lose weight and stop smoking is to convince their family and friends to do the same. The same goes for a recent story in USA Today about pediatricians (who are only trained to care for patients age 18 and younger) belatedly recognizing the profound influence that parental health has on the health of infants and children. Reporter Liz Szabo wrote:

A growing number of pediatricians are now calling on their colleagues to address parental medical needs — such as depression, smoking cessation and vaccinations — that directly affect a baby's health.

I'm glad to hear that pediatricians have started to figure this out, but to family physicians, the benefits of treating parents and caregivers should be second nature, rather than front-page news. Unhealthy behaviors may be contagious, but so are healthy ones. Spread the word!

Guest Blog: Reflections From a Senior Citizen

Dorothy Kligerman is ninety-five years old, widowed, with three married children, four grandchildren and two great-grandchildren. Her first published work appeared in February, 1931, in The Record Book of her graduating class at Simon Gratz High School in Philadelphia, PA. The next time her work appeared in print was not until the 1980s, while she was working as a reporter for the Mt. Airy Express. The paper folded at the end of that decade. Again there was a hiatus, until in 2006 she enrolled at TARP (Temple Association for Retired Persons), sponsored by Temple University, which offers many courses for senior citizens. She enrolled in the Poetry Workshop, led by the energetic and inspirational Peggy Walsh McKenna. The following poem first appeared in Pulse Magazine.

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REFLECTIONS OF A SENIOR CITIZEN

I used to talk of fun and games
Now I talk of aches and pains.
I used to paint the town bright red
Now at nine I am in bed.

I used to dream of lovers bold.
Now, if truth be told
The only men who interest me
Are those with a medical degree.

"Why," you ask, "have they such clout?"
Well - we have so much to talk about:
There's my arthritis and stenosis,
Hypertension, scoliosis.

In a cozy room, alone, we chat.
We never have a lover's spat.
So keep your handsome Romeos
I'll always take those medicos!

- Dorothy Kligerman

Getting health reform done: the Taiwanese experience

My parents were both born in Taiwan, and about every four years (most recently, last November), I travel there to visit relatives. Since I was a child, Taiwan always struck me as in the same league as the U.S. with respect to advanced technology - in fact, they had the newest handheld video games (and later, the Nintendo Wii) months before these games arrived in stores in the States. But it wasn't until recently that I learned from a New York Times blog that Taiwan made the transition to unversal health care insurance in 1995, not long after the Clinton health care plan failed in the U.S. In a single year, Taiwan went from insuring only 55% of its population to 95%, and today the figure is close to 99%. (By comparison, U.S. Census data suggest that about 85% of the U.S. population has health insurance at any point in time, a figure that fluctuates as people lose their jobs and become poor enough to become eligible for state Medicaid coverage.)

How did Taiwan arrive at their health reform plan? After appointing several prominent domestic experts to a special task force that went nowhere due to differing views on how the new system should work, the government invited an American economic professor from the Harvard School of Public Health to break the impasse. As Dr. William Hsiao stated in an interview for the Times blog, "It turned out to be a big advantage that I'm not Taiwanese and had no aspirations of getting a job in Taiwan. At the end of the day, our recommendations and findings were perceived as more objective and free of self-interest."

The task force recommended that Taiwan adopt a single-payer model, analogous to the Canadian national health system. Highlights of the plan that was implemented include coverage for traditional Chinese medicine ("We tried to design a benefit package that would give people what they value," explained Hsiao), prevention and primary care, home health care, and a single, uniform electronic medical record system. With low co-payments and low administrative costs, the share of Taiwan's gross domestic product devoted to health care is about 6 percent, compared to 17.3 percent of GDP in the U.S. in 2009.

While it's hard to escape the irony of Taiwan inviting an expert from the U.S. - a country that has, after all, failed several times since the 1930s to enact comprehensive health reforms - to tell them what to do, the Taiwanese example is instructive as President Obama's bipartisan "health care summit" approaches. Perhaps our Congress should invite a foreign health policy expert without a stake in the outcome to make reform recommendations that are "objective and free of self-interest." Preferably from a country with more insurance coverage, better quality of care, lower infant mortality rates, and longer life expectancies than our own ... which, alas, leaves plenty of countries to choose from.

Book Review: Medicine in Translation

Like the rest of you who live anywhere in or near the Mid-Atlantic region of the U.S., I have been mostly trapped indoors for the past several days while record amounts of snow have been falling. I used some of the time to read a few really good health-related books and thought I would start sharing selected reviews of my favorites on this blog. In the interest of full disclosure, I receive no payments from the author, publisher, or bookseller (nor do I plan to accept any such payment in the future) for writing book reviews. The following review of Medicine in Translation: Journeys With My Patients was originally published on Amazon.com.

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Medicine in Translation will appeal equally to fans of Danielle Ofri's previous two books (Singular Intimacies: Becoming a Doctor at Bellevue and Incidental Findings: Lessons from My Patients in the Art of Medicine) as well as those who have never had the pleasure of reading her work before. Consisting of a perfectly blended combination of anecdotes from patients in her clinical practice at Bellevue Hospital Center in New York, her family's extended stay in Costa Rica (which included the delivery of her third child), and her struggle to achieve competency on the cello, this book is my personal favorite of Ofri's collection to date. As a family physician who trained at Bellevue during medical school, I especially appreciated her portrayal of the frustrations of balancing a demanding career in primary care with family responsibilities. One priceless moment in the book is a scene in which an apparently clueless male patient who has recently had numerous screening tests performed (and with whom she must communicate through a translator) doesn't tell her that he already had those tests (including a colonoscopy!), resulting in a lengthy end-of-day visit that makes Ofri late for day care and late to get home. Still fuming while reading The Runaway Bunny during her children's bedtime routine, she thinks: "Let the damn bunny make it on his own."

As much that scene resonated, don't let me mislead you into thinking that this book is primarily about an overworked doctor and mother feeling sorry for herself. While she misses the idyllic life in Costa Rica when she returns to Bellevue after a yearlong sabbatical, Ofri continues to find her work rewarding in ways that have little or nothing to do with medicine itself. This extraordinary book is about making continuous human connections across the barriers of language, culture, and place of origin. Frances Peabody famously said, "The secret of the care of the patient is in caring for the patient." Ofri takes this philosophy a step further in Medicine in Translation by illustrating how listening closely to her patients' stories and appreciating their perspectives can improve the health of all involved.

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P.S. The subject of my next review will be The Immortal Life of Henrietta Lacks by Rebecca Skloot.

Guest Blog: Johnny Doe

An emergency medical technician for 12 years, Yvonne Estrada currently works as an ambulance driver for the Los Angeles County Emergency Medical Services Authority. "I have always written poems, and my job naturally presents adventures and situations that need to be written about, stories that need to be told," she says. Ms. Estrada reads the following poem (which was first published in Pulse Magazine) and others at http://www.guerrillareads.com/ (she's No. 8).

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JOHNNY DOE

Policemen pose like plastic toy soldiers,
point rifle barrels in every direction,
ghetto bird's spotlight glints off helmets.
Ambulance allowed across yellow tape,
diesel engine grinds up the sharp grade.
In no moon you glow fish white belly up,
streetlamp casts mottled shadows,
your blood a preschool finger painting
smeared on a sidewalk.
I am ordered to shear off your slick, soaked
jeans, to smash your chest, beat your heart
for you. Your arms extend savior-like,
needles are pounded into veins,
translucent bags held skyward
like offerings to a life-giving deity,
clear liquid bleeds in, your blood pours out,
three bullet holes versus six-minute
trip to emergency room. How old are you?
I think about my son asleep at home.
I wonder if your mother's at work.
I breathe deep, drive fast,
make the siren a prayer
too loud for your God to ignore.

- Yvonne M. Estrada

Of gatekeepers and unbridled imaging technologies

When I was a third-year medical student on my Surgery rotation at Bellevue Hospital in New York City, more than a decade ago, the assignment I dreaded most - more than "scut work" such as drawing blood samples or removing stitches - was going to the Radiology department to present clinical cases to the attending physician for permission to use the hospital's one and only CT (computed tomography) scanner. I learned to put together meticulously reasoned arguments about why images created by this precious piece of equipment were absolutely necessary to obtain a diagnosis that couldn't be made with an examination, blood tests, or ordinary x-rays. The attending's job was to be a gatekeeper - to make sure that the costly scanner was utilized only for high-priority diagnostic dilemmas. More often than not, that meant tearing the unlucky medical student's case to shreds.

Fast forward five years. I'm working in a private primary care practice in Arlington, Virginia, and can order imaging tests simply by checking off blanks in a form and scribbling a general symptom such as "headaches" or "abdominal pain." A patient of one of my colleagues who is on maternity leave presents to the office with vague pelvic pain and becomes incensed when the soonest I can schedule her for an ultrasound at the local hospital is in two weeks. She takes my prescription to a different radiology center and is scanned the next day for what turns out to be a large but benign ovarian cyst. By the time the report is delivered to my office, she has already had surgery to remove the cyst and tells me that she doubts she'll ever visit my practice again. In a city when 24 hour imaging services are available for the right price (or insurance), a two week wait is apparently grounds for malpractice.

Fast forward to the present day. I rarely see patients, yet receive phone calls every few weeks at my non-clinical office from for-profit imaging companies letting me know that there are spots open on the schedule for their MRI machine, in case I happen to see a patient that day "with an indication" (read: any patient with a symptom that I can't completely explain). An editorial in the Annals of Internal Medicine complains that CT colonography ("virtual colonoscopy") has been held to an unfair standard as a screening test for colon cancer, even though it's significantly more expensive than other tests and exposes patients to large doses of radiation.

In Ontario, Canada, the average waiting time for a non-emergency CT scan is 42 days, and for an MRI, 107 days. Opponents of single-payer health systems cite these kinds of statistics as proof of the superiority of American health care. But there are downsides to the widespread availability of imaging services in the U.S., in addition to the high costs of maintaining the technology. In some situations, such as ultrasonography for asymptomatic carotid artery disease or MRI for low back pain, imaging can cause more harm than good, by leading to unnecessary surgical procedures. And the tests themselves aren't harmless, either - recent studies have estimated that the radiation from 72 million CT scans performed in 2007 has led to thousands of cancers that wouldn't otherwise have occured.

So maybe it's time to bring back the gatekeepers, albeit in less intimidating guises. Barring that, you or I could choose to move to Canada, where they wait longer to get CT scans, but spend half as much money on health care, live 3-5 years longer, and report better emotional, physical, and mental health than do Americans.