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Narrating Medicine: How Cultural Differences Challenge Doctors

By Dr. Marjorie S. Rosenthal
Guest Contributor

The pediatric resident was frustrated.

On the exam table was a 6-month-old baby — quite overweight. In fact, the child was heavier than an average 1-year-old. But his mother just laughed when the resident asked how she was feeding the baby.

When the resident and I looked at the medical record, we saw that for months residents had been discussing feeding with the mother. Telling her that she should stop formula feeding because her breast milk was more than sufficient. Telling her not to give solid foods because her breast milk was enough. And telling her that if she was going to give the baby formula or solid food, she should try to pay attention to when the baby’s cry means hunger and when it means a wet diaper or a need for attention.

Over one-third of adults and about 17 percent of children in the United States are obese. And since people who are obese have more high blood pressure, diabetes and heart disease than their peers, it’s not surprising that there are 11 million office visits per year for adults with obesity.

Yet according to a new CDC report, only 40 percent of these 11 million visits for obesity include a discussion of diet and exercise.

Dr. Marjorie Rosenthal (Courtesy)

Dr. Marjorie Rosenthal (Courtesy)

Many health care providers don’t want to talk to their patients about diet and exercise because they think the patients may feel judged. And sometimes doctors don’t talk about fitness and nutrition because they actually think talking won’t change anything. Which makes it safe to assume that office visits for obesity rarely include a discussion about the life experiences of the patients and the parents of patients. This suggests that a critical issue — and a key part of any treatment plan — is never addressed.

Parents’ medical history has always been an important aspect of a child’s medical care. But the central importance of all this has only recently emerged: New research has shown how life experiences affect brain development and hormone responses and how that affects parenting behavior and the health of the child in the next generation.

It’s hard enough to do this with families who speak English and come to the doctor’s appointment ready to talk about themselves. With this overweight 6-month-old, it was even harder: The resident was using a Swahili phone interpreter and the mother was a refugee.  Continue reading

A $1 Pill That Could Save Thousands Of Lives: Research Suggests Cheap Way To Avoid U.N.-Caused Cholera

(United Nations Photo/Flickr)

(United Nations Photo/Flickr)

By Richard Knox

Here’s a way to get a big bang for a buck:

If a few hundred United Nations peacekeeping troops had taken a $1 antibiotic pill five years ago before they were deployed to Haiti, it may well have prevented a cholera outbreak that has so far sickened 753,000 Haitians and killed more than 9,000.

That’s the takeaway of a new study by Yale University researchers in the journal PLoS.

The authors believe their evidence should prompt the U.N. to adopt a simple and incredibly cost-effective strategy: Make sure all the 150,000 peacekeepers it sends out into the world each year from cholera-afflicted countries get preventive doses of antibiotics before deployment.

It’s not the first time the U.N. has gotten that advice. It was first suggested by a panel of outside experts the agency appointed back in 2011 to investigate the Haitian epidemic. But so far the U.N. has rejected the panel’s recommendation on preventive antibiotics.

It’s not clear whether that will change. The U.N.’s chief medical officer, Dr. Jillian Farmer, said in an interview Friday that she welcomes the new study. But she noted it does not address “the biggest barrier to implementing the antibiotic recommendation” — a concern that what she calls “mass administration” of antibiotics would give rise to antibiotic-resistant strains of cholera.

“It may be we will be able to do this [administer pre-deployment antibiotics to U.N. peacekeepers],” Farmer said. “I don’t have a closed mind.”

The Yale researchers and others argue that the concern about generating resistant cholera strains is overblown because the antibiotics would be targeted — not administered massively. They further argue that the U.N. should sponsor research to answer that question, given the urgency of the question.

“When we have a case as extreme as Haiti showing the status quo doesn’t work, we should be working to build evidence for a solution that does, not using a lack of proven solutions as an excuse not to act,” said Adam Houston, who works with the Boston-based Institute for Justice and Democracy in Haiti.

The new study is the latest chapter in a tragic story that’s been unfolding since mid-October of 2010, when, researchers say, a single U.N. peacekeeper from Nepal most likely introduced cholera to Haiti, touching off the most explosive cholera epidemic in modern times. Before the outbreak. Haiti had been cholera-free for at least a century; thus, its citizens had no immunity to the disease.

“Based on DNA evidence, this outbreak was probably started by one or very few infected, asymptomatic individuals — I would guess one,” said Daniele Lantagne, a Tufts University environmental engineer who was one of four independent experts appointed by the U.N. in 2011 to investigate the outbreak.

Since none of the 454 Nepalese peacekeeping troops deployed to Haiti in late 2010 showed any symptoms of cholera, all of them would have had to take a prophylactic dose of antibiotic to prevent any one of them from starting the outbreak. That would have cost around $500 — a tiny price to pay to avoid a devastating epidemic that — absent the investment of billions of dollars in clean water and sanitation — will continue into Haiti’s indefinite future.

The new analysis finds that prophylactic antibiotics would have reduced the chances of the Haitian epidemic by 91 percent. When antibiotics are combined with cholera vaccination, the risk of an outbreak goes down by 98 percent.

The U.N. began requiring cholera vaccination of all its field personnel late last year. But the new study says vaccination by itself isn’t very effective; it reduces the risk of an outbreak by only 60 percent at best.

That’s because vaccination can prevent someone from falling ill from cholera, but it doesn’t prevent infection — so a vaccinated person can still carry the cholera bacterium and pass it on to others.

“Vaccination alone is not enough,” said Virginia Pitzer, who led the Yale research team. “Vaccination plus antibiotic prophylaxis would be best.”

“Antibiotics are far and away the most effective and the least expensive,” added epidemiologist Joseph Lewnard, the study’s first author. “It hits the problem from two angles. It not only prevents those exposed to cholera from experiencing an infection, but if they do get infected it shortens the duration of shedding the bacteria. So once they arrive [at their deployment destination] they would no longer have bacteria in their stools.” Continue reading

Opinion: Why The WHO Botched Ebola, And How Proposed Fixes Miss The Mark

A World Health Organization worker trains nurses on how to use Ebola protective gear in Freetown, Sierra Leone last year. (AP)

A World Health Organization worker trains nurses on how to use Ebola protective gear in Freetown, Sierra Leone last year. (AP)

In the latest Lancet, a report from an independent panel of experts lambastes the World Health Organization for its handling of the Ebola outbreak. The panel makes 10 recommendations to help get the WHO in better shape for the next global epidemic alert.

I wish I could tell you not to worry, that the WHO will heed these recommendations and handle its next epidemic much better, so that the outbreak will never get as widespread and disturbing as Ebola was last year.

But I did my PhD dissertation on how the WHO plans for and responds to health problems like infectious diseases that don’t respect borders, and my sad conclusion is: Not gonna happen.

I agree wholeheartedly with many of the new recommendations — like that the WHO should focus on supporting countries with technical advice, and create a dedicated center for outbreak response. But if the WHO carries out even one of the 10, it will be a miracle.

Why should you care? Well, it’s widely thought that the WHO botched the Ebola outbreak: It was late in releasing information, and was even called out by Doctors Without Borders for its lackadaisical response.

And why did it botch the response? Because it is not built to rapidly balance politics with medicine, which is exactly what’s required in an epidemic. It can’t be helpful doctor and tough enforcer at the same time.

The independent panel, launched by the Harvard Global Health Institute and the London School of Hygiene & Tropical Medicine, includes world health experts and former high-level WHO officials, but it seems to forget how the WHO works. The experts have made pie-in-the-sky recommendations that the WHO is unlikely and probably even unable to implement, making it more likely that it will repeat its mistakes.

I spent close to four years working on my dissertation, which had the riveting title “Exit, Voice and (Trojan) Loyalty: The World Health Organization and the Dynamics of International Disease Control.” Luckily for you, you don’t need to read it (not even my mom has, to be honest). There are just two quotes you need to understand pretty much everything about my dissertation and how the WHO responds to infectious disease risks.

Quote No. 1: “Our clients are our member states.”

A WHO official told me this during my first week researching in the archives. You might think the WHO works for the health of the people. Unfortunately, that’s a common misunderstanding. The WHO’s first priority is to the governments of its member states. Understanding that allows you to make sense of the WHO’s actions (or lack thereof) during an epidemic.

It also makes many of the recommendations from the panel impractical. The panel is basically asking the WHO to go rogue and bite the hands that feed it, criticize sensitive and capricious governments that, if threatened, will simply throw the WHO and all of its officials out of the country. Continue reading

Cancer Haves And Have-Nots: Care And Treatment In 2 Different Worlds

By Michael J. Misialek, M.D.
Guest Contributor

Imagine feeling a lump on your body, visiting a doctor, and then waiting seven months (if you’re lucky) to find out whether it is cancer.

This has been the reality for the vast majority of patients in two of the world’s most impoverished nations, Rwanda and Haiti — both emerging from different but unthinkably grim histories of structural violence.

But since 2012, more patients are getting the care that everyone deserves, no matter what country they live in. A medical partnership between several Boston-based hospitals has radically reduced turnaround time for cancer diagnosis, and shrunk the number of people who fall through the cracks.

It is difficult to quantify the exact numbers here, since record keeping in the past has been poor. One data point: In Rwanda, where these interventions are in place, far fewer patients are lost to follow-up after they’ve been treated compared to patients in other poor countries, according to Dr. Larry Shulman, senior vice president for medical affairs at Dana-Farber Cancer Institute, and leader of the medical partnership.

As a pathologist at of one of these partner institutions — Newton-Wellesley Hospital — I can’t help but think about the patient behind the slides under the microscope. Here’s one: Tushime, an 11-year-old Rwandan girl, who had a large tumor protruding from her jaw.

The tissue sample from Tushime’s tumor arrived in Boston in a suitcase carried by an employee of Partners in Health, the global nonprofit. Like all other specimens, hers was processed into a slide by the pathology department of Brigham and Women’s Hospital and read by Harvard faculty.

Tushime’s tumor turned out to be a rhabdomyosarcoma, a common childhood sarcoma. After 48 weeks of chemotherapy and surgery in Rwanda, she is now healthy and free of disease. Doctors there used standard chemotherapy for a cost of about $300 (which was covered by Partners in Health, Dana Farber and the Rwandan government). They relied on age-old, tried and true chemotherapy drugs; in comparison, the newer chemotherapy agents in the U.S. often cost several thousands of dollars.

Even though access to care has improved dramatically in the developing world there is so much work to be done. There are patients who still present with tumors at an advanced stage, many being neglected for months or even years because of barriers to care. There’s often a lack of access to facilities for both diagnosis and treatment, and funding for cancer care is limited. As a result, ordinary diagnoses become extraordinary.

This is an image of a less aggressive (low grade) breast cancer, something that is fairly common among patients in the U.S. You can see the well formed tubules and glands of cancer, but fewer tumor cells growing in a more organized fashion -- only about 30 percent of the image is tumor. (Courtesy of Michael J. Misialek)

This is an image of a less aggressive (low grade) breast cancer, something that is fairly common among patients in the U.S. You can see the well formed tubules and glands of cancer, but fewer tumor cells growing in a more organized fashion — only about 30 percent of the image is tumor. (Courtesy of Michael J. Misialek)

This is an image of an aggressive (high grade) breast cancer not uncommonly diagnosed among patients in countries where access to medical care is limited, such as Haiti. You can see a solid mass of cancer -- the photo is 100 percent tumor. (Courtesy of Michael J. Misialek)

This is an image of an aggressive (high grade) breast cancer not uncommonly diagnosed among patients in countries where access to medical care is limited, such as Haiti. You can see a solid mass of cancer — the photo is 100 percent tumor. (Courtesy of Michael J. Misialek)

Under my microscope, I’ve seen some of the most aggressive appearing tumors from patients in these countries. What are typically rare cancers here in the U.S., such as sarcomas or unusual variants of breast cancers, are all too common in developing nations. Continue reading

Dementia As A Global Public Health ‘Tidal Wave’

We often think of dementia as a private, intimate hell. A mother no longer recognizes her daughter’s voice. A father rages incoherently at a family dinner.

But it’s worth remembering the global scope of dementia; it’s a looming, worldwide public health disaster, a ‘tidal wave,” as the head of the World Health Organization recently put it, that’s growing worse each year.

This week, the World Health Organization held the first-ever ministerial conference calling for global action against dementia, saying, essentially, enough already, this is something we really need to deal with now.

The WHO’s Director General, Dr. Margaret Chan, offered some sobering perspective in her opening remarks and noted that there are three specific reasons to act now: “Dementia has a large human cost. Dementia has a large financial cost. Both of these costs are increasing.”

According to remarks distributed by the WHO, Chan spoke of dementia, including Alzheimer’s, in dire terms:

“The world has plans for dealing with a nuclear accident, cleaning up chemical spills, managing natural disasters, responding to an influenza pandemic, and combatting antimicrobial resistance. But we do not have a comprehensive and affordable plan for coping with the tidal wave of dementia that is coming our way.”

And the numbers are staggering:

–Dementia currently affects more than 47 million people worldwide, with more than 75 million people estimated to be living with dementia by 2030. The number is expected to triple by 2050.

–Dementia leads to increased long-term care costs for governments, communities, families and individuals, and to productivity loss for economies. The global cost of dementia care in 2010 was estimated to be U.S. $604 billion – 1.0% of global gross domestic product. By 2030, the cost of caring for people with dementia worldwide could be an estimated US $1.2 trillion or more, which could undermine social and economic development throughout the world.

–Nearly 60% of people with dementia live in low- and middle-income countries, and this proportion is expected to increase rapidly during the next decade, which may contribute to increasing inequalities between countries and populations.

Continue reading

Outbreak Deja Vu: Rumor, Conspiracies, Folklore Link Disease Narratives

A licensed clinician participates in a CDC training course in Alabama earlier this month for treating Ebola patients. (Brynn Anderson/AP)

A licensed clinician participates in a CDC training course in Alabama earlier this month for treating Ebola patients. (Brynn Anderson/AP)

By Jon D. Lee
Guest Contributor

Nearly five years ago, during the peak of the H1N1 — swine flu — pandemic, a joke appeared on the Internet based on the nursery rhyme “This Little Piggy.”

The joke (clearly for public health insiders) was intended to comment on the similarities between swine flu and avian flu, and it concluded this way:

And this little piggy went “cough, sneeze” and the whole world’s media went mad over the imminent destruction of the human race, and every journalist found out that they didn’t have to do too much work if they just did “Find ‘bird’, replace with ‘swine’” on all their saved articles from a year ago, er, all the way home.

The punch line makes an important point about the recycling of stories. But for all of its insight into this phenomenon, the joke doesn’t end up taking the lesson far enough.

Because it’s not just the media that recycles stories — it’s all of us.

In “An Epidemic of Rumors: How Stories Shape Our Perceptions of Disease,” I conducted an extensive study of the narratives — the rumors, legends, conspiracy theories, bits of gossip, etc. — that circulated during the H1N1, SARS and AIDS pandemics.

The results showed that all three pandemics were rife with rumors that, though created decades apart, had striking similarities. Every disease had a story claiming a government conspiracy or cover-up. Every disease had a list of surefire cures and treatments “they” don’t want you to know about. Every disease had false and inaccurate stories about where it had spread to and who was infected. Continue reading

Ebola Tipping Point? Dispelling Myths And, Possibly, Less Hysteria Over Virus

A World Health Organization worker trains nurses on how to use Ebola protective gear in Freetown, Sierra Leone. (AP)

A World Health Organization worker trains nurses on how to use Ebola protective gear in Freetown, Sierra Leone. (AP)

Has the national hysteria over Ebola peaked? Who knows. Maybe. There seem to be fewer front page headlines screaming about it; a new national poll finds most Americans are “positive” about the response by public health authorities; and today’s news is that more than 40 Dallas residents (all who had been in contact with the Liberian man who died of Ebola) were declared virus-free.

Still, education is the antidote to hysteria, so it’s worth reiterating some of the facts. Many of them can be found in this must-read commentary in the London Review of Books by Paul Farmer, the rock star Harvard infectious disease doctor and leading advocate for global health equity in the world’s most impoverished regions. Farmer, who is also a co-founder of the Boston non-profit Partners in Health, writes that despite some of the truly scary aspects of the virus, an Ebola diagnosis is not necessarily a death sentence:

The Ebola virus is terrifying because it infects most of those who care for the afflicted and kills most of those who fall ill: at least, that’s the received wisdom. But it isn’t clear that the received wisdom is right….

…the fact is that weak health systems, not unprecedented virulence or a previously unknown mode of transmission, are to blame for Ebola’s rapid spread. Weak health systems are also to blame for the high case-fatality rates in the current pandemic, which is caused by the Zaire strain of the virus. The obverse of this fact – and it is a fact – is the welcome news that the spread of the disease can be stopped by linking better infection control (to protect the uninfected) to improved clinical care (to save the afflicted). An Ebola diagnosis need not be a death sentence. Here’s my assertion as an infectious disease specialist: if patients are promptly diagnosed and receive aggressive supportive care – including fluid resuscitation, electrolyte replacement and blood products – the great majority, as many as 90 per cent, should survive.

And he adds this:

I’ve been asked more than once what the formula for effective action against Ebola might be. It’s often those reluctant to invest in a comprehensive model of prevention and care for the poor who ask for ready-made solutions. What’s the ‘model’ or the ‘minimum basic package’? What are the ‘metrics’ to evaluate ‘cost-effectiveness’? The desire for simple solutions and for proof of a high ‘return on investment’ will be encountered by anyone aiming to deliver comprehensive services (which will necessarily include both prevention and care, all too often pitted against each other) to the poor. Anyone whose metrics or proof are judged wanting is likely to receive a cool reception, even though the Ebola crisis should serve as an object lesson and rebuke to those who tolerate anaemic state funding of, or even cutbacks in, public health and healthcare delivery. Without staff, stuff, space and systems, nothing can be done.

If you want to become more educated on Ebola and find out what you can do to support the global effort, Partners In Health/Engage and Harvard are sponsoring an Ebola teach-in Wednesday night in Cambridge with a panel of practitioners and public health experts. Continue reading

The True Cost Of A Mother’s Death: Calculating The Toll On Children

A health worker interviews a client at a health care facility in Tharaka, Kenya. (Photo: Family Care International)

A health worker interviews a client at a health care facility in Tharaka, Kenya. (Photo: Family Care International)

By Emily Maistrellis
Guest contributor

Walif was only 16 and his younger sister, Nassim, just 11 when their mother died in childbirth in Butajira, Ethiopia.

Both Walif and Nassim had been promising students, especially Walif, who had hoped to score high on the national civil service exam after completing secondary school. But following the death of their mother, their father left them to go live with a second wife in the countryside. Walif dropped out of school to care for his younger siblings, as did Nassim and two other sisters, who had taken jobs as house girls in Addis Ababa and Saudi Arabia.

Nassim was married at 15, to a man for whom she bore no affection, so that she would no longer be an economic burden to the family. By the age of 17, she already had her first child. Seven years after his mother died, Walif was still caring for his younger siblings, piecing together odd jobs to pay for their food, although he could not afford the school fees.

In all, with one maternal death, four children’s lives were derailed, not just emotionally but economically.

More than 1,000 miles away, in the rural Nyanza province of Kenya, a woman in the prime of her life died while giving birth to her seventh child, leaving a void that her surviving husband struggled to fill. He juggled tending the family farm, maintaining his household, raising his children and keeping his languishing newborn son alive.

But he didn’t know how to feed his son, so he gave him cow’s milk mixed with water. At three months old, the baby was severely malnourished. A local health worker visited the father and showed him how to feed and care for the baby. That visit saved the baby’s life.

As these stories illustrate, the impact of a woman’s death in pregnancy or childbirth goes far beyond the loss of a woman in her prime, and can cause lasting damage to her children — consequences now documented in new research findings from two groups: Harvard’s FXB Center for Health and Human Rights, and a collaboration among Family Care International, the International Center for Research on Women and the KEMRI-CDC Research Collaboration.

The causes and high number of maternal deaths in Ethiopia, Malawi, Tanzania, South Africa, and Kenya — the five countries explored in the research — are well documented, but this is the first time research has catalogued the consequences of those deaths to children, families, and communities.

The studies found stark differences between the wellbeing of children whose mothers did and did not survive childbirth:

• Out of 59 maternal deaths, only 15 infants survived to two months, according to a study in Kenya.
• In Tanzania, researchers found that most newborn orphans weren’t breastfed. Fathers rarely provided emotional or financial support to their children following a maternal death, affecting their nutrition, health care, and education.
• Across the settings studied, children were called upon to help fill a mother’s role within the household following her death, which often led to their dropping out of school to take on difficult farm and household tasks beyond their age and abilities.

How to use these new research findings to advocate for greater international investment in women’s health?

Continue reading

Opinion: Why America’s Ebola Fears Are Dangerously Misplaced

Cpl. Zachary Wicker demonstrated the use of a germ-protective gear in Fort Bliss, Texas on Tuesday. (Juan Carlos Llorca/AP)

Cpl. Zachary Wicker demonstrated the use of a germ-protective gear in Fort Bliss, Texas on Tuesday. (Juan Carlos Llorca/AP)

By Richard Knox

At the memorial service last weekend for the only person to have died of Ebola on American soil, the Liberian clergyman who eulogized his countryman Thomas Eric Duncan posed a question we all should be thinking hard about right now.

“Where did Ebola come from to destroy people — to set behind people who were already behind?” Methodist Bishop Arthur F. Kulah wondered.

Here’s the reality: Until the world (and especially the United States of America) refocus on the “people who were already behind” in this battle of virus-versus-humanity, no one can rest easy.

Ebola is an animal virus that has sporadically caused local human outbreaks in Africa for at least 38 years. But now it has crossed into people who live in densely populated African nations with barely functioning health systems and daily jet connections to the rest of the planet.

“It’s like you’re in your room and the house is on fire, and your approach is to put wet towels under the door.”

– World Bank chief Jim Yong Kim

This is entirely predictable, as scientists who watch emerging diseases have long known. They just didn’t know which virus would be the next to terrorize the world. (SARS and HIV showed how it can happen, remember?)

Those of us who, like me, report on global public health have a sense of inevitability as we watch the Ebola crisis unfold. We always knew it would mostly affect, as Bishop Kulah so aptly puts it, “people who were already behind.”

And we knew the people least affected by this scourge — privileged denizens of wealthier countries — would overreact out of misplaced fear for themselves, rather than a reasoned and compassionate understanding about what needs to be done.

So we see the freaked-out, wall-to-wall, feedback-loop media coverage we’re experiencing now. Schools closing down in Ohio for completely unnecessary disinfection. Recriminations against hapless health workers who suddenly find themselves dealing with an exotic new threat. Continue reading

When Muscular Dystrophy Is Personal — And Global

Chris Chege (courtesy Romana Vysatova)

Chris Chege (courtesy Romana Vysatova)

By Fred Thys
Guest Contributor

Every once in a while, I’m grateful I live in such a medically-minded town, with many deep thinkers trying to figure out treatments and cures for some very tough diseases.

I felt this way over the summer, at a conference in Boston on Facioscapulohumeral Muscular Dystrophy, a genetic disorder that affects 1 in 8,333 people and has no treatment. I did not attend the meeting due to some theoretical interest in the topic; for me, it’s personal.

My mother and grandmother suffered from the condition, and so does my brother. It causes gradual loss of muscle function, notably in the face, and in the muscles that mobilize the shoulder blades and the upper arm, but also in the legs.

My brother first developed symptoms when he was 15, and found that he could no longer run as fast as his high school soccer teammates. Since the age of 43, he has been confined to a wheelchair or scooter, unable to walk or stand.

But at the conference in August, I also realized that this illness with such a profound impact on my family, also has a global reach. Indeed, in regions like Africa, the condition is only just beginning to be acknowledged.

Enter: Chris Chege

I first saw Chege sitting on a tall stool at the back of the room with his wife. Their presence proved that the condition affects Africans, too, something that isn’t widely acknowledged. Chege and his wife had traveled to Boston from their home in Thika, in central Kenya, 30 miles Northeast of Nairobi.

An interview with Chege pointed to one possible reason that conference room was full, mainly, of white people: most people with the condition in Africa may not have been diagnosed with it yet.

But Chege said he sees others with FSHD in Kenya. He said he can tell.”By the way they walk,” he said. “I see them on national television when journalists go to their homes to interview them.” Continue reading