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Boston-Based Partners In Health Leaps Into Ebola Crisis

Members of Partners in Health work with representatives from Liberia and Sierra Leone via conference call to help combat the Ebola outbreak. (Jesse Costa/WBUR)

Members of Partners in Health work with representatives from Liberia and Sierra Leone via conference call to help combat the Ebola outbreak. (Jesse Costa/WBUR)

An advance team from Boston-based Partners In Health heads for Ebola-stricken Liberia Monday. Four doctors, including co-founder Paul Farmer, and two operations staff will lay the groundwork for an ambitious two- to three-year project that will require well over 100 volunteer doctors, nurses, lab techs and public health workers. The budget for just the first year is $35 million.

“We are at a dangerous moment with Ebola,” said Farmer as he prepared for the trip. “Even though this is a huge jump for PIH, I am confident we will succeed.”

PIH will work with two established groups, Last Mile Health in Liberia and Wellbody Alliance in Sierra Leone, to strengthen existing public health clinics and train several hundred new community health workers. In addition, PIH will open two 50-bed Ebola treatment centers in rural areas of each country.

The plan began to take shape last week, as the World Health Organization reported a near doubling of Ebola cases in Liberia and an estimate from Columbia University projects 30,000 cases by mid-October if conditions in the country deteriorate.

“There’s more doctors on a single floor of the Brigham than in the entire country of Liberia.”
– PIH's Paul Farmer

In the colorful offices of PIH, decorated with art from countries where the group works, some staffers are flashing back to 2010 and the weeks following Haiti’s earthquake. Ebola is creating another humanitarian crisis, one that is unfolding right before their eyes.

The call for volunteers went up on PIH’s website five days ago. More than 100 people responded within 24 hours, but it will take some time to determine if the skills of applicants fit the needs of these rural Ebola treatment and isolation units. PIH is trying to screen potential recruits quickly. It plans to send a first round to a training run by the Centers for Disease Control next week and open the centers by mid-October or early November.

“To do this right, we will depend on people who are willing to fight against this terrible crisis,” said Joia Mukherjee, chief medical officer at PIH. “The reason we will need a lot of non-Liberians, non-Sierra Leoneans — these countries simply do not have enough doctors and nurses.”

“There’s more doctors on a single floor of the Brigham than in the entire country of Liberia,” added Farmer, who is also chief of the Division of Global Health Equity at Brigham and Women’s Hospital.

He hopes to tap the medical wealth of Boston for the Ebola project, but the PIH board has demanded that a plan to treat and evacuate sick volunteers is in place before the operation begins. Farmer and Mukherjee are talking to the U.S. Department of Defense and other possible partners about transportation and care options.

A fourth doctor in Sierra Leone died Saturday, bringing the total number of health care worker deaths in Liberia, Sierra Leone and Guinea from Ebola to 150. Continue reading

From Pimples To Desire, What Might Happen When You Ditch The Pill

(Becca Schmidt/Flickr via Compfight)

(Becca Schmidt/Flickr via Compfight)

By Veronica Thomas
Guest Contributor

So you’re thinking about going off the pill. Maybe you’ve been feeling depressed, getting headaches, or keep forgetting to pop the tiny tablet. Perhaps you’ve been experiencing some really strange stuff that didn’t happen before you started the pill—like inflamed, bleeding gums or cringing at another person’s touch.

Both personal anecdotes and research studies have linked these and other side effects, such as breast tenderness and nausea, to the pill. (One study suggested it might even make you pick the “wrong” partner by altering your chemical attraction to a man’s scent.)

Most randomized control trials haven’t actually found any real difference in the frequency of side effects among women taking the pill versus those taking a placebo.

“It’s an interesting phenomenon,” says Dr. Alisa Goldberg, director of clinical research and training at the Planned Parenthood League of Massachusetts. “Clearly some women are sensitive to the pill and experience these things, but when you try to study it scientifically on a population basis, there’s really no difference.”

Still, while four out of five American women have used the pill at some point, 30 percent have discontinued its use due to dissatisfaction—most commonly because of its side effects. The latest federal statistics on contraception use are due this fall, and experts expect trends from recent years to continue: IUD use will continue to rise, while pill use seems to have plateaued.

I tried five different formulations of the pill, but never managed to escape all the annoying symptoms.

The issues a woman experiences—or whether she has any at all—vary greatly based on the specific dosage of hormones and the unique individual swallowing them every day. Personally, along with bloating and mood swings, I got migraines with an aura, or what felt like a laser light show in my left eyeball. Twice I had to retreat to my office’s “Pump and Pray Room”—reserved for new mothers and religious employees—to lie down and recover. (What I did not know at the time was that, because of this symptom, I should not have been on an estrogen-containing pill in the first place. Women with aura migraines, along with other conditions that put them at risk for strokes, blood clots, heart disease or some cancers, should not take combination pills.)

Finally, I gave up on the pill—only to be blindsided by a whole new challenge: the unexpected side effects of going off the pill. To help others avoid similar unpleasant surprises, I spoke with three experts about what to expect when you ditch the pill for another birth control method.

Of course, just as each woman has a unique reaction to the pill, she’ll also have a unique reaction to going off. According to the feminist women’s health organization Our Bodies, Ourselves, there is “enormous variability in any individual’s response to her own hormones or any synthetic hormones she takes.” One woman’s skin may break out in pimples, while another’s clears up completely.

With this disclaimer in mind, here are eight possibly unexpected changes you might experience when you cancel your monthly refill of that crinkly foil packet:

1. Most of the side effects should disappear in a few days.

First off, while many women decide to have their period before pitching the pack, it’s safe to stop taking the pill at any point. However, you should stop immediately if experiencing any serious side effects, like headaches or high blood pressure, says Dr. Jennifer Moore Kickham, the medical director of a Massachusetts General Hospital outpatient gynecology clinic. Continue reading

Hidden Price Of That Succulent Lobster: Health Woes Of Stoic Lobstermen

Longtime Maine lobsterman Jon Rogers (Jesse Costa/WBUR)

Longtime Maine lobsterman Jon Rogers (Jesse Costa/WBUR)

By Richard Knox

Mainer Jon Rogers started lobstering 47 years ago at the age of 10, when he’d go out on his grandfather’s boat.

Ask him about his health and he says, “No worse than anyone else who uses his body in his work. My hips are sore, my knees are sore, my shoulders are sore, my back is sore. I get up every day and it takes me awhile to get going. I hurt every day.”

But Rogers, who lives on a skinny, south-pointing finger of land in Casco Bay called Orr’s Island, doesn’t go to the doctor much. “I never really complained about too much unless I was really hurting,” he says.

“I’d schedule a doctor’s appointment with all the intentions of going,” Rogers says. “But if there was an opportunity to haul traps for a few days, I’d set aside the doctor’s appointment and go haul traps.” This summer he’s running 800 traps, which means his days starts around 5:30 a.m.

Rogers appears to be pretty typical of Maine’s 5,000 lobstermen, and of all 9,000 people who work in the state’s fishing industry.

“They work really hard and have a lot of chronic diseases,” says Miranda Jo Rogers, Jon’s daughter. “These people have a stoic mentality — they don’t seek health [care] until they really need it. So there are no really positive role models on how to be proactive and keep healthy.”

Lobsterman Jon Rogers with med-student daughter Meredith Jo Rogers, who is studying the health of lobster harvesters. (Courtesy)

Lobsterman Jon Rogers with med-student daughter Miranda Jo Rogers. (Courtesy)

Miranda Rogers aims to do something about that. Although she’s still a Tufts Medical School student, she’s taken on a project she expects will take her to graduation and beyond — maybe decades beyond.

“I am happily indebted to the community that raised me, and I wish to make a long-lasting difference in Maine,” she wrote recently to the state’s lobster harvesters, asking them to fill out a 24-page questionnaire on their health.

It will be the most complete look ever at the health of a difficult-to-reach population with special health care needs, low rates of health insurance and high skepticism of outsiders.

“Up and down the coast, the commercial fisherman is very talkative on his own turf, but it’s a very secretive bunch and not that trusting,” Jon Rogers says. Continue reading

Even In Mass., Hundreds Of Young Central American Refugees Seek Care

"Flor" (Richard Knox for WBUR)

“Flor” (Richard Knox for WBUR)

By Richard Knox

CHELSEA, Mass. — The young Honduran woman appeared at the Chelsea HealthCare Center last February, fearing she was pregnant.

“Flor” — a pseudonym to protect family members back in Honduras — had paid a “coyote” $8,000 to escort her and her 3-year-old daughter to the U.S.-Mexican border. But when they got to the border town of Nuevo Laredo, the coyote sold her to a gang that held her in a tiny room with seven other women.

They raped her, then told her to pay $17,000 or they’d sell her daughter’s organs and force her into sex slavery.

Up in Massachusetts, her mother and father scrambled to borrow the money and wire it to Nuevo Laredo. Her kidnappers released Flor and the little girl; she doesn’t know what happened to the other women.

Flor and her daughter are among hundreds of Central American immigrants who’ve made their way to the blue-collar town of Chelsea, Mass., over the past year.

They represent a quiet influx that began months before the phenomenon hit the headlines and protests began flaring in communities from Cape Cod to California.

They come to Chelsea because many of them have family there. Sixty-two percent of the town’s 35,000 residents are Latino, and many are from Honduras, El Salvador and Guatemala.

As we sit in a conference room at the Chelsea health center, the sun backlights the thick dark hair that frames Flor’s broad face as she tells me how and why she made the 2,300-mile trek from the Honduran capital of Tegucigalpa.

“The decision I made, why I came here, was to give a better future to my daughter,” Flor says in Spanish, silent tears trickling down her cheeks. “In Honduras, it is very difficult. The gangs, they’re killing a lot of people. You have to give money month-to-month or they go to your house and they kill you.” Continue reading

Pop Awake At Night? Researchers Blame ‘Sleep Switch’ In Your Aging Brain

(eflon via Compflight)

(eflon via Compflight)

If you’re on the older side and find yourself popping hideously awake in the middle of the night or far-too-early morn, here’s your line for the next time it happens: “Oh, that darned ventrolateral preoptic nucleus of mine! How I miss my old galanin!”

Researchers have just reported in the journal Brain that they’ve found a group of neurons — in the aforementioned nucleus – that function as a kind of “sleep switch,” and whose degeneration over the years is looking very much like the cause of age-related sleep loss. It’s also looking pivotal in the insomnia that often causes nocturnal wandering in people with Alzheimer’s disease.

“This is the first time that anyone has ever been able to show in humans that there is a distinct group of nerve cells in the brain that’s critical for allowing you to sleep,” said the paper’s senior author, Dr. Clifford Saper, chair of neurology at Beth Israel Deaconess Medical Center and professor of neurology at Harvard Medical School.

You may well be wondering exhaustedly how soon this insight — based on the post-mortem analysis of 45 human brains — will lead to better sleeping pills for older folks. I asked Dr. Saper that, too. No promises with timeframes at this point, but he does see the prospect for better-targeted sleeping pills for seniors, with fewer side effects like Ambien’s balance-related problems.

Our conversation, lightly edited:

Can this group of neurons actually explain the lion’s share of sleep problems that older people and people with Alzheimer’s disease have?

It really can. Let me give you a little background. We discovered this cell group in the brains of rats in 1996. We found that there’s a group of of nerve cells in a part of the brain called the hypothalamus that fire when animals are asleep. And we later found that if you eliminate those nerve cells, that animals lose up to 50 percent of all their sleep time, and the remaining sleep is fragmented. They can’t sleep for long bouts at a time; they keep waking up all the time.

At that time, we weren’t sure whether this would be the same in other species. So we looked at the brains of half a dozen other species — of mice and cats and monkeys — and we found that all of them have this cell group and that the cells were active during sleep in all of them. In every species we looked at, this same cell group had a particular neurotransmitter in it, called galanin.

I’ve never heard of that neurotransmitter before… Continue reading

How Transgender People Are Changing Their Voices

Lorelei Erisis, a transgender woman, tries out the Eva app in her Ayer home. (Martha Bebinger/WBUR)

Lorelei Erisis, a transgender woman, tries out the Eva app in her Ayer home. (Martha Bebinger/WBUR)

Lorelei Erisis taps the screen of a borrowed iPhone. The key of A, with kazoo-like resonance, fills her living room in Ayer, Mass.

Erisis taps another button labeled “start,” takes a deep breath, and sings the word “he,” trying to match the tone.

A number, 75 percent, pops onto the screen.

“My pitch was too low,” Erisis says. “Oh well. Let me try again.”

Erisis, a transgender woman, is trying out Eva, a mobile phone app that may be the first of its kind. Transgender men and women who want to raise or lower the pitch of their voice can go through a series of breathing and pitch exercises designed to help with what can be the most difficult characteristic to change — their voice.

“What I often hear is, ‘I pass as a woman until I open my mouth,’ ” says Kathe Perez, a speech language pathologist who designed the Eva app. Continue reading

Childbirth Complications: Some Hospitals Have 5 Times More, But Which Ones?

(pumicehead/Flickr)

(pumicehead/Flickr)

By Richard Knox

The risk of a major complication of childbirth can be up to five times higher at one hospital versus another, a new study finds. But there’s no way expectant mothers can tell the high-risk hospitals from the low — at least, not yet.

A study in this month’s Health Affairs is the first ever to examine hospitals’ childbirth complication rates on a national basis. Authors looked at a representative sample of more than 750,000 deliveries that took place in 2010 at hospitals large and small, urban and rural, including both teaching and community institutions.

Major complications include hemorrhaging, infections, vaginal lacerations and blood clots. Unlike major complications from, say, cardiac surgery, these obstetrical glitches are not generally life-threatening.

On the other hand, as Dr. Laurent Glance, the study’s lead author, tells CommonHealth: “The vast majority of women of childbearing age are fairly healthy people. They can reasonably expect to have a baby without any complications.”

The study found that for women delivering vaginally, the risk of a major complication can be more than double at a “low-performing” hospital (23 percent) than a “high-performing” institution (10 percent).

When it comes to cesarean deliveries, the disparities are even greater — 21 percent at a low-performing hospital versus a little over 4 percent at a high-performing obstetrical unit.

The study doesn’t provide Massachusetts-specific complication rates, but the researchers found no significant differences between Northeast hospitals and other regions. “It’s reasonable to assume there is a similar amount of variation [among Massachusetts hospitals], but we can’t say for sure,” Glance says.

If you think of the results in a big-picture way, it means that among the roughly 4 million American births a year, hundreds of thousands of women could avoid childbirth complications if somehow low-performing hospitals could raise their outcomes to those of their betters. Extrapolating from the new study, about 520,000 new mothers suffer a major complication.

The wide disparities in childbirth complications care are especially striking when you consider how big a slice obstetrics represents of the total health care pie. Continue reading

Brain Scientists Learn To Alter And Even Erase Memories

This optogenetic device uses light to activate specific brain cells. (Courtesy McGovern Institute for Brain Research at MIT)

This optogenetic device uses light to activate specific brain cells. (Courtesy McGovern Institute for Brain Research at MIT)

For 32 years, Leslie Ridlon worked in the military. For most of her career she was in army intelligence. Her job was to watch live video of fatal attacks to make sure the missions were successful.

“I had to memorize the details, and I have not got it out of my head, it stays there, the things I saw,” she says. “The beheading — I saw someone who got their head cut off — I can still see that.”

Leslie Ridlon retired from the military eight years ago, but she finds she cannot work because she suffers from severe PTSD. (Courtesy)

Leslie Ridlon retired from the military last year, but she finds she cannot work because she suffers from severe PTSD. (Courtesy)

Ridlon is now 49 and retired from the military last year, but she finds she cannot work because she suffers from severe post traumatic stress disorder. She has tried conventional therapy for PTSD, in which a patient is exposed repeatedly to a traumatic memory in a safe environment. The goal is to modify the disturbing memory. But she says that type of therapy doesn’t work for her.

“They tried to get me to remember things,” she says. “I had a soldier who died, got blown up by a mortar — he was torn into pieces. So they wanted me to bring that back. I needed to stop that. It was destroying me.”

She has concluded that some memories will never leave her. “Everything I could get rid of as far as memory I think I’ve already done it,” she says. “I think the deep ones that you suffer from, I don’t think anyone can take them away. I don’t believe anyone can. I think the ones I have now, they’re going to just stay there. I’m just going to have to manage them.”

But what if these traumatic memories could be altered or even erased permanently? Researchers say they are beginning to be able to do that — not just in animals, but in people as well.

Not long ago, scientists thought of memory as something inflexible, akin to a videotape of an event that could be recalled by hitting rewind and then play. But in recent decades, new technology has helped change the way we understand how memory works — and what we can do with it. Scientists can now manipulate memory in ways they hope will eventually lead to treatments for disorders ranging from depression to post-traumatic stress to Alzheimer’s disease.

“We now understand there are points in time when we can change memory, where we can create windows of opportunity that allows us to alter memories, and even erase specific memories,” says Marijn Kroes, a neuroscientist at New York University.
Continue reading

Inspired By Family Illness, Philanthropist Gives $650 Million For Psychiatric Research

The Broad Institute of Harvard and MIT  summer student Lydia Emerson and aesearch associate Aldo Amaya. (Courtesy/Kelly Davidson Photography)

Researchers at the Broad Institute plan to use Ted Stanley’s money to catalog all the genetic variations that contribute to severe psychiatric disorders. (Courtesy/Kelly Davidson Photography)

In the largest-ever donation to psychiatric research, Connecticut businessman Ted Stanley is giving $650 million to the Eli and Edythe Broad Institute of MIT and Harvard. The goal — to find and treat the genetic underpinnings of mental illnesses — was inspired by a family experience.

Ted Stanley made his fortune in the collectibles business. He founded The Danbury Mint, a company (later MBI, Inc.) whose first product was a series of medals commemorating the biggest scientific achievement of its time: the moon landing in 1969. While his business grew, his son Jonathan Stanley grew up as a normal Connecticut kid. Until, at age 19, Jonathan came down with bipolar disorder with psychosis, which got worse over the next three years.

“We’ll call it the epiphany from my dad’s standpoint at least,” Jonathan Stanley remembered of the turning point in his illness. “I went three days straight running through the streets of New York, no food, no water, no money, running from secret agents. And not surprisingly, after I stripped naked in a deli, ended up in a psychiatric facility.”

Jonathan was a college junior at the time.

“My dad came to visit, and he got to see his beloved son in a straitjacket,” Jonathan Stanley said.

The Stanleys were lucky. Jonathan responded well to the lithium, then a newly-approved drug. He went on to graduate from college and law school, too. Yet along the way, his father had met other fathers whose sons did not respond to treatment. He met other families who had to keep living with uncontrolled mental illness.

Ted Stanley said that gave him a focus for his philanthropy.

There was something out there that our son could take, and it made the problem go away,” he said. “And I’d like to see that happen for a lot of other people. And that’s why I’m doing what I’m doing.”

Continue reading

Medical Marijuana 101: What’s In Your Drug?

Jack Boyle reaches across the marble island in his kitchen for a small blue glass bottle with a black rubber cap. He holds it to the light, shaking the liquid, a marijuana concentrate.

“The person who made this didn’t make it properly,” Boyle says.

Boyle’s wife Susan Lucas uses the marijuana concentrate, or tincture, to prevent epileptic seizures. The first batch helped, so Boyle went back for more.

But then, “Sue started seeing her symptoms coming back,” he says. “We immediately took [the new batch] to the lab, had it tested. It didn’t have the CBD in it.”

The second batch, it seems, wasn’t heated enough to activate CBD, one of the compounds in marijuana that supporters say helps with muscle spasms and seizures.

Now Boyle is learning how to make a perfect concentrate on his own, in his kitchen in Stow. He bought a Crock-pot and found a recipe for marijuana tinctures online.

“I’ll make a batch and have Michael Kahn test it again, and if [it] matches up to at least as strong as the first batch then we’re good to go for six months to a year,” Boyle says. “It’s my wife, I just want to do the best I can.”

Michael Kahn is an analytical chemist and president of Massachusetts Cannabis Research, or MCR Labs, in Framingham. It’s the first marijuana testing lab to open in Massachusetts.

“We provide quality control,” Kahn says.

With all the attention to dispensaries that will grow and sell marijuana for medical use, the question of who will test the drug has been largely overlooked. The state Department of Public Health (DPH) is expected to issue testing protocols soon, but they may be a work in progress — at least for the first few years — as this industry takes shape across the country.
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