Only Human

Only Human

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Only Human is a show about health that we all can relate to. Because every body has a story.

Episodes

Please Spit in This Tube: An Election Experiment  

Every day another article comes out about how voters are stressed by this election. But we wanted to know: what is the election doing to our biology?

The American Psychological Association recently found that more than half of all Americans — 52 percent — say this year’s presidential election is a “somewhat” or “very significant” source of stress in their lives. The survey was self-reported, meaning respondents answered a few questions online and the APA took their self-assessments at face value. Anecdotally, those assessments probably ring true for many of us, but it turns out there’s a way to measure the physiological effects of election stress.  

Over the last few years, a group of neuroscientists and political scientists have pioneered a new field called biopolitics, the study of biology and political behavior. Professor Kevin Smith is a political scientist at the University of Nebraska-Lincoln and a co-author of the book, "Predisposed: Liberals, Conservatives, and the Biology of Political Differences.” He often collaborates with Dr. Jeffrey French, who runs a lab at the University of Nebraska-Omaha and studies cortisol, a hormone we release when we’re stressed.  

One of Smith and French’s recent studies looked at stress and voting. They wanted to know if cortisol levels influence whether people vote. The easiest way to test cortisol is through saliva, so they collected spit samples from a bunch of participants and got their official voting records for the past six elections.

The researchers found that people with higher cortisol levels vote less. And that finding correlates with another one of their studies, which found that people who voted absentee experienced less stress than people who went to the polls.

So we asked French and Smith to help us design an experiment of sorts. We’d use the presidential debates as a proxy for the election. Our team would go to debate watch parties and collect saliva samples from viewers to measure their cortisol levels. We’d also ask the participants to fill out a survey about themselves: their party affiliation, age and self-reported stress level. And we’d see who had the biggest changes in their cortisol over the course of the debate.

During the first two presidential debates, we went to watch parties in Times Square, Midtown Manhattan and Northern New Jersey. Participants spat three times into tiny tubes: before the debate, to get a baseline sample, midway through the debate and after the debate.

We over-nighted the samples to Omaha, where Dr. French processed them in his lab. A few weeks later, he had the results.

We all agreed that the debate watch parties seemed stressful. At a bar in Times Square, we talked to young Republicans unhappy with their nominee and worried about their party’s future. Others were terrified at the prospect of a Clinton presidency. In Midtown, a group of Democrats had gathered to watch at the Roosevelt Institute, a left-leaning think tank. A few of them brought their own alcohol, to temper their anxiety (French and Smith took alcohol and caffeine intake into account in their analysis) and a number of them worried about Trump’s popularity.

But the results surprised us: cortisol levels stayed close to normal levels throughout the debates. Clinton supporters had a small spike at the midway point, but not by much. Overall, the stress levels for liberals and conservatives didn’t really change — with one exception.

The researchers looked at cortisol levels based on whether participants had someone close to them who planned to vote for the opposing candidate. And for Trump supporters who had a conflict with a person close to them — a parent, a sibling, a spouse — cortisol levels actually went up after the debate. They probably found the debate more stressful.

French and Smith warned us that this wasn’t a pristine study. In fact, both professors laughed when we asked if they’d submit our work to a peer-reviewed journal. But they agreed that this finding was statistically significant. And they didn’t find it for Clinton supporters, or voters who supported a third party candidate.

The other significant finding related to baseline cortisol levels — the participants’ stress level before the debate. The researchers found that Trump supporters had much higher baseline levels compared to Clinton voters.

Smith, the political scientist, couldn’t tell us why Trump voters had two times as much cortisol in their saliva compared to Clinton supporters. But he did say that our experiment served as an interesting pilot study — one that made him think differently about what he hopes to study next: tolerance.

Here, Smith made a co

Me and My Therapist  

We have this idea of what therapy is supposed to look like. There’s a couch. An objective therapist sitting across the room scribbling notes. But of course it’s not that simple.

What happens when your therapist is not really a therapist? Or the therapist is the one in tears? And of course, should you or should you not, try to have sex with your therapist?

In this episode, six short stories, many from our listeners, looking at how the role of patient and therapist can get... complicated.

Our stories are courtesy of:

Shaunacy Ferro is a senior staff writer at Mental Floss. Michael Heintzman is a writer and actor. Jerry The Series is his latest project.  Steven Puente first told his story on Story Collider. Michael Stahl is a writer, editor and journalist. His story was first published in Narratively. And listeners like you.

Thanks to Dr. Jeffrey Younggren for his thoughts and wisdom on ethics in patient/therapist relationships, and to Gary Schoener for his expertise on Dr. Renatus Hartogs.

A therapist's office is usually a private space, a place to share secrets. We don't often get the chance to see inside. So with many New York City therapists taking the month of August off, we invite you inside half a dozen or so therapeutic spaces. Make yourself comfortable, take your time and have a look around.
              - Amy Pearl, WNYC photographer

(Amy Pearl/WNYC)

Blair Casdin, psychotherapist, LCSW-R
New York, NY
Everything in a session has meaning, and the office is no different. The furniture, the lighting, the books, even the flowers. Recently, I purchased a water pitcher. One client joked that the water filter is toxic. Was he suggesting that what I have to offer him is toxic? The next week, however, he allowed himself to take a drink. For another one of my clients, the sight of the pitcher provokes a thirst she cannot quench. She fills her cup throughout the session, and admits that she never feels satiated. Most of all, I think a therapy office should be a place of comfort, opening a space that allows for open and engaged and even new thought, for both of us. Maybe what I am going for is that feeling you have when you get home after a long day and can finally relax and put your feet up. 

(Amy Pearl/WNYC)

Ali Mattu, clinical psychologist, Ph.D.
New York, NY
I want my patients to find something in my office that they can connect with, something that makes them feel at home. I scatter characters who have faced their fears, grown from their setbacks, and demonstrated resilience in the face of adversity. This stuff doesn't make Cognitive Behavioral Therapy any easier, but it does help the people I work with begin their own hero's journey.

(Amy Pearl/WNYC)

Stephanie Newman, psychoanalyst, psychotherapist and author, Ph.D.
New York, NY
I am sure it will not surprise you to learn that reactions to the therapist's space are as diverse and varied as the individuals who offer them. For some, the chair, consulting room, objects I have displayed have become a sort of touchstone. I will elaborate: I recently moved to a new office after working for many years at another location. Once I was situated in the new place, many people shared their reactions. They noticed that things had been moved around to reflect the new office and layout but were generally glad to have their favorites, their touchstones. One common reaction (I paraphrase): 'The space is larger but the chair is the same as always.' Plus ça change, plus c'est la même chose! Ultimately it is about the alliance, the relationship, and the bond you and the patient form, that which is shaped by the constant presence and steadfast attention over many hours and minutes and seconds, spent in the room with a caring and attentive therapist and hardworking patient. 

(Amy Pearl/WNYC)

Howard Danelowitz, Imago couples therapist, LCSW
New York, NY
The office was actually built for my colleague and for me and I wanted to try to have it be as open as possible. It’s a little bit unexpecte

I’d Rather Have a Living Son Than a Dead Daughter  

Earlier this year, North Carolina passed HB2, the so-called "bathroom bill." The law bans anyone from using a public restroom that doesn't match up with his/her biological sex. HB2 put the state in the middle of a national fight about gender. But North Carolina is also home to one of the few gender clinics for kids in the South, at Duke University's Children's Hospital.

This week, we spend a day in that gender clinic, the only one in North Carolina. We wanted to know how a clinic like this one operates in this political climate. And we wanted to find out how these patients are coping.

Dr. Deanna Adkins, a pediatric endocrinologist, started the clinic a year ago. Over the course of our day, we met three of her very different patients. Drew Adams is a 15-year-old trans man who came with his mom, Erica, all the way from Jacksonville, Florida. On the drive up, Drew wore a T-shirt with "This is What Trans Looks Like" printed on it. He told us he decided to change out of it before he stopped for a bathroom break in North Carolina; he used the men's room. When Dr. Adkins told Drew that not only would he get a prescription for testosterone, but that he could give himself his first shot that very day, Drew stood up and cheered.

Dr. Deanna Adkins, the pediatric endocrinologist in charge of the Duke Child and Adolescent Gender Care Clinic (Mary Harris)

We also shadowed Dr. Adkins's appointment with Jaye, an 18-year-old African-American trans woman. Jaye's experience has been very different from Drew's; her family has had a harder time accepting her transition. She also worries a lot about her safety, especially in North Carolina, and she can tick off the names of a number of trans women of color who have been killed over the last few years. But, like Drew, Jaye was thrilled when Dr. Adkins handed her a prescription for estrogen. She planned to pick it up that day.

At the end of the day, we met Dr. Adkins's last patient, Martin, and his mom, Karen (we decided to use pseudonyms for them both). Martin was born a girl and came out as trans a year and a half ago, after a long struggle with depression and anxiety. At first, his mom worried that this was one more expression of Martin's unhappiness. But Martin's transition has completely changed his outlook. His mom said he used to be withdrawn; when his depression was at its lowest point, he started cutting himself and had to be hospitalized. Now, she says, "It's more like we've become friends again and we've reconnected. I think it's because he realizes that I accept him for who he is and I'm going to support him."

This fall, Martin plans to present as a boy when he returns to school in Raleigh. When we asked him which bathroom he’ll use, he told us it will depend how brave he’s feeling.

Growing Up "Ugly"  

When Robert Hoge was born in Brisbane, Australia, in 1973, his mother immediately knew there was something wrong. Instead of asking the doctors, "Is it a boy or a girl?" she asked, "Is my baby okay?"

He wasn't. He had a tumor the size of his newborn fist smack in the middle of his face. His legs were very short; his feet were missing toes and twisted out of shape.

Robert had surgery to remove the tumor, but it left him with severe deformities. At first, his mother didn't want to take him home from the hospital. She had four older children; she worried about Robert's impact on them. Eventually, she relented. She hoped to give her son a normal life. But Robert's life has been anything but normal.

This week, Only Human spends some time with Robert Hoge. By all accounts, he's been wildly successful: he was the first in his family to go to college. He became a journalist, then a spokesperson for an Australian politician. He even carried the Olympic Torch before the Summer Games in Sydney.

Hoge, now 44 years-old, had multiple surgeries to change his face, but eventually said enough. (Matt Warrell)

But Robert's also had to get used to people calling him “ugly." And he knows better than anyone that there’s this lie we all tell ourselves: that it’s what on the inside that counts, and looks don’t matter. So what do you do when the way you look forces you to confront that, every day? And even if you can get past it — what about the rest of us?

 

Yes, Simba, Chimps Laugh  

You’ve probably heard that laughter is the best medicine. This week, we set out to see if there’s any truth to this idea.

First, our host Mary Harris went with Kurt Andersen, the host of Studio 360, to try something called laughter yoga. Its participants claim that laughing heals all kinds of ailments. It may sound far-fetched, but some scientists think laughter might actually have some measurable health benefits.

Then reporter Amanda Aronczyk looked whether laughter can be good medicine for our doctors — especially when they’re dealing with taboo things like death and sex. To find out, she spoke to a medical ethicist who teaches improv to doctors and nurses.

She discovered that what’s funny when doctors joke may depend on who is listening.

The instructors and attendees of the Fourth International Medical Improv Train-the-Trainer Workshop hosted by The Northwestern Center for Bioethics & Medical Humanities. (Rachel Jensen)

You can listen to Studio 360's episode about the science of laughter here.

The Prank Your Body Plays On Life  

Our friend Max Ritvo passed away August 23, 2016. We learned so much from our conversations with him, and we hope that this interview gives you a sense of the beauty — and humor — he saw in the world. 

One of our first guests on the show last fall was the young poet Max Ritvo.

Ritvo, 25, has spent years living with Ewing’s Sarcoma, an incurable cancer. Meanwhile he’s gotten married, taught at Columbia University, and performed in an improv comedy group. His first book of poetry, Four Reincarnations, comes out this fall. One work from that book, “Poem to My Litter,” was just published in the New Yorker.

But Ritvo is more than his accomplishments. He’s someone who reminded us that there are many different ways to look at death, and dying, and some of them make you actually laugh out loud.

He came back to visit us a few weeks ago on what he called his “farewell tour.” Even in his final days, Max says he keeps his sense of humor alive.

“When you laugh at something horrible, you're just illuminating a different side of it that was already there. If you make something sad funny you're much more likely to remember it. It’s a mnemonic device that makes our suffering rhyme with joy.”

We invited an artist, Nate Milton, to animate two of Max’s poems:

Poem to My Litter

 

Afternoon

 

Your Brain On Sound (Rebroadcast)  

This week we're revisiting an episode from our series on hearing, listening and sound.

When Rose* was growing up, she knew something wasn’t quite right about how she heard the world. She says it felt like she was isolated by an invisible wall. But when she got typical hearing tests at an audiologist’s office? She aced them, every time.

Rose’s problem was particularly bad in noisy places. “It doesn’t take much,” she says. “It could be five computers in a room and a bunch of shuffling around — you lose me at that point.”

It took Rose years, and plenty of doctors’ visits, to figure out what was happening. And when she did find out, it was thanks to the persistence of Professor Nina Kraus.

Kraus runs an auditory neuroscience laboratory at Northwestern University. For decades, Kraus has been conducting research on Rose and other patients like her to learn just how vital our brains are to understanding sound. And she discovered how hearing difficulties can be a marker for all types of neurological issues — autism, dyslexia, learning delays — that have nothing to do with our ears.

*not her real name

I Thought the Truth Would Be Enough  

The engineer who uncovered the lead crisis in Flint, Michigan  where the water was toxic enough to give kids  brain damage  doesn't even live in Michigan.

His name is Marc Edwards, and he teaches engineering at Virginia Tech, more than 500 miles away. Marc started investigating water pollution in Flint last August. But he got his start more than a decade ago, in Washington, DC, when he discovered high levels of lead in that city's water.

In DC no one would listen to him. He lost lucrative contracts and spent thousands of dollars  of his own money  sampling the water to prove it was contaminated even when the government insisted it was safe. In the end, he prevailed and the water was cleaned up. But not before thousands of kids were exposed to dangerously high amounts of lead.

This week, we talk to Edwards about his crusade to make our water safe. Getting the science right turned out to be just the beginning of a fight. The harder part was figuring out how to convince people he was right.

Vacation Is All I Ever Wanted  

For many sick people, getting even a temporary break from pain sounds too good to be true. But this week we hear from three people who did get a reprieve from a chronic disease, sometimes in very unconventional ways.

One of our listeners, Allison, struggled with severe, undiagnosed depression in her twenties. She hooked up with a no-good boyfriend who got her into a dangerous habit: heroin. Today, she’s 57 and she knows the guy and the drugs were trouble. But she also says heroin had a surprising side effect.

Sara Benincasa is a stand-up comedian who grapples with agoraphobia, a fear of crowds and busy places. But during a trip to the Netherlands she encountered a place that changed how she faces this fear, and helped her see what life could look like when she wasn’t scared to leave the house.

Hanna wrote into us with a really intimate story about life with ulcerative colitis, an incurable disease with some difficult side effects. When traditional treatments failed, she and her mom tried an experiment that changed how Hanna thinks about her body and her daily life.

One Doctor’s Mission: Make Abortion Safe in the South (Rebroadcast)  

As the Supreme Court nears its decision on a major abortion case this month, we're revisiting an episode from earlier this year:

Willie Parker grew up in Alabama without electricity, one of six kids in a single-mother household. He learned to read by the light of a kerosene lamp.

He was also raised in a fundamentalist Christian community that believed abortion was wrong. Single, unwed mothers had to publicly apologize in church.

Today, however, Parker is a obstetrician gynecologist who specializes in providing safe abortions in the Deep South. He travels between states and clinics amid protests and threats, and treats the same demographic of women who might have gone to his church.

Parker credits his change of heart to a sermon he heard by Martin Luther King Jr., where he alludes to the biblical story of the Good Samaritan—a man who acts out of kindness for the greater good.

“The Good Samaritan asks what will happen to this person if I don’t stop to help them,” Parker said.

Women in this region of the United States have few options, Parker says, if they aren’t ready to be mothers. The last abortion clinic in Mississippi was attacked last year, and the state moved to block doctors from being able to admitting patients to hospitals after they received an abortion. Parker says the trend of unsafe, secretive abortions are too dangerous to deny women access to care.  

“Being born in the South, and being reared in abject poverty… if I couldn’t make those women a priority, who will?” he says.

That perspective has fueled his work and helped shape his faith. It’s also the reason he doesn’t shy away from being recorded on film or speaking in public, despite the pressure he gets from the pro-life movements that thrive in the Bible Belt.

And while Parker has lost some friends, and severed relationships, he is at peace with his decision.

“I believe my work is honorable. I believe it is always appropriate to help people,” he says. “And so I’ve made the conscious decision to practice my craft with the dignity and honor that I think it is due.”

Part 3: A Star With Schizophrenia  

This is the third and final part of our series with NPR about mental health and generation gaps.

Rachel Star Withers has had hallucinations since she was a kid. She sees store mannequins taking off their hats, or ticking clocks that don’t exist. She’s schizophrenic. And instead of hiding it, she talks about it all the time, in videos she posts on YouTube. 

In our tell-all, share-all culture, more and more people like Rachel are speaking openly about their mental health and challenging the stigma that comes with their diagnoses. And while Withers has to block some naysayers and internet bullies, she says the videos help create a more compassionate community.

“It really made me feel not so alone.”

Part 2: Be the Doctor Your Mom Wanted You to Marry  

This is the second part of our series with NPR about mental health and generation gaps.

When Giselle applied to medical school she decided to be completely open about her experience with mental health: depression, anxiety and a suicide attempt when she was 16 years old.

She’s not alone—roughly 300 physicians in America commit suicide every year, and a higher percentage of doctors are depressed than the average person. But the intensity and prestige of the medical field doesn’t always lend itself to an open conversation about these issues.

Giselle said hiding her mental health issues is not an option. (Amanda Aronczyk)

The stakes are high for Giselle. Her mental health makes some people—from her school to future patients—uneasy. And sometimes her anxiety is so bad she can’t take her medical school exams. But as you’ll find out in the episode, these are not challenges that Giselle is about to shy away from. She says her challenges will make her a better doctor, and hopefully encourage other physicians find the help they need, too.

Part 1:  'You Don't Watch Bollywood With Me Anymore'  

This is the first part of our series with NPR about mental health and generation gaps.

Have you ever had a hard time talking openly about your mental health?

Only Human and NPR recently asked listeners that question. We wanted to know if the generation that lives so much online is any more comfortable talking about psychological problems  in real life  than their parents are.

Hundreds of thoughtful, heart-breaking, deeply charged responses later, we realized that we had stumbled onto a nest of generational rifts and cultural baggage. And we wanted to explore what it means to be open about mental health on Facebook and YouTube when you don’t want to talk about it with people in the real world.

One of these stories came from a young woman named Rose, a Pakistani American in Texas. Rose had never spoken to her parents about her own depression. But she channeled our question into an awkward conversation with her mother  listen to her story here.

We also talked with young adults who worry they spent too much of their childhood in therapy, people who watched family members suffer with depression in silence, and people who sent anti-anxiety prescriptions to the pharmacy across town so their families wouldn’t know. Generational stigma is an issue, many of them said, that we need to talk about publicly.  

With their permission, we’ll be posting some of these stories to our Facebook page at Only Human Podcast. We hope you’ll follow along and join in the conversation there.

If you or someone know is suffering from mental illness, please find helpful resources here.

Special thanks to the Jane and Gerald Katcher and the Katcher Family Foundation for funding our collaboration with NPR.

Too Ornery to Die  

Until 2012, if you had a rare genetic disorder, there didn’t seem to be much hope for a cure. The science just wasn’t there, and creating drugs for small populations made little financial sense for big pharma.

The story of one cystic fibrosis drug is proof: not only is treating the root cause of a rare genetic disorder possible; it can be profitable.

But the way this new drug was made is causing a stir among some of the very scientists and doctors who helped to create it.

This week: what happens when a charity dips its toe into the risky world of venture capitalism to speed the search for a cure — and the result is a drug with a list price of about $300,000 a year?

Paul Quinton researched his own disease to discover the mechanisms of cystic fibrosis. (Courtesy of Paul Quinton)

Scientist Paul Quinton, 72, who discovered the root problem in cystic fibrosis patients, called the price tag “unconscionable.” He is one of 28 doctors and scientists who wrote a letter to the pharmaceutical company pushing back on the price tag. He said he’s in a difficult position. 

“I’ve had friends tell me that they would shake hands with the devil if it meant that we would get a cure for this disease,” Quinton said.

But in the case of this particular drug, everybody wants to know: who gets to decide how much it costs to save a life?

 

Next month, we’re doing a show about not feeling at home in your own skin.  And we want to hear your stories: when did your body betray you and how did you learn to live with it?  Call and leave a message at 803-820-WNYC or leave a comment below.

Medicine and Mistrust on Native American Reservations  

Native Americans have some of the highest rates of suicide, alcoholism, diabetes and maternal mortality in the country. And while the federal government passed the Indian Healthcare Improvement Act  back in 1976 to make their care a priority, it spends just $3,000 a year caring for each Native patient. (We spend twice that on health care for every prisoner.)

Dr. Adrienne Laverdure and Dr. Ken Bernard, two Native American doctors, know this firsthand.The mother and son are both Chippewa Indians from North Dakota, and they’re part of the Indian Health Service (IHS), the federal agency that provides health care to all Native people in the U.S.

Dr. Adrienne Lavedure treats Native American patients on the reservation. (Natalie Jablonski)

Laverdure had never left the reservation when she started college at the age of seventeen. She had her son during her sophomore year, and he stayed with his mom as she continued through medical school before taking a job on the Lac de Flambeau Reservation in Northern Wisconsin.

Bernard applied to Yale on a lark; he had never left the Midwest before his mom and his sister drove him to New Haven for his freshman year. He went on to Harvard Medical School, and he now works on the Navajo and Hopi Indian Reservation in Northern Arizona. He said many of his patients don’t trust their doctors because the Indian Health Service has a troubled history -- a history he and his mother have seen affect their own family.

In the 1970s, Laverdure’s aunt went to an IHS hospital to give birth to her son. Doctors there sterilized her, without her consent. But she didn’t realize it until she tried to get pregnant a second time.

“I couldn’t believe that had happened,” Bernard said. “And more than that, I couldn’t believe that had happened less than 50 years ago.”  He explained that his great-aunt’s story reminds him what’s at stake in every patient visit to the IHS.

Dr. Ken Bernard is optimistic about the status of health care on Indian reservations. (Diane Hope)

While both mother and son see some of the worst health care scenarios in the country, they remain optimistic. They’re not afraid to talk about the difficult situations they confront on the reservation; in fact, they believe that talking about these difficulties can only improve their patients’ circumstances in the long run.

“The federal government, the Indian Health Service, [and] local tribes have a long history of hiding things that we are embarrassed about in our history,” Bernard said. “But I think the time for that is over.”

A Deaf Composer Holds Out for Science  

Note: This episode originally aired on November 3, 2015.

Jay Alan Zimmerman discovered he was losing his hearing when he was in his early 20s, trying to make it as a musician on Broadway in New York. As his hearing worsened, Jay considered other professions, but ultimately he couldn't imagine a life without music.

Recently, Jay found out about some experimental medical research that could make it possible for him to get his hearing back. In the late 1980s, researchers discovered that chickens could do something unexpected: if their hearing is damaged, they can regenerate the ability to hear again. Since then, scientists have been trying to figure out how the process works and if the same kind of regeneration might be possible in humans. Now, the very first clinical trials are underway to regenerate the damaged hair cells in people with hearing loss.

Jay Zimmerman, who has lost most of his hearing, composes music using memory, imagination, and a tool he created called a pitch visualizer. (Dave Gershgorn)

Jay has to decide if he wants to be a part of the experimental phase of this new treatment, or if the potential risks are too great. Meanwhile, he's found ways to keep composing with the little bit of hearing he has left.

If you'd like to hear an excerpt from Jay's latest show, Roboticus, you're in luck. Jay will be talking about making new musical instruments that utilize robots, and then performing some of Roboticus in the evening. Details will be posted here soon.

How a Prenatal Test Is Transforming Modern Medicine  

When Lee Herzenberg remembers the day her son Michael was born, she laughs and calls it a “cool birth.” Her obstetrician was a friend, and she describes it almost like a party -- “a little bit painful, but that you forget very quickly.” Lee even got a kick out of the fact that a resident learned to do an episiotomy on her.

It was November 1961, and she was at the newly christened Palo Alto-Stanford Hospital Center; her husband Len was a biology professor on campus. Like most fathers at the time, he didn’t attend the birth -- which meant he wasn’t there when their new child, Michael, started turning blue.

The nurses whisked the newborn off to the nursery without telling Lee anything was wrong.

It was then that a doctor noticed the characteristic features of Down syndrome: floppy muscles, eyes that slanted upward. They got Michael breathing again, but doctors thought his prognosis was grim. They gave Michael just a few months to live. A daisy chain of physicians was called, and Lee says it was a pediatrics professor who told her husband what had happened. Then Len was dispatched to tell Lee. She remembers the moment with uncharacteristic emotion.

“We hugged each other, and it was a terrible conversation to realize that you’d lost the baby, but the baby was lost,” Lee says now. “We knew immediately what we’d do – we had already made the decision that it was not a good thing to take the baby home, and so we didn’t.”

In the 1960’s -- an era before neurodiversity movements and early intervention programs -- many people still called people with Down Syndrome “mongoloids.” Playwright Arthur Miller institutionalized his son, Daniel, in 1966; a few years later, an article in The Atlantic Monthly argued that “a Down’s is not a person.”

Lee and Len Herzenberg had seen friends struggle with the birth of a child with Down syndrome and even gone with a colleague to an institution, where he dropped off his own infant daughter.

So, they made a choice: Michael would never come home.

But Michael wasn’t lost. Michael’s birth sparked their search for a blood test that has revolutionized prenatal care in this country.

Lee Herzenberg with her son, Michael. (Mary Harris)

---

I made the mistake of telling one scientist I was reporting about “Len Herzenberg’s lab.” He corrected me instantly: “Len and Lee’s lab”. Because Lee Herzenberg was “leaning in” decades before Sheryl Sandberg coined the phrase. At 81, Lee, a professor of genetics, is still running the lab she and her husband founded more than 50 years ago. Len died in 2013.

The lab is a quirky place, even by Stanford standards. Lee rarely sits on chairs, preferring cushions on the floor. She’s often accompanied by her bichon frise, Gigi. Researchers can often be found working in this basement office well into the night.

But Lee Herzenberg isn’t just quirky: she’s one of the few -- possibly the only -- professor at Stanford never to have officially graduated from college. Instead, she trained by her husband’s side, auditing courses while he got his Ph.D. at Cal Tech (women weren’t allowed to attend at the time), and working at his labs at the Pasteur Institute in Paris and the NIH.

And the science that’s done here has changed the course of medicine.

The Herzenbergs are best known as the creators of the modern-day fluorescence-activated flow cytometer, or FACS. It was a machine born out of frustration: Len couldn’t stand squinting down a microscope looking at cells.

Before the FACS, a biologist looking at slides could feel like he was playing a really intense round of “Where’s Waldo”, staring at crowds of all kinds of cells, trying to pinpoint the exact one he was looking for. Not only was it annoying, Len Herzenberg worried it wasn’t particularly scientific. He wanted a way to find and describe cells that didn’t rely on his worn out eyes.

The FACS was used to diagnose AIDS - because it can quickly and easily sort out T-cells. The FACS was used to find the first stem cells. When Len Herzenberg died, one colleague told The New York Times that “without Len, tens of thousands of people now alive would not be.”

But in the 1970s, the Herzenbergs were still proving the value of this machine. That’s when they started thinking about using it to create a blood test for Down syndrome.

Len Herzenberg had seen research from Finland claiming it was possible to see a fetus’ cells in a mother’s blood. It was hard to believe. But he knew that the FACS, with its nearly magical sorting capabilities, could figure it out. So he took on a medical student named Diana Bianchi as a research associ

The Robot Vacuum Ate My Pancreas  

“A Roomba ate my pancreas!” It sounds like the plot of a weird sci-fi comedy. But in Dana Lewis’s life, this is just a normal day.

Lewis is one of the first people in America to create her own mechanical pancreas in an attempt to better manage her type 1 diabetes. (Her robotic vacuum cleaner keeps slurping up and choking on the system’s many cables.)

Some of Lewis's artificial pancreas devices. (Kenny Malone)

Type 1 diabetes is, at its simplest, a broken pancreas. Sometimes called juvenile diabetes, the autoimmune disease disables the pancreas from producing insulin, a key component for controlling blood sugar. People with Type 1 diabetes often have to use glucose monitors and insulin pumps to allow their bodies to function.

For years, the Holy Grail of diabetes management has been the so-called artificial pancreas, a system that can measure blood glucose levels and automatically give the appropriate insulin dosage. And while a handful of companies are close to getting the technology to market, tech-savvy patients have grown impatient.

Dana Lewis and her husband Scott Leibrand devised a system to “hack” the usual methods of diabetes management, which they found tiresome for a normal, active person trying to live their life. Their Open Artificial Pancreas System (OpenAPS) rigged Dana’s glucose monitor and insulin pump to automatically understand shifts in blood sugar and adjust insulin rates accordingly.

Dana Lewis and her husband, Scott Leibrand. (Kenny Malone)

An early version of the couple’s system caught the attention of the Food and Drug Administration – the government agency that regulates medical devices. The FDA strongly encouraged Scott and Dana to keep their invention to themselves and not distribute do-it-yourself pancreases or the code running them.

But last year the couple decided that OpenAPS was working so well for Dana, that they had a moral obligation to share it with the type 1 diabetes community. In February of 2015 they open-sourced the documents for the artificial pancreas and now, nearly 50 people have been built their own versions.

In this episode of Only Human, we look at how Dana and Scott hacked together one of the first artificial pancreas systems and the complicated ethical questions that come with sharing the technology.

Have you ever hacked your own medical advice? Tell us in the comments below.

Doctor Stories: The Patient I’ll Never Forget  

Note: In this week’s episode we asked doctors about the patients who changed their lives. It was a basic question, and an obvious one – so obvious that we weren’t prepared for how good the responses would be. The stories were powerful and intimate, and a peek into the world we don’t always see.

This got us thinking: We have to keep this going. Would you be willing to share this short questionnaire with your networks http://goo.gl/forms/S0940YVFlT? We’d love to hear from anyone who would like to contribute!

A big part of a doctor’s job is listening. They listen to our symptoms, pain and life situations. They listen for what patients aren’t telling them. They listen to heartbeats.

But give them a mic, like the Annals of Internal Medicine did, and you’ll find out they also have plenty to say.

This week we hear from three doctors in what we call a "Doctor Story Slam" – like a poetry slam, except with more stethoscopes and medical degrees. We often hear about how doctors change patients’ lives. We wanted to know: how do patients change their lives?  These are the kind of stories you never hear during your routine check-ups.

Doctor 1: Dr. Richard Weinberg

Dr. Weinberg is a gastroenterologist at Wake Forest Baptist Medical Center in North Carolina. He talked to us about a patient suffering from stomach pain who he found impossible to diagnose, until he brought up some unlikely subjects that got her talking: bakeries and dreams. When he found out his patient’s actual history  a traumatic incident from when she was a teenager  he continued to listen, even though he knew her problem couldn’t be solved by one of his procedures or prescriptions.

Dr. Richard Weinberg in his clinic. (Courtesy of Dr. Richard Weinberg)

Doctor 2: Dr. Reeta Mani

Dr. Mani is a microbiologist in Bangalore, India. She told us about two patients who came to her with a very strange predicament: they were married, successful,and having problems in their relationship. But there was something even more pressing that she found in their lab results: both had two different kinds of HIV. Dr. Mani said their story surprised her, but not as much as the way they reacted to the news.

This story was first published in Pulse - voices from the heart of medicine.

Dr. Reeta Mani in Bangalore. (Mary-Rose Abraham)

Doctor 3: Dr. Michael LaCombe

Dr. LaCombe is a cardiologist in Augusta, Maine. His story goes back decades ago, to the beginning of his residency. He had a six week rotation in the psychiatric ward and had a young patient who was schizophrenic and delusional. He would talk to her every day, two hours in the morning and two hours in the afternoon. When his training was done he promised her he would write to her. He did, for decades, but he never heard from her again. Until 50 years later.

Dr. Michael LaCombe in Augusta, Maine. (Courtesy of the LaCombe family)

Listen to all of their stories in the player above or anywhere you get your podcasts. 

Real Doctors, Fake Medicine?  

Dr. David Kallmes’s medical degree is real. But one of his treatments for spinal fractures might not be.

Kallmes performs vertebroplasty, a surgery he has helped to develop and standardize, that involves injecting medical cement into the fractured bone to stabilize the fractured area and relieve pain. He says he gets great results from his patients, and teaches the method to other doctors at conferences.

But here’s the thing: he has no idea why vertebroplasty works. So a few years ago, he decided to test it against a placebo.  Kallmes found that pretending to perform vertebroplasty – making it seem like he was injecting a needle into the spine but without the cement – had similar effects. About 40 percent of both groups experienced immediate relief from pain after the surgery. He published his results in the New England Journal of Medicine.

So even though Kallmes’s research put the procedure into question, the practice continues: more than 14,000 patients received vertebroplasties last year.

Most of us would like to think the medicines and treatments we take – and pay for – are grounded in solid science, that our doctors know exactly what they’re doing when they prescribe them. But there’s consistent proof that placebos work just as well as some medical treatments, and it isn’t just because of a positive attitude.

Until recently, the “placebo effect” wasn’t taken seriously by the medical establishment. But one researcher, Ted Kaptchuk, has decided to make it the focus of his work.  “I kept seeing things that were not explainable by my training,” said Kaptchuk, who directs the Center for Placebo Studies at Harvard Medical School.

Kaptchuk had an unusual trajectory to the medical research field. He was the founder of the Students for Democratic Society at Columbia University, and then quit when he thought it became too radical. He studied and practiced Chinese medicine and acupuncture and lived in Asia for years.

He noticed that patients throughout his practice would get better from their interactions with the medical system, and the belief that they were being helped, even if the medicine’s impact was difficult to track.

He started to study this mechanism – the placebo effect – and the endorphins, the body’s natural painkillers, that the body releases when it happens. He had a theory there was more to it than blind faith: a neurological reason, and maybe a genetic reason.

In one of the most revealing studies on this phenomenon, published back in 1978, researchers divided patients into three groups after a dental surgery and gave them each a different treatment: morphine (a painkiller), salt water (a placebo), and naloxone (a chemical that blocks endorphins). That third group didn’t get the placebo effect.

“It was the first time that we [could see] a biology, a neurobiology of placebo effects,” Kaptchuk said. “Patients were not making this up in their heads.”

And while the findings were now backed by evidence, the pain-killing endorphins and response to placebos actually come from a less measured place. Kaptchuk said it’s the ritual of medicine – seeing a doctor, planning a treatment – that triggers the brain into healing itself.

“I’ll be quite simple and say what I think I’m doing is quantifying and making the art of medicine a science,” he said.

 

EDITOR’S NOTE 4/13/16

The text has been edited to clarify Dr. Kallmes’s role in developing the vertebroplasty procedure. He did not single-handedly develop the procedure, as the original text may have implied, nor did he inject the cement himself.

The article also said that that vertebroplasty and placebo patients experienced immediate relief after their surgeries, when, in fact, it was about a 40 percent success rate for patients in both groups. The text has been updated and clarified.

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