Only Human

Only Human

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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

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.

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

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 associate and made sorting out these cells her project. If they isolate these cells, he could know a lot about the developing fetus, including whether the fetus had chromosomal abnormalities. "They had a very personal reason for doing this, because of their son, Michael," Bianchi says now. "They wanted to have a test that could be offered to any pregnant woman – that would be noninvasive and would allow them to know if child had Down syndrome. The first step, however, was to show that you could pull out fetal cells." Scientists now estimate that for every 200 billion cells in a mother's bloodstream - about 10 of those are fetal cells. Bianchi was one of the first people to see them. The New York Times quoted Len Herzenberg saying it was a "first step" towards a blood test for Down syndrome for all pregnant women. But it would take thirty years for a practical test to become a reality. As it turned out, Len Herzenberg's FACS wasn't the right tool for prenatal diagnosis. There weren't very many fetal cells to be sorted, and if a pregnant woman already had children, scientists couldn't be sure if the cells in her blood came from the current fetus or one of her older kids. But in 2008, Len helped ensure the right tool was found. A researcher named Stephen Quake had discovered a way to sequence chunks of fetal DNA floating in expectant mothers' blood. As a member of the National Academy of Sciences, Len made sure the paper was published in the academy's journal. Another researcher, Dennis Lo, confirmed Quake's findings. Three years later, the tests were on the market. Now, at just 10 weeks into a pregnancy, a whole range of things can be revealed with this test. Not just Down syndrome, but a host of other chromosomal abnormalities as well as the sex of the child to be. Until this test, doctors had to rely on amniocentesis, an invasive procedure that involves-- inserting a needle in the womb to sample amniotic fluid, or biopsying the placenta — to tell them with any reliability whether a fetus had a chromosomal abnormality. These tests aren't just uncomfortable, they come with a risk of miscarriage. By some estimates, in the last five years the number of these procedures performed in this country have plummeted by more than 50 percent. To some parents, this knowledge can be alarming. Advocates in Ohio are trying to pass a law preventing abortions if Down syndrome is the reason (North Dakota and Indiana have already passed similar laws). Lee Herzenberg is honest about what she would have done if she'd known early on in her pregnancy that Michael had Down syndrome. "I'd say if I had the choice of not pushing Michael into this life – if I at that time would know I was carrying a Down syndrome child — I would have aborted the child," she says. "I see no reason Michael has to live the life he leads. The fact that we've made it very happy for him or that he's made it very happy for us — all of that is adapting to a situation, but I don't think it's fair or proper." But Lee Herzenberg is alarmed that these tests are now being used to determine the sex of unborn babies. She worries about parents choosing to abort girls. — Diana Bianchi, that medical student from the Herzenberg lab, is now a professor at Tufts, where she founded the Mother Infant Research Institute. She's still working in prenatal testing. In fact, perfecting these tests has become her life's work. But her focus has shifted. Now that she can detect Down syndrome so early, she wants to treat it early, too: in the womb. Because finding this chromosomal abnormality at 10 weeks means there's a window of opportunity: The brain changes associated with Down syndrome don't occur until a month or so later. Theoretically, you could treat a fetus before some brain changes occur at all. Bianchi's work is still early. She's experimenting with mice, giving them existing drugs in utero to see if she can forestall brain damage. There's an often-quoted statistic, that 90 percent of parents who find out that their fetus has Down syndrome will abort. But that statistic is from a study done in the United Kingdom. In the US, far fewer women terminate. "We have to unpack this connection between prenatal testing and abortion," she says. "We have good data to suggest that approximately 40 plus percent of women who know their fetus has Down syndrome continue their pregnancy. There are many women who speak very highly of the fact that this allows them to prepare." — The photos that Michael keeps in his room. (Mary Harris) The Down syndrome baby who kicked off the search for this blood test is now a 54-year-old man. He lives in a squat house in Redwood City, Calif., just a 30 minute drive from his birth mother's home. For years, Michael lived with a local woman named Barbara Jennings, who raised a number of children with developmental challenges. The Herzenberg's pediatrician helped them find her when Michael was a newborn. The Herzenbergs would visit Michael every month or so, but they never felt they should bring him home. When Barbara died, Michael moved to this group home. It's hard to know how much Michael understands when I talked to him, though he's learned to read and use a cell phone. And he's stubborn. A lot like his mother, actually. "Michael has the hardest head in the whole world," says Janet Thomas, the caretaker who runs this house. "He does whatever he wants to do. He does not care whatever you say. He's going to do whatever it is he wants to do — that's Michael." I asked Lee if she ever regretted not raising Michael, and she said no. "It was a decision that was selfish if you like, because we had things we wanted to do. In retrospect, a lot of things would never have gotten done. There would be no FACS had we decided to do this. Because it would have been a very intensive kind of upbringing." As for Michael, he clearly loves his mother, no matter what she decided. In Michael's room, there are photos on almost every surface, with snapshots of his biological and adopted families. In the corner is a huge poster of his father, celebrating when he won the Kyoto Prize for his contributions to biotechnology. And deep in one album, there's a picture of Len and Lee together. The caption reads "Michael's other mom + dad."

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 createher 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

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. 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. Kallmes' medical degree is real. But one of his treatments for spinal fractures might not be. Kallmes performs vertebroplasty, a surgery he developed that involves injecting medical cement into the fractured bone to stabilize the fractured area and relieve pain. 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 – injecting a needle into the spine but without the cement – had similar effects. 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.

Every (Dead) Body Has A Story

When the first-year medical students at Table 4 met their male cadaver, they weren't pleased. The group was in the home stretch of anatomy class at NYU School of Medicine, and the final exam was a couple weeks away. They had dozens of vessels, nerves, and organ components to memorize. And this cadaver was an interloper. They had grown attached to the first body they were dissecting — an elderly woman whose chest cavity was nice and neat, but whose intestines were so ravaged by cancer there was no point in working on her anymore. But this new body on Table 4 proved more challenging, they said. "Now we can't see anything in our new body [in the chest], and we can't refer back to that first work we did," said student Samantha Ayoub, expressing the frustration of her six-person group. Medical school instructors often refer to the cadavers as the students' "first patient." There are about 20,000 of them donated to U.S. medical schools each year, according to the Harvard Business School. The schools encourage students to be grateful and respectful to these bodies, but with rare exceptions, schools don't encourage students to think too hard about the lives of these "patients" prior to the dissection table. And as it turns out, the body on Table 4 was far more than a collection of vessels and valves. Literally and figuratively, he was an instructor, guide and teacher. His name was Haig Manoukian, and he and his wife, Michele Piso Manoukian, decided to donate his body to NYU so he could continue being an educator. "He would become part of someone else's wisdom," Michele said. Haig was a musician – a world-renowned player of the oud, a Middle Eastern stringed instrument, similar to a lute or guitar. People came from far and wide to study with him. "He was very analytical and very patient," Michele said. "I can kind of picture him [in anatomy lab], talking to the students about what they're doing and the equipment they're using, and saying, 'Oh, you're using this one? How interesting!'" The six students at Table 4 knew none of this. At NYU and most places, cadavers' identities are kept anonymous. The students found out from our reporter at Only Human, with NYU's permission. They were all fascinated, both by Manoukian's career as "the Jimi Hendrix of the oud" and by the details of his terminal illness and his decision to donate his body to their education. They were glad they didn't know too much about Manoukian earlier – so they could dissect without knowing his cause of death in advance, and so they could avoid dealing with death emotionally. But some had mixed feelings. "I feel bad that we didn't really think about [his life]," said student Bianca Kapoor. "When you're in the weeds of things, you don't really think about that, because you're just focused on 'This vein goes to what vein?'" After their course, Michele invited the students to a tribute to Haig's life with several dozen friends and family members. There was food and music and reminiscence. Michele was busy playing hostess, but she greeted the group warmly, and they later agreed to get together for tea. They promised her that his life would live on in their work. "I hope I do that justice," Samantha Ayoub said. "And honor his life and be a good doctor." WATCH: Haig Manoukian (far left) plays the oud at a summer retreat

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