Robert Dear, the man accused in the mass shooting at a Planned Parenthood office at Colorado Springs, blurted he was guilty Wednesday in court, one of several outbursts during his arraignment.
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AIDS activists poured cat litter on an image of Turing Pharmaceuticals CEO Martin Shkreli during an October protest in New York. Craig Ruttle/AP hide caption
toggle caption Craig Ruttle/AP
The Senate Special Committee on Aging is holding the first of a series of hearings Wednesday into why the prices of medicines that have been on the market for decades are suddenly climbing.
The investigation by the Senate committee, led by Maine Republican Susan Collins and Missouri Democrat Claire McCaskill, is focusing on four pharmaceutical companies that bought the rights to certain drugs, and then dramatically increased the prices.
Collins called the price hikes — as much as 5,000 percent in one case — “egregious.”
“We’ve had nontraditional companies come in, buy the rights to these drugs and then hike it up very high — and, as one executive put it, just because they can,” Collins tells NPR.
Collins and McCaskill last month requested detailed information from Turing Pharmaceuticals, Valeant Pharmaceuticals, Retrophin and Rodelis Therapeutics about several drugs whose prices have skyrocketed in the past year.
In a letter to Valeant, the senators asked for information on three drugs, including Cuprimine, a medicine that treats a metabolic condition called Wilson’s disease. The price of Cuprimine jumped nearly 3,000 percent after Valeant bought the rights to sell it, from $888 for 100 capsules to $26,189 for 100.
They’ve asked Turing to explain the increase in the price of the toxoplasmosis drug Daraprim, which went from $13 a pill to $750; and they have requested information from Retrophin about why the price of Thiola, a drug to treat a rare kidney condition, rose from $1.50 a pill to $30.
Finally the senators asked Rodelis how and why the company decided to raise the price of Seromycin, which treats multidrug-resistant tuberculosis, from just $500 for 30 pills to $10,800.
“Some of these companies seem to act more like hedge funds than traditional pharmaceutical companies,” Collins says.
Collins and McCaskill say none of the four companies fully responded to their requests by last week’s deadline.
In a response to NPR’s request for comment, a Valeant spokeswoman emailed, “We are cooperating with the committee’s review, including providing documents they requested.”
Retrophin supplied this written statement: “Pharmaceutical pricing that strikes the right balance between affordability and enabling innovation is an issue of legitimate concern for patients and the industry, and we look forward to sharing our views with the special committee.”
Turing and Rodelis didn’t respond to interview requests by NPR.
The senators say they are determined to get answers; both pledge to issue subpoenas if the companies don’t voluntarily comply.
Executives from the companies aren’t scheduled to appear at Wednesday’s hearing. McCaskill describes it as a “table-setting” hearing, where representatives from pharmacies, hospitals and universities will lay out the issue. The committee intends to summon executives from the companies later.
Both senators say they are keen to learn how the companies chose the drugs they bought and how they settled on the high prices.
“This may be a business model,” McCaskill says. “It may be a way of gouging the public with drugs that are off patent but don’t have a lot of competition because they’re not widely prescribed.”
She says she became worried about huge price hikes last summer at a hearing that was supposed to be about tax policy. An executive from Valeant was at the hearing, and McCaskill learned that the company had recently purchased rights to a heart drug called Isuprel and then raised the price by more than 500 percent.
“I asked some pointed questions at that hearing,” McCaskill says, “and I never got answers. And I still haven’t gotten the complete answers.”
Traditionally, drug companies defend high prices by saying they spent a lot on the research and development of the drug in question. But Valeant didn’t develop Isuprel; it acquired the drug long after it was on the market.
Valeant sent McCaskill a letter explaining that Isuprel is part of an in-hospital treatment and Valeant’s analysis showed that hospitals could bear the cost.
“Valeant’s increases in the list prices of Nitropress and Isuprel have had limited impact on the average hospital’s costs,” the company letter said. It said some hospitals use a larger volume of the drugs and added, “For those institutions where the impact was significantly greater, we are beginning to reach out to hospitals to determine an appropriate pricing strategy.”
Companies like Turing are different from traditional drug companies, according to Pratap Khedkar, a managing director at ZS Associates who consults with the pharmaceutical industry on pricing. He says that’s because they’re not focused on developing new products.
“It does sound like somebody who’s flipping houses or something,” Khedkar says, “because you’re not adding much value. You’re simply looking for arbitrage, so that’s much more of a hedge fund business than a pharmaceutical business.”
A version of this story ran on Morning Edition on Wednesday.
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A “speedball” mix of heroin and cocaine has caused overdose deaths for decades. Today, high-risk blends may alternatively include heroin or opioid pain pills plus Klonopin, Clonidine, or Fentanyl. Marianne Williams Photography/Flickr RM/Getty Images hide caption
toggle caption Marianne Williams Photography/Flickr RM/Getty Images
In a brick plaza next to the Chelsea, Massachusetts city hall, Anthony, a bald but still-youthful man in grey sweats, tells me he spent the previous night in the hospital for what he says was his twelfth overdose.
Anthony and other users of illegal drugs agreed to speak to NPR for this story on the condition that we use only their first names. He blames his overdose on what his dealer told him was a particularly strong bag of heroin laced with the anesthesia drug fentanyl — or something like it.
“He told me how strong it was,” Anthony says, “but everyone says that to sell their dope. The potency now is so inconsistent, you don’t know. So you’ll eat a bunch of Klonopins and do a shot of heroin, and then you’re dead.”
Among 501 overdose deaths assessed by the Office of the Chief Medical Examiner in Massachusetts in the first six months of 2014, and analyzed by the Harvard T.H. Chan School of Public Health, the vast majority were caused by heroin or a prescription opioid taken in combination with some other drug or alcohol. Fentanyl, a synthetic opiate that’s many times more powerful than heroin, was present in about 37 percent of the deaths, the researchers found. Klonopin, Xanax and other anti-anxiety benzodiazepines showed up in 13 percent of the Massachusetts overdose deaths.
Anthony says many users figure the risk from taking one of these multi-drug “cocktails” is worth the extra $2, or so, per additional pill.
“It intensifies the heroin high, and keeps you high longer,” he says.
On the street, there’s a hot market for lots of different prescription medications.
Using heroin in combination with other drugs is certainly not new. The speedball mix of heroin and cocaine that is present in some of the overdose deaths has been a popular high-risk choice for decades. Patients on methadone describe another popular cocktail taken after their daily dose of methadone treatment: gabapentin (anti-seizure medication), Klonopin, clonidine (treats high blood pressure and attention deficit hyperactivity disorder) and an over-the-counter allergy medicine.
“Little do you know that they all take a toll on your heart and on your breathing,” says Nicole, another drug user, who says she’s on methadone treatment for her heroin addiction.
Some heroin users pill-shop, she says, knowing which symptoms to mention so their doctor will prescribe something for anxiety or depression. And patients who have a legitimate need for these medications, who take them as prescribed, sometimes also experience an overdose.
“You trust your doctor,” Nicole says. “You think, ‘Oh, my doctor’s giving this to me, so it’s fine. Nothing’s going to happen to me — like I’m prescribed to take it.’ “
But many other people take the mixture with the aim of getting high, she says. “I think that the cocktail’s a more common thing than heroin is now. Or, most people that take heroin take the cocktail as well.”
Doctors who treat patients in recovery face difficult choices. Patients often describe increased anxiety, depression or trouble sleeping. But methadone and benzodiazepines can both suppress breathing; for someone who is on methadone, using benzodiazepines to calm anxiety can trigger a serious adverse reaction.
Even physicians who specialize in addiction medicine have trouble figuring out what to prescribe for anxiety or depression when a heroin patient is the doctor’s office begging for help, says Dr. Kavita Babu, a toxicologist at the University of Massachusetts Medical School.
“Not only is it difficult to put our knowledge of pharmacology into play,” she says, “but sometimes, [when] managing patient expectations about how their pain or anxiety should be treated, our clinical knowledge falls apart at the bedside.”
Now, with the revelation that most overdose deaths in Massachusetts stem from a toxic mix of heroin or prescription pain medicine with alcohol, cocaine or fentanyl, leading physicians and officials are urging all doctors to be more careful in their prescribing habits. They’ve pledged to update a state database where doctors are supposed to input the drugs they prescribe for each of their patients.
Mixing these drugs in toxic ways is “a big problem,” says Dr. Jim O’Connell, president of the Boston Health Care for the Homeless Program. “We’ve just been scratching the surface on it.” O’Connell says he asks patients which pills are big sellers on the streets and tries to avoid prescribing them.
“We, as doctors, don’t really have a good sense of what we should be prescribing, what we shouldn’t,” O’Connell says. “It’s really the combination of other drugs that is going to be the battle down the line.”
Many addiction specialists say society also needs to pay more attention to the emotional pain at the root of addiction.
In Chelsea, Anthony shows me the park bench where’s he’s overdosed a dozen times.
“There’s times when I really do want to die,” he says.
I ask him why, and Anthony’s face crumples in silent sobs.
“The more I do, the more guilt I feel and the more I want to kill myself,” he says. He struggles with “the guilt and the pain and shame” for the repeated relapses.
Anthony clutches his hospital discharge notes in one hand. The notes say he should call his doctor and psychiatrist, and schedule follow-up appointments. Anthony doesn’t have a phone. When I offer him mine to make the call, he gets the answering service. He doesn’t leave a number.
This story is part of NPR’s reporting partnership with WBUR and Kaiser Health News.
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How stressful is medical training? So bad that in a class that encouraged medical students to express their feelings by drawing comics, nearly half of them depicted their supervisors as monsters, researchers say.
Courtesy of Trey Banbury
Students imagined the workplace as dank dungeons, represented supervising physicians as fiendish, foul-mouthed monsters, and themselves as sleep-deprived zombies walking through barren post-apocalyptic landscapes, the study authors, Daniel R. George and Dr. Michael Green, wrote Tuesday in JAMA, the journal of the American Medical Association. They teach the Comics in Medicine class at Penn State College of Medicine.
In one particularly harrowing image, a student “depicted his supervising physician screaming at the medical team, causing one intern to urinate herself moments before having her head bitten off for possessing too little information about a patient,” the authors wrote.
While the article referred to only the 66 fourth-year students who have taken the humanities class since 2009, a much larger study in the same special annual medical education issue of JAMA found that nearly one-third of more than 17,000 medical residents in 31 studies screened positive for depression or depressive symptoms.
Courtesy of Alex Burton
That study, by researchers from several leading medical schools, including Harvard, Yale and Cambridge in England, adds to a body of work showing that the stress of training can cause depression.
Over a lifetime the depression rate for doctors is similar to the general population, about 10 to 13 percent in male physicians and 20 percent in females, compared with 16 percent overall. according to an editorial written by Dr. Thomas Schwenk, dean of the Unviersity of Nevada Medical School. So it looks like the number of doctors affected during their residencies is significantly higher.
And it’s not just the doctors themselves who suffer — patients should worry, too. Depression in residents “has been linked to poor-quality patient care and increased medical errors,” the researchers note.
The two reports demonstrate that something is wrong with the medical training system, according to Schwenk. “The profession purportedly recognizes the importance of health and wellness,” he wrote, “but the value system of the current training environment makes clear to residents the unacceptability of staying home when ill, of asking for coverage when a child or parent is in need, and in expressing vulnerability in the face of overwhelming emotional and physical demands.”
Courtesy of Shane Lavin
A big part of the problem is that medicine has long been taught by treating underlings harshly, which has been considered acceptable because a mistake could cost a patient her life.
“People treat people like they were treated,” said Green, a physician and professor of internal medicine at Penn State, in an interview. ” ‘This is how I did it and I’m OK, so I’m going to do it to you and you’ll be OK.’ “
Courtesy of J. Rice
But medicine itself has changed, Schwenk said in an interview, and that compounds the problem. “My era [the 1970s] came away with very strong role models and people who were incredibly influential,” he said. “Today everyone is so frantic,” with patients moving in and out of hospitals faster and strict protocols for patient care. That leaves little time or space for more benevolent types of supervision and teaching for doctors in training.
Schwenk says it’s time for the pendulum to swing back toward more personalized training after medical school. “There’s got to be a shift back toward dedicated teaching and mentorship,” he said. “We’ve lost that because of the craziness of the system.”
Doctors who train other doctors also need to practice what they preach, he says. “We don’t teach in ways that encourage wellness and good mental health and coping mechanisms.”
Courtesy of Shane Lavin
Green says the system needs to stop the abuse of medical students and residents by professional superiors.
“There has to be a message that this is not OK and there will be consequences for treating people badly,” he said.
Both doctors said they hope that bringing more visibility to the problem could help lead to needed changes. Said Green: “My hope is it’s getting better because we’re much more sensitized to these issues.”
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An inheritance won’t affect eligibility for a subsidy toward health insurance bought on an exchange. ImageZoo/Corbis hide caption
toggle caption ImageZoo/Corbis
When do people have to repay premium tax credits for health insurance purchased on the marketplaces? And does Medicare ever cover dental services? Read on to find the answers.
My 60-year-old sister lost her $45,000 a year job in 2014, and she and her husband bought a marketplace plan this year. They had estimated their annual income at $22,000, but then she inherited $30,000 from our mother’s estate. If I’m calculating correctly, they’ll have to repay $18,000 in premium tax credits. Are there no allowances made for a death in a family or unforeseen circumstances?
Fortunately for your sister, your calculations are incorrect. There are special circumstances that likely apply in her case.
The premium tax credits that people receive to buy health plans on the marketplaces are based on annual household income. An unexpected increase in taxable income, whether it’s because someone gets a big raise at work or a home-based business takes off, may change the amount of tax credit people are entitled to.
If your income estimate was too low you’ll generally have to repay some or all of the excess at tax time when your estimate is reconciled against your actual income for the year. The repayment amount is capped at $1,250 for an individual if annual income is less than 400 percent of the federal poverty level, or about $47,000 for one person.
However, not all types of income are counted when figuring annual household income for premium tax credits. An inheritance, such as your sister received, is considered nontaxable income, says Judith Solomon, vice president for health policy at the Center on Budget and Policy Priorities. It isn’t counted when determining modified adjusted gross income, the tax term for the household income figure on which the premium tax credits are based.
I qualify for a premium tax credit for marketplace coverage in 2016. I will turn 65 in April, and I’ll switch from my marketplace plan to Medicare. If I take a part-time job after I switch and my 2016 income increases, will I retroactively lose some of the monthly tax credit I received for the time I was eligible for marketplace coverage and have to repay it?
A. As discussed above, your premium tax credit is based on your annual income, not just your income for the months during which you’re eligible for subsidized health insurance on the marketplace. If you think you might get a part-time job after you drop your marketplace plan in the spring, take that into account when you estimate your income for your 2016 marketplace coverage.
“He should include what he expects to make [later on] in his income estimate, and get it as close as possible,” says Solomon.
Most people take the premium tax credits in advance to help them cover the cost of their monthly payments. But if you’re worried about having to repay premium tax credits, you could opt to pay the entire premium up front every month while you have your marketplace plan and take the premium tax credit on the back end when you file your 2016 taxes.
I have an auto-immune disease called Sjogren’s syndrome that attacks all my moisture-producing glands. Because of my dry mouth, my doctor says I will eventually lose every tooth I have. I desperately need dental care. I am on Medicare, and it clearly states that it does not cover routine dental care. I do have dental insurance through the company that I retired from, but it doesn’t begin to cover all the care I need. I have spent all my savings. Is there anything I can do?
You have a few options. Medicare only covers dental care in very limited circumstances, for example, if someone needs teeth pulled before receiving radiation to the jaw or if someone is hospitalized and needs an oral exam before kidney transplant surgery.
Dental insurance typically covers a few thousand dollars worth of care or less every year, and usually pays only half the cost of major restorative work such as crowns or implants.
People like you, who have a medical condition that affects your teeth, are in a tough spot, says Dr. Matthew Messina, a consumer adviser for the American Dental Association who practices in Cleveland.
In health care, “somehow the mouth got disassociated from the rest of the body,” Messina says. “Oral health is a significant component of whole body health.”
If Medicare won’t cover the care you need, check out dental schools or community health centers in your area.
Three-quarters of community health centers provide dental services, generally charging on a sliding scale based on income, says Amy Simmons Farber, communications director at the National Association of Community Health Centers. The specific services offered may vary from center to center.
Kaiser Health News is an editorially independent news service supported by the nonpartisan Kaiser Family Foundation. Email questions for future columns: KHNHelp@KFF.org. Michelle Andrews is on Twitter: @mandrews110
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Kentucky embraced Obamacare and extended health insurance coverage to hundreds of thousands of people who hadn’t had it. Governor-elect Matt Bevin, who’s sworn in on Tuesday, may roll that back.
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A strain of high-cannabidiol marijuana is used to create extracts used in experimental epilepsy treatments. GW Pharmaceuticals hide caption
toggle caption GW Pharmaceuticals
Parents of children with severe epilepsy have reported incredible recoveries when their children were given cannabidiol, a derivative of marijuana. The drug, a non-psychoactive compound that occurs naturally in cannabis, has been marketed with epithets like Charlotte’s Web and Haleigh’s Hope.
But those parents were taking a risk; there has been no clinical data on cannabidiol’s safety of efficacy as an anti-epileptic. This week, doctors are presenting the first studies trying to figure out if cannabidiol actually works. They say the studies’ results are promising, but with a grain of salt.
The largest study being presented at the American Epilepsy Society meeting in Philadelphia this week was started in 2014 with 313 children from 16 different epilepsy centers around the country. Over the course of the three-month trial, 16 percent of the participants withdrew because the cannabidiol was either ineffective or had adverse side-effects, says Dr. Orrin Devinsky, a neurologist at the New York University Langone Medical Center and lead author on the study.
But for the 261 patients that continued taking cannabidiol, the number of convulsive seizures, called grand mal or tonic-clonic seizures, went down by about half on average. Devinsky says that some children continued to experience benefits on cannabidiol after the trial ended. “In the subsequent periods, which are very encouraging, 9 percent of all patients and 13 percent of those with Dravet Syndrome epilepsy were seizure-free. Many have never been seizure-free before,” he says. It’s one of several [at least four. checking] papers on cannabidiol being presented this week at the American Epilepsy Society meeting in Philadelphia.
25 of those patients were followed for a year-long study also presented at the meeting. Some of those patients did better, but one ended up doing worse. “A drug can induce an increase in seizures,” says Dr. Maria Roberta Cilio, a pediatric neurologist at UCSF Benioff Children’s Hospital who led that study. This happened with one of her patients. “For one particular child, the more the dose of [cannabidiol] was increasing, that increase was paralleled with an increase in seizure frequency,” she says.
Some patients in Devinsky’s trial also did worse while on cannabidiol, but he thinks there’s no way to tell if it was because of the drug or something else. He says we won’t know until a full clinical trial has run its course. Without that, the perceived effects of the drug might be a placebo effect or it could be some other confounding factor that hasn’t been caught in the study. What’s more, a few hundred patients isn’t a lot of patients, and doctors still need to see what will happen when a patient is on cannabidiol for more than a few months.
Epilepsy can be one of the most difficult syndromes to treat. About a third of patients have an intractable form of epilepsy. It’s common for children and adults with treatment-resistant epilepsy to exhaust the list of anti-seizure medications to little or no effect.
Jaren Hansen is a 7-year-old boy with Lennox-Gastaut Syndrome, a form of treatment-resistant epilepsy. When he was 2, he started having seizures. His doctors diagnosed him with epilepsy and started him on one anti-seizure medication. Then they added another, and then another.
Jaren Hansen, here with his mother, Nicole Hansen, has had seizures since he was 2. Courtesy of Nicole Hansen hide caption
toggle caption Courtesy of Nicole Hansen
None of them seemed to be working. “He tail spun again and had a tonic-clonic seizure every day. At that point, he was on three seizure medications, and we weren’t seeing any control. Things were just tumbling downward,” says his mother, Nicole Hansen from Necedah, Wisc. “At one point, blood levels of Depakote [an anti-epileptic medication] were toxically high. We needed to try something else. We were scared for his long-term health based on just the side effects of the medicine.”
Hansen, who works as a cranberry grower in Wisconsin, started researching her son’s illness. She found an online chat group with other parents who were discussing medical cannabis, and decided to try it. But it was difficult. States like Wisconsin do allow the shipment of cannabidiol supplements and oils that don’t contain tetrahydrocannabinol or THC, the psychoactive compound in marijuana, but most doctors won’t touch it. “They won’t even prescribe it because there are too many loopholes and too much work,” Hansen says.
Lack of physician input often leaves parents on their own, Hansen says. That presents more challenges. “You have to make sure the company can replicate the same product over and over. A small change in the ratio of THC to cannabidiol can cause the child’s seizures to increase or come back. You have to make sure there are no microbial issues like molds or funguses or pesticides.”
That people are treating themselves or their children with cannabis products is troubling to physicians. “It’s a very worrisome time. People go off and do their own thing, if things go wrong, you don’t know why. You want data, and you don’t have it, and all the families are just trying things,” says Dr. Brenda Porter, a pediatric neurologist at Stanford University School of Medicine who was not involved in the study.
Devinsky says parents either have to purchase the cannabidiol from an artisanal distributor of hemp products or compound the drug themselves. Either way, “the consistency from batch to batch is quite uncertain,” he says.
And people sometimes try different formulations from several companies in the hope one will work. “As a practitioner, I have had families move to Colorado, and many tried multiple different products,” Devinsky says. That makes it really difficult to tell what is or isn’t working. “As a doctor, I often don’t feel like I know which of many factors is contributing to a patient doing better or worse. We absolutely need rigorous, scientific data on this,” he says.
Even though the results presented at the American Epilepsy Society meeting look encouraging, researchers caution that there’s no promise cannabidiol is really going to work for many of these treatment resistant epilepsy syndromes. Until there is a full clinical trial done with a placebo-controlled element, Devinsky and others say it’s impossible to tell if cannabidiol is having a real effect on epilepsy. That takes time and puts parents in a difficult position, he says. “Parents are desperate and they feel the medical community has failed them, which is true in many cases.”
Hansen agrees with Devinsky; she feels that the clinical trials need to be finished as fast as possible. “There are parents out there doing whatever they can and experimenting with cannabis. We need the medical professionals so they can help make the proper recommendations,” she says. “But I can’t blame them for trying. When you are seeing your child dying, and knowing that you could do something to help them, how can you not do something as a parent?”
After Hansen put her son on cannabidiol he continued to have seizures, but the number of convulsive seizures went down. Then he caught a stomach flu, and things spiraled out of control. The tonic-clonic seizures came back, violently, and he nearly died. “They put him into am medically induced coma in hopes that it would reset his brain.” she says. “By God’s grace, truly, and by a miracle it did.”
Jaren is not on cannabidiol anymore. He’s on three different medications now, including a benzodiazepine and a barbiturate. “Both in the long-term can cause brain atrophy,” Hansen says. “At some point, we have to start weaning him off, and nothing else has worked. And he needs more than just cannabidiol.” She’s hopeful that cannabis research will bring the science to a point where doctors can begin looking into mixtures of cannabidiol and THC together.
Full on, randomized clinical trials testing cannabidiol for epilepsy are already underway, but it will still be some time until the results are out. Until then, Devinsky says, “Wait.”
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Maria Fabrizio for NPR
When Mae Lynn Reyes-Rodríguez was a graduate student in psychology at the University of Puerto Rico in the early 1990s, she learned there were no studies of how many Latinos suffered from anorexia, bulimia or binge eating disorder.
A quarter century later, research on eating disorders primarily remains focused on white women, says Reyes-Rodríguez, now a clinical psychologist at the University of North Carolina Center of Excellence for Eating Disorders in Chapel Hill.
“Eating disorders have the highest mortality of any mental health condition,” she says. “We need more research, especially clinical trials with diverse populations, because [right] now we are generalizing all research findings from Caucasians.”
According to the National Eating Disorders Association, eating disorders affect up to 30 million people in the U.S. — two-thirds of them women. While there is more recognition that eating disorders affect people of all races and ethnicities, Reyes-Rodríguez says racially and ethnically diverse communities don’t have equal access to treatments.
“We need to develop culturally sensitive treatments,” she says.
That’s exactly what self-described “chubby warrior” Gloria Lucas is doing. Her struggle with compulsive overeating began when she was 17. She also battled bulimia. But because talking about eating disorders was taboo in her Mexican-American community, her family didn’t know how to respond. “My parents didn’t have any clue [about my eating disorder],” she says. “They still don’t quite understand it to this day.”
Lucas, now 24, says therapy and traditional 12-step recovery programs were not “culturally relevant” for her. Many times, she says, the professionals did not understand cultural factors that can influence eating disorders among communities of color and indigenous and migrant women.
“Sometimes, immigrant parents try to guilt their kids into eating, even once they are full, by saying things like, ‘When I was growing up, I didn’t have this food. You have to eat it.’ They’re small messages, but they are deep,” she says.
“It’s something I have to unlearn — if I’m full, I don’t have to eat it all. That’s OK,” she says.
And Lucas notes that women of color can struggle with body image in a culture where prevailing beauty standards primarily value thin, white women.
Lucas founded Nalgona Positivity Pride, a “body positive” site for communities of color. Since July, Nalgona (which translates to “big butt” in Spanish) has hosted a semimonthly eating disorder support group in Los Angeles for people from diverse backgrounds.
Lucas’ work is especially important in a community that has negative associations with mental health treatment. Reyes-Rodriguez says that cultural and language barriers prevent many Latinas from receiving the care they need to recover from eating disorders, and cultural norms may be putting Latina women at particular risk for developing them.
“The majority of immigrant women, and some U.S.-born Latinas, are given cultural messages that they have to eat all the food on their plate,” Reyes-Rodriguez says.
In many Latino families, she says, food is also used to comfort children. “These cultural values could lead to losing the self-awareness of body cues to hunger and satiety, and potentially promoting distorted eating behaviors or binge eating disorder — which is one of the most prevalent eating disorders in the Latino population,” Reyes-Rodriguez says.
And yet, the misconception that eating disorders affect only white women is widespread — even in the medical community. As Slate reported last year, research has indicated that clinicians are less likely to diagnose eating disorders in women of color, further bolstering the myth that only white women get them.
Nalgona Positivity Pride is just one of many initiatives that aim to challenge this false notion. As with Latinos, few studies have been conducted on eating disorders among Asian-Americans and Pacific Islanders.
Lynn Chen, 38, wants to change that. She co-founded Thick Dumpling Skin, an organization that aims to “create a community for Asian-Americans to discuss their past, present, and future relationships with their bodies,” as the group’s website puts it.
Chen, a Cresskill, N.J., native raised by Taiwanese parents, says she received mixed messages as a child: She was encouraged to eat large quantities of food but remain skinny.
Growing up, she struggled with binge eating. During the worst times, Chen, an actress, would have what she called “last supper” days. She’d make sure she didn’t have anything scheduled and would begin eating starting in the morning and ending in the evening.
“It could have been carrots and hummus or cookies, whatever was easy to eat. Some days, I was on a set where there were snacks as far as the eyes can see. I’d be eating my feelings all day long,” recalls Chen. She wouldn’t purposefully purge, but there were a handful of times she began involuntarily throwing up for days.
“I have been binge eating my whole life,” Chen says, adding that she also struggled with anorexia after being cast in a soap opera in 2004. “The dieting became anorexia. I’d go through a period of binge eating and a period of starvation.”
Chen, like Lucas, hopes to bring awareness of eating disorders to diverse communities. By sharing her stories, she hopes young women can avoid the confusion and pitfalls she struggled with growing up.
She recently went on a five-day food tour in Taiwan. “I warned everyone, my white husband included… ‘They’re going to want to stuff you [with food]. It’s a cultural thing. You’re going to have to be OK saying ‘no,’ ” Chen recalled.
She says she felt the tour guide was shaming her for not eating all the food she was served. “I told her, ‘Listen, I have an eating disorder. I’m not eating more than I feel comfortable with.”
Carmen Cusido is a freelance writer based in New Jersey.
This story was produced in collaboration with Feet In 2 Worlds, an immigration journalism project of the Center for New York City Affairs at The New School.
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Lorenzo Gritti for NPR
Since 2003, strict rules have limited how long medical residents can work without a break. The rules are supposed to minimize the risk that these doctors-in-training will make mistakes that threaten patients’ safety because of fatigue.
But are these rules really the best for new doctors and their patients? There’s been intense debate over that and some say little data to resolve the question.
So a group of researchers decided to follow thousands of medical residents at dozens of hospitals around the country.
The study compares the current rules, which limit first-year residents to working no more than 16 hours without a break, with a more flexible schedule that could allow the young doctors to work up to 30 hours.
Researchers will examine whether more mistakes happen on one schedule or the other and whether the residents learn more one way or the other. The year-long study started in July.
“If we want to take the best care of patients now and in the future, we really need to understand much more about the intricate balance of hours, education and care,” says David Asch, a professor of medicine at the University of Pennsylvania who is leading the study.
But this study and a similar project have triggered objections from Public Citizen’s Health Research Group, an advocacy organization based in Washington, D.C., and the American Medical Student Association, which represents medical students.
The groups argue the studies put patients and residents at risk.
Sleep-deprived residents are more likely to injure themselves while doing procedures such as drawing blood, inserting intravenous lines or suturing wounds, says Michael Carome, who heads the health research group. The accidents could lead to infections with viruses such as hepatitis and HIV, he says. And tired residents tend to get into more car accidents after work.
He argues that the studies raise concerns about patients, too.
“Tired residents are more likely to make mistakes when they’re caring for patients,” Carome says. “And those mistakes in some cases can lead to catastrophic complications and even death.”
A well-known example is the 1984 case of Libby Zion. Zion was a college freshman who died at a New York hospital while being cared for by residents. Other cases in which patients were harmed or even killed by mistakes made by tired residents finally resulted in the new work rules which were adopted in 2003. These rules were revised in 2011, adding the 16-hour restriction for first-year residents.
Because longer hours are so risky, Carome argues, the studies are unethical, especially since the researchers are not being required to ask the residents or the patients for permission to include them.
“Patients are not being informed at all, so the patients are completely unwitting subjects of this research,” Carome says. “The residents are aware that they are in this trial, but they have no choice to participate unless they want to leave the residency training program.”
That’s the case for David Harari, a first-year medical resident at the University of Washington Medical Center in Seattle. He knew his hours would be grueling but says he was shocked when he discovered he may have to work 30 hours straight.
“I can’t see how anyone could work optimally with such little sleep,” Harari says. “It’s extremely difficult to stay awake, stay alert and function optimally at that level.”
Harari was offended by the fact he had no choice in the matter.
“Being asked to partake in a study in which I never provided informed consent felt extremely unethical and really uncomfortable,” Harari says.
Carome argues hospitals are pushing to relax the rules to save money. But Asch argues that the research is needed to determine which schedule is safest and teaches residents the best. Longer shifts may actually be safer than shorter shifts, he says, because shorter shifts can lead to more night shifts, which can be even more fatiguing than long shifts.
And, Asch says, mistakes often occur when residents have to hand off their patients to other doctors because a rigid schedule forces them to go home.
“The new doctor taking care of you never knows you as well as the doctor who was taking care of you before,” Asch says. Information handoffs are “like in a relay race — where the baton gets dropped between two runners. And it’s known as a critical point where medical errors are common.”
Asch also maintains that it isn’t practical to get consent from all the doctors and patients in the study. Some independent bioethicists agree.
“They’re asking important questions that we need to answer in order to create competent doctors, and I think they’re doing it in an ethically sound manner,” says Mildred Solomon, who heads the Hastings Center, a bioethics think tank.
The federal Office for Human Research Protections is reviewing the complaints about the studies, according to a spokesperson.
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An interior view of the plans for the Gaza children’s cancer treatment center. Courtesy of CEP Consultants hide caption
toggle caption Courtesy of CEP Consultants
The ongoing conflict in the Gaza Strip has damaged hospitals, clinics and other medical facilities, leaving major gaps in health care.
Children with cancer, in particular, struggle to get the proper treatment they need. They often have to travel to Israel or much farther.
So one American nonprofit — called the Palestine Children’s Relief Fund — aims to change that. The PCRF is building a large new pediatric cancer center in Gaza.
“We found a significant gap in the services that are available in pediatric oncology and hematology. Our organization wants to address those, because children who are suffering from cancer have virtually no care at all in the Gaza Strip,” Steve Sosebee, co-founder and CEO of the group, tells NPR’s Lynn Neary.
“As you can imagine … the most basic chemotherapy, pain management, palliative care and so on being unavailable in Gaza is just a huge burden on the health care system, on the families and most importantly, on the patients.”
On the challenges children and their parents grapple with in Gaza
The problem facing children in Gaza far exceeds just the issue of cancer. Children in Gaza face food issues, face educational issues, face health care issues on a much larger scale than just cancer. And our organization addresses those issues.
On what kids with cancer in Gaza must do for treatment under current circumstances
Most of the kids are referred outside, if they’re able to get outside. There is no free access in and out of the Gaza Strip. You must have a permit from the Israeli army to leave the Gaza Strip.
Now, Israel does issue permits for humanitarian cases to leave and to go to Israeli hospitals for specialized oncological care. It’s an extremely long and bureaucratic process, and it’s also a very challenging one for the patients and for their families, because now, a new order just came down that children cannot travel with anyone under the age of 55. So it’s a big burden for the families. You can imagine that means the grandmother has to go.
On the challenges of building the center, given the political situation
Let me first give you a little bit of background. We built the first and only public pediatric cancer department in the West Bank, in Bethlehem, about two years ago. The problem is that those children in Gaza are unable to get out on a regular basis, therefore we need to build services for them in the Gaza Strip. About half of the population of Gaza are children. So it’s a very poor and impoverished land.
The challenges that we face are extreme. The political challenges are that getting equipment in is under the regulation and control of the Israeli military. The government in Gaza is run by Hamas, which the U.S. government deems as a terrorist organization, so there’s no contact with them. And getting things like cement in, getting drugs in is very challenging and extremely difficult.
On how far along in the construction process they are
We just finished the initial stages of the design being finalized, choosing a contractor, and we’ll start building before the end of this month. …
We hope, in the best-case scenario, that it will be done within one year. But unfortunately the circumstances now on the ground throughout the occupied territories is extremely volatile, and we do hope that the situation in Gaza will not deteriorate.
All we can do is try to provide services based on the needs of the people and not prevent the realities of working on the ground there to stop us from doing what our role and responsibility is, as a humanitarian organization — which is to look beyond politics, look beyond the religion and look strictly at the needs of the children there and try to serve those needs to the best of our ability.
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