Who gets to decide if a disability is bad? This is one of the fundamental questions raised by a recent STAT feature on the genetic testing of embryos, which also looks at how that decision is reached. Andrew Joseph follows two women who knowingly pursue a pregnancy with an embryo that has a mutation that would put their child at a higher risk for certain cancers. It was the only viable embryo the couple had, so if they wanted a baby they didn’t have much of a choice.
Carey Purcell | Longreads | October 2017 | 4280 words (16 minutes)
Kasey Smith began gaining weight as a teenager. The numbers on the scale started increasing overnight, and no matter how few calories she consumed, they continued to go up. “It will even out,” she thought, crediting the change to puberty and hormones. But it didn’t, and her hair and skin began changing as well. “Something was definitely wrong.”
Each medical appointment, and there were many, concluded with doctors telling her to go on a diet. Smith (not her real name) remembers telling the endocrinologist about her frustrations with burning off the 900 calories she consumed each day and still gaining weight. “He looked at me and said, ‘Maybe you can cut back your McDonald’s to twice a week.’ I was stunned silent, and I went into the bathroom and broke down. ‘He doesn’t believe me. He thinks I’m just fucking with him.’”
As Smith’s weight went up, her food intake went down. Her mother signed her up for Nutrisystem, and her diet hung on the fridge for everyone in her family to see. Shame and humiliation narrowed her life down to three questions: what to eat, what not to eat, and how to burn more calories. She began to form dangerous habits, sometimes eating little more than lettuce.
Smith ultimately received a diagnosis of polycystic ovary syndrome, a hormonal disorder that can lead to excess male hormones, irregular menstrual cycles, and weight gain. She was prescribed Metformin and quickly began to lose weight, but the damage had been done. The 18-year-old developed anorexia, leaving for college at 130 pounds and coming back four months later and 30 pounds lighter, her hair falling out in clumps.
No one thought anything was wrong.
“I would go to the doctor, and there were no red flags. It was ‘You look fantastic!’ Not ‘This is alarming.’” Smith continued starving herself for another year until she ended up in the hospital, undergoing a colectomy to remove a foot and a half of her intestines, which had twisted as a result of her severe calorie restriction.
One year after the surgery, her worst nightmare returned: She was gaining weight. Celiac disease was the cause this time, but it wasn’t diagnosed until after Smith was in the habit of purging the little food she ate every day. She would regularly run in the park and pass out afterward. “I would starve all day, then I’d eat something at night, then I would purge it. In my head, I’m thinking, ‘I’m literally not consuming anything. The weight has to fall off.’”
She realized she needed professional help, and Smith found a therapist who specialized in eating disorders and began treatment at The Renfrew Center, a residential facility in Pennsylvania. She continues to struggle with discussing her weight at medical appointments. After she told her endocrinologist about her treatment at Renfrew, his reply was “I see you need to lose some weight.”
* * *
According to the National Association to Advance Fat Acceptance, one out of three doctors responds to obesity negatively and associates it with poor hygiene, hostility, dishonesty, and noncompliance, viewing fat patients as “lazy, lacking in self-control, non-compliant, unintelligent, weak-willed and dishonest.”
“Doctors may think they are doing their jobs by focusing on patients’ weights,” said Dr. Rebecca Puhl, deputy director of the Rudd Center for Food Policy and Obesity. But the effects of weight discrimination, both physical and mental, can be harmful to patients. “I do see this in health providers just as much as the general population, which is that maybe stigma isn’t such a bad thing. Maybe it will motivate people to lose weight. Maybe it will provide incentives for weight loss. But that is not what we see in research. We see the opposite — that in fact, stigmatizing people about their weight actually reinforces behaviors in health that increase body weight and obesity.”
The doctor looked at me and said, ‘Maybe you can cut back your McDonald’s to twice a week.’
As weight discrimination has increased in recent years — roughly 40 percent of adults report having experienced some form of weight stigma — so have obesity rates. A positive correlation between experiencing weight bias and developing eating disorders has been documented, and two studies have reported that overweight children are more likely to binge after being teased about their weight. Nor do these habits change as we age. In a 2006 study of more than 2,000 overweight and obese women who were part of a weight loss support group, 79 percent said they turned to food after experiencing weight stigma. Another common response: refusing to diet.
Johanna Tan encountered that stigma when she gained 80 pounds in three months after beginning the hormonal birth control Depo-Provera. Her doctor suggested weight loss, and she chose a weight loss clinic. In the weeks after undergoing her doctor-mediated diet of 500 to 800 calories a day, Tan began experiencing episodes of chest pain so severe she made more than one trip to the emergency room. Her general practitioner blamed her symptoms on her large breasts. “Never mind that my boobs have always been this big, and this was a new symptom,” Tan said, laughing wryly as she explained she had been performing special exercises and getting massage treatments to help ease the symptoms. But it wasn’t her breasts that were causing the pain, it was her gallbladder. Gallstones had blocked her common bile duct, and if left untreated it could cause acute liver failure. The cause of the gallstones? Rapid weight loss. Neither Tan’s weight gain nor her loss had been correctly assessed by her doctors. (Depo-Provera lists weight gain as a common side effect. When Tan voiced concerns to one doctor, she was told, “Everyone gets more hungry. You just need to not eat more.”)
The assumption that any health issues a fat person experiences can be chalked up to weight has not gone unnoticed by the fat community. Marilyn Wann was motivated to pursue fat activism after what she describes as her Really Bad Day, when a man she was dating told her he was embarrassed to introduce her to his friends because of her weight, and she was denied health insurance because Blue Shield of California deemed her morbidly obese.
“This double whammy of social and institutional exclusion based on my weight woke me up,” she said. “Until then, I had hoped to avoid the impact of anti-fat attitudes by avoiding the whole topic. But hiding and silence and avoidance didn’t keep the yuck from finding me. So I recognized that I had to come out as a fat person. The next day, I went to a copy store and made up business cards for my new print zine, which I decided to call FAT!SO? — ‘For People Who Don’t Apologize for Their Size!’ Immediately, my life became less stressful. Of course, I still encounter anti-fat attitudes and weight-based exclusions, but I have drawn a line between me and the hatefulness. It makes a huge difference.”
Wann still experiences bias, especially at the doctor. “I know before I enter the door that the whole system prioritizes its prejudice over my well-being,” she said. “The prejudice is what’s necessary to the institution as it stands. The medical establishment, the insurance agencies, public health agencies that are government-based have always advanced their agenda on the back of fat people. … The institutions of our supposed health systems — in the government agencies, in the insurance companies, in all of the medical practices — are saturated or have deeply ingrained anti-fat bigotry.”
Establishing the balance of information and compassion while discussing a patient’s weight is constantly on Rebecca Zuckerman’s mind. “It puts medical professionals in a weird catch-22,” said Zuckerman, a fourth-year medical student at the Pritzker School of Medicine at the University of Chicago, who understands the motivation of fat activists but whose education includes the negative medical impacts of obesity. “It’s something I’ve struggled with personally. You can only explain it and tell people their options. You can ask if it’s OK to talk about weight loss or give more information. If they say, ‘No, I don’t want to hear it,’ you have to respect that.”
Still, the intense schedule of medical professionals, who are often allotted only 15 to 20 minutes per patient, often results in less-than-ideal communication. It’s easier to reach for the quickest conclusion: telling the patient to lose weight. Says Zuckerman, “A lot of doctors and nurses experience burnout, and they start losing empathy and don’t view the patients as people anymore. Your hands are tied to stay within those 20 minutes. Everyone’s trying to make more money, and the doctors are a cog in the wheel.”
That’s along with pervasive stereotyping about fat people in the medical community. In a study of 318 family physicians, two-thirds reported that their obese patients lacked self-control, and 39 percent stated that their obese patients were lazy. Even health care professionals specializing in nutrition thought poorly of their obese patients: “Attitudes toward obesity and the obese among professionals,” a study in the Journal of the American Dietetic Association, reports that 87 percent of health care professionals specializing in nutrition believe that obese persons are indulgent, 74 percent believe that they have family problems, and 32 percent believe that they lack willpower. In 2013, the American Medical Association labeled obesity a disease.
The misdiagnoses that occur lead directly to poor health outcomes. Johanna Tan ultimately spent three years in pain, leading to four weeks of hospitalization, a series of invasive surgical procedures, and lengthy rehab — procedures that wouldn’t have been necessary had the gallstones been caught earlier. While she was enduring severe pain following her first surgery and struggling to complete her postsurgical rehab, the hospital staff accused her of being lazy. “I spent two weeks in hospital post-surgery,” she said, “copping abuse for being lazy and not participating in my own rehab, before they realized they fucked up.” Tan said the nurses were condescending, saying, “I know it hurts. It’s major surgery. You still have to get up.” The pain didn’t ease until her doctors realized they had missed some gallstones and had to perform a second surgery. Tan wasn’t able to walk more than 10 feet at a time for the first month following her surgeries. It took six months for her to be able to walk further than a block.
* * *
Fat patients also often find themselves facing off with doctors who refuse to write prescriptions or referrals until patients lose an arbitrary amount of weight, a common scenario for those seeking joint replacement surgery. Despite being in “crazy amounts of pain,” Melinda Belles-Preston was required to lose 30 pounds before receiving an operation on her hips. Losing between one and two pounds a week, a healthy pace according to the Centers for Disease Control, would delay her surgery by several months. Heavier patients see longer lags. A required loss of 50 to 100 pounds can postpone a procedure for months or even years unless the patient undergoes weight loss surgery. Without surgery, the time spent in pain is prolonged, opening the door to painkiller dependence. It took Belles-Preston roughly six months to lose the weight, and she was in pain the entire time.
“Going in nutrient-deprived and starved is probably not a good way to send someone into heart surgery or major any surgery,” Wann said; her tone made it clear she was stating what she thought should be obvious. “Someone who’s been losing weight may have worse outcomes than someone who’s stayed the same weight. … It’s amazing how someone can just look at you and decide how a random number of pounds can shift you from someone who doesn’t deserve care to someone who does.”
Pain management was barely discussed when Virgie Tovar, activist and author of Hot & Heavy: Fierce Fat Girls on Life, Love & Fashion, went to the doctor after being injured on an amusement park ride. Suffering what she described as “debilitating back spasms” that made movement “electrifyingly painful,” she was told she had to lose weight before anything could be done for her. “It was like this dogged commitment to not helping me until I was at a different weight,” she recalled. “Let’s say I lose weight at what is considered a normal pace that doesn’t endanger a person’s life. For me to get to the weight you’re talking about is like 10 years. So I just get to be in pain until I’m at that weight. And if I’m still in pain after a decade of weight loss, then you’ll think about taking care of this?”
Ideally, preventive care helps patients avoid catastrophic health problems, but it’s not always accessible to fat patients, whether because of issues with doctors, issues with technology, or both. Fat patients have been refused medical screenings, such as Pap smears, mammograms, and colonoscopies, that are considered routine and vital for thin patients. The American Cancer Society advises women to get mammograms yearly beginning at age 45 and colonoscopies every 10 years beginning at age 50, but fat people often struggle to find facilities that will perform the screenings and are told they cannot fit in the machines.
A required loss of 50 to 100 pounds can postpone a procedure for months or even years… It took Belles-Preston roughly six months to lose the weight, and she was in pain the entire time.
The importance of an MRI comes from its ability to provide higher-quality images. But the machines that provide those images are small, and other options, like CAT scans or ultrasound, don’t provide a comparable alternative. “All those scans need to penetrate the body to create an image. If a body is larger and has more fat tissue to penetrate, the image quality is poorer and blurrier, and it’s harder to make out structures,” Zuckerman explained. “It’s harder for skilled radiologists to diagnose things in patients who are larger for that reason. … The fact is, MRI machines are tiny. Some people literally cannot fit in them. So we do something else like an ultrasound or CT that is not quite as good. It’s better than nothing, but it doesn’t give us the image quality that an MRI does. You run the risk of missing something because the picture that you’re getting is not clear.”
The need for hospital equipment that can accommodate fat people has grown, and imaging devices are now available. This equipment is not available everywhere, however, and sometimes patients are referred to their local zoos. When Wann called the San Francisco Zoo’s medical department to ask about accessing its technology, the person on the phone sighed and said, “I wish people would stop saying that,” referring to requests to use the department’s CT and MRI scanners. While vet schools and zoos have larger-capacity devices, they can’t allow human subjects, and scanning humans in machines intended for animal subjects is banned by formal policies in most facilities. “That’s really beyond their certification,” explained Wann. They’re not licensed as an institution to practice medicine on people. Their entire institutional certification is being put on the line because our human medical system refuses to accommodate people above a certain size. It draws an arbitrary line and says, ‘Go beyond this line, and they’re monsters.’”
Without being properly screened, patients can’t be diagnosed. A 2008 review of previously published studies, 32 in total, reported that white, female, obese patients were less likely to be screened for breast and cervical cancer. A study from 2006 reported that only 68 percent of women with a BMI of greater than 55 were given Pap tests, while 86 percent of other women were tested.
In some cases, this is a result of fat patients opting out of health care entirely, even if they otherwise have the ability to access health care facilities and are insured: According to the International Journal of Obesity, 19 percent of participants reported that if they felt stigmatized about their weight by their doctor, they would avoid future medical appointments, and 21 percent said they would seek a new doctor.
“Fat people don’t go to the doctor often. They tend to avoid it,” writer and activist Kitty Stryker said. “A lot of fat people are ashamed of being naked. They don’t want to be touched. When I say I have a lower-back problem, I know they’re going to say, ‘Lose some weight, and that will go away.’ So what’s the point? Why bother continuing to try to get to the root of my health problems when I know the only thing they will ever tell me is ‘Lose weight’?”
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Patients often face added risk beyond concerns of being dismissed or the necessary treatment being denied: the possibility of weight loss treatments and procedures being strenuously suggested at inopportune or irrelevant moments. While the American Academy of Family Physicians recommends screening for obesity along with monthly sessions of counseling and behavioral interventions, the timing of these suggestions is crucial to the impact of motivational interviewing — and execution is often poor. Tan was mid-Pap smear when her doctor asked if she wanted a Weight Watchers pamphlet.
“The speculum’s already in and open. And she says, ‘I can tell you’re getting upset. Do you want me to continue?’” Tan recalled in disbelief. “I said yes because I didn’t want to have to make another appointment for my Pap smear. I was so mad, I was crying at this point. I couldn’t move. I couldn’t yell. She said, ‘I can tell I’ve made you upset, but weight is a serious issue.’”
Although familiar with the prejudice that came with her weight, Belles-Preston was still shocked when her general practitioner recommended weight loss surgery — while she was pregnant. “I walked out of the room. It was so incredibly offensive to me. I’m coming to you for medical advice about my pregnancy, and you’re talking to me about weight loss surgery, which is the furthest thing from my mind.”
“I have tons of resources and attitudes for confronting this kind of stuff, and it can still kill me,” Wann said as I marveled at her calm approach to discussing prejudice so severe it can result in death. “I understand not going [to the doctor]. I think it’s self-protective to some extent.… Every time I go to any kind of medical appointment I anticipate facing weight bias. I anticipate being denied the sort of services thin people would receive with no problem or being targeted for weight-based treatments that I don’t want and could harm me. I’m not interested in stomach amputation or stomach squeezing. I don’t think those are therapeutic practices in any sense. Every time I go see a doctor I’m aware they may casually say the only thing they want me to do is have my stomach cut off.”
* * *
The effects of that bias were traumatizing and long-lasting for Tan. Triggered by her uncomfortable experiences in hospital environments, Tan’s first job as an audiologist after graduate school provoked frequent panic attacks because of its location at a hospital. “I used to have to go to work early so that I could tamp down the panic associated with being in a hospital at all,” she said. “This fear of hospitals hasn’t quite gone away. Most recently, a few months ago, we had to spend a few days in ICU as my partner’s dad passed, and just being back in ICU rattled me so badly it was a month before I could stop popping several Valium a day.”
It was the adversarial relationship she had developed with doctors and nurses that contributed to Tan’s panic. And she’s not alone. For many, thin means healthy and fat means unhealthy. So small and slender equates with good health and is encouraged by medical providers, often resulting in strained relationships with their patients.
The idea that the lower the weight, the healthier the person, escalated into life-threatening conditions for Smith, who was frequently complimented on how healthy she looked while she was starving herself. “When you’re restricting [calories] you can brag about it,” she said, recalling her preparation for the colectomy. “[Doctors] asked, ‘Are you eating well and exercising?’ I said, ‘I’m very healthy. I exercise all the time. I only eat vegetables.’ It’s a funny dichotomy. Just because the scale is low does not mean that you’re healthy. A lot of doctors forget to be careful of that.”
But as the number on the scale climbs, the less flattering characteristics — greed, lack of control, messiness, lack of self-care, laziness, automatic unhealthiness — are associated with fat people, only to be furthered by the media’s portrayal of fat characters, who are typically the butt of jokes or seen as slovenly and undesirable. Women are often the punch lines, much more than men. BMI standards also are more harsh for women than for men, which is apparent in the statistics regarding weight loss surgery: Obesity rates in America are split fifty-fifty between genders, but 80 percent of bariatric surgeries are performed on women. In a 2014 study from Kansas State University, 72.8 percent to 94 percent of overweight and obese men were satisfied with their health as compared with 56.7 percent to 85 percent of overweight and obese women. There’s a reason all the stories and sources here are about and told by women.
“The truth is that there are reasons why fit people live longer, better lives,” Tovar said. “It’s because the entire culture is constructed to benefit them.” Weight discrimination is associated with an increase in mortality risk of nearly 60 percent for both women and men.
Fat activists are working to provide recourse at the community level; patients share the names of fat-friendly doctors or establishments, and Wann uses her social networks to help people get referrals for doctors and other medical providers. She also assists people with planning responses to doctors and providers who inflict weight bias. Fat activist Stef Maruch maintains a list of doctors who do not inflict bias or are fat positive, and Wann encourages people to update it whenever they can. NAAFA also publishes brochures and tool kits to assist fat people in navigating bias and fighting anti-fat legislation. A monthly newsletter updates recipients with the latest research and provides referrals to practical tools like products made for people of size. After Hurricane Harvey devastated Texas, NAAFA released a special-edition newsletter and sent plus-size clothing and supplies.
Obesity rates in America are split fifty-fifty between genders, but 80 percent of bariatric surgeries are performed on women.
The organization has also updated the brochure it gives health care providers treating fat patients. It was last updated in 2011, and per the recommendation of one of NAAFA’s advisers, its language is being revised to be much more aggressive when discussing weight bias with medical professionals. “Up until this point we’ve been trying to inform and be a little bit gentle,” explained Peggy Howell, NAAFA’s vice chairman and public relations director, citing the research scientists, Ph.D.s, and professors in medicine, law, nutrition, social work and more who serve on NAAFA’s advisory board. “The advisers came back and said, ‘I think we need to take a different approach. I think we need to be more assertive about this. There are lots of studies that support that this bias does more harm than good to the patients.’” The nonprofit’s 2011 brochure states, “NAAFA is working to help ensure that health care providers provide the best possible care by keeping in mind the special needs of their fat patients.” The new brochure reads, “We currently live in an environment that stigmatizes anyone who does not meet the aesthetic or medically defined categories of an ‘attractive’ or ‘healthy’ weight… [it] creates and sustains fat phobia and oppression, which includes weight bias, prejudice, stigma, discrimination, bullying, violence, and cultural imperialism. … Sometimes the internalized biases of health care providers directly contribute to further stigmatization of fat people.”
There is some movement on the medical end as well, driven by health care providers seeking training and resources. The Rudd Center has developed educational videos, which have been tested and found to reduce weight bias. Viewing the two 17-minute films — “Weight Prejudice: Myths and Facts” and “Weight Bias in Health Care” — resulted in improvement in attitudes toward obese people. The Rudd Center has also created a media repository of 400-plus photos and more than 80 B-roll videos that portray children and adults with obesity in non-stigmatizing ways, intended as a resource of respectful, rather than stereotypical, images for the media as well as scientists and health professionals to use when making educational presentations.
“We’ve created online courses and all different kinds of resources to use to try to increase awareness about this issue and educate providers that this is more than a social justice issue,” Puhl said. “This is a full public health issue. The stigma is making their patients’ health worse.”
For many fat people, the response is too little, too late. “I would rather doctors have signs on their door saying, ‘I don’t treat fat people,’” Wann said. “It would save everyone time and money if they had a sign on their door that said, ‘No fatties.’ At least they would be honest and own their bias.”
Carey Purcell is a New-York based writer who covers culture, politics and current events from a feminist perspective. She has been published in The New York Times, Vanity Fair, Politico and other publications. She has been a featured guest on AM Joy and Good Morning America, and her writing can be read at CareyPurcell.com.
Even if you were more partial to the taste of purple Dimetapp cough syrup or the fake banana flavor of some prescription whose name I can no longer remember, you know the flavor of pediatric amoxicillin. Everyone loved that pink medicine. Its chalky, anonymous fruit flavor has generated loving blog posts and subreddits of impressive lengths. One writer loved it so much as a kid she went on a quest to taste it one more time. At The Atlantic, Julie Beck searches for that peculiar pink flavor of childhood to learn where it came from and how taste shapes a child’s experience of illness.
Taste is a factor in children’s medicine in a way that it’s just not for adults, who are prescribed pills for most things. And children often need the extra enticement of a familiar flavor to be coaxed into taking their medicine. But flavor used to be considered a more integral part of medicine for all ages—more than just something added to make it palatable.
Under the humoral theory of medicine, Berenstein says, “tastes themselves were correlated with the body’s humors.” So if someone’s four humors—black bile, yellow bile, blood, and phlegm—were seen to be out of balance, they’d likely be advised to avoid certain tastes, and eat more of others. A melancholic person, for example, might want to avoid vinegar (sour—just like them), and eat more sugar to balance themselves out. “It wasn’t about a spoonful of sugar making the medicine go down,” Berenstein says. “A spoonful of sugar was the medicine.”
And for bitter herbal preparations that served as medicine, Greene adds, the bitter taste was “proof of efficacy”: If it tastes gross, it must be working. But in the 20th and 21st centuries, the Western understanding of medicine came to focus on active ingredients. What Greene calls “the sensuous dimensions of medicine” got “systematically written out of the stories we tell ourselves about pharmaceuticals and the way they work.” But medicines “nonetheless have physical properties,” he says, “and those physical properties certainly influence our experience of them.”
Some physicians in South Korea are working to understand the differences in healthcare across the DMZ and health issues North Korean defectors face, in preparation for eventual reunification — not easy when the medical tools Northern Korean physicians have are so drastically outdated and when support for reunification is dropping in the South. At Undark, Sara Talpos talks to the doctors trying to bridge these gaps.
The practice of medicine is sharply different in the two countries. In North Korea, the focus is on infectious disease and physical trauma, often caused by coal-mining injuries. Doctors learn only the basics of other diseases because specialized medicines and equipment — chemotherapy for cancer, for example — simply aren’t available.
Ko laughs when I tell him I’ve heard North Korean X-ray images are so poor that a South Korean doctor wouldn’t be able to understand them. “Yes, that’s true,” he says, sipping a cup of coffee. We’re meeting at Steff Hotdog, a fast-food restaurant located, somewhat improbably, inside Anam Hospital. “That’s because they don’t have X-ray film.” Instead, the doctor takes the patient into a dark room, where the patient stands between the X-ray machine and a translucent screen. Ko borrows my pen to illustrate. His doctor sits hunched over on a stool like Rodin’s “The Thinker.”
What exactly does a bullet do to flesh as it careens through the body? At Highline, Jason Fagone profiles Philadelphia trauma surgeon Dr. Amy Goldberg, a woman on the front lines of gun violence as she attempts to repair the broken bodies that arrive daily at Temple University Hospital. Dr. Goldberg doesn’t only fix the damage, she’s also working to prevent it. After a patient died the third time he was shot, she worked with friend and coworker Scott Charles to create a social program, Turning Point, which has been instrumental in stopping gun violence before it starts.
More than 30,000 people die of gunshot wounds each year in America, around 75,000 more are injured, and we have no visceral sense of what physically happens inside a person when he’s shot. (Dr. Amy) Goldberg does.
“The creation of a person, you know. It’s the heart beating and the lungs bringing air. It is so miraculous.” Surgery, for Goldberg, was a way of honoring the miracle. And trauma surgery was the ultimate form of appreciation, because a surgeon in trauma experienced so much variety. She might be operating on the carotid artery in the neck, or the heart in the chest, or the large bowel or small bowel in the abdomen, or the femoral artery in the thigh, at any given moment, on any given night.
“As a country,” Goldberg said, “we lost our teachable moment.” She started talking about the 2012 murder of 20 schoolchildren and six adults at Sandy Hook Elementary School. Goldberg said that if people had been shown the autopsy photos of the kids, the gun debate would have been transformed. “The fact that not a single one of those kids was able to be transported to a hospital, tells me that they were not just dead, but really really really really dead. Ten-year-old kids, riddled with bullets, dead as doornails.”
If you’ve ever gotten a medication injected or had a medical device implanted (think artificial knee replacement), you owe a debt of gratitude to the horseshoe crab, whose bright blue blood is a magic bacteria-finding beacon used to detect sterilization-resistant toxins in injectables and implantables.
How do we get all this crab blood? By catching crabs, draining a third of their blood, and tossing them back into the sea. Is this sustainable? No one really knows, yet — but hopefully, we will soon. Caren Chesler, in Popular Mechanics, explores the plight of the humble horseshoe and the researchers trying to help.
To that end, these two scientists are putting this strange catch to the test. The pair took 28 horseshoe crabs from the Great Bay Estuary behind their lab, left them out in the heat, then drove them around in a car for four hours and then left them in containers overnight to simulate what might happen in a bleeding facility. Then they bled half the crabs (so they’d have a control group that wasn’t bled). All of the crabs remained in containers a second night, as would likely happen at a bleeding lab. The following day, Owings and Watson put $350 transmitters on their backs, attached them snugly with little zip ties, and put the crabs back into the bay to see if they could make their way. What they find might have a lot to say about the future of this odd routine.
In the introduction to her story on deep-brain stimulation for Pacific Standard, Sarah Scoles tells the story of Liss Murphy, a woman with treatment-resistant depression—in her words, a “sepsis of the soul”—who saw deep-brain stimulation as her last opportunity to live a normal life. The moment doctors turned on the stimulating current was a life-changer. But then they had to turn it off.
The doctors installed the electrodes and turned them on.
For Murphy, the moment was astonishing. A warmth surged through her. Everything felt lighter, clearer. But then those sensations stopped. The doctors had cut the current so that they could finish wiring the circuit, close her cranium back up, and insert the permanent pulse generator into her chest
After the surgery, Murphy spent a few days in recovery, and then the doctors sent her home. She would need to heal for three weeks, they told her, before they could turn her device back on. Back at home, returned to the gray world of her depression, Murphy remembered that warm, light, clear feeling. I wish that could be forever, she thought.
Another woman, who lives in Atlanta, said she was misdiagnosed with scabies, and then humiliated in a hospital corridor by a doctor shouting that she was psychotic. She agreed to see a psychiatrist, but is still convinced that her skin is covered with bites. When she scratches, red, black, or white specks come out; they look like roach turds or eggs, she said. “Anybody with eyes can’t help but see it.”
For another Atlanta woman, a psychiatrist recognized the problem behind her itchiness and her obsessive cleaning, but those appointments haven’t helped. “She wants me to cut down on the cleaning … but in my mind I can’t stop, because if my kids start getting more attacked and I haven’t cleaned …” she said over the phone. “I’m sitting here right now and I feel things crawling all over my feet. I’ve been tested for neuropathy, MS, and cancer. I’ve been tested for everything.”
By now, she hopes the condition is psychological; she just can’t convince herself of it. “It’s ruined my life,” she said. She began to cry.
In STAT, journalist Eric Boodman profiles the etymologists who have the unusual task of helping the public deal with all kinds of insect-related issues, including working with people who suffer from insects scientists cannot find. It’s part of an increasingly-recognized condition known as delusional parasitosis, or DP, and neither science nor medicine understand much about it.
I think of endometriosis as a uterus gone rogue; instead of simply receiving and disposing of eggs, the uterus decides it wants to send things via the fallopian tubes, too. But because ovaries don’t have the capacity to receive anything, the uterus posts the only junky gift it’s got — uterine wall cells — up the fallopian tube. When the ovaries can’t accept those cells, they flow out into the abdominal cavity, where everything is showered in Essence of Uterus, like confetti at a wedding.
– Writing in The Toast, Rosanna Beatrice’s “Reckless and Hopeful Subservience” takes us through the discomfort, confusion, and anger of being diagnosed and dealing with endometriosis, a painful reproductive disorder with mysterious origins, and no cure.
Louis Picker, an immunologist at Portland’s Oregon Health & Science University, believes he’s working toward a vaccine to prevent and cure AIDS: “I think within 15 years we’ll have both.” In 2013, his vaccine research showed the first evidence of monkeys eradicating the AIDS-causing virus from their bodies; he inoculated them with weakened CMV — or cytomegalovirus, an infectious agent in the herpes family — which not only pumped up their immune systems and fought off the virus, but killed it off entirely. At Portland Monthly, Jennifer Abbasi profiles the ambitious researcher, whose project’s first human study is set to begin later this year.
Picker set out to prevent AIDS, not cure it. In 2006, he and his team began vaccinating macaques against SIV, the monkey version of HIV. The researchers placed bits of SIV genes inside weakened CMV, hoping the macaques’ immune systems would then mount their natural immediate, large-scale response to CMV. “The immune system will make a response both to the CMV genes and to the SIV or HIV genes that will be in the same flavor, so to speak,” Picker explains. This approach contrasts sharply with that of most HIV vaccine projects, which typically focus on generating antibodies to block infection. Instead, Picker’s method aims to provoke T cells to prevent an infection from progressing to disease. Two years after he inoculated the first group of monkeys with the CMV-based vaccine, he exposed them to SIV.
In 2013, Nature reported Picker’s surprising findings: not only were most of the macaques able to control SIV, but over time their immune systems completely killed off the virus. It was the first evidence of monkeys eliminating the AIDS-causing virus from their bodies. Says Koff: “Louis straddles the prevention and the cure. The most intriguing thing about his vaccine is that the responding animals appear to clear the infection.”