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  • Zero Lead Is an Impossible Ask for American Parents

    Zero Lead Is an Impossible Ask for American Parents

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    Over the past eight months, I’ve spent a mind-boggling amount of time and money trying to keep an invisible poison at bay. It started at my daughter’s 12-month checkup, when her pediatrician told me she had a concerning amount of lead in her blood. The pediatrician explained that, at high levels, lead can irreversibly damage children’s nervous system, brain, and other organs, and that, at lower levels, it’s associated with learning disabilities, behavior problems, and other developmental delays. On the drive home, I looked at my baby in her car seat and cried.

    The pediatrician told me that we needed to get my daughter’s lead level down. But when I began to try to find out where it was coming from, I learned that lead can be found in any number of places: baby food, house paint, breast milk, toys, cumin powder. And it’s potent. A small amount of lead dust—equal to one sweetener packet—would make an entire football field “hazardous” by the EPA’s standards.

    My husband and I spent nearly $12,000 removing highly contaminated soil from our backyard, replacing old windows, and sealing an old claw-foot bathtub. We mopped the floors at night, obsessively washed our daughter’s hands, and made sure to feed her plenty of iron, calcium, and vitamin C, which are thought to help limit the body’s absorption of lead. Four months later, when we went back to the pediatrician, her lead levels had sunk from 3.9 micrograms per deciliter of blood to 2.2 mcg/dL. That was better, but still far from zero. And according to the CDC, the World Health Organization, and the Mayo Clinic, zero is the only safe amount of lead.

    We’re one of thousands of families who have gone through that ordeal this year. At least 300,000 American children have blood lead levels above 3.5 mcg/dL, the CDC’s so-called reference value. But parents are largely left on their own to get lead out of their kids’ lives. Families who can afford an abundance of caution can sink tens of thousands of dollars into the project. And they still might never hit zero.

    When Suz Garrett learned that her 1-year-old son, Orrin, had four micrograms of lead in every deciliter of his blood, she and her husband waited for guidance from their doctor or the county health department, but none came. So they sent Orrin to stay with family while they repainted their 19th-century Richmond, Virginia, house and covered the open soil with mulch. Band-Aids like these are cost-effective, but every time you pry open an old window, or your dog tracks in dirt from the neighbors’ yard, invisible specks of lead dust can build up again.

    For nearly a year, the Garretts cleaned religiously. Orrin’s blood levels are still detectable—currently, he’s at 2.1 mcg/dL. Garrett and her husband are fed up. In a few months they’re moving to a new house, one they took out a $200,000 construction loan to renovate. “We ended up gutting it so we would know there’s no lead paint,” Garrett said.

    A few years ago, children like Orrin Garrett and my daughter wouldn’t have been a cause for concern. Until 2012, children were identified as having a blood lead “level of concern” at 10 mcg/dL or more. But for the past decade, the CDC has used a reference value to identify children who have more lead in their blood than most others. The reference number is based on statistics, not health outcomes. When most children tested below 5 mcg/dL, the reference level was five. Today, it is 3.5.

    The reference level has trended down along with lead exposure, which has dropped by 95 percent since the 1970s thanks to policies that removed lead from gasoline, paint, plumbing, and food. But confusion and concern about what classifies as lead poisoning has risen.

    Scientists and public-health officials still can’t say exactly how low lead exposure needs to be to prevent damage for any individual child. When Kim Dietrich, an epidemiologist and a developmental neuropsychologist, started his career in the ’70s, the general consensus was that levels above 40 to 60 micrograms took a significant toll on the developing brain. But work by Dietrich and others showed that harm can be caused at much lower levels. In the early 2000s, pooled data from seven large studies from around the world, including one Dietrich conducted in Cincinnati, showed that an increase in children’s blood-lead concentration from 2.4 to just 10 mcg/dL corresponded with a four-point drop in their IQ. That’s a scary prospect. But, Dietrich told me, “it’s very important not to confuse findings from these large population-level studies with individual impacts.”

    Discerning the effect of low lead levels—below about 10 mcg/dL—on cognitive health is an extremely complicated issue. “If you’ve got a blood alcohol content of 0.2, you’re likely to be horribly dangerous behind the wheel no matter who you are. Lead is a little bit different. Your child’s two might be worse than my child’s 10,” Gabriel Filippelli, a biogeochemist who studies lead exposure in urban environments, told me. Part of the variation in outcomes could be the result of factors we still don’t understand, like a child’s genetic makeup.

    Policing low levels of lead exposure in children costs parents both financially and emotionally. Mary Jean Brown, the former chief of the CDC’s Healthy Homes and Lead Poisoning Prevention Program, told me that concerned parents should be careful not to create a self-fulfilling prophecy. “Most children will not exhibit any symptoms when they have blood levels of 5 or 10 micrograms per deciliter,” she told me. But “if the mother or someone else says, ‘Johnny’s not like everybody else,’ pretty soon, Johnny isn’t like everybody else.”

    This type of anxiety is familiar to Tanisha Bowman, a health-care worker in Pittsburgh who has spent nearly three years trying to lower her daughter’s blood lead levels. They initially peaked at 20 mcg/dL, and have ranged from two to six over the past year. “There was never anything wrong with her. She was always measuring four to six months ahead,” Bowman said. But it was impossible not to read scary headlines about lead and assume they applied to her daughter. When she had tantrums around the age of 2, Bowman started wondering if she had ADHD, which is sometimes associated with lead exposure. “I will never know what impact, if any, this had on her. And nobody will ever be able to tell me,” she said. (Bowman’s daughter has had no diagnosis related to lead.)

    In the absence of a specific, outcome-based number to help parents decide when to worry, a mantra has emerged among doctors, reporters, and health institutions: There is no safe level of lead. Filippelli said that he’s used the catchphrase, but it’s a bit misleading. “There is no valid research source to support the ‘No amount of lead exposure is safe’ idea, beyond that fact that to avoid the potential of harm, you should avoid exposure,” he explained in an email.

    As well intentioned as the guidance might be, avoiding all exposure is an impossible quest. Tricia Gasek, a mother of three who lives in New Jersey, tried desperately to locate the source of lead in her children’s blood. She spent $1,000 hiring a “lead detective” to test her home with an XRF device and getting consultations with experts, plus another $600 replacing leaded lights on the front door. Ultimately, she learned that she also had elevated levels and concluded that the lead in her son’s blood was coming from her breast milk—possibly, her doctors thought, from exposure she had as a child. The process was exhausting. “It’s just crazy. Why am I the one figuring all this out?” she says.

    Parents simply can’t get to zero without help. Lead is invisible and pervasive. Although the Flint, Michigan, water crisis and recent product recalls have raised awareness about lead leaching from corroding pipes and hiding inside baby food, the biggest sources of exposure for children are the spaces where they live and play: inside houses and apartments with old, degrading paint and yards with contaminated soil. For many, there is no easy escape. Lead contamination is most common in low-income neighborhoods, which means Black and Hispanic kids are disproportionately affected.

    Many local health departments, including the one where I live, offer home visits to help identify sources of lead, but in many cases only when levels are above 10 mcg/dL. So the majority of children with elevated lead levels receive little or no assistance at all, and families have to play detective, social worker, and home remodeler all at once.

    This is paradoxical, because the problem of low-level lead exposure cannot be solved by focusing on one child or one home at a time. My family’s efforts helped lower our daughter’s lead levels slightly, but they did nothing to address the more widespread problem of lead in our neighborhood, to which she and all the other children nearby are still exposed. Instead of having every lead-exposed family play whack-a-mole in their own home, Filippelli says that if he were appointed czar of lead, he would do a national analysis of high-risk neighborhoods and households, perform targeted testing to confirm hazards, and remediate at scale. There would have to be coordination between the Department of Housing and Urban Development and the Environmental Protection Agency, and such programs could cost up to $1 trillion and take a decade. But, he says, we could significantly reduce lead exposure across the board. The trickle-down effects of half a million children becoming smarter, healthier adults would reach everyone, even if we can’t say exactly how much smarter or healthier they’d be.

    For now, my family is still navigating this maze on our own. I’m trying to think of low-level lead exposure as a risk factor—like air pollution and forever chemicals—instead of a diagnosis. Meanwhile, my daughter is doing just fine. As a family, we’ll continue to avoid what lead we can; we’ve decided to spend a whopping $25,000 to repaint the chipping exterior of our house. But we’re still going to let our kid play at the park and climb the walls. After all, there’s no stopping her.

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    Lauren Silverman

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  • Tips for Navigating Metastatic Breast Cancer

    Tips for Navigating Metastatic Breast Cancer

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    Learning you have metastatic breast cancer (also called stage IV or advanced cancer) can be overwhelming. You’re having to process your diagnosis and figure out what’s next.

    That’s where nurse navigators and social workers come in. They can help with everything from managing treatment side effects to explaining your bill and finding financial aid. Their roles are distinct, but there’s some overlap. Here’s how they make your treatment journey a little easier.

    What does an oncology nurse navigator do?

    Oncology nurse navigators are registered nurses (RNs) with special training in cancer care. They can help you:

    • Better understand metastatic breast cancer and your treatment options
    • Manage side effects like nausea and pain
    • Learn more about clinical trials (studies on drugs that haven’t been approved yet) and find out if you’re eligible

    They can also refer you to nutritionists, physical therapists, mental health professionals, and other resources.

    What does a social worker do?

    Social workers can:

    • Help with mental health concerns
    • Explain billing and insurance issues
    • Connect you with resources like transportation to and from treatment
    • Help you understand work-related issues like short-term disability
    • Review and renew applications for financial grants to help pay for things like medications.

    How do I find financial support?

    Social worker Malia Opat and nurse navigator Kayla Terrell are part of an interdisciplinary team at The University of Kansas Cancer Center. Their group includes dietitians, financial navigators, and psychologists.

    When someone has financial concerns, doctors can refer them to Opat, who helps them sort through what’s available and where they can bridge the gaps.

    “One of the things I do is to see if (people with metastatic cancer) qualify for Social Security disability,” Opat says.

    Some people might also have access to short-term disability or Family Medical Leave Act (FMLA) options through their employers. There are local and national grants people can apply for, as well as gas cards and drug discounts — all of which can make a huge difference.

    Opat also lets people know about places like Hope Lodge, which offers free lodging when treatment is far from home. Run by the American Cancer Society, there are more than 30 Hope Lodges around the U.S.

    Where do I get educational and emotional support?

    One of the challenges with any diagnosis is knowing what questions to ask. Terrell recommends resources like the National Comprehensive Cancer Network (NCCN).

    “It gives (people) sample questions that they may want to ask when they see their doctors,” Terrell says.

    Terrell helps people take care of their emotional health by referring them to Turning Point, the cancer center’s free program for people with cancer and their families. They can learn healthy ways to manage cancer’s mental and social impact.

    Navigating cancer can be especially challenging when you’re trying to run a household and hold down a job. This is where telehealth plays a role.

    “People with young children really find telehealth visits to be a big help,” Terrell says, because they don’t have to leave the house or find childcare during that time.

    If you’ve been diagnosed with metastatic breast cancer, ask the doctor about pairing you with a nurse navigator or social worker.

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  • It’s Gotten Awkward to Wear a Mask

    It’s Gotten Awkward to Wear a Mask

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    Last week, just a couple of hours into a house-sitting stint in Massachusetts for my cousin and his wife, I received from them a flummoxed text: “Dude,” it read. “We are the only people in masks.” Upon arriving at the airport, and then boarding their flight, they’d been shocked to find themselves virtually alone in wearing masks of any kind. On another trip they’d taken to Hawaii in July, they told me, long after coverings became optional on planes, some 80 percent of people on their flight had been masking up. This time, though? “We are like the odd man out.”

    Being outside of the current norm “does not bother us,” my cousin’s wife said in another text, despite stares from some of the other passengers. But the about-face my cousin and his wife identified does mark a new phase of the pandemic, even if it’s one that has long been playing out in fits and starts. Months after the vanishing of most masking mandates, mask wearing has been relegated to a sharply shrinking sector of society. It has become, once again, a peculiar thing to do.

    If you notice, no one’s wearing masks,” President Joe Biden declared last month on 60 Minutes. That’s an overstatement, but not by much: According to the COVID States Project, a large-scale national survey on pandemic-mitigation behaviors, the masking rate among Americans bounced between around 50 and 80 percent over the first two years of the pandemic. But since this past winter, it’s been in a slide; the project’s most recent data, collected in September, found that just 29 percent have been wearing masks outside the home. This trend may be long-standing on the population level, but for individuals—and particularly for those who still wear masks, such as my cousin and his wife—it can lead to moments of abrupt self-consciousness. “It feels like it’s something that now needs an explanation,” Fiona Lowenstein, a journalist and COVID long-hauler based in Los Angeles, told me. “It’s like showing up in a weird hat, and you have to explain why you’re wearing it.”

    Now that most Americans can access COVID vaccines and treatments that slash the risk of severe disease and death, plenty of people have made informed decisions to relax on masking—and feel totally at ease with their behavior while paying others’ little mind. Some are no longer masking all the time but will do so if it makes others feel more comfortable; others are still navigating new patterns, trying to stay flexible amid fluctuating risk. Saskia Popescu, an infectious-disease epidemiologist at George Mason University, told me that she’s now more likely to doff her mask while dining or working out indoors, but that she leaves it on when she travels. And when she does decide to cover up, she said, she’s “definitely felt like more of an outlier.”

    For some, like my cousin and his wife, that shift feels slightly jarring. For others, though, it feels more momentous. High-filtration masks are one of the few measures that can reliably tamp down on infection and transmission across populations, and they’re still embraced by many parents of newborns too young for vaccines, by people who are immunocompromised and those who care for them, and by those who want to minimize their risk of developing long COVID, which can’t be staved off by vaccines and treatments alone. Theresa Chapple-McGruder, the public-health director for Oak Park, Illinois, plans to keep her family masking at least until her baby son is old enough to receive his first COVID shots. In the meantime, though, they’ve certainly been feeling the pressure to conform. “People often tell me, ‘It’s okay, you can take your mask off here,’” Chapple-McGruder told me; teachers at the local elementary school have said similar things to her young daughters. Meghan McCoy, a former doctor in New Hampshire who takes immunosuppressive medications for psoriatic arthritis and has ME/CFS, has also been feeling “the pressure to take the mask off,” she told me—at her kid’s Girl Scout troop meetings, during trips to the eye doctor. “You can feel when you’re the only one doing something,” McCoy said. “It’s noticeable.”

    For Chapple-McGruder, McCoy, and plenty of others, the gradual decline in masking creates new challenges. For one thing, the rarer the practice, the tougher it is for still-masking individuals to minimize their exposures. “One-way masking is a lot less effective,” says Gabriel San Emeterio, a social worker at Hunter College who is living with HIV and ME/CFS. And the less common masking gets, the more conspicuous it becomes. “If most people met me, they wouldn’t know I was immunocompromised,” McCoy told me. “There’s no big sign on our foreheads that says ‘this person doesn’t have a functioning immune system.’” But now, she said, “masks have kind of become that sign.”

    Aparna Nair, a historian and disability scholar at the University of Oklahoma who has epilepsy, told me that she thinks masks are becoming somewhat analogous to wheelchairs, prosthetics, hearing aids, and her own seizure-alert dog, Charlie: visible tools and technologies that invite compassion, but also skepticism, condescension, and invasive questions. During a recent rideshare, she told me, her driver started ranting that her mask was unnecessary and ineffective—just part of a “conspiracy.” His tone was so angry, Nair said, that she began to be afraid. She tried to make him understand her situation: I’ve been chronically ill for three decades; I’d rather not fall sick; better to be safe than sorry. But she said that her driver seemed unswayed and continued to mutter furiously under his breath for the duration of the ride. Situations of that kind—where she has to litigate her right to wear a mask—have been getting more common, Nair told me.

    Masking has been weighed down with symbolic meaning since the start of the pandemic, with some calling it a sign of weakness and others a vehicle for state control. Americans have been violently attacked for wearing masks and also for not wearing them. But for a long time, these tensions were set against the backdrop of majority masking nationwide. Local mask mandates were in place, and most scientific experts wore and championed them in public. With many of those infrastructural supports and signals now gone, masking has rapidly become a minority behavior—and people who are still masking told me that that inversion only makes the tension worse.

    San Emeterio, who wears a vented respirator when they travel, recently experienced a round of heckling from a group of men at an airport, who started to stare, laugh, and point. Oh my god, look at what he’s wearing, San Emeterio recalls the strangers saying. “They clearly meant for me to hear it,” San Emeterio told me. “It didn’t make me feel great.” Alex Mawdsley, the 14-year-old son of an immunocompromised physician in Chicago, is one of just a handful of kids at his middle school who are still masking up. Since the start of the academic year, he’s been getting flak from several of his classmates “at least once a week,” he told me: “They’re like ‘You’re not gonna get COVID from me’ and ‘Why are you still wearing that? You don’t need it anymore.’”

    Alex’s mother, Emily Landon, told me she’s been shaken by the gawks and leers she now receives for masking. Even prior to the pandemic, and before she was diagnosed with rheumatoid arthritis and began taking immunosuppressive drugs, she considered herself something of a hygiene stan; she always took care to step back from the sneezy and sniffy, and to wipe down tray tables on planes. “And it was never a big deal,” she said.

    It hasn’t helped that the donning of masks has been repeatedly linked to chaos and crisis—and their removal, to triumph. Early messaging about vaccines strongly implied that the casting away of masks could be a kind of post-immunization reward. In February, CDC Director Rochelle Walensky described masks as “the scarlet letter of this pandemic.” Two months later, when the administration lifted its requirements for masking on public transportation, passengers on planes ripped off their coverings mid-flight and cheered.

    To reclaim a mask-free version of “normalcy,” then, may seem like reverting to a past that was safer, more peaceful. The past few years “have been mentally and emotionally exhausting,” Linda Tropp, a social psychologist at the University of Massachusetts at Amherst, told me. Discarding masks may feel like jettisoning a bad memory, whereas clinging to them reminds people of an experience they desperately want to leave behind. For some members of the maskless majority, feeling like “the normal ones” again could even serve to legitimize insulting, dismissive, or aggressive behavior toward others, says Markus Kemmelmeier, a social psychologist at the University of Nevada at Reno.

    It’s unclear how the masking discourse might evolve from here. Kemmelmeier told me he’s optimistic that the vitriol will fade as people settle into a new chapter of their coexistence with COVID. Many others, though, aren’t so hopeful, given the way the situation has unfolded thus far. “There’s this feeling of being left behind while everyone else moves on,” Lowenstein, the Los Angeles journalist and long-hauler, told me. Lowenstein and others are now missing out on opportunities, they told me, that others are easily reintegrating back into their lives: social gatherings, doctor’s appointments, trips to visit family they haven’t seen in months or more than a year. “I’d feel like I could go on longer this way,” Lowenstein said, if more of society were in it together.

    Americans’ fraught relationship with masks “didn’t have to be like this,” Tropp told me—perhaps if the country had avoided politicizing the practice early on, perhaps if there had been more emphasis on collective acts of good. Other parts of the world, certainly, have weathered shifting masking norms with less strife. A couple of weeks ago, my mother got in touch with me from one such place: Taiwan, where she grew up. Masking was still quite common in public spaces, she told me in a text message, even where it wasn’t mandated. When I asked her why, she seemed almost surprised: Why not?

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    Katherine J. Wu

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