The American Farm Bureau Federation found that about 3 in 5 rural adults reported that the pandemic has affected mental health in their communities, while two-thirds of farmers and farmworkers said the pandemic has impacted their mental health.
KIOWA, Colo. — The yellow-and-green facade of Patty Ann’s Cafe stands out on the main street of this ranching community just 25 miles from the Denver suburbs. Before the pandemic, the cafe was a place for ranchers to gather for meals and to swap stories.
“Some people would call it almost like a conference room,” said Lance Wheeler, a local rancher and regular at the cafe. “There are some guys that, if you drive by Patty Ann’s at a certain time of day, their car or truck will always be there on certain days.”
When covid-19 restrictions closed in-person dining across Colorado last year, Patty Ann’s opened a takeout window. Customers spread their food on the hoods of their trucks and ate there while sharing news and commiserating over the stresses of ranching during the pandemic.
Keeping that community hub operating has been vital for the ranchers around Kiowa as the pandemic takes its toll on mental health in agricultural communities where health providers are scarce and a “pull yourself up by your own bootstraps” mentality is prevalent.
The pandemic over the past year has been a surprising boon for many farms and ranches as higher consumer demand amid food shortages has boosted business.
But coupled with everyday worries about weather and commodity prices, the pandemic also has led to mental health challenges, including serious stress, anxiety and depression among farmers and ranchers, health officials said. The American Farm Bureau Federation found that about 3 in 5 rural adults reported that the pandemic has affected mental health in their communities, while two-thirds of farmers and farmworkers said the pandemic has impacted their mental health.
Treatment for mental health problems caused or worsened by the stress and isolation of the pandemic has obstacles particular to ranching and farming country. The stigma of acknowledging the need for mental health care can prevent people from seeking it. For those who overcome that obstacle and look for help, they are likely to find underfunded, understaffed and underequipped health providers who often don’t have the bandwidth or expertise for sufficient mental health support.
“I guess my cows are my therapists,” joked Wheeler. The 54-year-old rancher said he has felt the stress of the added responsibility of providing meat to customers in a time of food shortages, particularly at the beginning of the pandemic. But he feels lucky to have a family that supports him.
Similar to other Rocky Mountain states, Colorado has one of the highest suicide rates in the country. The rates are often worse in the state’s rural communities, a factor consistent with rural Americans’ risks nationwide: A Centers for Disease Control and Prevention report examining 2001-15 data found the suicide rate in rural counties was more than 17 per 100,000 people, compared with about 15 per 100,000 in small and medium-sized metro counties and about 12 per 100,000 in large metro counties.
Kiowa is in Elbert County, whose 1,850 square miles of mostly dusty, flat plains start where the affluent bedroom communities of Denver end. The county has no urgent care center or hospital like its suburban neighbors, just four clinics to serve a population of 27,000.
Dwayne Smith, Elbert County’s public health director, said that to help solve the problem residents need to talk with their health providers as candidly about their mental health challenges as about skin cancer or heart disease.
“In a more conservative community, where historically mental health issues may not have been talked about as openly and as comfortably as in the [Denver] area, you have to work diligently to increase people’s comfort level,” Smith said. “Even saying the words ‘anxiety,’ ‘depression,’ ‘mental health’ — all those things that in prior generations were very much a taboo subject.”
The public health crisis is just an added burden to the already high stress on people in the agricultural industry. “Farmers and ranchers are absorbing a lot of the shocks to the system for us: hailstorms, pest outbreaks, drought, markets — they’re adjusting for all that to keep food production moving,” said Colorado’s agriculture commissioner, Kate Greenberg.
Unpredictable weather, a volatile commodity market and a 700-acre grass fire cost Laura Negley, a rancher in the southeastern town of Eads, a lot of income around 2012. Negley’s and her husband’s families have been in agriculture since the late 1600s and early 1700s, and they are now the third generation on the same Colorado land.
But she was devastated after those losses, followed by her youngest child’s departure for college. “That’s kind of when the wheels fell off for me. And then I kind of spiraled down,” Negley said.
Negley, now 59, said she initially didn’t recognize she needed help even though she was deep into her “dark place” of depression and anxiety, but her brother encouraged her to see a counselor near him in Greeley. So, when the cattle were done grazing for the season, Negley spent six winter weeks getting counseling 200 miles north. Those visits eventually transitioned to phone counseling and an anti-anxiety medication.
“I do think you have to have a support group,” said Negley, who said her faith has helped her, too.
Over the years, slashed budgets to local health departments have cut to the bone. In Elbert County, Smith is one of just three full-time employees in his department. About 15 years ago, it had at least six nurses. It now has none. It is trying to hire one.
“We have a lack of health providers” in rural America, Negley said. “The ones we do have are doing their best — but they’re trying to wear multiple hats.”
Agencies in Colorado recognize the need to improve mental health services offered to rural residents. Colorado Crisis Services has a hotline and text-messaging number to refer people to free, confidential support. And the state is working on tailored messaging campaigns to help farmers and ranchers understand those numbers are free and confidential to contact. These services can help: According to the CDC, for every adult death by suicide, about 230 people think seriously about suicide.
A bill introduced in Colorado’s legislature would boost funding for rural rehabilitation specialists and help provide vouchers for rural Coloradans to get behavioral health services.
“We have to be flexible: What works in Denver does not work in La Junta” or the rest of rural Colorado, said Robert Werthwein, director of the state’s Office of Behavioral Health.
But in tightknit small towns, ranchers say, even if the resources are there the stigma remains.
“These are normal people with normal problems. We’re just trying to, perhaps first and foremost, destigmatize mental health needs and resources,” Smith said.
Stigmas are something 26-year-old Jacob Walter and his family want to help tackle. As Walter was growing up, a friend’s father and another friend’s mother died by suicide. Before Walter left the family’s ranch in southeastern Colorado to start his sophomore year in college, he lost his own father, Rusty, to suicide in 2016. Walter said there were few local resources at the time to help people like his dad, and the nearest town was 45 minutes away.
Rusty was involved in many community service organizations and gave a lot of his time to others, Walter said, but he suffered from depression.
“The day before he committed suicide, we had been talking at the kitchen table, and he was just talking about [his depression], and he said: ‘You know, you can always get help and stuff.’”
That’s the message agricultural leaders like Ray Atkinson, communications director at the American Farm Bureau Federation, say should be conveyed most: It’s OK to acknowledge when you need help.
“If your tractor needed maintenance … you would stop what you’re doing and you’d get it working right before you go try and go out in the field,” Atkinson said. “You are the most important piece of equipment on your farm.”
As coronavirus deaths ravage Brazil and India and other countries across the globe, pressure to force J&J, AstraZeneca, Novavax, Pfizer and Moderna to waive their intellectual property protections and share their technology reached a crescendo this week.
This article was published on Thursday, May 6, 2021 in Kaiser Health News.
Biolyse Pharma Corp., which makes injectable cancer drugs, was gearing up to start making generic biologic drugs, made from living organisms. Then the pandemic hit.
Watching the covid death toll climb, the company decided its new production lines and equipment could be converted to making vaccines for poorer countries without the means to do so.
John Fulton, a consultant for the Canadian company, emailed Janssen, the Johnson & Johnson subsidiary that makes the vaccine, which employs a live, though disabled, virus. Biolyse sought a license so it could produce 20 million of J&J’s shots.
When J&J’s rejection form letter finally arrived, it misspelled his name: "Dear Mr. Folton, Thank you for your interest …"
Smaller companies like Biolyse may command more attention from the big corporate vaccine manufacturers after the Biden administration announced support Wednesday for a proposal to waive patent protections for covid-19 vaccines and therapies.
As coronavirus deaths ravage Brazil and India and other countries across the globe, pressure to force J&J, AstraZeneca, Novavax, Pfizer and Moderna to waive their intellectual property protections and share their technology reached a crescendo this week.
Yet while Biden’s support of the waiver might be good optics, experts said, it won’t be enough.
Moderna, which did not respond to requests for comment, announced in October that it would not enforce its covid-related patents during the pandemic. Even so, no known independent producer has used the available patents to replicate the company’s mRNA vaccine. Experts say that’s telling.
“You can’t manufacture its vaccine unless you have access to trade secrets as well as the patents,” said Brook Baker, a law professor at Northeastern University who participated in early conversations on the creation of the World Health Organization’s Covid-19 Technology Access Pool, or C-TAP. To date, no vaccine technology has been added to the pool.
The patents alone wouldn’t be enough. A manufacturer would also need access to internal processes: the technology and know-how that bring a vaccine to life. They’d need skilled scientists and technicians from the original company to train their staff for months. On top of that, every manufacturer in the world would be on the hunt for the limited supplies of single-use bioreactor bags, vials and adjuvants.
In the best-case scenario, sharing patents is only a tiny step in the vastly complex work of making a covid vaccine, which relies on sophisticated new technologies. At its worst, they say, waiving patents would strain already taxed supply chains and encourage counterfeiting and shoddy production that could result in dangerous or ineffective vaccines, besmirching the reputation of vaccination for years.
Instead of focusing on patents, some say, global leaders should subsidize additional production of existing vaccines at discount prices through groups like Gavi, the Vaccine Alliance, which already funds billions annually in discounted vaccines for the developing world.
Dr. Stanley Plotkin, the inventor of the rubella vaccine and a consultant to vaccine makers, said allowing inexperienced companies to produce vaccines “could be a disaster for covid vaccines and for vaccines in general.”
Plotkin proposed that an intellectual property transfer be allowed to happen only if a regulatory authority, such as the Food and Drug Administration, inspected the receiving company and agreed it was competent.
Proponents of the waiver argue that without urgent action, many more people will die. “At this pace,” 9 of 10 people in the developing world will remain unvaccinated this year ― and it could be “at least 2024” before many nations achieve mass immunization, according to an open letter to President Joe Biden last month from more than 170 Nobel laureates, former prime ministers and heads of states.
“I think we’re going to find very soon that this Canadian company is just a drop in the bucket,” said Niko Lusiani, a senior adviser for Oxfam America who helped gather signatures. “There are many manufacturers ready to come on line.” Even more, he said, there is capacity to be built if those technologies are available and the investors are not facing trade sanctions for doing so.
U.S. Trade Representative Katherine Tai’s statement on Wednesday was carefully worded, saying the U.S. will “actively participate in text-based negotiations” on the global stage to support the waiver. It would require the approval of all 164 member nations.
Tai, picked by Biden in December, met with more than two dozen parties integral to the global vaccine supply chain, including executives of AstraZeneca, Novavax, J&J, Pfizer and Moderna as well as nonprofit proponents of the waiver and Bill Gates. The Microsoft founder and philanthropist, who helped establish global vaccination efforts, has come out in opposition to the waiver. Gates had urged Oxford to commercialize its vaccine after it initially promised to donate the rights to any drugmaker to manufacture for the public good. Oxford gave AstraZeneca sole rights, with no guarantee it would be offered at a low cost, and retained a stake in the profits.
Michael Watson, a longtime vaccine industry official and current consultant to Moderna, called forcing companies to give away their licenses a “dangerous precedent.”
“The problems that we are trying to solve are reliability, quality, cost and access to vaccine supply,” he said. “These can all be done through established market mechanisms of partnerships, licensing, disruptive innovation, tax breaks, incentives and government funding without attacking the market mechanisms that made all of this possible in the first instance.”
Bio Farma, the state vaccine producer in Indonesia, is planning to produce one of the Chinese vaccines. The Brazilian company Fiocruz is making AstraZeneca’s vaccine, as is the Serum Institute of India. All these deals involve technology transfer and training, as well as raw materials.
Dr. George Siber, a vaccine expert currently consulting with six vaccine companies worldwide, including mRNA vaccine maker CureVac, said that without the technology transfer “we’re talking about years of work” to figure out how to replicate a vaccine.
Vaccine manufacturers have partnered across the globe ― and it has been akin to a high-end matchmaking process with the vaccine makers signing voluntary licensing deals only with trusted manufacturers.
Thomas Cueni, director-general of the International Federation of Pharmaceutical Manufacturers and Associations, said that with each partnership the original vaccine manufacturer is stretched “to the limits because really there’s a lot of hand-holding, there’s a lot of knowledge sharing, training of skilled workers.”
To emphasize the work involved, Cueni pointed to the mRNA vaccine of Pfizer-BioNTech, which has more than 280 components and 86 suppliers from 19 countries.
It’s not likely, Cueni added, that the covid vaccine makers will willingly partner with a company unless they mutually agreed to do so.
“Do you think that if you try to coerce companies already stretched out, they would then give you not just the recipe, the blueprint, but really show you how to do it?” he said.
J&J spokesperson Jake Sargent declined to confirm the email interaction with Biolyse. But he said in an email that only a limited number of manufacturers can produce its vaccine safely, with high quality, and to scale. J&J assessed nearly 100 production sites and, in the end, selected fewer than a dozen.
For the manufacturers, supplies are also a hurdle. As more companies get into the game of making vaccines globally, there simply won’t be enough ingredients.
Pfizer’s Sharon Castillo wrote in an email that if companies begin to buy up scarce supplies in the hope of manufacturing a vaccine using technology developed by others, “it will make it harder, not easier, to manufacture vaccines in the near term.”
Through COVAX, Castillo said, Pfizer will deliver up to 40 million doses in 2021 to countries across the globe such as Bosnia, Tunisia, Rwanda, Peru, the West Bank and the Gaza Strip, and Ukraine.
Nicole Lurie, a senior adviser at the Coalition for Epidemic Preparedness Innovations, said the waiver does not address the short-term need for supplies or the potential for countries to donate excess doses.
Manufacturers have already announced that they hope to supply up to 14 billion doses of vaccines globally in 2021 ― that’s triple the previous annual vaccine output, according to a discussion paper posted by IFPMA and organized for an international summit on shortages.
The report warned that a shortage of supplies may result in several current covid manufacturers not being able to meet current vaccine manufacturing commitments. There’s concern about the need for single-use bioreactor bags used for cell culture and fermentation for all vaccines. And, the lipid nanoparticles used to create mRNA vaccines are also in tight supply, with only a few capable suppliers currently operating at scale.
So far, more than 1.21 billion vaccines doses have been administered worldwide, but mostly in the U.S. and other wealthy countries. Canada’s Biolyse said that if it can manufacture the J&J vaccine, a small developing country has committed to buying it.
Without a voluntary consent from the manufacturer, though, Biolyse is now working to obtain a compulsory license to produce the J&J vaccine, which would force J&J to waive its intellectual property rights. Such a legal maneuver is allowed under current international law, but the Canadian government would have to support Biolyse’s license application. So far, it has not.
Canadian officials have met with Biolyse and other companies, as well as international vaccine developers, about the feasibility of making their products in Canada, said Sophy Lambert-Racine, a spokesperson for Innovation, Science and Economic Development Canada.
The “existing Canadian biomanufacturing assets were deemed to be of an insufficient scale or utilized technology platforms which were not suitable to the needs of these firms,” said Lambert-Racine, adding that the Canadian government is now investing more than $1 billion into covid vaccine and therapeutics research and development.
Biolyse is a small company with about 50 employees, including “scientists who have spent their working lives producing vaccines,” Fulton said. The company has said it still needs about $4 million in financing to finish setting up manufacturing lines.
Claude Mercure, a co-founder of Biolyse, said that even if the company doesn’t share the patent and the technology, he is confident his company can figure out how to make the J&J vaccine, which uses a disabled adenovirus to deliver instructions to the body on fighting the coronavirus. In recent weeks, though, other independent scientists have reached out to collaborate and potentially develop a new vaccine.
Trying to remake the J&J vaccine without a technology transfer and partnership would potentially take years, but with a strategic partnership Biolyse could be making vaccines within four to six months, Biolyse executives said.
Regardless of what happens with the waiver, the tenor of international conversation about intellectual property rights puts pharmaceutical companies on notice, said Mara Pillinger, a senior associate in global health policy and governance at Georgetown’s O’Neill Institute for National and Global Health Law.
“Large parts of the world are not going to suffer with covid until [the industry] gets around to prioritizing them,” she said.
HELENA, Mont. — The 2021 Montana legislative session will be remembered as one of the state’s most consequential as a Republican-led legislature and governor’s office passed new laws restricting abortions, lowering taxes and regulating marijuana.
But the debate over those and other highly publicized issues may have caused other meaningful legislation related to health care to slip off the public’s radar. Here are five substantial health-related policies that emerged from the recently ended session. They include bills that Gov. Greg Gianforte has signed or is expected to sign into law.
1. The permanent expansion of telehealth
One byproduct of the covid-19 pandemic has been the widespread use of computers, tablets and smartphones for medical and behavioral health appointments instead of in-person office visits. Telehealth has particularly benefited Montana’s large rural population during the pandemic.
“A lot of Montanans are in very rural areas and often need to take extended time off work, drive long distances, find child care just so they can attend a routine health care appointment,” said state Sen. Jen Gross (D-Billings).
Gross sponsored one of two Montana bills that make permanent the expanded telehealth regulations set by emergency order at the start of the pandemic last year. The new laws redefine telehealth to include nonclinical health services, require private insurers and Medicaid to cover telehealth services and authorize state licensing boards to set rules regulating the practice.
The new laws also allow audio-only telehealth appointments, which supporters say are needed for rural areas without broadband internet coverage. An exception is that a doctor can’t certify a patient for the state’s medical marijuana program by phone without a previously established doctor-patient relationship. Telehealth by text messaging and fax alone is also still illegal.
The boom in virtual health care is being met with concern by local providers who worry that large out-of-state providers might poach patients and by regulators who see the potential for telehealth scams and fraud.
2. The weakened authority of local public health officials
Lawmakers fettered local public health officials with legislation after local health departments implemented and enforced state and federal recommendations to stop the spread of the coronavirus, such as mask mandates, limits on gathering and bans on indoor dining.
Many public health officials have faced threats and harassment over their work to enforce those covid restrictions, leading to high rates of turnover in health departments across the nation.
One measure passed by Republican-majority lawmakers ensures that any Montana public health order can be changed or repealed by elected officials, such as a county commission, and it bans officials from placing any restrictions on attending church services.
Another measure bars public health officials from issuing orders that restrict the ability of a private business to operate. There are some exceptions, such as restaurant health inspections. A third allows citizens to amend or reject public health orders by referendum, while a fourth overturned a law that penalized law enforcement officials who refused to enforce public health orders.
State lawmakers also added a provision in a bill on how to distribute the federal aid in the American Rescue Plan Act that would withhold 20% of any infrastructure grant made to a city, town or county if that local government enforces covid restrictions such as mask mandates and restaurant limits. Gianforte lifted those statewide restrictions after taking office, and the provision takes aim at local governments, like Gallatin County, that decided to keep their own restrictions.
“It’s time for us to make sure the state is open,” said Rep. Frank Garner (R-Kalispell), who backed the provision.
3. Making it more difficult to stay enrolled in Medicaid expansion
Lawmakers cut funding for the state Medicaid expansion program’s 12-month continuous eligibility provision, which has allowed people enrolled in the program to receive benefits for a full year, regardless of changes to their income.
Continuous eligibility is meant to reduce the churning of Medicaid expansion rolls as people are added and removed if their income fluctuates, such as with seasonal work.
Instead, those enrollees will be required to certify their eligibility more than once a year. Department of Public Health and Human Services spokesperson Jon Ebelt said in an email that the department has reached out to the federal Centers for Medicare & Medicaid Services for guidance on how to make the change after the pandemic emergency ends.
Nearly 98,000 Montana adults were enrolled in the Medicaid expansion program in March, according to the most recent data.
4. Anti-vaccinators make their mark
Riding a wave of opposition toward the covid vaccines, the Montana Legislature passed a bill that makes it more difficult to require workers to be vaccinated as a condition of employment. That measure received much publicity and several last-minute amendments in the session’s final days as hospitals and long-term care facilities warned it would force them to require face masks for employees and permanently ban visitors. The bill that passed “poses a significant threat to public safety,” Montana Hospital Association CEO Rich Rasmussen said.
Another consequential vaccination bill that received less attention will make it easier for parents to obtain medical exemptions for their children for vaccines required by schools. State law requires kids to be vaccinated against illnesses such as measles and pertussis to go to school, but students can be exempted for religious or medical reasons.
Previously, a physician needed to sign off on a medical exemption. The new law allows a wide range of health professionals to do so, including nurses, pharmacists, massage therapists, chiropractors and nutritionists. It also makes it more difficult for schools to share exemption data with health officials.
Some parents who testified in support of the bill during legislative hearings said they wanted a medical exemption option because their children might need that medical documentation in the future to attend college or get a job that might not accept a religious exemption.
The state health department and the American Academy of Pediatrics opposed the legislation. “This bill has the effect of making medical exemptions extremely easy to obtain in cases where they might not be warranted,” said Dr. Lauren Wilson, a pediatrician and vice president of the Montana chapter of the American Academy of Pediatrics.
5. Hearing aids for kids
Lawmakers passed a bipartisan measure that will require private insurers and the state employee health plan to cover hearing amplification devices and services for children 18 and under.
The new law won’t affect a large number of people in the state, but supporters said it will make a difference in the lives of families who spend $6,000 every three to five years on hearing aids for their children.
Kiera Kirschner of Bozeman testified before lawmakers during the session that her 2½-year-old son was born with hearing loss and has had hearing aids since he was 2 months old.
“My son did not choose to have hearing loss,” Kirschner said. “He needs hearing aids so he can grow and develop. They’re medically necessary.”
Montana is the 26th state to require such insurance coverage, and insurers said they did not oppose the measure because the total cost would not be significant.
This pandemic has been stressful for millions of children. Some have lost a loved one to covid, and many families have lost jobs, their homes and even reliable access to food. If that stress isn't buffered by caring adults, it can have lifelong consequences.
This article was published on Monday, May 10, 2021 in Kaiser Health News.
Kai Humphrey, 9, has been learning from home for more than a year. He badly misses his Washington, D.C., elementary school, along with his friends and the bustle of the classroom.
“I will be the first person ever to have every single person in the world as my friend,” he said on a recent Zoom call, his sandy-brown hair hanging down to his shoulder blades. From Kai, this kind of proclamation doesn’t feel like bragging, more like exuberant kindness.
But when Kai’s school recently invited him back, he refused. That’s because his worry list is long, topped by his fear of getting covid-19 and giving it to his 2-year-old sister, Alaina. She was born with a heart condition, Down syndrome and a fragile immune system. To her, the disease poses a mortal threat, and he is her protector, the only one who can make her giggle breathlessly.
Kai also worries about being separated from his mom, Rashida Humphrey-Wall. His biological father died in 2014, and she remains his rock, his mama bear and occasional taekwondo partner. He sometimes visits her bedside, in the middle of the night, just to check on her.
This pandemic has been stressful for millions of children like Kai. Some have lost a loved one to covid, and many families have lost jobs, their homes and even reliable access to food. If that stress isn’t buffered by caring adults, it can have lifelong consequences.
“Kids have had extended exposure to chaos, crisis and uncertainty,” said Dr. Matt Biel, a child psychiatrist at MedStar Georgetown University Hospital.
But there’s some good news for kids like Kai: Educators across the country say their top priority right now isn’t doubling down on math or reading — it’s helping students manage pandemic-driven stress.
“If kids don’t return to school and get a lot of attention paid to security, safety, predictability and reestablishing of strong, secure relationships, [they] are not gonna be able to make up ground academically,” Biel said.
Promoting Mental Wellness in the Classroom
To reestablish relationships in the classroom — and help kids cope with the stress and trauma of the past year — mental health experts say educators can start by building in time every day, for every student, in every classroom to share their feelings and learn the basics of naming and managing their emotions. Think morning circle time or, for older students, homeroom.
At Irene C. Hernandez Middle School in Chicago, teacher Lilian Sackett starts off each day by checking in with students, then diving into a short lesson on mindfulness and other social-emotional skills.
The school is in a predominantly Latino area that was hit hard by the pandemic, Sackett said. She teaches English as a second language, and she learned that many of her students’ families were dealing with a lot of stress related to job losses and illness — that’s on top of any trauma that may have predated the pandemic.
“We need to allow the students to share their experiences with the pandemic and to give them that safe space [to] talk about it,” Sackett said.
What’s more, she said, children can benefit a lot from just a few minutes each day of classwidecalm. When she found out her students love Bob Ross and his tranquil, televised painting lessons from the 1980s and ’90s, Sackett decided to work him into their morning routine.
“We watch five minutes of Bob Ross, and we watch the whole painting session within one week,” she explained. “When they’re having fun, they’re so excited — they’ll learn anything you throw at them.”
Sackett said her approach was informed by a virtual training, provided by Chicago’s Ann & Robert H. Lurie Children’s Hospital, that focused on the impacts of trauma on children.
“They mentioned a bad grade is never about a lazy kid,” she said. If a child is struggling academically, they may be dealing with really tough circumstances at home. Sackett learned that teachers can help by creating a supportive environment that fosters resilience.
Sheyla Ramirez, an eighth grader at Sackett’s school, has benefited a lot from daily check-ins with her teacher. Last fall, her family came down with covid, and her baby sister ended up hospitalized before she recovered. Sheyla’s uncle had died after testing positive for the virus months earlier. She said it was a really stressful time, especially for her sister in third grade.
“My sister was like, ‘Oh, I don’t want to die,'” Sheyla remembered. “I didn’t know what to tell her because I was in shock, too.”
School staff members routinely checked in to see if she or her family needed anything, and they offered to connect Sheyla with a school counselor. But Sheyla said the short daily lessons in mindfulness at the start of each school day — and being able to share her feelings and concerns with her teacher — were enough to help her get through.
“They’ve been doing an excellent job,” said Sheyla’s mom, Amparo Ramirez. “I’ve been telling them, ‘I’m thankful for you being here.'”
When More Serious Help Is Needed
For many kids, a little morning circle time with a caring teacher, or an occasional chat with a school counselor is all they need. And the more schools invest in promoting mental health and equipping children with social-emotional skills, the fewer children will go on to develop more serious problems, said child psychiatrist Biel.
But there will always be children who need more intensive interventions, which could involve school social workers and psychologists, when available, or a referral to a mental health professional beyond the school.
Kai has been talking regularly with a therapist through his elementary school. And he said she has helped him come up with strategies to manage his stress at home.
“I would go in my room, lay on my bed, and either watch TV or play with my toys or do something like that,” Kai said. “And then I’ll come back out when I’m more calm and happy.”
As a solo parent, Kai’s mom, Humphrey-Wall, has also had a tough year. She admitted that looking after two kids, in addition to taking on a new job, during a pandemic has been stressful. “In the beginning, I think I had depression, anxiety … anything you can think of, I probably had it.”
Biel said that kind of stress can trickle down to children.
“All of the best evidence-based practices in the world are not going to have the desired effect if that child is living in a family that’s overwhelmed by stress,” he explained.
One of the best ways to address that is to also help caregivers, like Humphrey-Wall. And that’s exactly what Kai’s school has done. Through a partnership with MedStar Georgetown Center for Wellbeing in School Environments, Kai’s school arranged for Humphrey-Wall to meet with a clinical psychologist once a week for what they call “parent wellbeing sessions.”
Without it, she said, “I don’t know what I would have done, really.”
Partnerships between schools and mental health care providers can be expensive for districts and may not be an option in rural or under-resourced areas where there simply aren’t enough child-focused services.
Biel said he’s hopeful the rise in telehealth will help. But whatever the solution, he said, schools need support as they explore their options.
“Schools can’t beg, borrow and steal from what they already have to do this,” Biel said. “We need to support schools and school systems with more resources to make this possible.”
Federal Help for Schools
For districts that want to do more, the latest covid relief package could be a big help. The American Rescue Plan contains roughly $122 billion for K-12 schools, some of which can be used to hire more counselors, social workers and psychologists. And one U.S. senator has been pushing the Biden administration to emphasize mental health as it guides districts on how to spend that money.
“Not all schools and districts are equipped to work on these complex mental and behavioral health issues and meet the unique needs of today’s students,” Sen. Catherine Cortez Masto wrote in a letter to the secretaries of the U.S. Departments of Education and Health and Human Services. “Many suffer from drastic shortages of counselors, social workers, and psychologists to work with students even under normal circumstances. They will need robust assistance from community-based service providers and the health care community.”
“This is a unique situation we’re in, hopefully a once-in-a-lifetime pandemic,” she said. “We don’t know the impact it’s going to have long term [on] our kids. But we know the short term. I’ve seen it here in southern Nevada and its devastating consequence here. So we’ve got to change that dynamic.”
In the U.S., where access to health care — especially for children’s mental health — is inequitable and inconsistent, the difficult work of identifying and tending to the mental and emotional health of this pandemic generation will fall largely on the shoulders of educators.
Programs like the one at Kai’s school, in Washington, D.C., could play a critical role in helping change that dynamic. Cortez Masto hopes the flood of federal relief dollars will help other districts create similar partnerships with child mental health providers, or find other solutions.
In the meantime, Kai and his mom are trying to figure out when Kai will return to in-person school. Humphrey-Wall said it would be good for her son to get out of the house, but Kai still fears bringing covid home. He’s talking it through with his school-based therapist, doing his best to give those worries a roundhouse kick:
“We all need to be free from this quarantine. I’m going crazy. I want to be free!” Kai shouted. He’s eager to get back to the business of making friends with the entire world.
If you or someone you know may be considering suicide, contact the National Suicide Prevention Lifeline at 1-800-273-8255 (en español: 1-888-628-9454; deaf and hard of hearing: dial 711, then 1-800-273-8255) or the Crisis Text Line by texting HOME to 741741.
This story is part of a reporting partnership that includes NPR, Illinois Public Media and Kaiser Health News.
Both parents had read about people who are transgender, but they were not familiar with the term nonbinary, which refers to people who don't see themselves as strictly male or female or people who move between genders.
This article was published on Friday, May 7, 2021 in Kaiser Health News.
It’s 7:30 a.m. on a school day. Two parents are racing to get their three young children dressed, fed, packed for the day, into coats and out the door when 6-year-old Hallel runs downstairs, crying.
Ari, Hallel’s father, is the first to ask “What’s wrong?”
The answer launched a journey these parents never envisioned, described by words they’d not heard and questions they never thought they’d ask. (We’re using only first names for the family members in this story due to Hallel’s age.)
The journey started with a “let’s pretend” game. Hallel’s little sister Ya’ara wanted to play “parents.” Ya’ara decides that she’ll be the mommy, and Hallel will be the daddy. Hallel protests. Ya’ara insists: Hallel is a boy, and therefore must play the daddy.
“But that doesn’t feel right,” Hallel said to Ari, between tears, “cause I’m a boy-girl.”
Shira, Hallel’s mother, said she copes well in a crisis. In that moment, she packaged the news away for later.
“I was like, ‘Well, we love you whoever you are, give me a hug,’” Shira remembered telling Hallel.
For Ari, “it felt a little bit like getting up to the top of a roller coaster, like, OK, now it’s going to begin. I don’t know exactly what’s going to happen next, but what I do know for sure is that this is happening.”
To clarify, Ari and Shira had known for some time that Hallel was not a traditional boy. If they bought action figures, Hallel preferred female characters. Hallel would watch fairy movies one day and draw dresses, then dress and act more like what they expected from a boy the next.
“For us that wasn’t a problem,” Ari said. “There’s lots of ways to be a boy and lots of ways to be a girl. But at the back of our mind it was confusing.”
When Hallel made the boy-girl announcement, Shira said the family finally had an explanation that made sense. But she wondered, “Is that an option?”
Both parents had read about people who are transgender, but they were not familiar with the term nonbinary, which refers to people who don’t see themselves as strictly male or female or people who move between genders. Hallel’s self-described status as a boy-girl seemed like it might resolve years of confusion.
“It felt really right,” said Ari. And now, three years later, “it still feels really right.”
But Hallel’s identity has triggered new worries. They surfaced one night while Shira and Hallel cuddled at bedtime. (Shira agreed to record family conversations over a period of time for this story.)
“How did you feel when you first realized that I was a boy-girl?” asked Hallel, now age 9.
Shira paused, then answered slowly: “Abba [the Hebrew word for Daddy] and I knew for a very long time before you said anything that something was a little bit different about your gender. So we were not going to force you to fit in a certain box. But I think when we first found out, we were nervous because we want things to be easy for you.”
Shira has a version of that question for Hallel.
“Can you tell me what it feels like to be a boy-girl?” she asked.
“That’s hard,” Hallel said. “I just feel like myself, and that’s it. I don’t feel that different from anybody else.”
Pronouns and Patience
Hallel asked Shira and Ari to stop using “he” and start calling Hallel “they” about a month after the boy-girl declaration.
Little sister Ya’ara has had a hard time using “they,” as have Hallel’s grandparents, some friends and teachers at Hallel’s school.
Ari, who studies linguistics, said people frequently struggle to change the pronouns they use because those words are deeply embedded in our brains; we repeat them so much more often than nouns or verbs, for example.
“We say ‘he’ or ‘she’ or ‘they’ or ‘it’ in almost every single sentence,” Ari told Hallel one morning, “so we have a lot of practice using a pronoun in one way, kind of like walking. Imagine if you had to walk in a new way, it would probably take some time, right?”
“Like walking backwards?” Hallel asked.
“That’s right,” said Ari.
Ari tries to be patient with himself and others who coded Hallel as a boy from birth and subconsciously default to “he” now when speaking about Hallel.
“However much we might want to, even when we have the intention to do something, we have the underlying linguistic machinery that is actually making the language happen,” Ari said.
Hallel has a suggestion for grandparents and others: “Refer to me as a group of people.”
“Do you remember what Grandma said to you, the way that she helps to remind herself?” Shira asked Hallel. “She thinks of God. She feels like God is very universal and not a he or she, but more a they. And so she thinks of God when she refers to you.”
With excitement, Shira showed Hallel a news story about Merriam-Webster naming “they” the dictionary company’s word of the year.
“Wow, wow,” Hallel said in between mouthfuls of waffles.
“Why wow?” Shira wanted to know.
“It’s just really new that something like that’s happening,” Hallel said.
New still, yes, but familiar to many members of Generation Z and millennials, who say they know someone who uses gender-neutral pronouns.
“Wow,” Hallel said again. “Maybe, like, next year, ‘they’ will be in the dictionary.”
“I think it is in the dictionary already,” Shira told them.
“Already?” said a wide-eyed Hallel, their voice trailing off.
Coded Clothing
Hallel likes colorful clothes, especially those with pictures of animals.
Ari estimated Hallel wears dresses about a third of the time, clothes that might be seen as boyish about a third of the time and clothes that don’t read as either gender for the remainder. Hallel’s curly blond hair flows to about midneck.
“When people first see me they think I’m a girl,” Hallel said.
Sometimes Hallel or one of their parents will correct people who make the wrong assumption, but not all the time. Explaining boy-girl, nonbinary or “they” to everyone who calls Hallel “she” in the grocery store checkout line or on the street or at a public event would be exhausting.
“I don’t blame them. It’s new,” Hallel said. “The first time, I’ll let it slide.”
Dropping Hallel at school in a dress was hard for Ari, initially.
“There was an internal squeamishness,” Ari said. “I realized it’s just because it was different and something I wasn’t used to.”
Watching Hallel has changed that.
“They have taken such pride in who they are and in telling people,” Ari said. “And Hallel’s friends have completely embraced Hallel. I’m very grateful to their families for not pulling them back because this is something new or different.”
Bathroom Schedule
Hallel said they’ve been told “about 50 times,” mostly by kids at school, that they’re in the wrong bathroom.
They have a system for deciding which bathroom to use.
“On Mondays, Thursdays and Fridays, I go into the boys’ or men’s bathroom. On Tuesday, Wednesday and Saturday, I go into the women’s bathroom. And on Sunday, I just go to whatever bathroom’s to my right,” Hallel said.
“Remember when we were in the airport in Hawaii, and I said, ‘Hallel, you’re wearing a dress. I don’t think you should be going into the men’s room even though there’s no line.’ Remember that?” Shira asked.
“Well, I really had to go,” Hallel said.
“I know,” said Shira, “but I was just nervous that you would not be protected in the bathroom.”
“But I thought all those questions became laws,” said Hallel. The family campaigned for the 2018 ballot Question 3 in Massachusetts, which passed, confirming Hallel’s right to use a bathroom aligned with their gender identity.
“We know that you’re protected in Massachusetts, but we have to do our research to understand what the protection is in other states,” Shira explained.
“Well, everyone in Hawaii is nice,” Hallel said.
Hawaii is among the states with laws that specifically protect transgender people in public accommodations.
‘Now Is Now’
In addition to legal concerns, big questions remain for Hallel and their parents.
In a few years, Hallel will begin preparing for a coming-of-age ceremony in the Jewish faith, using Hebrew, a language that doesn’t have a gender-neutral pronoun. Hallel plans what they are calling a “bart mitzvah,” combining a boy’s bar mitzvah and a girl’s bat mitzvah.
Hallel will be defining a new place for themself within Judaism as they approach puberty, a time when testosterone will deepen Hallel’s voice and make irreversible changes in the bone structure of Hallel’s face and other areas of the body.
“We’ve started to talk with Hallel a little bit,” Ari said. “Hallel very much understands that there are male bodies and female bodies, and on the basis of this conversation Hallel says they feel comfortable with having a male body. So that’s where we are right now.”
Ari and Shira are getting some help for Hallel through a program at Jewish Big Brothers Big Sisters for LGBTQ+ youth. Within the family, by the way, Hallel is a “brister” to two younger sisters, merging “brother” and “sister.”
Shira looks forward to guidance from someone who can help her understand life as a nonbinary teenager and adult.
“I am very worried about what Hallel’s future will look like,” she said. “My kid affirmed who they are, and … I decided to accept them. But what’s that going to look like when Hallel is 11, 12, 13, in adolescence? I hope it’s gonna be wonderful. I don’t know, though.”
Ari said he has a lot of confidence that Hallel will be OK, based, in part, on the culture he sees among the college students he teaches.
“My students are very comfortable with the idea that people don’t have just male and female genders, and I think that says a lot for our future,” Ari said. “I’m personally very hopeful that Hallel will live in a world where they can be who they want to be.”
Shira has heard people ask: “Why are all these kids now being trans? Or why are all these kids now being nonbinary?”
“With Hallel, this is who they envisioned themselves to be, and we just didn’t put hurdles in front of them,” she said. “That may be the case for more kids who are trans and nonbinary; their parents are just listening to them.”
Hallel has lots of projects underway with Legos, a podcast, baking and a comic book series they sometimes imagine will lead to fame and fortune. But they don’t spend much time thinking about the future.
“I’ll know it when I live it,” Hallel said. “I don’t really want to think about that stuff because now is now.”
This story is part of a partnership that includes WBUR, NPR and KHN.
The shot fired into Alan Pean's chest would extinguish his family's belief that diligent high achievers could outwit the racism that shadows the American promise.
This article was published on Monday, May 10, 2021 in Kaiser Health News.
The beer bottle that cracked over Christian Pean's head unleashed rivulets of blood that ran down his face and seeped into the soil in which Harold and Paloma Pean were growing their three boys. At the time, Christian was a confident high school student, a football player in the suburbs of McAllen, Texas, a border city at the state's southern tip where teenage boys — Hispanic, Black, white — sung along to rap songs, blaring out the N-word in careless refrain. "If you keep it up, we're going to fight," Christian warned a white boy who sang the racial epithet at a party one evening in the waning years of George W. Bush's presidency. And they did.
On that fall evening in 2005, Christian pushed and punched, his youthful ego stung to action by the warm blood on his face. A friend ushered Christian into a car and drove through the bedroom community of Mission, passing manicured golf greens, gable roofs and swimming pools, to the well-appointed home of Dr. Harold and Paloma Pean, who received their son with care and grace. At the time, even as he stitched closed the severed black skin on his son's forehead, Dr. Pean, a Haitian exile and internal medicine physician, believed his family's success in America was surely inevitable, not a choice to be made and remade by his adopted country's racist legacy.
Christian's younger brother, Alan, a popular sophomore linebacker who shunned rap music and dressed in well-heeled, preppy clothes, agitated to find the boy and fight him. "Everybody shut up and sit down," Paloma ordered. Inside her head, where thoughts roiled in her native Spanish, Paloma recalled her brother's advice when they were kids growing up in Mexico: No temas nada. Eres una chica valiente.Never be scared.You are a brave girl. She counseled restraint, empathy even. "Christian, we need to forgive. We don't know how the life of this guy is that he took that reaction." This is a country that recognizes wisdom, Paloma thought.
The Pean family's tentative truce with America's darker forces would not last long. In August 2015, when Alan was 26 and under care at a Houston hospital where he had sought treatment for bipolar delusions, off-duty police officers working as security guards would shoot him through the chest in his hospital room, then handcuff him as he lay bleeding on the floor. Alan would survive, only to be criminally charged by the Houston police.
The shot fired into Alan's chest would extinguish the Pean family's belief that diligent high achievers could outwit the racism that shadows the American promise. Equality would not be a choice left up to a trio of ambitious boys.
Nearly six years later, the Peans remain haunted by the ordeal, each of them grappling with what it means to be Black in America and their role in transforming American medicine. Christian and Dominique, the youngest Pean brother, both aspiring doctors, like their father, have joined forces with the legions of families working to expose and eradicate police brutality, even as they navigate more delicate territory cultivating careers in a largely white medical establishment.
Alan has seen his studies derailed. He remains embroiled in a lawsuit with the hospital and wavers over his responsibility to the fraternity of Black men who did not survive their own racist encounters with police.
And Paloma and Harold, torn from their Mexican and Haitian roots, look to buoy and reassure their sons, propel them to the future they have earned — even as they wonder whether the America they once revered doesn't exist.
"People don't want to admit we have racism," Paloma told me. "But Pean and me, we know the pain."
Harold Pean doesn't recall being raised Black or white. His native Haiti was fractured by schisms beyond skin color.
Harold was 13 when he, his sister and five brothers woke on a May morning in 1968 to find that their father, a prominent judge, had fled Port-au-Prince on one of the last planes to leave the island before another anti-Duvalier revolt pitched the republic into a season of executions. His father had received papers from President François Duvalier demanding he sign off on amendments to Haiti's Constitution to allow Duvalier to become president for life. Harold's father refused. Soldiers arrived at the Pean house days after his father escaped.
The Republic of Haiti was marked by Duvalier's capricious cruelty during Harold's youth, but as the son of a judge and grandnephew of a physician, he enjoyed a comfortable life in which the Pean children were expected to excel in school and pursue professional careers: engineering, medicine, science or politics. In school, the children learned of their ancestors' brave heroics, African slaves who revolted against French colonialists and established a free republic, and they saw Black men and women running fruit stands, banks, schools and the government. "I didn't experience racism as a kid," Harold remembers. "When you find racism as a kid, that makes you doubt yourself. But I never doubted myself."
Two years after Harold's father fled Haiti, his mother joined her husband in New York, leaving the Pean children in the care of relatives. In 1975, Harold and his siblings left Haiti and immigrated to New York City. New York was cold, like being inside a refrigerator, and the streets were much wider than in Haiti. His father had found a job as an elevator operator at Rockefeller Center.
At the time, Harold's older brother, Leslie, was attending medical school in Veracruz, Mexico, where tuition was cheaper than in the States, and his father urged Harold to join him. A native French speaker who knew no Spanish, Harold learned anatomy, pathology and biochemistry in a foreign tongue. And he was fluent in Spanish by the time he met María de Lourdes Ramos González, known as Paloma, on Valentine's Day 1979 at a party in Veracruz. Harold remembers the moment vividly: a vivacious young woman spilling out of a car in the parking lot, shouting her disapproval at the low-energy partygoers. "'Everybody is sitting here!'"
"They were so quiet," Paloma remembers. She pointed to the man she would eventually marry, "You! Dance with me!"
Growing up as the only girl in her parents' modest ranch in Tampico, a port city on the Gulf of Mexico, Paloma was expected to stay inside sewing, cleaning and reading while her three brothers ventured out freely. She felt loved and protected but fumed at her circumscribed life, pleading for a car for her quinceañera and pushing her father, the boss at a petroleum plant, to allow her to become a lawyer. Her father thought she should instead become a secretary, teacher or nurse. "I said, 'Why are you telling me that?' He said, 'Because you are going to get married, you are going to end up in your house. But I want you to have a career in case you don't have a good husband, you can leave.'" That good husband, Paloma understood, could be Mexican or white. She remembers her father saying, "I don't want Black or Chinese people in my family."
After earning a degree to teach elementary school, Paloma moved to Veracruz. When she was 21, her father installed her in a boarding house for women. Watched over by a prying house matron, Paloma and Harold's courtship unfolded under the guise of Harold teaching Paloma English. The couple dated for several years before Paloma told her father she wanted to get married to the handsome, young medical student. Harold had returned to New York, and Paloma was eager to join him.
Her father was skeptical. He had spent a few months in Chicago and seen America's racial unrest. "He told me, 'My daughter, I don't have any objections. He's a good man, but I'm scared for you. I'm scared for my grandkids because, let me tell you, your kids are going to be Black. And I don't know if you are ready to raise Black kids in the U.S.,'" Paloma remembers. "At that moment I didn't understand what he meant."
In the early 1980s, as Harold and Paloma started their lives together, the news from America spoke to racial divisions. The country was seized by a presidential campaign, in which the actor and former California Gov. Ronald Reagan courted segregationist Southern voters at a Mississippi fairground a few miles from where civil rights workers had been murdered in 1964. In Miami, Black residents protested after an all-white, all-male jury acquitted four white police officers who had beaten an unarmed Black motorcyclist, Arthur McDuffie, to death with their fists and nightclubs. Beaten him "like a dog" McDuffie's mother, Eula McDuffie, told reporters. Over three days of violent street protests, 18 people died, hundreds were injured, buildings burned and President Jimmy Carter called in the National Guard.
The couple lived in Queens, where Christian was born in 1987, and Harold found work while pursuing medicine. He inspected day care schools for sanitary violations. As he traveled around the city's streets, he never felt imperiled by the color of his skin. "People said there was racism, but I didn't see it." On the few occasions he noticed a police officer or shop security trailing him, he put it out of his mind, trying not to pursue the logic of what had happened. "We never talked about it in the house," he said. "We were concentrating on achieving whatever goals we had to do."
Moving with common purpose, Harold and Paloma went wherever the young doctor could find work. Caguas, Puerto Rico, where Alan was born in 1989; back to New York for Harold's residency in internal medicine at the Brooklyn Hospital Center; then Fort Pierce, Florida, where Dominique was born in 1991; and eventually to McAllen, Texas. Harold's brother, Leslie, had established his practice in Harlingen, 20 miles north of the Mexican border. Harold was comforted to have family nearby and Paloma wanted to reach her family in Mexico more easily. Still, the first hospital that recruited Harold offered an uncharitable contract; he had to cover half the costs of running the medical practice while seeing only a few patients.
Harold remembers few, if any, other Black doctors in the area. Paloma was more certain about the dearth of diversity in the medical ranks: "We were among the only Blacks in the [Rio Grande] Valley and the only [primary care] doctor." Three months into the contract, Paloma, who managed the office's finances, could see they were losing money. She pressed her husband to renegotiate. When he refused, she went to the hospital herself. "I love the Valley," she told the administrator, her optimism unimpeachable. "But I came here to work. My husband is a very good doctor and you are not paying what he deserves. If you don't pay him, we are going to move." Stunned, the administrator, who was white, agreed to her demands, and Paloma returned triumphant.
Daily life was a blur. The couple worked assiduously at the medical practice, finding allies at the hospital who applauded their diligence and, by Harold's account, rooted for their success. But race was never far from the surface. When a medical assistant at the office told Paloma that another doctor had asked her repeatedly if she was still working with "the Black doctor," Paloma fumed. At the medical center's Christmas party that year, Paloma approached the doctor. "'Are you so and so, the doctor?' I said. 'Well, I'm Paloma Pean, and I'm here just to let you know the name of my husband. My husband is Harold Pean. P-E-A-N. His last name is not Black.' And I said, 'Thank you, and nice to meet you.' He opened his eyes big, and then I left."
At home, Paloma insisted on a Catholic upbringing, and the family prayed every evening after dinner in three languages (Paloma in Spanish, Harold in French, the boys in English). Harold pushed his three boys in the ways his own parents had. "I was expecting them to be either a doctor or a professional, like my parents expected us to be professionals."
That was the period in which the three Pean boys — Christian, Alan and Dominique — tried to sort out their Blackness in a place that was almost entirely Hispanic and white. Accustomed to being surrounded by Latinos in Florida and later in McAllen, Paloma recalled her father's warnings. When the boys started nursery school, they were the only Black babies. "That's when I thought, I need to start to make them very proud of what they are."
The questions about skin color came early for Dominique, the youngest brother. His fellow kindergartners watched Paloma, a Latina, drop off her son for school in the mornings, and a cousin, who was Chinese, pick him up after the last bell. (Paloma's brother had married a Chinese woman.) "They asked me if I was adopted," Dominique remembers clearly. He told his mother, "I don't look like you." Would his father, pretty-please, pick him up at school to show the kids, once and for all that, no, he was not adopted? It was a conclusive victory. "The kids stopped bringing it up. 'OK, you're Black!'"
The boys steered in different directions, employing sports, fashion and culture to signal their preferences to the perplexed children of McAllen. "I really identified with my Hispanic side, but when people see me, they see a Black kid," remembers Dominique. He ventured to look "more Black," braiding his hair into cornrows and wearing FUBU, a line of clothing that telegraphed Black street pride. Meanwhile, Alan forged a collegiate look. He listened to "corny, white boy music" (Christian's words) and dressed in Abercrombie & Fitch.
The boys were left to their own to make sense of the off-handed remarks at school and on the football field. You're Black, you're supposed to jump farther. Do Black kids have extra muscles in their legs? You sound smart for a Black kid. You sound white. Does anyone know if the Pean brothers have big dicks?
"There was open ignorance back then," Christian remembers. The boys absorbed and repelled the remarks, protesting vigorously only when the N-word exploded in front of them. One of Alan's friends on the football team asked him, "What's up, d…igger?" replacing the N and smirking knowingly. Alan responded, "Why would you even do that?"
It never occurred to Dr. Pean to give his teenage boys "the talk," the dreaded conversation Black parents initiate to prepare their sons for police encounters. The day Christian came home, blood running down his forehead, Harold argued against pressing charges. "The chief of police was my friend, and I had a lot of police patients," Harold said. "I would meet white people or Black or Hispanic, and I never thought they would see me differently."
Where Harold was silent, Paloma was explicit. The history of African Americans amazed her. Dominique remembers his mother saying, "Being Black is beautiful. They came to the United States as slaves, and now they are doctors. That blood runs in you, and you are strong."
Of all the sons, the oldest boy, Christian, seemed the most curious about exactly what his heritage and his skin color had to do with who he was. Why hadn't his mother married a Mexican man? Why did other kids want to know if his dark skin rubbed off? Could they touch his hair? At age 6, Christian told his mother a Hispanic girl at school had called him the N-word and his mother a "wetback" as he sat in the cafeteria sipping a Capri Sun.
The racist lexicon of American youth befuddled Paloma. She asked Christian, "What does that mean?" "That word is bad," he responded.
Christian's doubts about his father's faith in American meritocracy emerged early. After he endured racist slurs and other offensive remarks at school, Christian told Harold that he felt he was treated differently "because I'm Black."
"No, Chief," his father responded, "hard work gets rewarded. It's not going to help anybody to get down on your race."
As mixed-race children, the legitimacy of the Pean brothers' Blackness trailed them into adulthood. At Georgetown University, Christian found an abundance of Black students for the first time — African Americans and immigrants from Nigeria, Ghana and the Caribbean — and unfamiliar fault lines began to emerge.
"When I was in high school, there was never Black immigrants vs. Black Americans," Christian said. But in college and later in medical school at Mount Sinai in East Harlem, Christian fielded questions from other Black students about whether scholarships for people of color should be set aside for African Americans descended from slaves, not children of Black immigrants like him.
At the Catholic University of America in Washington, D.C., Dominique was facing similar questions about his racial camp. When he joined the board of the Student Organization of Latinos, he was asked, "Are you Latino enough?"
"When I'm on the street, people see a Black man. But when I'm with my Black friends, they're like, Dom, you're not really Black," he said. The questions followed them into their personal lives: African American women berating Christian and Dominique for dating women who were not Black.
If the Pean brothers' Haitian and Mexican roots called into question their rightful membership among African Americans, the police discerned no difference. After graduating from high school in the McAllen suburbs, Alan matriculated to the University of Texas-Austin, a sprawling campus filled almost entirely with white, Hispanic and Asian students. Alan, laid-back and affable, made friends easily. It surprised him then when a security officer trailed him at a store in the mall while he shopped for jeans. "That was the moment when I was like, 'Oh, I'm Black," he said.
In August 2015, Alan Pean started the fall semester at the University of Houston where he had transferred to finish his degree in biological sciences. Within days, he began to feel agitated, and his mind slipped into a cinematic delusion in which he believed he was a stunt double for President Barack Obama. At other times, armed assassins chased him.
Alarmed by Alan's irrational Facebook posts and unable to reach him by phone, Christian called his parents, who were sitting in a darkened McAllen movie theater. He urged them to get to Houston. This was not a drill. In 2009, Alan had spent a week at a hospital for what doctors believed was bipolar disorder.
In the lucid moments between the delusions traversing his psyche, Alan knew he needed medical help. Around midnight, on Aug. 26, 2015, he drove to St. Joseph Medical Center in Houston, swerving erratically and crashing his white Lexus into other cars in the hospital parking lot. As he was hustled into the emergency room on a stretcher, Alan screamed, "I'm manic! I'm manic!"
The following morning, Paloma and Harold flew to Houston and arrived at St. Joseph Medical Center expecting to find sympathetic nurses and doctors eager to aid their troubled son. Both Harold and Christian had placed calls to the emergency department, alerting them to Alan's mental health history. Instead of finding their son being cared for as a man in the midst of a delusion, Harold and Paloma discovered doctors had not ordered a psychiatric evaluation or prescribed psychiatric medication.
Barred from seeing their son and galled by the hospital's refusal to provide psychiatric care, Harold and Paloma went to their hotel to try to rent a car so they could take Alan for treatment elsewhere. They were gone for half an hour.
In his hospital room, Alan became more agitated. He believed the oxygen tanks next to his bed controlled a spaceship and that he urgently needed to deactivate a nuclear device using the buttons on his bed. He stripped off his hospital gown and wandered into the hallway naked. A nurse called a "crisis code" and two off-duty Houston police officers, one white and one Latino, charged into Alan's room. They were unaccompanied by any nurses or doctors, and they closed the door behind them.
The officers would say later that Alan hit one of them and caused a laceration. The first officer fired a stun gun. When the electroshock failed to subdue Alan, according to officers' statements, the second officer said he feared for his safety and fired a bullet into Alan's chest, narrowly missing his heart.
Paloma and Harold arrived back at the hospital to find themselves plucked from their ordered lives and hurled into a world in which goodwill and compassion had vanished. Alan was in intensive care with a gunshot wound, and police officers were asking questions about his criminal record. (He had none.) Alan would be detained for attacking the security officers, they were told, and it was now a criminal matter.
Christian flew in from New York, Dominique from Fort Worth, and Uncle Leslie from McAllen. Inconclusive conversations with a hospital administrator strained their patience. "That's when I was told that we had to have a lawyer to see him," Leslie said, trembling even as he recounted it nearly six years later.
Paloma was bewildered that her appeals for fairness went unanswered. "I was expecting they would allow me to see my son immediately. I said, 'My son is a good boy. Let me go and see my kid, please! Please!'" She felt like a ghost, wandering the hospital unstuck in time. Suddenly, the complexions and accents of everyone around her mattered: One police officer was surely white, she thought, the other Hispanic, but maybe born in the U.S.? The nurses were Asian, perhaps Filipino?
Days later, the hospital relented, and nurses led her to a glass window. Alan lay sedated, a tube down his throat, handcuffed to the hospital bed. Paloma's chest tightened and she felt faint. "I pinched myself, and I said, 'This cannot be true.' I screamed to my Lord, 'Please hold me in your hands.'"
"That's when I really understood what my father was talking about," Paloma told me. This, she thought, is how America treats Black men.
Over the next few weeks, it became impossible to unravel what exactly had happened to Alan. Sgt. Steve Murdock, a Houston police investigator, told Christian that Alan had been out of control, picking up chairs, acting like a "Tasmanian devil." When the hospital eventually allowed the Pean family into Alan's room, Alan was groggy, his wrists and hands swollen. Standing by his bedside, Uncle Leslie asked Paloma, Harold, Dominique and Christian to hold hands and pray. A week later, Alan was transferred to a psychiatric unit, and his delusions began to lift. A few days later, he was released from the hospital.
It was pouring rain the day the Pean family left Houston. Alan insisted on driving — he always drove on family trips — and his parents and brothers, desperate for a return to normalcy, agreed. Paloma prayed on her rosary in the backseat, nestled next to Christian. Alan drove for 20 minutes until someone suggested they stop and eat. At that moment, Alan turned to his father, "Did I really just drive out of Houston with a bullet wound still in my chest? Pop, I probably shouldn't be driving." Dominique drove the last five hours home.
Back in McAllen, neighbors passed on their sympathies, dumbfounded that the Pean's "well-behaved" middle child, the son of a "respected doctor," had been shot. Just as Harold years before had sewn up the gash in Christian's head left by a racially charged fistfight, he and Christian now tended to the piercing pain in Alan's ribs and changed the dressings of his wound.
That Alan survived a gunshot to the chest meant he faced a messy legal thicket. The police charged him with two accounts of aggravated assault of a police officer and, three months after the shooting, added a third charge of reckless driving. The criminal charges shocked his family.
"At the time, I thought the police and the hospital would apologize, or go to jail," said Dominique. "If a doctor amputated the wrong leg, there would be instant changes." A lawyer for the family readied a lawsuit against the hospital and demanded the federal government investigate the hospital's practice of allowing armed security officers into patients' rooms.
The seed of injustice planted in Alan's chest took root in the Pean family.
In October 2015, two months after the shooting, Christian summoned the family from Texas to New York City to march in a #RiseUpOctober protest against police brutality. On a brisk fall day, the five Peans held hands in Washington Square Park wearing custom-made T-shirts that read, "Medicine, Not Bullets." Quentin Tarantino, the film director, had flown in from California for the event, and activist Cornel West addressed the combustive crowd. Families shouted stories of loved ones killed by police.
Harold had never protested before and stood quietly, taking in the crowds and megaphone chants. Paloma embraced the spirit of the march, kissing her sons with hurricane force as the crowd made its way through Lower Manhattan. She found common cause with mothers whose Black sons had not survived their encounters with police. "We were very lucky that my son was alive," Paloma said.
The Peans' attorney had advised Alan not to speak publicly, fearing it would torpedo the lawsuit against the Houston hospital. Christian had his own reservations; he was applying for orthopedic residency programs, a notably conservative field in which only 1.5% of orthopedic surgeons are Black. "Everything is Google-able," he told me. "I wasn't sure what people would think about me being involved in Black Lives Matter or being outspoken."
When protesters began to chant "F— the police!" Christian moved into the crowd to change its tenor. He argued briefly with a white family whose daughter had been shot in the head and killed. This isn't how we move forward, he told them. Christian wanted to summon empathy and unity. Instead, he saw around him boiling vitriol. The protest turned unruly; 11 people were arrested.
Afterward, Alan expressed shock at the crowds, so consumed with anger. Christian wondered, How many of us are out there?
Six months passed, eight months. Expectations of quick justice left the Pean family like a breath. The Houston Police Department declined to discipline the two officers who tased and shot Alan. Mark Bernard, then chief executive officer of St. Joseph hospital, told federal investigators that given the same circumstances, the officers "would not have done anything different."
A brief reprieve arrived in March 2016, when a Harris County grand jury declined to indict Alan on criminal assault charges, and the district attorney's office dropped the reckless driving charge. The family's civil lawsuit against the hospital; its corporate owner, IASIS Healthcare Corp.; Criterion Healthcare Security; the city of Houston; and the police officers dragged on, one lawyer replaced by another, draining the family checkbook.
The Peans, meanwhile, registered each new death of a Black person killed by police as if Alan were shot once more. "It was all I could think about, I had dreams about it," Dominique said. "I felt powerless." Memories stored away resurfaced, eliciting doubts about a trail of misunderstood clues and neon warnings. Dominique had been close in age to Trayvon Martin when the Florida teenager was killed in 2012. Dominique remembers thinking, "It's terrible, it's wrong, but it would never happen with me. I have nice clothes on. I'm going to get my master's and become a doctor."
Even Uncle Leslie, who each year donated generously to the Fraternal Order of Police and had brushed off the numerous times police had stopped his car, caved under the overwhelming evidence. "I never related to the police killings until it happened to us," he confessed. "Now I doubt about whether they are protecting society as a whole." He has stopped giving money to the police association.
By 2017, Christian, Alan and Dominique had reunited in New York City. For a time, they shared an apartment in East Harlem. Their industrious lives resumed in haste; young men with advanced degrees to earn, careers to forge, loves to be found, just as their parents had done at that dud of a party in Veracruz.
Primed by his own experiences, the nick on his forehead a reminder of earlier battles, Christian pressed the family to speak out. Appointed the family spokesperson, he expanded the problems that would need fixing to guarantee the safety of Black men on the streets and in hospitals: racial profiling, healthcare inequities, the dearth of Black medical students. Working at a feverish pace, he aced crushing med school exams and pressed more than 1,000 medical professionals across the country to sign a petition protesting Alan's shooting and the use of armed security guards in hospitals.
"My perspective was, we should be public about this," Christian said. "We don't have anything to hide."
He embraced activism as part of his career, even if it meant navigating orthopedic residency interviews with white surgeons who eyed his résumé with skepticism. Would he be too distracted to be a good surgeon? He delivered a speech at his medical school graduation, and wrote a textbook chapter and spoke at the Mayo Clinic on healthcare inequities. Medical school deans asked Christian to help shape their response to the deaths of Breonna Taylor and George Floyd, and friends sought out his opinion. "For many people, I'm their only Black friend," he said. Christian has told the story of Alan's shooting over and over, at physician conferences and medical schools to shine a bright light on structural racism.
Over the months we spoke, Christian, now 33, juggled long days and nights as chief resident of orthopedic trauma at Jamaica Hospital in Queens with his commitments to Physicians for Criminal Justice Reform, Orthopedic Relief Services International and academic diversity panels. He is the über-polymath, coolly cerebral in the operating room and magnetic and winning in his burgeoning career as a thought leader.
Christian's family imagines he will run for office someday, a congressman, maybe. "He's charismatic, he has good ideas," said Dominique. "He's got big plans."
Dominique, too, has tried to spread the gospel, pushing for action where he could. He led an event in 2016 at the University of North Texas in Fort Worth using Alan's story as a case study in the catastrophic collision of racism, mental health and guns in hospitals.
When he moved to New York for medical school, joining his brothers, Dominique was anxious when he spotted police officers on the street. "I would try to be more peppy or upbeat, like whistling Vivaldi." But with each death — Stephon Clark, Atatiana Jefferson, Breonna Taylor, Daniel Prude, George Floyd, Rayshard Brooks, Daunte Wright — he has come to view these offerings as pointless. "After Alan, it doesn't matter how big I smile," Dominique decided.
Now 29 and a third-year medical student at Touro College of Osteopathic Medicine in Harlem, he said, "You can have all these resources and it doesn't mean anything because of the color of your skin, because there is a system in place that works against you. It's been so many years, and we didn't get justice."
Dominique has devised a routine for each new shooting: watch the videos of Black men and women killed by police or white vigilantes and read about their cases. Then set them aside and pivot back to his studies and school where there are few other Black doctors in training.
"I can escape by doing that," he told me. "I still need to do well for myself."
For Alan, as the years passed, time took on a bendable quality. It snapped straight with purpose — a talk show appearance on "The Dr. Oz Show," presentations with his brothers at medical schools in Texas, Massachusetts and Connecticut — and then lost its shape to resignation. Survival had bought him an uneasy liberty: He feared squandering the emotional potency of his own story but remained squeamish at the prostrations demanded by daytime TV shows, the tedium of repeating his story in front of strangers, doubting whether his life's misfortune was fueling social progress or exploiting a private tragedy.
In 2017, Alan enrolled at the City University of New York to study healthcare management, digging into a blizzard of statistics about police shootings and patients in crisis, and transferred the following year to a similar program at Mount Sinai. But by last fall, Alan had settled into a personal malaise. He dropped out of Mount Sinai's program, and spent hours in his room, restless and uncertain.
"I'm still working with coming to terms with who I am, my position in the family," said Alan, 32. "Christian is an orthopedic surgeon. Dominique is in medical school." After years of pursuing various degrees (biology, healthcare management, physician assistant, public health), that might not be who he is after all.
"Inside I didn't want to do it," he said. "It translates as a failure."
"Alan goes back and forth about whether he wants to write about it or go back to his regular life," Christian said. "I see him all the time, every day, being disappointed in himself for not being more outspoken, not feeling the free will to choose what to do with this thing."
Isn't it enough that he survived?
Alan sees a therapist and takes medication for bipolar disorder. He practices yoga. When he breathes deeply, his chest tingles, most likely nerve damage from where the bullet pierced. After a great deal of thinking, he has turned to writing science fiction and posting it online. The writing comes easily, mostly stories of his delusions told with exquisite detail — people, good and bad, with him in a place "that looks like Hell."
Outside of his apartment in New York, there are few places he can find sanctuary. Even as the coronavirus emptied the streets, he walked around the city, his eyes scanning for police cars, police uniforms, each venture to the store a tactical challenge. He selects his clothes carefully. "Never before 2015 had police officers stood out to me. Now, if they are a block away, I see them. That's how real the threat is. I have to think, 'What am I wearing? Do I have my ID? Which direction am I going?'
"If I were a white person, do they ever think those things?"
Reports of new shootings stir up his own trauma, and Alan trembles at the betrayal. "Why is it so hard to register that an unarmed person should not be shot?"
COVID presented new trauma for the Pean family, and underscored the nation's racial divide. The three brothers largely were confined to their apartment. Dominique attended medical school classes online while Christian volunteered to work at Bellevue, a public hospital struggling to treat a torrent of COVID patients who were dying at a terrifying pace. Many patients spoke only Spanish, and Christian served as both physician and interpreter.
The patients coming to Bellevue were nearly all Black or Latino and poor, and Christian grew angrier each day as he saw wealthier private hospitals, including NYU Langone just a few blocks away, showered with resources. The gaping death rates between the two hospitals would prove startling: About 11% of COVID patients died at NYU Langone; at Bellevue, about 22% died. "This wasn't the kind of death I was used to," Christian said.
At the peak of the epidemic in New York, Christian video-called his dad at home in Mission, Texas, and cried, exhausted and overwhelmed. Harold and Paloma had largely shuttered their clinic after several staff members became infected, but Harold continued to see urgent cases. Knowing the dangers to front-line healthcare workers, Christian was scared for his parents. "I was worried my dad wasn't going to protect himself," he said. "And that I was going to lose one of my parents and I wasn't going to be able to say goodbye."
All that was stirring inside Christian when Minneapolis police officer Derek Chauvin callously murdered George Floyd in May 2020, sparking protests across the globe. Black Lives Matter demonstrators filled New York City's streets, and Christian and Dominique joined them. Alan did not; the lockdown and blaring ambulance sirens had left him anxious and hypervigilant, and after months indoors, he feared open spaces.
"I'm going to wait this one out," he told Christian.
On the streets, surrounded by the fury and calls for change, Christian wore his white doctor's coat, a potent symbol of solidarity. "I wanted to show that people who were on the front lines of the pandemic realized who the pandemic was affecting was reflective of the racism that led to George Floyd's death." When they returned home, Christian told Alan that the multiethnic makeup of the protesters surprised him. "I think maybe people's minds are changing," Christian said. "It was beautiful to see."
Nearly a year later, on April 20, 2021, a jury found Chauvin guilty of murder, and Christian felt a wash of relief. But in the days that followed, news coverage erupted about the fatal police shooting of a 13-year-old Latino boy in Chicago, and the death of a 16-year-old Black girl in Columbus, Ohio, also at the hands of police. The Pean family was unusually muted. "We only exchanged a few texts about it as a family," Christian said. "We said maybe things are changing, maybe not."
The Pean sons will scatter soon: Christian to Harvard University for a trauma medicine fellowship; Dominique to medical rotations at Nassau University Medical Center; and Alan to McAllen, where he will oversee the financial operations of his parents' business. It will be Alan's first time living alone. "The one semester I was almost going to live by myself I was in Houston, and I got shot. I need to do this by myself to know I can."
Watching violence unravel one of his son's lives has haunted Dr. Harold Pean — the threats to Black lives in American cities not escaped as easily as a Haitian dictator.
But Harold, 66, is reluctant to allow Alan's shooting to rewrite his American gospel; the shooting was a personal tragedy, not a transmutation of his identity. He pushes the memories from his mind when they appear and summons generosity. "Whatever the bad stuff, I keep it inside. I try to psych myself to think positively all the time," he said. "I want to see everyone like a human."
He has convinced himself that no more violence will befall his sons or, someday, his grandchildren. Still, he can no longer reconcile the tragedy of Alan's shooting with his Catholic beliefs. "If God was powerful, a lot of bad things would not have happened," he said.
"It's difficult for him to acknowledge that he's struggling," Christian said of his father. "He's a resilient person. He's never talked about the added burden of being a Black man in America."
"I think Paloma is the one keeping my brother together," Uncle Leslie told me.
But who is keeping Paloma together? To her sons, her husband, her fellow parishioners, Paloma, 63, brims with purpose. She's a fighter, an idealist. But at night, she sleeps with the phone beside her bed. When it rings, she jumps. Are you OK? In her dreams, she is often in danger. Many nights, she lies awake and talks aloud to God. "Why? For what? Tell me, Lord." (She speaks to the Lord in Spanish. "In English, I think he will not understand me!")
Paloma's activism is quietly public: her presence in the community of mostly white doctors; her motherly boasts about Christian and Dominique becoming physicians and Alan's return to McAllen; her insistence that racism is real in a part of the country where "White Lives Matter" signs abound. "I'm on a mission," she said. "I want to disarm hate."
But deep within her, that sense of purpose lives beside a fury she can't quell and a disappointment so profound it can make it hard to breathe. She wonders if God is punishing her for abandoning Mexico, and whether the U.S. soil in which she chose to grow her own family is poisoned. "Sometimes I feel like I want to leave everything," she told me. "I feel like I don't understand how people can be so selfish here in America."
They are dark thoughts that go largely unspoken, secrets kept even from her mother, age 90, who now lives with them in McAllen. Six years have passed since Alan was shot, and Paloma still has not told her mother what happened in that Houston hospital room. Nor will she ever.
"The pain I went through," Paloma said, "I don't want to give that pain to my mom."
Pamela Valfer needed multiple COVID tests after repeatedly visiting the hospital last fall to see her mother, who was being treated for cancer. Beds there were filling with COVID patients. Valfer heard the tests would be free.
So, she was surprised when the testing company billed her insurer $250 for each swab. She feared she might receive a bill herself. And that amount is toward the low end of what some hospitals and doctors have collected.
Hospitals are charging up to $650 for a simple, molecular COVID test that costs $50 or less to run, according to Medicare claims analyzed for KHN by Hospital Pricing Specialists (HPS). Charges by large health systems range from $20 to $1,419 per test, a new national survey by KFF shows. And some free-standing emergency rooms are charging more than $1,000 per test.
Authorities were saying "get tested, no one's going to be charged, and it turns out that's not true," said Valfer, a professor of visual arts who lives in Pasadena, California. "Now on the back end it's being passed onto the consumer" through high charges to insurers, she said. The insurance company passes on its higher costs to consumers in higher premiums.
As the pandemic enters its second year, no procedure has been more frequent than tests for the virus causing it. Gargantuan volume — 400 million tests and counting, for one type — combined with loose rules on prices have made the service a bonanza for hospitals and clinics, new data shows.
Lab companies have been booking record profits by charging $100 per test. Even in-network prices negotiated and paid by insurance companies often run much more than that and, according to one measure, have been rising on average in recent months.
Insurers and other payers "have no bargaining power in this game" because there is no price cap in some situations, said Ge Bai, an associate professor at Johns Hopkins Bloomberg School of Public Health who has studied test economics. When charges run far beyond the cost of the tests "it's predatory," she said. "It's price gouging."
The data shows that COVID tests continue to generate high charges from hospitals and clinics despite alarms raised by insurers, anecdotalreports of high prices and pushback from state regulators.
The listed charge for a basic PCR COVID test at Cedars-Sinai Medical Center in Los Angeles is $480. NewYork-Presbyterian Hospital lists $440 as the gross charge as well as the cash price. Those amounts are far above the $159 national average for the diagnostic test, which predominated during the first year of the pandemic, at more than 3,000 hospitals checked by HPS.
That's the amount billed to insurance companies, not what patients pay, Cedars spokesperson Cara Martinez said in an email.
"Patients themselves do not face any costs" for the tests, she said. "The amounts we charge [insurers] for medical care are set to cover our operating costs," capital needs and other items, she said.
Likewise at NewYork-Presbyterian, charges not covered by insurance "are not passed along to patients," the hospital said.
Many hospitals and labs follow the Medicare reimbursement rate, $100 for results within two days from high-volume tests. But there are outliers. Insurers oftentimes negotiate lower prices within their networks, although not for labs and testing options outside their purview.
Billing by hospitals and clinics from outside insurance company networks can be especially lucrative because the government requires insurers to pay their posted COVID-test price with no limit. Regulation for out-of-network vaccine charges, by contrast, is stricter. Charges for vaccines must be "reasonable," according to federal regulations, with relatively low Medicare prices as a possible guideline.
"There's a problem with the federal law" on test prices, said Sabrina Corlette, co-director of the Center on Health Insurance Reforms at Georgetown University. "The CARES Act requires insurers to pay the full billed charge to the provider. Unless they've negotiated, their hands are tied."
But even in-network payments can be highly profitable.
Optim Medical Center in Tattnall, Georgia, part of a chain of orthopedic practices and medical centers, collects $308 per COVID test from two insurers, its price list shows. Yale New Haven Hospital collects $182 from one insurer and $173 from another.
Yale New Haven's prices resulted from existing insurer agreements addressing unspecified new procedures such as the COVID test, said Patrick McCabe, senior vice president of finance for Yale New Haven Health.
"We didn't negotiate" specifically on COVID tests, he said. "We're not trying to take advantage of a crisis here."
Officials from Optim Medical Center did not respond to queries from KHN.
Castlight Health, which provides benefits and healthcare guidance to more than 60 Fortune 500 companies, analyzed for KHN the costs of 1.1 million COVID tests billed to insurers from March 2020 through this February. The analysis found an average charge of $90, with less than 1% of bills passing any cost along to the patient. Since last March, the average cost has gone up from $63 to as high as $97 per test in December before declining to $89 in February, the most recent results available.
In some cases, hospitals and clinics have supplemented revenue from COVID tests with extra charges that go far beyond those for a simple swab.
Warren Goldstein was surprised when Austin Emergency Center, in Texas, charged him and his wife $494 upfront for two COVID tests. He was shocked when the center billed insurance $1,978 for his test, which he expected would cost $100. His insurer paid $325 for "emergency services" for him, even though there was no emergency.
"It seemed like highway robbery," said Goldstein, a New York professor who was visiting his daughter and grandchild in Texas at the time.
Austin Emergency Center has been the subject of previous reports of high COVID-test prices.
The center provides "high-quality healthcare emergency services" and "our charges are set at the price that we believe reflects this quality of care," said Heather Neale, AEC's chief operating officer. The law requires the center to examine every patient "to determine whether or not an emergency medical condition exists," she said.
Curative, the lab company that billed $250 for Valfer's PCR tests, said through a spokesperson that its operating costs are higher than those of other providers and that consumers will never be billed for charges insurance doesn't cover. Valfer's insurer paid $125 for each test, claims documents show.
Even at relatively low prices, testing companies are reaping high profits. COVID PCR tests sold for $100 apiece helped Quest Diagnostics increase revenue by 49% in the first quarter of 2021 and quadruple its profits compared with the same period a year ago.
"We are expecting … to still do quite well in terms of reimbursement in the near term," Quest CFO Mark Guinan said during a recent earnings call.
Hospitals and clinics do pay tens of thousands of dollars upfront when purchasing analyzer machines, plus costs for chemical reagents, swabs and other collection materials, maintenance, and training and compensating staff members. But the more tests completed, the more cost-effective they are, said Marlene Sautter, director of laboratory services at Premier Inc., a group purchasing organization that works with 4,000 U.S. hospitals and health systems.
A World Health Organization cost assessment of running 5,000 COVID tests on Roche and Abbott analyzers — not including that initial equipment price, labor or shipping costs — came to $17 and $21 per test, respectively.
Unlike earlier in the pandemic, lab-based PCR tests no longer dominate the market. Cheaper, rapid options can now be purchased online or in stores. In mid-April, some CVS, Walmart and Walgreens stores began selling a two-pack of Abbott Laboratories' BinaxNOW antigen test for $23.99.
Regulations require insurers to cover COVID testing administered or referred by a healthcare provider at no cost to the patient. But exceptions are made for public health surveillance and work- or school-related testing.
Claire Lemcke, who works for a Flagstaff, Arizona, nonprofit, was tested at a mall in January and received a statement from an out-of-state lab company saying that the price was $737, that it was performed out-of-network and that she would be responsible for paying. She's working with her insurer, which has already paid $400, to try to get it settled.
Sticker shock from COVID tests has gotten bad enough that Medicare set up a hotline for insurance companies to report bad actors, and states across the country are taking action.
Free-standing emergency centers across Texas, like the one Goldstein visited, have charged particularly exorbitant prices, propelling the Texas Association of Health Plans to write a formal complaint in late January. The 19-page letter details how many of these operations violate state disclosure requirements, charge over $1,000 per COVID test and add thousands more in facility fees associated with the visit.
These free-standing ERs are "among the worst offenders when it comes to price gouging, egregious billing, and providing unnecessary care and tests," the letter says.
In December, the Kansas Insurance Department investigated a lab whose cash price was listed at nearly $1,000. State legislatures in both Minnesota and Connecticut have introduced bills to crack down on price gouging since the pandemic began.
"If these astronomical costs charged by unscrupulous providers are borne by the health plans and insurers without recompense, consumers will ultimately pay more for their healthcare as health insurance costs will rise," Justin McFarland, Kansas Insurance Department's general counsel, wrote in a Dec. 16 letter.
Long before they receive a dementia diagnosis, many people start losing their ability to manage their finances and make sound decisions as their memory, organizational skills and self-control falter, studies show.
This article was published on Wednesday, May 5, 2021 in Kaiser Health News.
After Maria Turner’s minivan was totaled in an accident a dozen years ago, she grew impatient waiting for the insurance company to process the claim. One night, she saw a red pickup truck on eBay for $20,000. She thought it was just what she needed. She clicked “buy it now” and went to bed. The next morning, she got an email about arranging delivery. Only then did she remember what she’d done.
Making such a big purchase with no forethought and then forgetting about it was completely out of character for Turner, then a critical care nurse in Greenville, South Carolina. Although she was able to back out of the deal without financial consequences, the experience scared her.
“I made a joke out of it, but it really disturbed me,” Turner said.
It didn’t stop her, though. She shopped impulsively online with her credit card, buying dozens of pairs of shoes, hospital scrubs and garden gnomes. When boxes arrived, she didn’t remember ordering them.
Six years passed before Turner, now 53, got a medical explanation for her spending binges, headaches and memory lapses: Doctors told her that imaging of her brain showed all the hallmarks of chronic traumatic encephalopathy.CTE is a degenerative brain disease that in Turner’s case may be linked to the many concussions she suffered as a competitive horseback rider in her youth. Her doctors now also see evidence of Alzheimer’s disease and frontotemporal dementia, which affects the frontal and temporal lobes of the brain. These may have roots in her CTE.
Turner’s money troubles aren’t unusual among people who are beginning to experience cognitive declines. Long before they receive a dementia diagnosis, many people start losing their ability to manage their finances and make sound decisions as their memory, organizational skills and self-control falter, studies show. As people fall behind on their bills or make unwise purchases and investments, their bank balances and credit rating may take a hit.
Mental health experts say the covid pandemic may have masked such early lapses during the past year. Many older people have remained isolated from loved ones who might be the first to notice unpaid bills or unopened bank notices.
“That financial decision-making safety net may have been weakened,” said Carole Roan Gresenz, interim dean at Georgetown University’s School of Nursing and Health Studies, who co-authored a study examining the effect of early-stage Alzheimer’s disease on household finances. “We haven’t been able to visit, and while technology can provide some help, it’s not the same … as sitting next to people and reviewing their checking account with them.”
Even during times that aren’t complicated by a global health crisis, families may miss the signs that someone is struggling with finances, experts say.
“It’s not uncommon at all for us to hear that one of the first signs that families become aware of is around a person’s financial dealings,” said Beth Kallmyer, vice president for care and support at the Alzheimer’s Association.
Early in the disease, Kallmyer said, dementia robs people of the abilities they need to manage money: “executive functioning” skills like planning and problem-solving, as well as judgment, memory and the ability to understand context.
People who live alone may be the most likely to slip through the cracks, their lapses unnoticed, Kallmyer said. And many adult children may be reluctant to discuss personal finances with their parents, who often guard their independence.
About 6 million Americans are living with Alzheimer’s disease, the most common cause of dementia. Dementia is an umbrella term for a range of conditions associated with declines in mental abilities that are severe enough to interfere with daily life. There is no cure. Alzheimer’s, which killed more than 133,000 Americans in 2020, is the seventh-leading cause of death in the U.S.
Many people have mild symptoms for years before they are diagnosed. During this stage, before obvious impairment, they may make substantial errors managing their finances.
In Gresenz’s study, researchers linked data from Medicare claims between 1992 and 2014 with results from the federally funded Health and Retirement Study, which regularly surveys older adults about their finances, among other things. Her study, published in the journal Health Economics in 2019, found that during early-stage Alzheimer’s, people were up to 27% more likely than cognitively healthy people to experience a large decline in their liquid assets, such as savings and checking accounts, stocks and bonds.
Another study, published in JAMA Internal Medicinein November,linked Medicare claims data to the Federal Reserve Bank of New York/Equifax Consumer Credit Panel to track people’s credit card payments and credit scores. The study found that people with Alzheimer’s and related dementias were more likely to miss bill payments up to six years before they were diagnosed than were people who were never diagnosed. The researchers also noted that the people later diagnosed with dementia started to show subprime credit scores 2.5 years before the others.
“We went into the study thinking we might be able to see these financial indicators,” said Lauren Hersch Nicholas, an associate professor of public health at the University of Colorado, who co-authored the study. “But we were sort of surprised and dismayed to find that you really could. That means it’s sufficiently common because we’re picking it up in a sample of 80,000 people.”
For decades, Pam McElreath kept the books for the insurance agency that she and her husband, Jimmy, owned in Aberdeen, North Carolina. In the early 2000s, she started having trouble with routine tasks. She assigned the wrong billing codes to expenditures, filled in checks with the wrong year, forgot to pay the premium on her husband’s life insurance policy.
Everyone makes mistakes, right? It’s just part of aging, her friends would say.
“But it’s not like my friend that made that one mistake, one time,” saidMcElreath, 67. “Every month I was having to correct more mistakes. And I knew something was wrong.”
She was diagnosed with mild cognitive impairment in 2011, at age 56, and with early-onset Alzheimer’s two years later. In 2017, doctors changed her diagnosis to frontotemporal dementia.
Receiving a devastating diagnosis is hard enough, but learning to cope with it is also hard. Eventually both McElreath and Maria Turner put mechanisms in place to keep their finances on an even keel.
Turner, who has two adult children, lives alone. After her diagnosis, she hired a financial manager, and together they set up a system that provides Turner with a set amount of spending money every month and doesn’t allow her to make large withdrawals on impulse. She ditched her credit cards and removed eBay and Amazon from her phone.
Though not a micromanager, Turner’s financial adviser keeps an eye on her spending and questions her when something seems off.
“Did you realize you spent X?” she’ll ask, Turner said.
“And I’ll be like, ‘No, I didn’t.’ And that’s the thing. I’m aware but I’m not aware,” she added.
In 2017, Pam and Jimmy McElreath sold their insurance agency to spend more time together and moved west to Sugar Grove, in the Blue Ridge Mountains. They worked with a therapist to figure out how to ensure Pam is able to continue to do as much as possible.
These days, Pam still signs their personal checks, but now Jimmy looks them over before sending them out. The system is working so far.
“At first I was mad, and I went through this dark time,” Pam said, adding: “But the more that you come to accept your problem, the easier it is to say, ‘I need help.’”
Jimmy’s gentle approach helped. “He was so good about telling me when I did something wrong but doing it in such a kind way, not blaming me for making mistakes. We’ve been able to work it out.”
Tips for Helping a Loved One
It’s not easy to broach financial management issues with an elderly parent or other relative experiencing cognitive trouble. Ideally, you and they will have these conversations before problems develop.
As an adult child, you might mention you’ve been talking with a financial adviser about managing your own finances to ease into a conversation about what your elder is doing, said Beth Kallmyer of the Alzheimer’s Association.
Or suggest that allowing a shared financial management arrangement would eliminate the hassle of tracking and paying bills.
“Often people are open to the idea of making their lives easier,” Kallmyer said.
Whatever the approach, it’s important to plan and take steps to protect assets.
“Part and parcel of any legal or estate planning is protecting oneself in the event of incapacity,” said Jeffrey Bloom, an elder law attorney at Margolis & Bloom in the Boston area.
Specific steps depend on the family and their financial situation, but here are some to consider:
Encourage the parent in need of help to sign a financial power of attorney.
These legal documents authorize you or another person to act on a parent’s behalf in financial matters. The terms may be narrow or broad, allowing you to make all financial decisions or to perform specific duties like paying bills, making account transfers or filing taxes.
A “durable” power of attorney allows you to make decisions even if your parent becomes incapacitated. In some states, power of attorney documents are automatically considered durable.
Put assets in a trust.
A trust is a legal vehicle that can hold a range of assets and property. It can spell out how those assets are managed and distributed while people are alive or after they die.
“We do believe in the power of attorney, but we believe in the trust as an even better tool in the event of incapacity,” Bloom said.
Trusts can be tailored to a client’s concerns and provide more guidance than a power of attorney document about what money can be spent on and who has access under what circumstances, among other things.
You might be a co-trustee on major distributions, for example, or there may be rules that provide for you or others to review and be notified of any changes, Bloom said.
The Alzheimer’s Association recommends working with an attorney who specializes in trusts to ensure all laws and regulations are followed, Kallmyer said.
Have your name added as another user on a parent’s bank accounts, credit cards or other financial accounts.
This may be a convenient way to make payments or monitor activity. But a shared account can be problematic if children are sued, for example, or wish to withdraw the money for their own use.
The funds typically belong to all parties whose names are on the account. Unlike a power of attorney, the child isn’t obligated to act in a parent’s best interest.
Each of these setups may help protect a parent’s assets. But parents may not welcome what they see as interference, no matter how well meaning family members are. Typically, they can refuse to permit children’s access to their financial information or revoke permission previously granted.
Finding a balance between protecting someone and usurping their rights is hard, said Bloom. The only way to ensure financial control is to go to court to establish guardianship or conservatorship. But that is a serious step not to be taken lightly.
“You only want to do that if there’s a major risk.”
The panel recommends that all Americans select a primary care provider or be assigned one, a landmark step that could reorient how care is delivered in the nation's fragmented medical system.
This article was published on Tuesday, May 4, 2021 in Kaiser Health News.
The federal government must aggressively bolster primary care and connect more Americans with a dedicated source of care, the National Academies of Sciences, Engineering and Medicine warn in a major report that sounds the alarm about an endangered foundation of the U.S. health system.
The urgently worded report, which comes as internists, family doctors and pediatricians nationwide struggle with the economic fallout of the coronavirus pandemic, calls for a broad recognition that primary care is a "common good" akin to public education.
The authors recommend that all Americans select a primary care provider or be assigned one, a landmark step that could reorient how care is delivered in the nation's fragmented medical system.
And the report calls on major government health plans such as Medicare and Medicaid to shift money to primary care and away from the medical specialties that have long commanded the biggest fees in the U.S. system.
"High-quality primary care is the foundation of a robust healthcare system, and perhaps more importantly, it is the essential element for improving the health of the U.S. population," the report concludes. "Yet, in large part because of chronic underinvestment, primary care in the United States is slowly dying."
The report, which is advisory, does not guarantee federal action. But reports from the national academies have helped support major health initiatives over the years, such as curbing tobacco use among children and protecting patients from medical errors.
Strengthening primary care has long been seen as a critical public health need. And research dating back more than half a century shows that robust primary care systems save money, improve people's health and even save lives.
"We know that better access to primary care leads to more timely identification of problems, better management of chronic disease and better coordination of care," said Melinda Abrams, executive vice president of the Commonwealth Fund, a New York-based foundation that studies health systems around the world.
Recognizing the value of this kind of care, many nations — from wealthy democracies like the United Kingdom and the Netherlands to middle-income countries such as Costa Rica and Thailand — have deliberately constructed health systems around primary care.
And many have reaped significant rewards. Europeans with chronic illnesses such as diabetes, high blood pressure, cancer and depression reported significantly better health if they lived in a country with a robust primary care system, a group of researchers found.
For decades, experts here have called for this country to make a similar commitment.
But only about 5% of U.S. healthcare spending goes to primary care, versus an average of 14% in other wealthy nations, according to data collected by the Organization for Economic Co-operation and Development.
Other research shows that primary spending has declined in many U.S. states in recent years.
The situation grew even more dire as the pandemic forced thousands of primary care physicians — who didn't receive the government largesse showered on major medical systems — to lay off staff members or even close their doors.
Reversing this slide will require new investment, the authors of the new report conclude. But, they argue, that should yield big dividends.
"If we increase the supply of primary care, more people and more communities will be healthier, and no other part of healthcare can make this claim," said Dr. Robert Phillips, a family physician who co-chaired the committee that produced the report. Phillips also directs the Center for Professionalism and Value in Healthcare at the American Board of Family Medicine.
The report urges new initiatives to build more health centers, especially in underserved areas that are frequently home to minority communities, and to expand primary care teams, including nurse practitioners, pharmacists and mental health specialists.
And it advocates new efforts to shift away from paying physicians for every patient visit, a system that critics have long argued doesn't incentivize doctors to keep patients healthy.
Potentially most controversial, however, is the report's recommendation that Medicare and Medicaid, as well as commercial insurers and employers that provide their workers with health benefits, ask their members to declare a primary care provider. Anyone who does not, the report notes, should be assigned a provider.
"Successfully implementing high-quality primary care means everyone should have access to the 'sustained relationships' primary care offers," the report notes.
This idea of formally linking patients with a primary care office — often called empanelment — isn't new. Kaiser Permanente, consistently among the nation's best-performing health systems, has long made primary care central. (KHN is not affiliated with Kaiser Permanente.)
But the model, which was at the heart of managed-care health plans, suffered in the backlash against HMOs in the 1990s, when some health plans forced primary care providers to act as "gatekeepers" to keep patients away from costlier specialty care.
More recently, however, a growing number of experts and primary care advocates have shown that linking patients with a primary care provider need not limit access to care.
Indeed, a new generation of medical systems that rely on primary care to look after elderly Americans on Medicare with chronic medical conditions has demonstrated great success in keeping patients healthier and costs down. These "advanced primary care" systems include ChenMed, Iora Health and Oak Street Health.
"If you don't have empanelment, you don't really have continuity of care," said Dr. Tom Bodenheimer, an internist who founded the Center for Excellence in Primary Care at the University of California-San Francisco and has called for stronger primary care systems for decades.
Bodenheimer added: "We know that continuity of care is linked to everything good: better preventive care, higher patient satisfaction, better chronic care and lower costs. It is really fundamental."
Tobin's pharmacy and department store had already stocked its shelves with Easter and Mother's Day items last spring, and the staff had just placed the Christmas orders. The shop in Oconomowoc, Wisconsin, had been operating on a razor's edge as retail sales moved online and mail-order pharmacies siphoned off its patients. It was losing money on 1 out of 4 pill bottles filled, so the front of the store, where it sold clothing, cosmetics and jewelry, had been compensating for pharmacy losses for years.
"And then COVID hit," said Dave Schultz, who co-owned the store with his brother. "And that was the final straw."
The COVID-19 pandemic sank many businesses in 2020, particularly those relying on in-person sales to stay afloat. For pharmacies — especially independent pharmacies — the pandemic lockdowns exacerbated long-standing economic pressures. Many small owner-operated pharmacies adapted quickly, delivering their traditional amenities in safer ways or capitalizing on new services created by the pandemic, such as COVID testing and vaccinations. But others, like Tobin's, became casualties of the pandemic, closing their doors for good.
It's too early to quantify just how many pharmacies succumbed to COVID and assess how patients will be affected. The total number of pharmacies has declined less than 1% over the past five years, as pharmacy chains get larger while independent community pharmacies — often the last place left to fill a prescription in some small towns — go under. The Rural Policy Research Institute found that 1,231 independently owned rural pharmacies, about 16%, closed for good from 2003 to 2018, well before the pandemic pinch. And according to the Drug Channels Institute, after five years of declines, the number of urban and rural independent pharmacies dipped below 20,000 for the first time in 2020.
Revenue from COVID testing and vaccinations may help keep some independents afloat, but that comes with added costs and logistical challenges.
"Pharmacies are struggling," said Harry Lattanzio, president of PRS Pharmacy Services, a consulting firm in Latrobe, Pennsylvania. "We're getting calls from a lot more pharmacy owners that want to sell their stores. They've had enough."
Most pharmacies, he said, saw a decline in prescriptions last year as customers hesitated to visit their doctors for anything but emergencies. That drop in business also meant fewer sales of over-the-counter medicines and ancillary items sold by the stores. Meanwhile, pharmacies had to buy protective equipment to keep staffers and customers safe and beef up their technology to address the new reality.
Lattanzio said some independent pharmacies, which had always preferred the personal touch of having staff members answer the phones, have had to invest in new systems to handle thousands of calls a day from people seeking vaccines. Costs rose even as revenues dropped.
"For the most part, they lost money," Lattanzio said. "If you didn't lose money, you did something really right."
When Lattanzio opened his first pharmacy 20 years ago, he saw gross profit margins of 36%. Now independent pharmacies are fortunate to see margins of 3% to 5%, if they survive the pandemic at all. Much of that decline comes from the impact of pharmacy benefit managers, which manage commercial and public health plans' prescription drug reimbursements to pharmacies. Those PBMs, often aligned with large drugstore chains, systematically squeezed the profits out of independent pharmacies. That left many smaller chains or unaffiliated pharmacies unable to bear the added hit from the pandemic.
"I'm afraid to see the outcome," said Joe Moose, co-owner of Moose Pharmacy, a chain of seven drugstores on the outskirts of Charlotte, North Carolina. "The delay in payments, the increased cost to keep operating in the early days of this, combined with the fact that reimbursement is so poor already — COVID may be the final nail in the coffin for some of us."
Moose Pharmacy is trying to adapt. When it had to stop in-store purchases during the pandemic, the chain expanded curbside services and hired additional drivers. Home deliveries tripled. Workers ferried food, toilet paper, paper towels and shampoo to customers.
"We had to build out our website. We put in technology so that people could text us from the parking lot. It had to be HIPAA-compliant," said Moose, who owns the chain with his brother. "And keep in mind that all of that is happening at no change in reimbursement."
COVID also interrupted the medication supply chain. In normal times, the pharmacy's supply of drugs is automated, so when it dispenses medicines, replacements show up in the next day's delivery. But Moose and his staff had to resort to the old way of calling up five or six wholesalers to see who had the drugs in stock.
When COVID testing was scarce, the pharmacies taught their employees to perform rapid tests. Once vaccines arrived, Moose sought out patients who couldn't make an appointment on a smartphone, who couldn't drive to mass vaccination clinics, or who were just afraid to leave their home.
Staffers delivered vaccines to one elderly man with cancer, whose wife had died a year earlier. He and his disabled adult son didn't want to risk going out and contracting the virus.
"But he trusts us, and so we deliver medication to him probably every other week," Moose said. "So it made sense that we bring the vaccine to him."
Tripp Logan, a pharmacist in Charleston, Missouri, said one of his three pharmacies is in rural Mississippi County, which has no hospital or chain pharmacy for the 14,000 residents. There, four independent pharmacies and the county health department formed a consortium to help distribute COVID vaccines.
"It started with a group text, and the next thing you know, we're vaccinating hundreds of people a week collectively," Logan said.
Because pharmacies can make up to $70 per COVID test and $40 for each vaccination, many pharmacies are earning new revenue to offset some of the retail losses, said Owen BonDurant, president of Independent Rx Consulting in Centerville, Ohio.
"So that has brought a significant increase in profit margins for the short term," BonDurant said. "COVID has probably saved a lot of pharmacies. Because PBM pressure has been so hard, especially on some of these rural and inner-city pharmacies, a lot of them still are on the verge of going out of business."
The cash infusion from the federal Paycheck Protection Program also kept many pharmacies afloat, and allowed some to make investments that better position them for the future.
"We would have had to shut down or sell because the PBMs were brutal last year, and they killed off a lot of our friends in Wisconsin," said Dan Strause, president and chief executive officer of Hometown Pharmacy in Madison, Wisconsin. "Without the PPP, there would have been far more facing the same fate."
Some of the changes born of necessity could stick. In a recent survey by the National Community Pharmacists Association, 3 in 5 community pharmacists said they expect more pharmacies to offer point-of-care testing after the pandemic, and more than half said additional pharmacies will give immunizations.
Hashim Zaibak, CEO of Hayat Pharmacy in Milwaukee, said his pharmacy is considering testing for the flu, strep and hemoglobin A1C levels for those with diabetes, and it will continue providing vaccinations.
"Those changes are here to stay," Zaibak said.
Tobin's owners considered selling their pharmacy, but finding no buyers, they shut down for good in September. Schultz said it's unclear whether they could have survived had COVID not happened — or if the vaccine revenue might have helped. He knows of two other independent pharmacies in Wisconsin that closed in the past 18 months.
"The real crux of the matter is you're getting paid, in some cases, $60 under the cost that we end up paying for the medication," he said. "How do you justify that portion of your business?"
Oconomowoc has one independent drugstore, two grocery store pharmacies and a Walgreens to serve its 17,000 residents. But Schultz worries about many of the older, sicker customers who relied on the personalized care his pharmacy provided. One of his former pharmacists now works at a drugstore outside of town but delivers medications to some of Tobin's most vulnerable former customers on her way home.
"She just didn't think they would survive going someplace else," he said.