Brugge lifted up one of the jars and gazed at it with reverence. Each jar holds samples of breast tissue donated by patients after they underwent a tissue biopsy or breast surgery — samples that may reveal a new way to prevent breast cancer.

Brugge and her research team have analyzed the cell structure of more than 100 samples.

Using high-powered microscopes and complex computer algorithms, they diagram each stage in the development of breast cancer: from the first sign of cell mutation to the formation of tiny clusters, well before they are large enough to be considered tumors.

Their quest is to prevent breast cancer, a disease that afflicts roughly 1 in 8 U.S. women over their lifetimes, as well as some men. Their ultimate goal is to relieve the pain, suffering, and risk of death that accompany this disease. And their painstaking work, unspooling across six years of a seven-year, , has yielded results.

In late 2024, Brugge and her colleagues in breast tissue that contain the genetic seeds of breast tumors.

And they discovered that these “seed cells” are surprisingly common. In fact, they are present in the normal, healthy tissue of every breast sample her lab has examined, Brugge said, including samples from patients who haven’t had breast cancer but have had surgery for other reasons, such as breast reduction or a biopsy that proved benign.

The next research challenge for Brugge’s lab is clear: Find ways to detect, isolate, and terminate the mutant cells before they can spread and form tumors.

“I’m excited about what we’re doing right now,” Brugge said. “I think we could make a difference, so I don’t want to stop.”

Work in Brugge’s lab slowed significantly last year. In April, her from the National Cancer Institute at the National Institutes of Health was frozen, along with virtually all other federal money awarded to Harvard researchers.

The Trump administration said it was withholding the funds of antisemitism on campus.

Some of Brugge’s lab staff lost federal fellowships that funded their work. Brugge told others funded through the NIH grant that she couldn’t guarantee their salaries. In all, Brugge lost seven of her 18 lab employees.

In September, the funding for the NIH grant was restored. But in the intervening months, the Trump administration said Brugge and other Harvard researchers for the next round of multiyear grants.

A federal judge , but Brugge had missed the deadline to apply for renewal. So her current funding will end in August.

Brugge scrambled to secure private funding from foundations and philanthropists. She was then able to reinstate two positions for at least a year — but job applicants are wary.

Across the United States, the future of federal funding for cancer research is uncertain.

President Donald Trump has proposed by nearly 40% in the 2026 fiscal year.

In a , the White House said the “NIH has broken the trust of the American people with wasteful spending, misleading information, risky research, and the promotion of dangerous ideologies that undermine public health.”

But Congress has other plans: The released on Jan. 20 that would set the NIH’s budget at $48.7 billion, $415 million more than in the 2025 fiscal year.

In the meantime, advocates such as with the are reminding lawmakers that the cancer death rate has declined — — due in part to federally funded research advances.

“But we still have an incredible ways to go before we can say that we’ve changed the trajectory of cancer,” Fleury said. “There are still cancer types that are fairly lethal, and there are still populations of people for whom their experience of cancer is vastly different from other groups.”

Reductions in research funding will have a direct impact on treatment options for patients, Fleury said. For example, a 10% cut to the NIH budget would eventually result in two fewer new drugs or treatments per year, according to from the nonpartisan Congressional Budget Office.

A recent study looked at drugs that were developed through NIH-funded research and approved by the Food and Drug Administration since 2000. More than half those drugs would probably if the NIH had been operating with a 40% smaller budget.

“We can’t say, ‘But for that grant, that [specific] drug would not have come into existence,’” said , a co-author of the study and a professor at the Massachusetts Institute of Technology. But fewer drugs would have made it to market, he said. “It makes us at least want to pause and say, ‘What are we doing here? Are we shooting ourselves in the foot?’”

Amid all the uncertainty, Brugge has trouble focusing on her goal of finding new ways to prevent breast cancer.

Nowadays, she spends about half her time searching for new sources of funding, managing her remaining employees’ anxieties, and monitoring the most recent news about Harvard, the Trump administration, and the NIH and other federal agencies that have experienced grant freezes, staff layoffs, and other disruptions.

She’d rather return her attention to her ongoing investigations, which she’s confident could eventually save lives.

The breakdown of Brugge’s lab highlights another problem: The U.S. is kneecapping the next generation of cancer researchers. Her employees included , postdocs, and graduate students. Of the seven who left the lab in 2025, one left the U.S., one took a job at a health care management company, four went back to school, and one is still looking for work.

One of Brugge’s former staffers, Y., is a computational biologist. She helped design and run a tool that analyzes millions of breast tissue cells from the samples in the pink-lidded jars.

Y. moved to Switzerland in October to begin a PhD program. ºÚÁϳԹÏÍø News and NPR are identifying her by her middle initial because she plans to return to the U.S. for scientific conferences and worries that speaking publicly about her experience could risk future visa approvals.

“I thought the U.S. would be a safe place for scientists to learn and grow,” said Y., who moved to Boston from abroad for Harvard’s master’s degree program in bioinformatics. “I really hope that those who have the opportunities to study this further can fill in those missing pieces in cancer research.”

Brugge is no longer accepting job applicants from outside the U.S., even if they are top candidates, because she can’t afford to pay the Trump administration’s on visas for some foreign researchers.

The Association of American Universities and the U.S. Chamber of Commerce have , claiming the fee is misguided and illegal. The Trump administration said the fee would and improve opportunities for Americans.

Brugge doubts work in her lab will ever return to normal.

“There’ll always be, now, this existential threat to the research,” Brugge said. “I will definitely be concerned because we don’t know what’s going to happen in the future that might trigger a similar kind of action.”

Brugge has thought about shutting down her lab. But she still employs staff members whose future scientific careers are tied to finishing some of the research. And when she looks at those pink-lidded jars, she still sees so much promise.

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MacDonald wanted to find a new doctor right away. She needed refills for her blood pressure medications and wanted to book a follow-up appointment after a breast cancer scare. 

She called 10 primary care practices near her home in Westwood, Massachusetts. None of the doctors, nurse practitioners, or physician assistants was taking new patients. A few offices told her that a doctor could see her in a year and a half or two years.

“I was just shocked by that, because we live in Boston and we’re supposed to have this great medical care,” said MacDonald, who is in her late 40s and has private health insurance. “I couldn’t get my mind around the fact that we didn’t have any doctors.”

The shortage of primary care providers is a , but it’s particularly acute in Massachusetts. The state’s primary care workforce is shrinking faster than in most states, according to a .

Some health networks, including the state’s largest hospital chain, , are turning to artificial intelligence for solutions.

In September, right when MacDonald was running out of blood pressure medications, MGB launched a new AI-supported program, . MacDonald had received a letter from MGB, telling her no primary care providers in the network were taking new patients for in-person care. At the bottom of the letter was a link to Care Connect.

MacDonald downloaded the app and requested a telehealth appointment with a doctor. She then spent about 10 minutes chatting with an AI agent about why she wanted to see a physician. Afterward, the AI tool sent a summary of the chat to a primary care doctor who could see MacDonald by video.

“I think I got an appointment the next day or two days later,” she said. “It was just such a difference from being told I had to wait two years.”

Round-the-Clock Convenience

MGB says the AI tool can handle patients seeking care for colds, nausea, rashes, sprains, and other common urgent care requests, as well as mild to moderate mental health concerns and issues related to chronic diseases. After the patient types in a description of the symptoms or problem, the AI tool sends a doctor a suggested diagnosis and treatment plan.

Care Connect employs 12 physicians to work with the AI. They log in remotely from around the U.S., and patients can get help round-the-clock, seven days a week.

Care Connect is one of many AI-based tools that hospitals, doctors, and administrative staff are testing for a range of routine medical tasks, including note-taking, reviewing diagnostic results, billing, and ordering supplies.

Proponents argue that these AI programs can help relieve staff burnout and worker shortages by reducing time spent on medical records, referrals, and other administrative tasks. But there’s debate about and to use AI to improve diagnoses. Critics worry that AI agents miss important details about overlapping medical conditions.

Critics also point out that AI tools can’t assess whether patients can afford follow-up care or get to that appointment. They have no insight into family dynamics or caretaking needs, things that primary physicians come to understand through long-term personal relationships.

Since her first foray on the app in September, MacDonald has used Care Connect at least three more times. Two of those interactions led to an eventual conversation with a remote doctor, but when she went online to book an appointment for travel-related shots, she interacted only with the AI chatbot before visiting the travel clinic.

MacDonald likes the convenience.

“I don’t have to leave work,” she said. “And I gained some peace of mind, knowing that I have a plan between now and me finding another in-person doctor.”

So while she hunted for that person, MacDonald planned to stay with Care Connect.

“This is a logical solution in the short term,” MacDonald said. “At the end of the day, it’s the patient who’s feeling the aftermath of all of the bigger things going on in health care.”

Scarcity and Burnout

Many factors contribute to the shortage of providers. Many primary care doctors, such as pediatricians, internists, and family medicine physicians, are dissatisfied with their pay. They earn about , on average, than specialists such as surgeons, cardiologists, and anesthesiologists. 

At the same time, their workload has been increasing. Primary care doctors days packed with complex patient visits, followed by evenings spent updating medical records and responding to patient messages.

When MacDonald signed onto Care Connect, she was one of 15,000 patients in the Mass General Brigham system without a primary care provider. That number has grown as primary care doctors have left MGB for rival hospital networks.

, a primary care physician at an MGB health center in Chelsea, Massachusetts, said she’s staying at MGB for now, but she’s grown frustrated with the system’s leaders.

“They don’t make any effort to ease the shortage,” said Rao, who is also part of an MBG’s primary care doctors. “They put their money into specialties. Primary care feels like a peripheral part of the system, when it really should be a central part.”

Last year, MGB pledged to spend $400 million over five years on primary care services — though that includes the multiyear contract with Care Connect.

“Care Connect is just one solution among many in this broader strategy to alleviate the primary care capacity crisis,” , MGB’s chief operating officer, said in an emailed statement. “Our investment supports retaining our current physicians as well as recruiting new ones.”

Walls said MGB has increased staffing support for primary care physicians, implemented other AI tools, and hired a new executive for primary care. Some of these changes are based on recommendations from their own primary care doctors.

But some of those doctors say they would like other changes, and salary increases in particular.

Walls would not disclose the exact amount MGB is spending on Care Connect.

Bridge to Better Care or a ‘Band-Aid’?

MGB has rolled out other AI tools, including one that can transcribe a doctor’s in-person conversations with patients. Rao isn’t using that tool. She worries that patient information could be leaked and medical privacy violated, and she doesn’t want her conversations with patients to be used to help develop the next generation of AI medical tools.

“What if they’re just using my interactions with patients to train their AI and boot me out of my job?” she said.

That’s not the goal, said , a primary care physician who manages the program for MGB. All decisions about patient care are still made by real doctors, she said.

“We are not replacing our in-person primary care,” she said. “It’s still important, and the majority of patients still have in-person primary care.”

But the fear among some primary care doctors at MGB is that Care Connect will gradually erode access to in-person primary care visits. Of the $400 million pledged by MGB for primary care, they want less spent on AI and more used to attract and increase pay for primary care staffers.

, an MGB internist who is also involved in the unionizing effort, said the use of Care Connect can only fill a gap. “That sounds like a band-aid for a broken system to me,” he said.

Expanding AI Tools

As of mid-December, the Care Connect doctors were each seeing 40 to 50 patients a day. By February, the MGB network plans to make Care Connect available to all Massachusetts and New Hampshire residents who have health insurance, and to hire more doctors to staff the program as needed. 

Patients can use the program like an urgent care service, Ireland said. They can also decide to make one of the remote doctors their permanent primary care provider.

“Some patients want in-person care,” Ireland said. “But I do believe there’s a subset of patients who will appreciate the 24-hour, seven-day-a-week model and choose to be a part of this.”

Care Connect isn’t for patients who need emergency care or a physical exam, she said. And patients who need tests or imaging are referred to the network’s clinics or labs.

But the remote doctors can manage some of the same routine issues that all primary care doctors do, Ireland said, including moderate respiratory infections, allergies, and chronic conditions such as diabetes, high cholesterol, and depression. 

says only immediate, not ongoing, health problems should be on that list. Lin is chief of primary care at the Stanford University School of Medicine and founded Stanford’s Healthcare AI Applied Research Team.

“In its current state, the safest use of this tool is for more urgent care issues,” Lin said. “Your upper respiratory tract infections. Your urinary tract infections. Your musculoskeletal injuries. Your rashes.”

For patients with multiple chronic conditions such as high blood pressure and diabetes — or for patients with especially serious conditions like heart disease or cancer — Lin said nothing beats a human who sees you regularly.

Still, Lin agrees that the chat summary generated after an AI encounter can help a physician be more efficient. For patients, Lin understands the practical appeal of a virtual option.

“I would rather these patients get care, if that care can be safe,” he said, “than not get care at all.”

The company that developed the AI platform for Care Connect, , contends the program is delivering safe, effective care to patients with complex, chronic ailments — many of whom have no other option besides a hospital emergency room.

“America’s got a big problem with health care, issues with cost, quality, and access,” said , the company’s CEO. “To solve it, you need to start with primary care, and you have to use technology and AI.”

In addition to Mass General Brigham, K Health partners with five other health networks, including the highly ranked and Los Angeles-based .

In a funded by K Health, Cedars-Sinai researchers compared several hundred diagnosis and treatment recommendations made by AI with those made by physicians.

The researchers found the AI to be slightly better at identifying “critical red flags” and recommending care based on clinical guidelines, though the physicians were better at adjusting their treatment recommendations as they spoke more with the patient.

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The result is a pilot effort called the Clean Power Prescription program. The initiative aims to help keep the lights on for roughly 80 patients with complex, chronic medical needs.

The program relies on 519 solar panels installed on the roof of one of the hospital’s office buildings. Half the energy generated by the panels helps power the medical center. The rest goes to patients who receive a monthly credit of about $50 on their utility bills.

Kiki Polk was among the first recipients. She has a history of Type 2 diabetes and high blood pressure.

On a warm fall day, Polk, who was nine months pregnant at the time, leaned into the air conditioning window unit in her living room.

“Oh my gosh, this feels so good, baby,” Polk crooned, swaying back and forth. “This is my best friend and my worst enemy.”

An enemy, because Polk can’t afford to run the AC. On cooler days, she has used a fan or opened a window instead. Polk knew the , including added stress on the pregnant person’s heart and potential risks to the fetus. She also has a teenage daughter who uses the AC in her bedroom — too much, according to her mom.

Polk got behind on her utility bill. , her electricity provider, worked with her on a payment plan. But the bills were still high for Polk, who works as a school bus and lunchroom monitor. She was surprised when staff at Boston Medical Center, where she was a patient, offered to help.

“I always think they’re only there for, you know, medical stuff,” Polk said, “not the personal financial stuff.”

Polk is on maternity leave now to care for her baby, the tiny Briana Moore.

Goldman, who is also BMC’s medical director of climate and sustainability, said hospital screening questionnaires show thousands of patients like Polk struggle to pay their utility bills.

“I had a conversation recently with someone who had a hospital bed at home,” Goldman said. “They were using so much energy because of the hospital bed that they were facing a utility shut-off.”

Goldman wrote a letter to the utility company requesting that the power stay on. Last year, she and her colleagues at Boston Medical Center wrote 1,674 letters to utility companies asking them to keep patients’ gas or electricity running. Goldman took that number to Bob Biggio, the hospital’s chief sustainability and real estate officer. He’d been counting on the solar panels to help the hospital shift to renewable energy, but sharing the power with patients felt as if it fit the health system’s mission.

“Boston Medical Center’s been focused on lower-income communities and trying to change their health outcomes for over 100 years,” Biggio said. “So this just seemed like the right thing to do.”

Standing on the roof amid the solar panels, Goldman pointed out a large vegetable garden one floor down.

“We’re actually growing food for our patients,” she said. “And, similarly, now we are producing electricity for our patients as a way to address all of the factors that can contribute to health outcomes.”

Many hospitals help patients sign up for electricity or heating assistance because research shows that not having them . Aparna Bole, a pediatrician and senior consultant in the Office of Climate Change and Health Equity at the federal Department of Health and Human Services, said these are common problems for low- and moderate-income patients. BMC’s approach to solving them may be the first of its kind, she said.

“To be able to connect those very patients with clean, renewable energy in such a way that reduces their utility bills is really groundbreaking,” Bole said.

Bole is using a on the solar credits program to show other hospitals how they might do something similar. Boston Medical Center officials estimate the project cost $1.6 million, and said 60% of the funding came from the federal Inflation Reduction Act. Biggio has already mapped plans for an additional $11 million in solar installations.

“Our goal is to scale this pilot and help a lot more patients,” he said.

The expansion he envisions would allow a tenfold increase in patients who could be served by the program, but it still would not meet the demand. For now, each patient in the pilot program receives assistance for just one year. Boston Medical Center is looking for partners who might want to share their solar energy with the hospital’s patients in exchange for a higher federal tax credit or reimbursement.

Eversource’s vice president for energy efficiency, Tilak Subrahmanian, said the pilot was a complex project to launch, but now that it’s in place, it could be expanded.

“If other institutions are willing to step up, we’ll figure it out,” Subrahmanian said, “because there is such a need.”

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Divo explains that boot-shaped inhalers, which represent of the U.S. market for asthma medication, save lives but also contribute to climate change. Each puff from an inhaler releases a hydrofluorocarbon gas that is as the most commonly known greenhouse gas, carbon dioxide.

“That absolutely never occurred to me,” said Rubinstein. “Especially, I mean, these are little, teeny things.”

So Divo has begun offering a more eco-friendly option to some patients with asthma and other lung diseases: a plastic, gray cylinder about the size and shape of a hockey puck that contains powdered medicine. Patients suck the powder into their lungs — no puff of gas required and no greenhouse gas emissions.

“You have the same medications, two different delivery systems,” Divo said.

Patients in the United States are prescribed roughly of what doctors call metered-dose inhalers each year, according to the most recently available data published in 2020. The cumulative amount of gas released is the equivalent of driving half a million gas-powered cars for a year. So, the benefits of moving to dry powder inhalers from gas inhalers could add up.

Hydrofluorocarbon gas contributes to climate change, which is creating more wildfire smoke, other types of air pollution, and longer allergy seasons. These conditions can make breathing more difficult — especially for people with asthma and chronic obstructive pulmonary disease, or COPD — and increase the use of inhalers.

Divo is one of a small but growing number of U.S. physicians determined to reverse what they see as an unhealthy cycle.

“There is only one planet and one human race,” Divo said. “We are creating our own problems and we need to do something.”

So Divo is working with patients like Rubinstein who may be willing to switch to dry powder inhalers. Rubinstein said no to the idea at first because the powder inhaler would have been more expensive. Then his insurer increased the copay on the metered-dose inhaler so Rubinstein decided to try the dry powder.

“For me, price is a big thing,” said Rubinstein, who has tracked health care and pharmaceutical spending in his professional roles for years. Inhaling the medicine using more of his own lung power was an adjustment. “The powder is a very strange thing, to blow powder into your mouth and lungs.”

But for Rubinstein, the new inhaler works and his asthma is under control. A recent study found that some patients in the who use dry powder inhalers have better asthma control while reducing greenhouse gas emissions. In Sweden, where the vast majority of , are lower .

Rubinstein is one of a small number of U.S. patients who have made the transition. Divo said that, for a variety of reasons, only about a quarter of his patients even consider switching. Dry powder inhalers are often more expensive than gas propellant inhalers. For some, dry powder isn’t a good option because not all asthma or COPD sufferers can get their medications in this form. And dry powder inhalers aren’t recommended for young children or elderly patients with diminished lung strength.

Also, some patients using dry powder inhalers worry that without the noise from the spray, they may not be receiving the proper dose. Other patients don’t like the taste powder inhalers can leave in their mouths.

Divo said his priority is making sure patients have an inhaler they are comfortable using and that they can afford. But, when appropriate, he’ll keep offering the dry powder option.

Advocacy groups for asthma and COPD patients support more conversations about the connection between inhalers and climate change.

“The climate crisis makes these individuals have a higher risk of exacerbation and worsening disease,” said , chief medical officer of the . “We don’t want medications to contribute to that.”

Rizzo said there is work being done to make metered-dose inhalers more climate-friendly. The United States and many other countries are , which are also used in refrigerators and air conditioners. It’s part of the global attempt to avoid the worst possible impacts of climate change. But inhaler manufacturers are from those requirements and can continue to use the gases while they explore new options.

Some have pledged to produce canisters with and to submit them for regulatory review by next year. It’s not clear when these inhalers might be available in pharmacies. Separately, the FDA is spending about $6 million on a of developing inhalers with a smaller carbon footprint.

Rizzo and other lung specialists worry these changes will translate into higher prices. That’s what happened in the early to mid-2000s when ozone-depleting chlorofluorocarbons (CFCs) of inhalers. Manufacturers changed the gas in metered-dose inhalers and the cost to patients . Today, many of those re-engineered inhalers remain expensive.

William Feldman, a pulmonologist and health policy researcher at Brigham and Women’s Hospital, said these dramatic price increases occur because manufacturers register updated inhalers as new products, even though they deliver medications already on the market. The manufacturers are then awarded patents, which prevent the production of competing generic medications for decades. The Federal Trade Commission says it is .

After the CFC ban, “manufacturers from the inhalers,” Feldman said of the re-engineered inhalers.

When inhaler costs went up, physicians say, patients cut back on puffs and suffered more asthma attacks. , medical director for climate and sustainability at Brigham and Women’s Hospital, is worried that’s about to happen again.

“While these new propellants are potentially a real positive development, there’s also a significant risk that we’re going to see patients and payers face significant cost hikes,” Furie said.

Some of the largest inhaler manufacturers, including GSK, are for allegedly inflating prices in the United States. Sydney Dodson-Nease told NPR and ºÚÁϳԹÏÍø News that the company has a strong record for keeping medicines accessible to patients but that it’s too early to comment on the price of the more environmentally sensitive inhalers the company is developing.

Developing affordable, effective, and climate-friendly inhalers will be important for hospitals as well as patients. The that hospitals looking to shrink their carbon footprint reduce inhaler emissions. Some hospital administrators see switching inhalers as low-hanging fruit on the list of climate-change improvements a hospital might make.

But , medical director of environmental stewardship at Providence, a hospital network in Oregon, said, “It’s not as easy as swapping inhalers.”

Chesebro said that even among metered-dose inhalers, the climate impact varies. So pharmacists should suggest the inhalers with the fewest greenhouse gas emissions. Insurers should also adjust reimbursements to favor climate-friendly alternatives, he said, and regulators could consider emissions when reviewing hospital performance.

, a family physician in Toronto, said clinicians can make a big difference with inhaler emissions by starting with the question: Does the patient in front of me really need one?

Green, who works on a project to make inhalers , said that a third of adults diagnosed with asthma may not have the disease.

“So that’s an easy place to start,” Green said. “Make sure the patient prescribed an inhaler is actually benefiting from it.”

Green said educating patients has a measurable effect. In her experience, patients are moved to learn that emissions from the approximately 200 puffs in one inhaler are in a gas-powered car. Some say switching to dry powder inhalers may be as beneficial for the climate as a patient .

One of the hospitals in Green’s health care network, , found that talking to patients about inhalers led to a significant decrease in the use of metered-dose devices. Over six months, the hospital went from 70% of patients using the puffers, to 30%.

Green said patients who switched to dry powder inhalers have largely stuck with them and appreciate using a device that is less likely to exacerbate environmental conditions that inflame asthma.

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A 17-year-old boy with shaggy blond hair stepped onto the scale at Tri-River Family Health Center in Uxbridge, Massachusetts.

After he was weighed, he headed for an exam room decorated with decals of planets and cartoon characters. A nurse checked his blood pressure. A pediatrician asked about school, home life, and his friendships.

This seemed like a routine teen checkup, the kind that happens in thousands of pediatric practices across the U.S. every day — until the doctor popped his next question.

“Any cravings for opioids at all?” asked . The patient shook his head.

“None, not at all?” Medina said again, to confirm.

“None,” said the boy named Sam, in a quiet but confident voice.

Only Sam’s first name is being used for this article because if his full name were publicized he could face discrimination in housing and job searches based on his prior drug use.

Medina was treating Sam for an addiction to opioids. He prescribed a medication called buprenorphine, which curbs cravings for the more dangerous and addictive opioid pills. Sam’s urine tests showed no signs of the Percocet or OxyContin pills he had been buying on Snapchat, the pills that fueled Sam’s addiction.

“What makes me really proud of you, Sam, is how committed you are to getting better,” said Medina, whose practice is part of .

The American Academy of Pediatrics addicted to opioids. But only 6% of pediatricians report ever doing do, according to .

In fact, buprenorphine prescriptions for adolescents as overdose deaths for 10- to 19-year-olds . These overdoses, combined with accidental opioid poisonings among young children, have become the for U.S. children.

“We’re really far from where we need to be and we’re far on a couple of different fronts,” said the chief of adolescent medicine at and a co-author of the study that surveyed pediatricians about addiction treatment.

That survey showed that many pediatricians don’t think they have the right training or personnel for this type of care — although Medina and other pediatricians who do manage patients with addiction say they haven’t had to hire any additional staff.

Some pediatricians responded to the survey by saying they don’t have enough patients to justify learning about this type of care, or don’t think it’s a pediatrician’s job.

“A lot of that has to do with training,” said , associate director for pediatric programs for the Yale Program in Addiction Medicine. “It’s seen as something that’s a very specialized area of medicine and, therefore, people are not exposed to it during routine medical training.”

Camenga and Hadland said medical schools and pediatric residency programs are working to add information to their curricula about substance use disorders, including how to discuss drug and alcohol use with children and teens.

But the curricula aren’t changing to help the number of young people struggling with an addiction, not to mention .

In a twisted, deadly development, drug use among adolescents has declined — but .

The main culprits are fake Xanax, Adderall, or Percocet pills laced with the powerful opioid fentanyl. Nearly deaths among 10- to 19-year-olds were traced to counterfeit pills.

“Fentanyl and counterfeit pills is really complicating our efforts to stop these overdoses,” said , the Centers for Disease Control and Prevention’s expert on adolescent addiction medicine and overdose prevention. “Many times these kids are overdosing without any awareness of what they’re taking.”

Terranella said pediatricians can help by stepping up screening for — and having conversations about — all types of drug use.

He also suggests pediatricians prescribe more naloxone, the nasal spray that can reverse an overdose. It’s available over the counter, but Terranella, who practices in Tucson, Arizona, believes a prescription may carry more weight with patients.

Back in the exam room, Sam was about to get his first shot of Sublocade, an injection form of buprenorphine that lasts 30 days. Sam is switching to the shots because he didn’t like the taste of Suboxone, oral strips of buprenorphine that he was supposed to dissolve under his tongue. He was spitting them out before he got a full dose.

Many doctors also prefer to prescribe the shots because patients don’t have to remember to take them every day. But the injection is painful. Sam was surprised when he learned that it would be injected into his belly over the course of 20-30 seconds.

“Is it almost done?” Sam asked, while a nurse coaches him to breathe deeply. When it was over, staffers joked out loud that even adults usually swear when they get the shot. Sam said he didn’t know that was allowed. He’s mostly worried about any residual soreness that might interfere with his evening plans.

“Do you think I can snowboard tonight?” Sam asked the doctor.

“I totally think you can snowboard tonight,” Medina answered reassuringly.

Sam was going with a new buddy. Making new friends and cutting ties with his former social circle of teens who use drugs has been one of the hardest things, Sam said, since he entered rehab 15 months ago.

“Surrounding yourself with the right people is definitely a big thing you want to focus on,” Sam said. “That would be my biggest piece of advice.”

For Sam, finding addiction treatment in a medical office jammed with puzzles, toys, and picture books has not been as odd as he thought it would be.

He mom, Julie, had accompanied him to this appointment. She said she’s grateful the family found a doctor who understands teens and substance use.

Before he started visiting the Tri-River Family Health Center, Sam had seven months of residential and outpatient treatment — without ever being offered buprenorphine to help control cravings and prevent relapse. residential programs for youth offer it. When Sam’s cravings for opioids returned, a counselor suggested Julie call Medina.

“Oh my gosh, I would have been having Sam here, like, two or three years ago,” Julie said. “Would it have changed the path? I don’t know, but it would have been a more appropriate level of care for him.”

Some parents and pediatricians worry about starting a teenager on buprenorphine, which can produce including long-term dependence. Pediatricians who prescribe the medication weigh the possible side effects against the threat of a fentanyl overdose.

“In this era, where young people are dying at truly unprecedented rates of opioid overdose, it’s really critical that we save lives,” said Hadland. “And we know that buprenorphine is a medication that saves lives.”

Addiction care can take a lot of time for a pediatrician. Sam and Medina text several times a week. Medina stresses that any exchange that Sam asks to be kept confidential is not shared.

Medina said treating substance use disorder is one of the most rewarding things he does.

“If we can take care of it,” he said, “We have produced an adult that will no longer have a lifetime of these challenges to worry about.”

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An 80-plus-degree day is not sizzling by Phoenix standards. Even in Boston, it wasn’t high enough to trigger an official heat warning for the wider public.

But research has shown that those temperatures, coming so early in June, would likely drive up the number of heat-related hospital visits and deaths across the Boston region.

The targeted email alert the doctors and nurses at in Somerville, Massachusetts, got that day is part of a pilot project run by the nonprofit and Harvard University’s , known as C-CHANGE.

Medical clinicians based at 12 community-based clinics in seven states — California, Massachusetts, North Carolina, Oregon, Pennsylvania, Texas, and Wisconsin — are receiving these alerts.

At each location, the first email alert of the season was triggered when local temperatures reached the 90th percentile for that community. In a suburb of Portland, Oregon, that happened on May 14 during a springtime heat wave. In Houston, that occurred in early June.

A second email alert went out when forecasts indicated the thermometer would reach the 95th percentile. For Cambridge Health Alliance primary care physician Rebecca Rogers, that second alert arrived on July 6, when the high hit 87 degrees.

The emails remind Rogers and other clinicians to focus on patients who are particularly vulnerable to heat. That includes , , or patients with , , or .

Other at-risk groups include and people who can’t afford air conditioning, or who don’t have stable housing. Heat has been linked to complications as well.

“Heat can be dangerous to all of us,” said , director of health care solutions at C-CHANGE. “But the impacts are incredibly uneven based on who you are, where you live, and what type of resources you have.”

The pilot program aims to remind clinicians to start talking to patients about how to protect themselves on dangerously hot days, which are happening more frequently because of climate change. Heat is already the in the U.S. from weather-related hazards, Dresser said. Letting clinicians know when temperatures pose a particular threat to their patients could save lives.

“What we’re trying to say is, ‘You really need to go into heat mode now,'” said , vice president for science at Climate Central, with a recognition that “it’s going to be more dangerous for folks in your community who are more stressed.”

“This is not your grandmother’s heat,” said Ashley Ward, who directs the at Duke University. “The heat regime that we are seeing now is not what we experienced 10 or 20 years ago. So we have to accept that our environment has changed. This might very well be the coolest summer for the rest of our lives.”

The alerts bumped heat to the forefront of Rogers’ conversations with patients. She made time to ask each person whether they can cool off at home and at work.

That’s how she learned that one of her patients, Luciano Gomes, works in construction.

“If you were getting too hot at work and maybe starting to feel sick, do you know some things to look out for?” Rogers asked Gomes.

“No,” said Gomes slowly, shaking his head.

Rogers told Gomes about early signs of heat exhaustion: dizziness, weakness, or profuse sweating. She handed Gomes she’d printed out after receiving them  along with the email alerts.

They included information about how to avoid heat exhaustion and dehydration, as well as specific guidance for patients with asthma, chronic obstructive pulmonary disease (COPD), dementia, diabetes, multiple sclerosis, and mental health concerns.

Rogers pointed out a that ranges from pale yellow to dark gold. It’s a sort of hydration barometer, based on the color of one’s urine.

“So if your pee is dark like this during the day when you’re at work,” she told Gomes, “it probably means you need to drink more water.”

Gomes nodded. “This is more than you were expecting to talk about when you came to the doctor today, I think,” she said with a laugh.

During this visit, an interpreter translated the visit and information into Portuguese for Gomes, who is from Brazil and quite familiar with heat. But he now had questions for Rogers about the best ways to stay hydrated.

“Because here I’ve been addicted to soda,” Gomes told Rogers through the interpreter. “I’m trying to watch out for that and change to sparkling water. But I don’t have much knowledge on how much I can take of it.”

“As long as it doesn’t have sugar, it’s totally good,” Rogers said.

Now Rogers creates heat mitigation plans with each of her high-risk patients. But she still has medical questions that the research doesn’t yet address. For example: If patients take medications that make them urinate more often, could that lead to dehydration when it’s hot? Should she reduce their doses during the warmest weeks or months? And, if so, by how much? Research has yielded no firm answers to those questions.

Deidre Alessio, a nurse practitioner at Cambridge Health Alliance, also has received the email alerts. She has patients who sleep on the streets or in tents and search for places to cool off during the day.

“Getting these alerts makes me realize that I need to do more homework on the cities and towns where my patients live,” she said, “and help them find transportation to a cooling center.”

Most clinics and hospitals don’t have heat alerts built into electronic medical records, don’t filter patients based on heat vulnerability, and don’t have systems in place to send heat warnings to some or all of their patients.

“I would love to see health care institutions get the resources to staff the appropriate outreach,” said Gaurab Basu, a Cambridge Health Alliance physician who co-directs the Center for Health Equity Advocacy and Education at Cambridge Health Alliance. “But hospital systems are still really strained by covid and staffing issues.”

This pilot program is an excellent start and could benefit by including pharmacists, said Kristie Ebi, founding director of the at the University of Washington.

Ebi has studied heat early-warning systems for 25 years. She says one problem is that too many people don’t take heat warnings seriously. In a who experienced heat waves in four cities, only about half of residents took precautions to avoid harm to their health.

“We need more behavioral health research,” she said, “to really understand how to motivate people who don’t perceive themselves to be at risk, to take action.”

For Ebi and other researchers, the call to action is not just to protect individual health, but to address the root cause of rising temperatures: climate change.

“We’ll be dealing with increased exposure to heat for the rest of our lives,” said Dresser. “To address the factors that put people at risk during heat waves, we have to move away from fossil fuels so that climate change doesn’t get as bad as it could.”

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“I was so scared,” Marie said later, her hand clutched to her chest.

Marie, 63, was admitted to , north of Boston. The staff treated her chronic obstructive pulmonary disease, a lung condition. A doctor checked on Marie the next day, said her oxygen levels looked good, and told her she was ready for discharge.

We are not using Marie’s last name because she, like hospitalized patients, has a history of addiction to drugs or alcohol. Disclosing a diagnosis like that can make it hard to find housing, a job, and even medical care in hospitals, where patients with an addiction might be shunned.

But talking to the doctor that morning, Marie felt she had to reveal her other medical problem.

“‘I got to tell you something,’” Marie recalled saying. “‘I’m a heroin addict. And I’m, like, starting to be in heavy withdrawal. I can’t — literally — move. Please don’t make me go.’”

At many hospitals in Massachusetts and across the country, Marie would likely have been discharged anyway, still in the pain of withdrawal, perhaps with a list of local detox programs that might provide help.

Discharging a patient without specialized addiction care can mean losing a crucial opportunity to intervene and treat someone at the hospital. don’t have specialists who know how to treat addiction, and other clinicians might not know what to do.

Hospitals typically employ all sorts of providers who specialize in the heart, lungs, and kidneys. But for patients with an addiction or a condition related to drug or alcohol use, few hospitals have a clinician — whether that be a physician, nurse, therapist, or social worker — who specializes in addiction medicine.

That absence is striking at a time when overdose deaths in the U.S. have reached , and patients face an increased risk of fatal overdose in the days or weeks after being discharged from a hospital.

“They’re left on their own to figure it out, which unfortunately usually means resuming [drug] use because that’s the only way to feel better,” said Liz Tadie, a nurse practitioner .

In fall 2020, Tadie was hired to launch a new approach at Salem Hospital using $320,000 from a federal grant. Tadie put together what’s known as an “addiction consult service.” The team included Tadie, a patient case manager, and three recovery coaches, who drew on their experiences with addiction to advocate for patients and help them navigate treatment options.

After Marie asked her doctor to let her stay in the hospital, he called Tadie for a bedside consultation.

Tadie started by prescribing methadone, a medication to treat opioid addiction. Although many patients do well on that drug, it didn’t help Marie, so Tadie switched her to buprenorphine, with better results. After a few more days, Marie was discharged and continued taking buprenorphine.

Marie also continued seeing Tadie for outpatient treatment and turned to her for support and reassurance: “Like, that I wasn’t going to be left alone,” Marie said. “That I wasn’t going to have to call a dealer ever again, that I could delete the number. I want to get back to my life. I just feel grateful.”

Tadie helped spread the word among Salem’s clinical staff members about the expertise she offered and how it could help patients. Success stories like Marie’s helped make the case for addiction medicine — and helped unravel decades of misinformation, discrimination, and ignorance about patients with an addiction and their treatment options.

The small amount of training that doctors and nurses get is often unhelpful.

“A lot of the facts are outdated,” Tadie said. “And people are trained to use stigmatizing language, words like ‘addict’ and substance ‘abuse.’”

Tadie gently corrected doctors at Salem Hospital, who, for example, thought they weren’t allowed to start patients on methadone in the hospital.

“Sometimes I would recommend a dose and somebody would give pushback,” Tadie said. But “we got to know the hospital doctors, and they, over time, were like, ‘OK, we can trust you. We’ll follow your recommendations.’”

Other members of Tadie’s team have wrestled with finding their place in the hospital hierarchy.

David Cave, one of Salem’s recovery coaches, is often the first person to speak to patients who come to the emergency room in withdrawal. He tries to help the doctors and nurses understand what the patients are going through and to help the patients navigate their care. “I’m probably punching above my weight every time I try to talk to a clinician or doctor,” Cave said. “They don’t see letters after my name. It can be kind of tough.”

Naming addiction as a specialty, and hiring people with specific training, is shifting the culture of Salem Hospital, said social worker Jean Monahan-Doherty. “There was finally some recognition across the entire institution that this was a complex medical disease that needed the attention of a specialist,” Monahan-Doherty said. “People are dying. This is a terminal illness unless it’s treated.”

This approach to treating addiction is winning over some Salem Hospital employees — but not all.

“Sometimes you hear an attitude of, ‘Why are you putting all this effort into this patient? They’re not going to get better.’ Well, how do we know?” Monahan Doherty said. “If a patient comes in with diabetes, we don’t say, ‘OK, they’ve been taught once and it didn’t work, so we’re not going to offer them support again.’”

Despite lingering reservations among some Salem clinicians, the demand for addiction services is high. Many days, Tadie and her team have been overwhelmed with referrals.

Four other Massachusetts hospitals added addiction specialists in the past three years using federal funding from the . The project is paying for a wide range of strategies across several states to help determine the most effective ways to reduce drug overdose deaths. They include mobile treatment clinics; street outreach teams; distribution of naloxone, a medicine that can reverse an opioid overdose; rides to treatment sites; and multilingual public awareness campaigns.

It’s a new field, so finding staff members with the right certifications may be a challenge. Some hospital leaders say they’re worried about the costs of addiction treatment and fear they’ll lose money on the efforts. Some doctors report not wanting to initiate a medication treatment while patients are in the hospital because they don’t know where to refer patients after they’ve been discharged, whether that be to outpatient follow-up care or a residential program. To address follow-up care, Salem Hospital started what’s known as a “bridge clinic,” which offers outpatient care.

Dr. Honora Englander, a national leader in addiction specialty programs, said the federal government could support the creation of more addiction consult services by offering financial incentives — or penalties for hospitals that don’t embrace them.

At Salem Hospital, some staffers worry about the program’s future. Tadie is starting a new job at another hospital, and the federal grant ended June 30. But Salem Hospital leaders say they are committed to continuing the program and the service will continue.

This story is part of a partnership that includes ,  and KHN.

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .

Drilling down from national rates, the picture varies widely at the regional level, and from state to state. For example, Massachusetts and most states in the Northeast reached or exceeded 70% (for adults, age 18 and older) in June. Tennessee and most Southern states have vaccination rates between 50% and 60%, and administration rates are slowing down.

Local variations in demand for the vaccines and in-state strategies for marketing and distributing the shots help explain the range.

In Massachusetts, for example, residents overwhelmed phone lines and appointment websites as soon as vaccines became available. The state began opening mass vaccination sites in January to meet demand. At Gillette Stadium in Foxborough, the home field of the New England Patriots, Jumbotron screens flashed updates and speakers blasted instructions to people arriving for a shot. When demand peaked in March, as many as 8,000 residents a day snaked through lines to a waiting syringe. Registered nurse Francesca Trombino delivered jab after jab at Fenway Park and then at the Hynes Convention Center in Boston for five months.

“I still hold a lot of interactions very dear to my heart,” she said, reflecting on those months in late June. “I had so many people cry, just out of pure shock, just being able to feel free.”

Heading into the long Fourth of July weekend, more than 82% of Massachusetts adults had received at least one shot. That number doesn’t surprise many public health experts because residents generally have embraced vaccination recommendations in the past, and Massachusetts regularly registers some of the highest rates for pediatric and influenza inoculations in the country. In Tennessee, where only 52% of adults are at least partially vaccinated against covid, nurses sit waiting. In some of the state’s rural counties, only 30% of residents have been vaccinated.

“Our first couple weeks we had people booked, then after that we had people start no-showing,” said Kirstie Allen, who coordinates covid vaccinations at the federally subsidized clinic in Linden, Tennessee. “We had a waiting list, the people on the waiting list didn’t want to come. It’s gradually just gotten worse.”

Allen is down to offering the vaccine just one day a week, and she aims to sign up at least 10 patients to avoid wasting doses in the multi-use Moderna vial.

Allen has witnessed plenty of vague skepticism in her town of 1,200 people. And she can sympathize. Despite administering the shots, the mother and licensed practical nurse has not yet been vaccinated and said she’s waiting for more research results to be released, and to see how everyone does over time.

“I’m one of those people who are unsure at the moment about getting it,” she said, adding she wouldn’t get her kids vaccinated yet either.

This wait-and-see attitude is especially common among white, rural conservatives in the South, according to in recent months. After an initial surge of interest, demand for vaccinations waned, and states like Tennessee held mass vaccination events only in the most densely populated cities.

Having Reached the 70% Goal, Massachusetts Adopts Targeted Strategy

In Massachusetts, with fewer than 20% of adults still unvaccinated, the state is closing its high-volume vaccine clinics and focusing on specific demographic groups and communities with low vaccination rates.

“As these [big] sites come to their mission complete, we need to keep pushing harder into the neighborhoods,” said Rodrigo Martinez, “into those locations that really need it.”

Martinez is with CIC Health, a company that moved from managing mass vaccination sites to running small outdoor clinics at supermarkets where shoppers who got a shot . That hyperlocal approach is part of a growing effort in Massachusetts to bring vaccines to residents, especially those in low-income and minority communities where the virus spread quickly and vaccination rates remain low.

Massachusetts has targeted 20 such cities including Brockton, south of Boston. It’s a diverse city of essential workers, a group that has been hit hard during the pandemic. First-dose vaccination rates are especially low for Latinos, at 39%, and Blacks, 41% (for all ages, not just adults).

The hyperlocal approach was on display in Brockton on a Sunday in late June, when the city, with assistance from the state, hosted a mobile vaccine clinic at a popular park. A , retrofitted to hold vaccination stations, idled near tents offering free food, music, legal advice for immigrants and health insurance enrollment assistance.

This particular neighborhood in Brockton features residents who speak Portuguese, Spanish, English and Haitian Creole.

“Bienvenue! Welcome!” shouted Isabel Lopez, a vaccine ambassador, as she moved from one cluster of families to another, urging them to go grab a free hamburger, hot dog — and a vaccine.

“We are here, bringing the communities together, to make this a fun day and also a creative way to get people vaccinated,” Lopez said.

Near the soccer field, Lopez scored a big win. She persuaded five hesitant members of one household to go to the bus and at least talk with a nurse there. A half-hour later, all five had received their first shots. Lenin Gomez said afterward that he had had doubts about the vaccine but was persuaded when the nurse stressed the need to protect the children living in Gomez’s home.

“If I’m not fully protected, who will take care of the little ones?” Gomez said. “That’s what opened my mind to getting vaccinated.”

When Gomez gets his second dose in a few weeks, he can enter himself in a statewide lottery that will give away five $1 million prizes for anyone who’s vaccinated. Massachusetts Gov. Charlie Baker said he hopes these jackpots will entice hesitant residents to roll up their sleeves.

Hefty Financial Incentives Are Less Common in the South

In the states that need most to boost vaccination rates, there’s little interest in creative financial incentives. Tennessee has . In Alabama, the NAACP funded a for $1,000 prizes aimed at millennials and Gen Zers.

Overall, the daily vaccination rate across the South has slowed, worrying health officials who are watching the explosive growth and spread of the delta variant in several parts of the U.S. But some Southern residents continue to come around to the idea. In Lobelville, Tennessee, 57-year-old Laurel Grant was initially hesitant to get the shot because of possible side effects.

“But everybody I know has done real good, just maybe a little fever or a little tiredness,” she said.

So Grant got her own shot in June, at a local pharmacy. It helped that the Pilot Flying J truck stop where she works to employees who got fully vaccinated.

“There’s a few down there at work who are like, ‘I’m not going to get it,'” Grant said, “I’m like, ‘Yes, you are. You gotta go, like it or not.'”

Converts like Grant are being seen as the best kind of evangelist for this next phase of vaccinating latecomers. Tennessee’s health department has started to release online. But the marketing efforts are beginning to annoy some Republican state lawmakers convinced the state is trying too hard. They’re .

A recent hearing in the Tennessee state legislature included threats of disbanding Tennessee’s health department. State Rep. Iris Rudder, along with other GOP lawmakers, brandished printouts of social media ads produced by state health officials. They featured smiling kids with adhesive bandages on their shoulders.

“It’s not your business to target children. It’s your business to inform the parent that their child is eligible for the vaccination,” she told health department officials at the hearing in June. “So I would encourage you, before our next meeting, to get things like this off your website.”

This criticism was mostly directed at the state’s health commissioner, Dr. , who responded at the hearing by saying the state is not “whispering to kids” or trying to get them vaccinated behind the backs of their parents. She said she’s not going to back off when it comes to vaccination outreach.

Piercey also said she doesn’t think the risk level in Tennessee is as dire as the low vaccination rates suggest. Tennessee had a of covid cases during the winter. That means at least 850,000 people — based on positive test results — are walking around with some level of natural immunity. Piercey said those residents are partially compensating for low vaccination rates.

“Yes, I want everybody who wants a vaccine to get it,” she said. “But what I really want at the end of the day is for this pandemic to go away. I want to minimize cases and eliminate hospitalizations and deaths, and we’re pretty close to getting there.”

The outlook is less rosy in neighboring Arkansas. The state escaped the worst of the winter outbreaks. Now it is trying to stop flare-ups of illness caused by the more contagious delta variant. Gov. Asa Hutchinson told ” that if nothing else will inspire Southerners to get vaccinated, “reality will.”

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Melinda, like a during the covid-19 pandemic, had become increasingly anxious and depressed as she spent more time away from in-person contact at school, church and her singing lessons.

KHN and NPR have agreed to use only the first names of this teenager and her mother, Pam, to avoid having this story trail the family online. Right now in Massachusetts and in and , demand for mental health care overwhelms supply, creating bottlenecks like Melinda’s 17-day saga.

Emergency rooms are not typically places you check in for the night. If you break an arm, it gets set, and you leave. If you have a heart attack, you won’t wait long for a hospital bed. But sometimes if your brain is not well, and you end up in an ER, there’s a good chance you will get stuck there. Parents and advocates for kids’ mental health say that the ER can’t provide appropriate care and that the warehousing of kids in crisis can become an emergency itself.

What’s known as of psychiatric patients has risen between 200% and 400% monthly in Massachusetts during the pandemic. The CDC says emergency room visits after suicide attempts among teen girls as compared with 2019. There are no current nationwide mental health boarding numbers.

“This is really unlike anything we’ve ever seen before, and it doesn’t show any signs of abating,” said , executive director of Parent/Professional Advocacy League, which pushes for more mental health care for children.

Melinda spent her first 10 days in a hospital lecture hall with a dozen other children, on gurneys, separated by curtains because the emergency room had run out of space. At one point, Melinda, who was overwhelmed, tried to escape, was restrained, injected with drugs to calm her and moved to a small, windowless room.

Day 12: Cameras Track Her Movements

I met Melinda in early April, on her 12th day in the ER. Doctors were keeping her there because they were concerned she would harm herself if she left. Many parents report spending weeks with their children in hospital hallways or overflow rooms, in various states of distress, because hospital psychiatric units are full. While demand is up, supply is down. Covid precautions turned double rooms into singles or psych units into covid units. While those precautions are beginning to ease, demand for beds is not.

Inside her small room, Melinda was disturbed by cameras that tracked her movement, and security guards in the hallways who were there, in part, for her safety.

“It’s kinda like prison,” she said. “It feels like I’m desperate for help.”

“Desperate” is a word both Melinda and Pam use often to describe the prolonged wait for care in a place that feels alien.

“We occasionally hear screaming, yelling, monitors beeping,” said Pam. “Even as the parent — it’s very scary.”

But this experience is not new. This was Melinda’s fourth trip to a hospital emergency room since late November. Pam said Melinda spiraled downward after a falling out with a close family member last summer. She has therapists, but some of them changed during the pandemic, the visits were virtual, and she hasn’t made good connections between crises.

“Each time, it’s the same routine,” Pam said. Melinda is rushed to an ER, where she waits. She’s admitted to a psych hospital for a week to 10 days and goes home. “It’s not enough time.”

Pam said each facility has suggested a different diagnosis and adjusted Melinda’s medication.

“We’ve never really gotten a good, true diagnosis as to what’s going on with her,” Pam said. “She’s out of control; she feels out of control in her own skin.”

Melinda waited six months for a neuropsychiatric exam to help clarify what she needs. She finally had the exam in May, after being discharged from the psychiatric hospital, but still doesn’t have the results. Some psychiatrists say observing a patient’s behavior is often a better way to reach a diagnosis.

Lambert, the mental health advocate, said there are delays for every type of psychiatric care — both residential and outpatient.

“We’ve heard of waits as long as five weeks or more for outpatient therapy,” Lambert said. “If your child is saying they don’t want to live or don’t want to ever get out of bed again, you don’t want to wait five weeks.”

Day 13: ‘The Longer She’s Here, the More She’s Going to Decline’

As her stay dragged on, Melinda bounced from manic highs to deep emotional lows. The emergency room is a holding area; it isn’t set up to offer treatment or psychiatric therapy.

On this day Melinda was agitated.

“I just really want to get out of here,” she said in an audio diary she was keeping at the time for this story. “I feel kind of helpless. I miss my pets and my bed and real food.” She’d had a panic attack the night before and had to be sedated. Her mom, Pam, wasn’t there.

“The longer she’s here, the more she’s going to decline,” Pam recorded in her own audio diary. “She has self-harmed three times since she’s been here.”

The hospital and its parent network, Beth Israel Lahey Health, declined requests to speak about Melinda’s care. But Dr. Nalan Ward, the network’s chief medical officer for behavioral health services, hosts a daily call to discuss the best place for inpatient psychiatric treatment for each patient. Some may have unique medical or insurance constraints, she said. Many insurers require prior approval before they’ll agree to pay for a placement, and that, too, can add delays.

“It takes a case-by-case approach,” said Ward. “It’s really hands-on.”

Day 14: Increasingly Isolated From School and Friends

For Melinda, the issue keeping her from moving out of the ER and into an effective treatment program could have been her behavior. Pam was told her daughter may be harder to place than children who don’t act out. Hospitals equipped to provide inpatient mental health care say they look for patients who will be a good fit for their programs and participants. Melinda’s chart included the attempted escape as well as some fights while she was housed in the lecture hall.

“She’s having behaviors because she has a mental illness, which they’re supposed to help her with,” Pam said, “but yet they’re saying no to her because she’s having behaviors.”

Secluding Melinda in the ER didn’t help, Pam said. “She’s, at times, unrecognizable to me. She just is so sure that she’s never going to get better.”

Melinda described feeling increasingly isolated. She lost touch with friends and most family members. She’d stopped doing schoolwork weeks earlier. The noise and commotion of a 24/7 ER was getting to Melinda.

“I’m not sleeping well,” she noted in her diary. “It’s tough here. I keep waking up in the middle of the night.”

Day 15: Mom Retreats to Her Car to Cry

Boarding is difficult for parents as well. Pam works two jobs, but she visited Melinda every day, bringing a change of clothes, a new book or something special to eat.

“Some days I sit and cry before I get out of the car, just to get it out of my system, so I don’t cry in front of her,” Pam said in her diary entry that day.

Some hospitals say they can’t afford to care for patients with acute mental health problems because insurance reimbursements don’t cover costs. Massachusetts is spending $40 million this year on financial incentives to create more inpatient psychiatric care. But emergency rooms are still flooded with psychiatric patients who are in limbo, boarding there.

Day 16: ‘I Wish Someone Would Just Understand Me’

“I never thought we’d be here this long,” said Pam.

At the nurses’ station, Pam was told it could be two more weeks before there would be an opening at an appropriate hospital.

In Massachusetts, Gov. Charlie Baker’s administration says it has a that will keep children out of ERs and reduce the need for inpatient care by providing more preventive and community-based services. Parents and providers say they are hopeful but question whether there are enough counselors and psychiatrists to staff proposed community clinics, therapy programs and more psychiatric hospital beds.

Meanwhile, in the ER, Melinda was growing listless.

“Life is really hard because things that should be easy for everyone are just hard for me,” she said. “When I ask for help, sometimes I picture going to the hospital. Other times I wish someone would just understand me.”

Then, in the late evening on Day 16, the family got word that Melinda’s wait would soon end.

Day 17: Limbo Ends and Real Treatment Begins

On Day 17, Melinda was taken by ambulance to a Boston-area hospital that had added child psychiatric beds during the pandemic. She was lucky to get a spot. The day she arrived, there were 50 to 60 children on the waiting list.

“That’s dramatically higher” than before the pandemic, said Dr. Linsey Koruthu, one of Melinda’s doctors and a pediatric psychiatrist at Cambridge Health Alliance. “About double what we would have seen in 2019.”

Doctors there adjusted Melinda’s medications. She met with a psychiatrist and social worker daily and had group therapy and time for schoolwork, yoga and pet therapy. Hospital staff members met with Melinda and her family. She stayed two weeks, a bit longer than the average stay.

Doctors recommended that Melinda move from inpatient care to a community-based residential treatment program — a bridge between being in the hospital and returning home. But those programs were full and had weeks-long delays. So, Melinda went straight home.

She now has three therapists helping her make the transition and use what she’s learned. And as covid restrictions have begun to ease, some sessions are in person — which Koruthu said should be more effective for Melinda.

Pam said the transition has been rough. Police came to the house once and suggested Melinda go to an ER, but she was able to calm down before it came to that. Melinda has developed an eating disorder.

The first available appointment with a specialist is in August. But, by mid-June, Melinda was able to graduate from middle school, after finishing a backlog of schoolwork.

“If you had asked me two months ago, I would have said I don’t think she’ll make it,” Pam said. “We’re getting there.”

If you or someone you know are in mental health crisis or may be considering suicide, contact the at 1-800-273-8255 (en Español: 1-888-628-9454; for the deaf and hard of hearing: Dial 711 then 1-800-273-8255) or the by texting HOME to 741741.

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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.”

I just feel like myself, and that’s it. I don’t feel that different from anybody else.

Hallel

With excitement, Shira showed Hallel a  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  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.

Sometimes Hallel’s parents intervene. Hallel can use the bathroom of their choice in . But .

“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  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.”

I’m personally very hopeful that Hallel will live in a world where they can be who they want to be.

Ari

Ari and Shira are getting some help for Hallel through a  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 ,  and KHN.

This article first appeared on ºÚÁϳԹÏÍø News and is republished here under a .