Though such cases may not always amount to , which can leave people bedridden or unable to perform daily functions, it is common to take weeks to fully recover.

“There could be more to help people understand that it’s not always a quick bounce back right away after the initial infection,” said Dr. Ben Abramoff, director of the at Penn Medicine in Philadelphia. “This is still a very significant viral infection, and sometimes it’s just a more gradual recovery process than people’s previous viral illnesses.“

Recent federal health guidelines — which recommend for those who test positive and are symptom-free — may inadvertently suggest most recoveries are, if not just five days long, pretty quick.

That’s the message I got, at least.

I’ve reported on the coronavirus pandemic since it started, and I thought I knew what an infection would be like for a young, otherwise healthy person like me. I knew even mild cases could develop into long covid. I thought they were relatively rare.

Like many Americans, I found myself slowed by a recovery that took more than a month — far longer than I had expected.

I got covid over Christmas. I was vaccinated and boosted, and my symptoms were mild: sore throat, sinus pressure and headache, extreme fatigue. I felt better after eight days, and I tested negative two days in a row on a rapid antigen test.

Soon after ending isolation, I had dinner with a friend. One glass of wine left me feeling like I’d had a whole bottle. I was bone-achingly exhausted but couldn’t sleep.

The insomnia continued for weeks. Activities that once energized me — walking in the cold, riding an exercise bike, taking a sauna — instead left me intensely tired.

The waves of fatigue, which I started calling “crashes,” felt like coming down with an illness in real time: weakened muscles, aches, the feeling that all you can do is lie down. The crashes would last a couple of days, and the cycle would repeat when I accidentally pushed myself beyond my new, unfamiliar limit.

My colleague Kenny Cooper is also young, healthy, vaccinated, and boosted. He was sick for almost two weeks before testing negative. His symptoms lingered a few more weeks. A persistent cough kept him from leaving the house.

“I just felt like there were weights on my chest. I couldn’t sleep properly. When I woke up, if I moved around too much, I would start coughing immediately,” he said.

Abramoff has seen about 1,100 patients since Penn’s post-covid clinic opened in June 2020. There is no official threshold at which someone officially becomes a long-covid patient, he said.

The clinic takes a comprehensive approach to patients who have had symptoms for months, evaluating and referring them to specialists, like pulmonologists, or social workers who can assist with medical leave and disability benefits.

Those coming to the clinic with symptoms lasting six to eight weeks, Abramoff said, are generally sent home to rest. They will likely get better on their own. He advises patients with lingering symptoms to adopt a “watchful waiting” approach: Keep in contact with a primary care doctor, and take things slowly while recovering.

“You have got to build based on your tolerance,” he said. “People were very sick, even if they weren’t in the hospital.”

´¡Ìý, called , designates any case with symptoms lasting more than 30 days as long covid.

Dr. Stuart Katz, a New York University cardiologist who is the study’s principal investigator, said he estimates 25% to 30% of the nearly 60,000 covid patients in the study will fit the long-covid criteria.

The 30-day mark is an arbitrary cutoff, Katz said. “There’s this whole spectrum of changing symptoms over time.”

A last year tracked more than 4,000 covid patients from initial infection until symptoms subsided. Roughly 13% reported symptoms lasting more than 28 days. That dropped to 4.5% after eight weeks and 2.3% after 12 weeks, indicating most people with symptoms lasting more than a month will recover within another month or two.

That leaves potentially millions of Americans suffering from a variety of covid symptoms — some debilitating — and a lingering burden on the health care system and workforce.

Recent estimated that lasting covid symptoms could be responsible for up to 15% of the unfilled jobs in the U.S. labor market.

It took me about six weeks to start feeling better. My crashes got better, slowly, as a result of diligent rest and almost nothing else.

My colleague, Cooper, has also improved. His coughing fits have subsided, but he’s still dealing with brain fog.

The way most studies to date describe long covid would leave us out.

But what I’ve come to think of as my “medium covid” affected my life. I couldn’t socialize much, drink, or stay up past 9:30 p.m. It took me 10 weeks to go for my first run — I’d been too afraid to try, fearing another crash that would set me back again.

Failing to treat covid as a serious condition could prolong recovery. Patients should monitor and care for themselves attentively, no matter how mild the infection may seem, Abramoff said.

“It’s something that could kill somebody who’s in their 70s,” he said. “It’s not nothing.”

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High school junior Nicolas Montero stays busy. He runs track, works night and weekend shifts at Burger King, and keeps on top of his schoolwork at Neshaminy High School in Bucks County, Pennsylvania.

But Nicolas’ packed schedule is also strategic: It’s a way to stay out of the house.

Nicolas and his parents are separated by a widening political and cultural rift: His parents are a part of a small but vocal minority who oppose covid-19 vaccinations and have refused to let him get the shots.

“The thing about these beliefs is that they alternate by the day,” said Nicolas, who is 16. “It’s not one solid thing that they’re going with, so it’s just really baseless. It’s like one thing they see on Facebook, and then they completely believe it.”

The impasse eventually led to an act of quiet defiance: Nicolas traveled to Philadelphia, where a little-known regulation permits children 11 and older to be vaccinated without parental consent.

for . In , teens 15 and up can consent to their own medical care, including inoculations. Rhode Island and allow 16-year-olds to get COVID-19 vaccinations on their own. In , you need to be only 12 to get vaccines related to sexually transmitted infections (STIs).

That’s the case as well in , for those 12 or older who would like to get vaccines for STIs. But now California state lawmakers are considering a bill that would allow those minors to consent to all Food and Drug Administration-approved vaccines, including the covid vaccines.

In Alabama, the law tightened during the pandemic. Though the age of consent for all other medical care is 14, says Alabama youths under 19 need parental consent for covid vaccines.  

A November 2021 found that 30% of parents with 12- to 17-year-olds said they will definitely not get their children vaccinated. In light of this, two National Institutes of Health scholars in The New England Journal of Medicine advocating for states to expand their statutes to include covid vaccines as a medical treatment to which minors can consent.

A House Divided

Nicolas said he thinks most of his parents’ beliefs about the vaccine come from social media.

“I try to explain to them that the vaccines are safe. They’re effective,” Nicolas said. “I try to explain that we know people that have been vaccinated, even our own family members who’ve been vaccinated for months and experienced no side effects. But nothing seems to get through to them.”

Nicolas’ parents did not respond to multiple attempts by WHYY News to speak to them for this article.

Though he found a way to change his own situation, Nicolas worried about teens who can’t travel to a place where the laws are different. “I know that this is something that teenagers all across the country are experiencing right now,” Nicolas said.

So he in his high school paper, The Playwickian, advocating for the age of consent for vaccines in Pennsylvania to be lowered to 14.

Last summer, after school let out, he didn’t need to be in the suburbs to go to class, so he asked his aunts if he could visit them in Philadelphia.

“He gets to roam the city, get the city life. He loves that,” said Nicolas’ aunt Brittany Kissling, who lives in Philly’s Port Richmond neighborhood. “The kid did not want to leave.”

A week turned into the entire summer.

While Nicolas was staying in Philadelphia, bouncing between his two aunts’ houses, his friends were getting their first covid shots. He was worried he might get sick. Worse, he was concerned he might transmit a coronavirus infection to his elderly grandmother.

“My abuela, she’s completely vaccinated, boosted and everything,” said Nicolas. But he said he was still worried he could transmit a breakthrough infection.

So he started doing some research. And he found the handful of states that allow teens to get vaccines without parental consent.

To his surprise, Nicolas discovered that to change the law in Pennsylvania had been introduced in the state House of Representatives. If the measure were to become law, it would mean that anyone 14 and older could give informed consent to be vaccinated for any vaccine recommended by the U.S. Advisory Committee on Immunization Practices.

As his research deepened, he learned that not only was it possible for minors to get vaccinated without parental consent in other states, it was legal in Philadelphia.

In 2007, the city’s Board of Health that allows any minor who’s at least 11 to get vaccinated without a parent, provided the young person can give informed consent.

Philadelphia Health Commissioner Cheryl Bettigole said the regulation is designed to remove any additional barriers to vaccination.

“It can be very difficult, especially for lower-income parents, to get time off work to go to those appointments,” Bettigole said. “These are low-risk interventions. It just makes it easier for parents and families to be able to make sure their kids are vaccinated.”

The regulation took effect the year after the FDA approved a three-shot regimen of the human papillomavirus (HPV) vaccine for young people, .

It is common for states and municipalities to create specific legislation for minors with the aim of increasing access to vaccines that prevent sexually transmitted infections, said , an author and adjunct professor of vaccine law at Florida International University College of Law.

“The rationale behind this was that you may have children who are being abused and don’t want their parents necessarily to be informed of the fact they’re seeking medical interventions for that, or children who may be sexually active and are afraid that their parents will react very negatively to that if they seek some kind of medical treatment,” Abramson said.

In turn, said Abramson, those policies have laid the groundwork for children to get vaccinated in the event of a disagreement like the one between Nicolas and his parents.

Practicing Self-Care

Nicolas was thrilled to learn of Philadelphia’s regulation. One summer afternoon while his aunt was at work, Nicolas found a Philadelphia pop-up clinic offering vaccines. He was anxious on his bus ride there — not about needles or side effects, but that his parents would somehow catch him and prevent him from getting his second shot.

He knew his aunts would support his being vaccinated — both of them had been, and Kissling manages a pediatrics office. But he was worried that if his aunts knew, word would get back to his parents. So, he didn’t tell them ahead of time.

He returned to Bucks County for the start of the school year and arranged for a weekend visit in early September to see his aunts and grandmother again. He planned the trip just in time for his second dose.

“I did feel really liberated when I got my second shot,” Nicolas said. “I felt like I was protected.”

After that second shot, Nicolas told his aunts he had gotten vaccinated; they were amazed.

“He was so proud,” recalled Kissling. “He had his card, and we were like, ‘Wait, when did this happen? How did this happen?’”

Just before Thanksgiving, Nicolas’ parents found out. They reacted the way Nicolas and his aunts worried they would: Kissling said Nicolas’ mother accused her sisters of influencing him and of being neglectful enough to allow him to get vaccinated. The tension has grown to the point where Nicolas says he can’t even speak to his parents.

Kissling said her family rarely discussed politics until recently. Now, she said, it’s hard for the whole family to spend time together. She has left in the middle of dinners to drive home to Philadelphia because the discussion got so heated. She’s not expecting a resolution anytime soon — her family is one that’s more likely to sweep conflict under the rug than resolve it, she said.

“Now, there’s a divide,” said Kissling. “It’s sad because, at the end of the day, family should be family.”

To cope with the tension at home, Nicolas has doubled down on his extracurriculars: He’s learning to pole-vault for the track team. He joined the school paper, on top of taking part in environmental and language clubs.

Each evening after school, he lays claim to one of the private rooms at the public library, where he spreads out his books across a small desk and diligently does his homework. Recently, he was working on a paper about the history of U.S. involvement in Puerto Rico, where his grandmother is from. He was thumbing through a thick book on the Puerto Rican independence movement, marked with dozens of sticky notes every few pages.

“When I started reading this book, like almost every single page, my mouth is just wide open,” Nicolas said. “Like, I couldn’t believe that these things happened to my people.”

He hopes to visit the island one day, and his grandmother is teaching him to cook Puerto Rican dishes in the meantime. They can now spend time together without him worrying as much that he might infect her.

Nicolas has ambitions to go to college in Washington, D.C. From there, he said, he wants to go to law school.

Kissling said she’s inspired by her nephew’s independence. But she knows he’s still a kid who needs support and guidance. That’s why she tries to stay in touch with him every day: texting, joking, asking him what he wanted for Christmas. (She expected AirPods or Amazon gift cards. Instead, he sent her a wish list of more history books about Puerto Rico.)

“He plays it off with a smile, and he laughs about it, and he said, ‘Aunt Britt, it’s just giving me more motivation to do what I need to do and get where I want to get,’” Kissling said of her nephew’s fraught relationship with his parents. “But, deep down, I know it has to affect him. I’m 34. It would affect me.”

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The organization’s leader, Andrei Doroshin, had bigger ambitions. Even before the first coronavirus vaccine was authorized, the 22-year-old graduate student at Drexel University planned to get involved, although he has no background in health care.

On the evening of Oct. 7, Doroshin gathered 15 of the nonprofit’s staff members and volunteers for a meeting on a Philadelphia rooftop to show them a fancy PowerPoint. More people joined via livestream to unveil his plan to vaccinate the city of Philadelphia.

In slide after slide, he laid out his vision with colorful graphics and maps, covering all aspects of a vaccination system, from scheduling to staffing to safety protocols.

The marketing plan hinged on inoculating local celebrities like rapper Meek Mill, a Philadelphia native, to attract his fan base.

“This is a wholly Elon Musk, shooting-for-the-heavens type of thing,” Doroshin said. “We’re gonna have a preemptive strike on vaccines and basically beat everybody in Philadelphia to it.”

Doroshin described scaling up until they were managing five mass vaccination sites and 20 smaller sites scattered throughout the city. He claimed they could vaccinate between 500,000 and 1.5 million people. And they would make a lot of money doing it.

“This is the juicy slide,” said Doroshin, clicking over to the financing plan. “How are we gonna get paid?” He explained that the vaccine doses were free, provided by the federal government. But Philly Fighting Covid could bill insurance companies $24 a dose for administering it.

“I just told you how many vaccines we want to do — you can do the math in your head,” he said.

A month later, Doroshin made a similar presentation, complete with colorful maps and a $2.7 million projected budget, to the Philadelphia City Council. He said his team at Philly Fighting Covid had begun submitting plans for building out five high-capacity sites that could each take up to 10,000 patients a day.

Philly Fighting Covid’s promise of efficiently vaccinating the population was an alluring one as city leaders were desperate to pull out of the pandemic. Doroshin told NBC’s “Today” show that his company didn’t think like a traditional medical institution. “We’re engineers, we’re scientists, computer scientists, we’re cybersecurity nerds. We think a little differently than people in health care do.”

“We took the entire model and just threw it out the window,” Doroshin added. “We said to hell with all of that. We’re going to completely build on a new model that is based on a factory.”

By Jan. 9, Doroshin had a deal with the Philadelphia Department of Public Health and Mayor Jim Kenney’s administration. The city never signed a formal contract with Philly Fighting Covid or gave the organization any money, but it did provide its unofficial sanction and publicity.

Most important, the city turned over part of its vaccine allotment to the group and helped it find recipients by sharing lists of residents who were newly eligible for the vaccine, based on the city’s own prioritization scheme. The city relied on ’s registration as a vaccine provider with the Centers for Disease Control and Prevention.

On Jan. 8, Doroshin and Kenney stood side by side at a press conference to kick off the first mass vaccination clinic at the . It was targeted at health care workers not affiliated with major hospitals, such as home health aides or doctors, nurses or therapists in private practice.

“What you see here is the problem that we’ve been solving for six months,” Doroshin told reporters. “This is the problem of vaccinating an entire population of people on a scale that has never been seen before in the history of our species.”

Kenney was also hopeful that the arrangement would help diversify the racial breakdown of vaccine recipients. At that point, only 12% of vaccinated Philadelphians were Black — in a city where 44% of residents are Black.

“Equitable distribution of this vaccine is extremely important to our entire administration,” said Kenney at the Jan. 8 kickoff event.

But in an early sign of trouble, Philly Fighting Covid failed to verify its progress on the equity goal. After that first vaccine event, at which 2,500 doses were administered, City Council President Darrell Clarke requested the demographic breakdown of the recipients.

The health department told him that Philly Fighting Covid had somehow lost all the racial and ethnic data for the patients. The group was blaming “a glitch” in the Amazon cloud. Still, the city continued to turn over thousands of vaccine doses to Philly Fighting Covid.

As the startup continued to hold clinics, WHYY began investigating the organization and its founder.

Reporters uncovered other serious problems, and it soon became clear that the group’s logistical strengths and self-promotional flair, which had once made the startup seem so compelling, weren’t working. The investigation revealed that in December, just before Philly Fighting Covid began its vaccination work, it reorganized and called Vax Populi.

Philly Fighting Covid had spent months organizing city-funded testing events — at which residents reported good experiences. But in January, it abruptly shuttered those operations, leaving partner organizations in the lurch. The group posted this decision on social media, just a few days after the convention center kickoff, at which Doroshin had promised to open two new testing sites and to start offering free rapid testing.

Several groups that had been partnering with Philly Fighting Covid on testing events claim they received , jeopardizing plans for testing in communities of color.

“They completely ghosted us,” said Cean James, pastor of Salt & Light church in Southwest Philadelphia, which had been planning a series of pop-up testing events with Philly Fighting Covid.

Michael Brown had been working with the group to organize a testing event on Martin Luther King Jr. Day. He said Doroshin told his group that testing wasn’t important anymore.

“The statement he made was very clear: ‘I don’t believe that testing is relevant anymore. People don’t follow the instructions, people don’t do what they’re supposed to do, and all it does is … cause panic,'” Brown said later.

There were signs that Doroshin wasn’t that concerned about standard clinical protocols. Employees with more clinical experience than he had said he brushed off technical questions as bothersome and approached the vaccination effort as if he were a tech mogul focused on disrupting norms.

“Stop using best practices,” Doroshin said during a recent with HealthDay. “I think the old best practices in health care, in terms of intramuscular injections, were written for a hospital visit that would take 30 minutes, that you needed to do a bill for as a provider visit. Those best practices can mostly go out the window.”

The city soon began to back away from the group. At the initial launch, the city promoted Philly Fighting Covid’s pre-registration website and encouraged everyone to sign up. Just a week later, officials and claimed the city had nothing to do with the website. The conflicting messages caused confusion among the 60,000 Philadelphians who had signed up thinking it was an official city site. Many were left worried about what would happen to their personal information. The city then launched its own pre-registration site.

The process Philly Fighting Covid used to schedule appointments was also flawed. Anyone who received a hyperlink could sign up for a time slot, which prompted many who received it to assume they were automatically eligible, even though at that time the clinic was technically only for health care workers and the elderly.

Some who received the link in error went through with their appointments. Others backed out when they learned it wasn’t their turn. Still more had their doses canceled by Philly Fighting Covid upon arrival.

When Jillian Horn came to get a shot, she said she saw seniors waiting in line get turned away because of booking errors.

“There was literally 85-year-olds, 95-year-old people standing there, with printed appointment confirmations saying, ‘I don’t understand why I can’t get vaccinated,’ ” Horn recalled.

On Jan. 23, volunteer nurse Katrina Lipinsky was helping at one of Philly Fighting Covid’s vaccination events. She said that about half an hour before the event’s scheduled end, staffers started telling volunteers and other workers to call anyone they knew to come in for a shot because there were going to be extras.

Then she saw Doroshin grab a handful of vaccines and stuff them in his bag, along with the corresponding CDC vaccination record cards.

“The idea of somebody who’s not a licensed health care professional vaccinating their own friend, with or without observation, period, that certainly was not the right thing to do,” Lipinsky told WHYY.

Doroshin initially denied Lipinsky’s account but eventually admitted he took doses home during a Jan. 28 interview on NBC’s “Today” show. The following day at a press conference, he said he had vaccinated his girlfriend, but no one else. He did not explain how Philly Fighting Covid ended up with extra doses after it turned away people, including seniors, who were in line waiting for the vaccine that same day.

The city cut ties with Philly Fighting Covid on Jan. 25, citing the company’s abandonment of its testing work and the company’s new privacy policy, which would have allowed it to sell patient data.

Health commissioner Dr. Tom Farley has been asked to explain what happened. Doroshin approached with a vaccine plan, he said, that met the city’s health standards.

“I hope people can understand why on the surface this looked like a good thing,” Farley said. “In retrospect, we should have been more careful with this organization.”

The city had other options for a mass vaccination partner. Philadelphia is home to four major health systems, including the University of Pennsylvania medical system, which said it was prepared to ramp up community vaccination efforts as far back as November, well before the city started working with .

Kenney Friday, and several state lawmakers called for Farley’s resignation.

In a press conference at his apartment building Friday, Doroshin the city’s decision to dissolve the partnership “dirty power politics” and alleged it was part of a political conspiracy. He said that if given the chance, he wouldn’t have done anything differently.

[News update: On Monday, Philadelphia said the city is restarting its to distribute the covid vaccine. That news follows an announcement that the Philadelphia inspector general is investigating the health department, and comes on the heels of deputy health commissioner Dr. Caroline Johnson’s resignation. A health department spokesperson said Johnson shared information with Philly Fighting Covid and another group, and she did not make that information available to all potential vaccine-distribution applicants.]

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And then, at the beginning of April, she started seeing media indicating that Black people were contracting the coronavirus and dying from COVID-19 at greater rates than other demographic groups.

“It just hit me like, what is going on?” said Stanford.

At the same time, she started hearing from Black friends who couldn’t get tested because they didn’t have a doctor’s referral or didn’t meet the testing criteria. In April, there were shortages of coronavirus tests in numerous locations across the country, but Stanford decided to call around to the hospitals where she works to learn more about why people were being turned away.

One explanation she heard was that a doctor had to sign on to be the “physician of record” for anyone seeking a test. In a siloed health system, it could be complicated to sort out the logistics of who would communicate test results to patients. And, in an effort to protect health care workers from being exposed to the virus, some test sites wouldn’t let people without cars simply walk up to the test site.

Stanford knew African Americans were than white Americans, and . She just couldn’t square all that with the disproportionate infection rates for Black people she was seeing on the news.

“All these reasons in my mind were barriers and excuses,” she said. “And, in essence, I decided in that moment we were going to test the city of Philadelphia.”

Black Philadelphians contract the coronavirus at of their white counterparts. They also are more likely to have severe cases of the virus: African Americans make up 44% of Philadelphians but 55% of those hospitalized for COVID-19.

Black Philadelphians are more likely to work jobs that can’t be performed at home, putting them at a greater risk of exposure. In the city’s jails, sanitation and transportation departments, workers are , and as the pandemic progressed they .

The increased severity of illness among African Americans may also be due in part to underlying health conditions more prevalent among Black people, but Stanford maintains that unequal access to health care is the greatest driver of the disparity.

“When an elderly funeral home director in West Philly tries to get tested and you turn him away because he doesn’t have a prescription, that has nothing to do with his hypertension, that has everything to do with your implicit bias,” she said, referring to an incident she encountered.

Before April was over, Stanford sprang into action. Her mom rented a minivan to serve as a mobile clinic, while Stanford started recruiting volunteers among the doctors, nurses and medical students in her network. She got testing kits from the diagnostic and testing company LabCorp, where she had an account through her private practice. Fueled by Stanford’s personal savings and donations collected through a GoFundMe campaign, the minivan and open tents on busy street corners in Philadelphia.

It wasn’t long before she was facing her own logistical barriers. LabCorp asked her how she wanted to handle uninsured patients whose tests it processed.

“I said, for every person that does not have insurance, you’re gonna bill me, and I’m gonna figure out how to pay for it later,” said Stanford. “But I can’t have someone die for a test that costs $200.”

Philadelphians live-streamed themselves on social media while they got tested, and word spread. By May, it wasn’t unusual for the to test more than 350 people a day. Stanford brought the group under the umbrella of a she already operated that offers tutoring and mentorship to youth in under-resourced schools.

Tavier Thomas found out about the group on Facebook in April. He works at a T-Mobile store, and his co-worker had tested positive. Not long after, he started feeling a bit short of breath.

“I probably touch 100 phones a day,” said Thomas, 23. “So I wanted to get tested, and I wanted to make sure the people testing me were Black.”

Many Black Americans seek out Black providers because they’ve experienced cultural indifference or mistreatment in the health system. Thomas’ preference is rooted in history, he said, pointing to times when white doctors and medical researchers have exploited Black patients. In the 19th century American South, for example, white surgeon J. Marion Sims performed without anesthesia on enslaved Black women. Perhaps the most notorious example began in the 1930s, when the United States government enrolled Black men with syphilis in a study at Tuskegee Institute, to see what would happen when the disease went untreated for years. The patients did not consent to the terms of the study and were not offered treatment, even when an effective one became widely available.

“They just watched them die of the disease,” said Thomas, of the Tuskegee experiments.

“So, to be truthful, when, like, new diseases drop? I’m a little weird about the mainstream testing me, or sticking anything in me.”

In April, Thomas tested positive for the coronavirus but recovered quickly. He returned recently to be tested again by Stanford’s group, even though the testing site that day was in a church parking lot in Darby, Pennsylvania, a solid 30-minute drive from where he lives.

Thomas said the second test was just for safety, because he lives with his grandfather and doesn’t want to risk infecting him. He also brought along his brother, McKenzie Johnson. Johnson lives in neighboring Delaware but said it was hard to get tested there without an appointment, and without health insurance. It was his first time being swabbed.

“It’s not as bad as I thought it was gonna be,” he joked afterward. “You cry a little bit — they search in your soul a little bit — but, naw, it’s fine.”

Each time it offers tests, the consortium sets up what amounts to an outdoor mini-hospital, complete with office supplies, printers and shredders. When they do antibody tests, they need to power their centrifuges. Those costs, plus the lab processing fee of $225 per test and compensation for 15-30 staff members, amounts to roughly $25,000 per day, by Stanford’s estimate.

“Sometimes you get reimbursed and sometimes you don’t,” she said. “It’s not an inexpensive operation at all.”

After its first few months, the consortium came to the attention of Philadelphia city leaders, who gave the group in funding. The group also attracted funding from foundations and individuals. The regional transportation authority hired the group to test its front-line transit workers weekly.

To date, the Black Doctors COVID-19 Consortium has tested more than 10,000 people — and Stanford is the “doctor on record” for each of them. She appreciates the financial support from the local government agencies but still worries that the city, and Philadelphia’s well-resourced hospital systems, aren’t being proactive enough on their own. In July, wait times for results from national commercial labs like LabCorp sometimes stretched past two weeks. The delays rendered the work of the consortium’s testing sites essentially worthless, unless a person agreed to isolate completely while awaiting the results. Meanwhile, at the major Philadelphia-area hospitals, doctors could get results within hours, using their in-house processing labs. Stanford to share their testing technology with the surrounding community, but she said she was told it was logistically impossible.

“Unfortunately, the value put on some of our poorest areas is not demonstrated,” Stanford said. “It’s not shown that those folks matter enough. That’s my opinion. They matter to me. That’s what keeps me going.”

Now, Stanford is working with Philadelphia’s health commissioner, trying to create a rotating schedule wherein each of the city’s health systems would offer free testing one day per week, from 9 a.m. to 9 p.m.

The medical infrastructure she has set up, Stanford said, and its popularity in the Black community, makes her group a likely candidate to help distribute a coronavirus vaccine when one becomes available. Representatives from the U.S. Department of Health and Human Services visited one of her consortium’s testing sites, to evaluate the potential for the group to pivot to vaccinations.

Overall, Stanford said she is happy to help out during the planning phases to make sure the most vulnerable Philadelphians can access the vaccine. However, she is distrustful of the federal oversight involved in vetting an eventual coronavirus vaccine. She said there are still too many about the process, and too many other instances of the Trump administration putting on the Centers for Disease Control and Prevention and the Food and Drug Administration, for her to commit now to doing actual vaccinations in Philadelphia’s neighborhoods.

“When the time comes, we’ll be ready,” she said. “But it’s not today.”

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“I feel like it’s been back and forth — the mayor says one thing, the governor says another. So who do you really listen to?” asked Burnett, a 32-year-old teacher’s assistant.

Looking for something to do with her 6-year-old son at the end of June, she saw the mayor announce that libraries could open in the new, modified green phase. But people who worked at the library were posting on Twitter that they were not open.

“The lines are very blurred,” said Burnett. “Are we completely in the green, or not?”

When the coronavirus shutdown was ordered in March, the message was straightforward and simple: Stay at home; don’t leave the house except to perform essential work or shop at essential businesses. However hard those restrictions were to stomach, they were clear.

Skip ahead four months. As businesses started to reopen, mixed messages on every level of government have made what’s permissible and safe feel like a matter of interpretation.

Absent any overarching or consistent national messaging, elected officials are left to come up with localized rules, which at times contradict one another, presenting a false choice between personal freedoms and protecting one’s health. That forces individuals to make decisions about their actions that carry heavy moral weight.

Color-Coded Confusion

Pennsylvania’s coded according to the colors of a traffic light, factors in two indicators: the amount of virus circulating in the community, and the degree to which the economy is open.

“In the beginning, we had a plan where there was pretty tight linkage between level of viral transmission and reopening activities,” said Dr. Susan Coffin, a pediatric infectious disease specialist working on Children’s Hospital of Philadelphia’s response to the pandemic. Over time, she said, though the color-coding system remained a good indicator for which businesses were opening up, it stopped reflecting the viral risk as closely as the number of new cases ebbed and flowed. And that, she said, has resulted in confusion.

Philadelphia in late July is officially in “modified, restricted green,” and gyms have been allowed to reopen. Indoor dining remains off-limits.

“Now, we are seeing what might sound like a contradictory message: Yes, we are reopening, but, no, we don’t want you to stop behaving as though there is virus in our community.”

In neighboring New Jersey, by contrast, the is incremental. There is no overall color-coding; instead, each phase offers a broad sense of what will change, and, industry-by-industry, individual restrictions are loosened one at a time.

For his part, Philadelphia Health Commissioner Thomas Farley said he wished people could have ignored Pennsylvania’s color-coding altogether.

“The governor came up with this high-level plan with these three different colors, but clearly Philadelphia is unique,” Farley told reporters at a June 30 press conference at which he announced the city would pause before entering the full green phase. “So we’re calling it green, but I would rather have people focus less on the color and more on what activities are allowed and not allowed.”

Part of the issue is that the science is evolving and information about the novel coronavirus changes rapidly. Masks, for example, were initially explicitly discouraged because of short supply. Once they became more available, and research emerged supporting their use, masks were back in full force.

Though health departments do their best to keep up with the research as it emerges — and to explain why their recommendations change, when they do — it can be hard to keep track of. And it doesn’t help when politicians contradict the science-backed recommendations.

“We can’t be out there as the secretary of health telling you to wear a mask and , ‘Don’t wear a mask. You’ll be fine,’” said April Hutcheson, communications director for the Pennsylvania Department of Health. “It makes the job more challenging.”

But there is some messaging health departments can control. Pennsylvania laid out what many interpreted as for testing capacity, contact tracing, nursing home outbreaks and the number of new cases that counties would have to hit to move to less restrictive phases by a certain date. Many counties in the southeastern part of the state didn’t meet those benchmarks but . The governor later said the metrics were not hard marks but would be considered in concert with other factors to determine overall risk.

Setting aside whether Pennsylvania’s transition from red to yellow led to an increase in coronavirus cases, the mixed messaging was likely to contribute to distrust in government, said Ellen Peters, who runs the Center for Science Communication Research at the University of Oregon.

“It gives people inconsistent information, so you’re being told, ‘Eh, that didn’t happen, but we’re going to go ahead and do it anyway,’” said Peters, whose Oregon county similarly failed to meet its benchmarks but moved into a new phase anyway. “And so people are left with, ‘Well, the guidelines don’t matter then. If they don’t matter, what else can I not trust that this city or state entity is telling me?’”

Research has shown that when people are stuck at an impasse, they are more likely to just .

How Safe Is Safe?

The health departments at the city and state level point to their regular news briefings, where they advise not just which activities are safe, but also how to do them safely. Asking people to constantly evaluate what they consider safe is a tall order.

“What does it mean to be careful right now? I don’t think that’s actually a meaningful instruction,” said Tess Wilkinson-Ryan, a professor of law and psychology at the University of Pennsylvania.

“The level of care we are asking of individuals is really high — we would never ask this in normal life.”

At the start of the pandemic, what it meant to be safe was easier to grasp, said Wilkinson-Ryan. Memes like “flattening the curve” gave people new language they needed to understand the broader reasoning behind shutting down the economy. They felt like they were doing something by doing nothing — it created a norm. In the partial reopening, that norm is gone, but it is not clear what replaces it as people make decisions about how to keep themselves and others safe.

Wilkinson-Ryan confronted her own dilemma on safety. About six weeks into strict lockdown in Philadelphia, her husband was out walking the dog when the leash got tangled around his ankle, and he fell back and hit his head. He told her what had happened and she asked him who the president was, half-joking, to test for signs of a concussion. “He said, deadpan, ‘George Bush.’ And he wasn’t joking.”

Wilkinson-Ryan spent the next few hours trying to determine how severe her husband’s concussion might be, and if it was bad, whether they should go to an emergency room that might be overwhelmed with contagious coronavirus patients.

Luckily, she was able to reach a pediatrician friend who advised her to take him to the hospital, where he was triaged into a non-COVID wing. He’s now doing fine.

Wilkinson-Ryan is grateful she had a friend with expertise to call upon, but she longed for a set of clear-cut rules to guide her in that stressful moment.

Making Their Own Decisions

Without those clear rules, Wilkinson-Ryan, Marquita Burnett and others have been left to make their own decisions based on a combination of the emerging science around the virus, whom they trust and what’s most important to them.

Burnett, for instance, had been taking her son to get his hair cut on his barber’s front porch. The barber always wore a mask and took the virus seriously, so when the barbershop reopened, she felt comfortable taking her son there.

But she’s not comfortable with any of her typical summer activities, like going to the zoo, amusement parks or outdoor restaurants. If she can’t predict the way a crowd of strangers will act, she’s not taking the risk.

Despite her sound reasoning, it’s easy to imagine someone else, confronted with the same choices, making the exact opposite decisions: skipping the barbershop because it’s indoors; hitting the zoo because it’s outside.

“It’s sort of like asking everyone to decide their own speed limit based on, like, the make and model of their car,” said Wilkinson-Ryan. “‘Think about who you’re gonna drive with. Think about the importance of your destination. Good luck!’”

Because one person’s idea of ‘careful’ in a pandemic is different from another’s, she said, the most helpful instructions are those that are clear and specific: maximum capacities in public spaces; marks on the ground to denote 6 feet of distance; specific instructions for people on how often they should go to the grocery store.

Otherwise, people are likely to come to different conclusions based on the same information, which in turn, leads to public shaming. And that has its own risks.

“When someone gets angry, they shut down to new information. They react and simply do what they want to do,” said Peters of the University of Oregon. “I could see where you could get much worse health behaviors from shaming other people.”

She cited pictures of people on beaches as a flashpoint, where some felt justified shaming others. The perspective of some photos, though, may have made beaches look more crowded than they were. “Maybe in reality, people are pretty far apart and they’re outdoors,” she said.

Wilkinson-Ryan said the shaming is a natural result of a lack of clear norms in a new and changing environment. Overburdened with decisions, it’s also a cognitive shortcut.

“It’s easy and salient to think about what people in my neighborhood are doing wrong,” said Wilkinson-Ryan. “They’re sitting at the park, they’re playing, they’re touching each other. That’s an : It comes easily to mind because it’s part of my everyday life. You tend to place blame on the causes that come to mind quickly and easily.”

She sees people blaming neighbors who make different decisions rather than holding state legislatures and Congress accountable.

In other countries, skirted this issue to some degree. National messaging meant there was no need to deputize hundreds of local health officials to project hyperlocal and often conflicting messages.

“It really is kind of ridiculous, that idea of asking all of these people to come up with their own experts and their own way of guiding behavior in the states or cities, rather than having the experts in the country come together and decide what is the best guidance for all of us and having the politicians stick with that,” said Peters.

To streamline her own decision-making, Peters said she adopted a approach. But when everyone is guided by a different North Star, people are bound to crash into one another.

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He’s still living on the streets.

“I’ll be honest, I don’t really sleep too much,” said Ed, who’s 51 and struggling with addiction. “Every four or five days I get a couple hours.”

KHN agreed not to use his last name because he uses illegal drugs.

Philadelphia has the highest overdose rate of any big city in America — , more than three people a day died of drug overdoses there, on average. Before the coronavirus began spreading across the United States, the opioid overdose epidemic was the biggest health crisis on the minds of many city officials and public health experts. The coronavirus pandemic has largely eclipsed the conversation around the opioid crisis. But the crisis still rages on despite business closures, the cancellation of in-person treatment appointments and the strain on many addiction resources in the city.

When his usual shelter wasn’t an option anymore, Ed tried to get into residential drug treatment. He figured that would be a good way to try to get back on his feet and, if nothing else, get a few good nights of rest. But he had contracted pinkeye, a symptom thought to be associated with the virus that leads to COVID-19, so the evaluation center didn’t want to place him in an inpatient facility until he’d gotten the pinkeye checked out. But he couldn’t see a doctor because he didn’t have a phone for a telehealth appointment.

“I got myself stuck, and I’m trying to pull everything back together before it totally blows up,” he said.

Rosalind Pichardo wants to help people in Ed’s situation. Before the pandemic, Pichardo would hit the streets of her neighborhood, Kensington, which has the highest drug overdose rate in Philadelphia. She’d head out with a bag full of snack bars, cookies and Narcan, the opioid overdose reversal drug.

She’d hand Narcan out to people using drugs, and people selling drugs — anyone who wanted it. Pichardo started her own organization, Operation Save Our City, which initially set out to work with survivors of gun violence in the neighborhood. When she realized that overdoses were killing people too, she began getting more involved with the and started handing out Narcan through the city’s syringe exchange.

When Pennsylvania’s stay-at-home order went into effect, Pichardo and others worried that more people might start using drugs alone, and that fewer first responders would be patrolling the streets or nearby and able to revive them if they overdosed.

So, Pichardo and other harm reduction activists gave out even more Narcan. A representative for Prevention Point Philadelphia, the group that operates a large syringe exchange program in the city, said that during the first month of the city’s stay-at-home order, they handed out almost twice as much Narcan as usual.

After the lockdowns and social distancing began, Pichardo worried that more people would be using drugs alone, leading to more overdoses. But Philadelphia’s fatal overdose rate during the pandemic remains about the same as it was this time last year. Pichardo said she thinks that’s evidence that flooding the streets with Narcan is working — that people are continuing to use drugs, and maybe even using more drugs, but that users are utilizing Narcan more often and administering it to one another.

That is the hope. But Pichardo said users don’t always have a buddy to keep watch, and during the pandemic first responders have seemed much more hesitant to intervene. For example, she recently administered Narcan to three people in Kensington who overdosed near a subway station, while two police officers stood by and watched. Before the pandemic, they would often be right there with her, helping.

To reverse the overdoses, Pichardo crouched over the people who she said had started turning blue as their oxygen levels dropped. She injected the Narcan into their noses, using a disposable plastic applicator. Normally, she would perform rescue breathing, too, but since the pandemic began she has started carrying an Ambu bag, which pumps air into a person’s lungs and avoids mouth-to-mouth resuscitation. Among the three people, she said, it took six doses of Narcan to revive them. The police officers didn’t step in to help but did toss several overdose-reversal doses toward Pichardo as she worked.

“I don’t expect ’em to give ’em rescue breaths if they don’t want to, but at least administer the lifesaving drug,” Pichardo said.

In her work as a volunteer, she has reversed almost 400 overdoses, she estimated.

“There’s social distancing — to a limit,” Pichardo said, “I think when someone’s life is in jeopardy, they’re worth saving. You just can’t watch people die.”

Even before Philadelphia officially issued its stay-at-home order, , including for narcotics. The idea was to reduce contact overall, help keep the jail population low and reduce the risk of the virus getting passed around inside. But Pichardo and other community activists said the decreased law enforcement emboldened drug dealers in the Kensington neighborhood, where open-air drug sales and use are common.

“You can tell they have everything down pat, from the lookout to the corner boys to the one actually holding the product — the one holding the product’s got some good PPE gear,” said Pichardo.

More dealers working openly on the street has led to more fights over territory, she added, which in turn has meant more violence. While overall crime in Philadelphia and has declined during the pandemic, gun violence .

Police resumed arrests at the beginning of May.

Now when she goes out to offer relief and hand out Narcan, Pichardo packs a few extra things in her bag of supplies: face masks, gloves and gun locks.

“It’s like the survival kit of the ’hood,” she said.

For those struggling with addiction who are ready to start recovery, newly relaxed federal restrictions have made it medications that curb opioid cravings and stem withdrawal. Several efforts are underway among Philadelphia-based public health groups and criminal justice advocacy organizations to give cellphones to people who are homeless or coming out of jail, so they can make a telehealth appointment and get quicker access to a prescription for those medicines.

During the pandemic, people taking medication-assisted treatment can renew their prescription every month instead of every week, which helps decrease trips to the pharmacy. It is too soon to know if more people are taking advantage of the new rules, and accessing medication-assisted treatment via telehealth, but if that turns out to be the case, many addiction medicine specialists argue the new rules should become permanent, even after the pandemic ends.

“If we find that these relaxed restrictions are bringing more people to the table, that presents enormous ethical questions about whether or not the DEA should reinstate these restrictive policies that they had going in the first place,” said Dr. , a physician who treats people with substance-use disorder.

Cocchiaro said the whole point of addiction treatment is to facilitate help as soon as someone is ready for it. He hopes if access to recovery can be made simpler during a pandemic, it can remain that way afterward.

This story is part of a partnership that includes , and Kaiser Health News.

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As city leaders across the country scramble to find space for the expected surge of COVID-19 patients, some are looking at a seemingly obvious choice: former hospital buildings, sitting empty, right downtown.

In Philadelphia, New Orleans, and Los Angeles, where hospitalizations from COVID-19 increase each day, shuttered hospitals that once served the city’s poor and uninsured sit at the center of a public health crisis that begs for exactly what they can offer: more space. But reopening closed hospitals, even in a public health emergency, is difficult.

Philadelphia, the largest city in America with no public hospital, is also the There, Hahnemann University Hospital shut its doors in September after its owner, Philadelphia Academic Health System, declared bankruptcy. While not public, the 496-bed safety-net hospital mainly treated patients on public insurance. Philadelphia Mayor Jim Kenney began talks with the building’s owner, California-based investment banker Joel Freedman, as soon as his administration saw projections that the demand for hospital beds during the pandemic would outpace the city’s capacity. Not long after negotiations started, city officials announced the talks were going badly.

“Mr. Freedman was difficult to work with at times when he was the owner of the hospital, and he is still difficult to work with as the owner of the shuttered hospital,” said Brian Abernathy, who is Philadelphia’s managing director and heading the city’s COVID-19 response.

In New Orleans, where the soaring COVID-19 infection rate is disproportionately high compared with its population, Charity Hospital sits vacant in the middle of town. The former public hospital never reopened after Hurricane Katrina in 2005. The Louisiana State University System, which owns the building, incorporated Charity Hospital into the city’s new medical center, but the original building remains vacant. Instead of using it during the pandemic, the New Orleans Convention Center is being to a “step-down” facility with the capacity to treat up to after they no longer need critical care.

Elsewhere, city governments have struck deals with the owners of empty hospital buildings to lease their space. At the city is paying $236 per night per bed, for a total of $2.6 million each month.

In Philadelphia, Freedman offered the Hahnemann building to the city for $27 per bed per night, plus taxes, maintenance and insurance, which the city would pay directly. All told, that added up to just over $900,000 per month.

“I think he is looking at how to turn an asset that is earning no revenue into an asset that earns some revenue, and isn’t thinking through what the impacts are on public health,” Abernathy said of Freedman. “I think he’s looking at this as a business transaction rather than providing an imminent and important aid to the city and our residents.”

This isn’t the first time Freedman has come under fire by Philadelphians for his handling of the hospital. Its closure sparked protests from city officials, health care unions, and even presidential hopeful . Critics speculated that Freedman, whose private equity firm bought the struggling hospital in 2018, didn’t try in earnest to save it and planned to flip it for its valuable downtown real estate. Notably, Hahnemann’s real estate was parsed out into a separate company, Broad Street Healthcare Properties, also owned by Freedman, and not included in Philadelphia Academic Health System’s Chapter 11 bankruptcy petition.

A representative for Freedman said the building has an interested buyer, and that is one reason Broad Street Healthcare will not let the city use the building at cost.

“We’re offering this facility because of the public benefit in a health crisis, but it comes at a cost to the property owner,” said Broad Street representative Sam Singer.

As urban hospitals have struggled in recent years, it’s become increasingly common for : Big firms buy struggling medical centers with the promise of financial support and to improve their operations and business strategy. When things go right, the business succeeds, and the private equity firm sells it in a public offering or to another bidder for more than it paid.

In other cases, though, the firms load companies up with debt, take dividends out for themselves, and charge fees and high-interest loans, leaving a company in a much weaker position than it would have been otherwise, and often on the verge of bankruptcy.

“The house never loses,” said Eileen Appelbaum, co-director at the Center for Economic and Policy Research. “The private equity firm makes money whether the company succeeds or it doesn’t.”

For instance, Steward Health Care was able to expand from its base in Massachusetts to a 36-hospital network nationwide with backing from Cerberus Capital Management. Now, said Appelbaum, the chain of community hospitals is stuck paying rent to a separate real estate company, on all its properties, while also struggling to stay in the black. The network it would furlough non-clinical workers across nine states because the requirement to cancel elective surgeries caused too great a financial strain.

Freedman’s private equity firm is called Paladin Healthcare, and it has previously bought and managed hospitals in California and ., where it Howard University Hospital out of the red. Paladin then sold the hospital to Adventist HealthCare last summer.

Urban hospitals like Hahnemann have struggled to stay afloat in recent years, in part due to their lack of privately insured patients. Hospitals often finance the care of uninsured patients or those on Medicaid by treating those with private insurance, which reimburses the hospitals faster and at a higher rate. At Hahnemann, two-thirds of patients were on Medicaid or Medicare. While a financially struggling public or nonprofit hospital might continue serving a poorer community, a for-profit hospital has different incentives, said Vickie Williams, a former law professor for Gonzaga University.

“If your urban hospital is purchased by a for-profit company and it doesn’t perform sufficiently, they don’t have the same necessarily mission-driven directives to keep that hospital functioning for the good of the community at a loss,” said Williams, who is now senior counsel for CommonSpirit Health in Tacoma, Washington.

Freedman has said that he tried to sell the Hahnemann property to a nonprofit and requested money from the city and state to keep it open, but neither option worked.

Following news that Philadelphia had abandoned negotiations with Freedman, calls to seize the property in order to save lives came pouring in, including from elected officials.

“Eminent Domain was created for situations like ,” City Council member Helen Gym wrote on Twitter. “This is a public health emergency and Philly is the largest city in the nation WITHOUT a public hospital. We cannot allow unconscionable greed to get in the way of saving lives. Eminent domain this property.” Legal experts say the lengthy process of eminent domain and the requirement to pay the owner fair market value for the building make it an unlikely mechanism for an instance like this.

But in public health emergencies, local, state and federal governments do have broad authority to commandeer private property, such as hotels, convention centers, university dormitories or even defunct hospitals for disaster response. Williams, whose research has focused on preserving hospital infrastructure during a pandemic, said that so far in the United States, that hasn’t had to happen ― at least not in the traditional sense.

In Pennsylvania, the governor’s emergency declaration gives him the to “commandeer or utilize any private, public or quasi-public property if necessary to cope with the disaster emergency.” A health department representative said all options remain on the table in the event that the city’s hospital bed capacity is overrun.

In the interim, the mayor made a deal with Temple University to use its basketball arena, which would have the capacity to treat 250 non-critical patients, at no cost to the city.

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“I would just hold her and cry all day,” Smith said.

At 18, Smith was caring for two children, 4-year-old Kelaiah and newborn Nelly, with little help from the partner in her abusive relationship. The circumstances were difficult, but she knew the tears were more than that.

“I really didn’t have a connection for her,” said Smith, now a motivational speaker and mother of three living in Philadelphia. “I didn’t even want to breastfeed because I didn’t want that closeness with her.”

The emotions were overwhelming, but Smith couldn’t bring herself to ask for help.

“You’re afraid to say it because you think the next step is [for the authorities] to take your children away from you,” she said. “You’re young and you’re African American, so it’s like [people are thinking], ‘She’s going to be a bad mom.'”

Smith’s concern was echoed by several black women interviewed for this story. Maternal health experts said some black women choose to struggle on their own rather than seek care and risk having their families torn apart by child welfare services.

Nationally, postpartum depression affects 1 in 7 mothers. Medical for all women experiencing postpartum depression, and many women also find relief by taking general antidepressants, such as fluoxetine (Prozac) and sertraline (Zoloft).

In March, the Food and Drug Administration specifically for the treatment of postpartum depression, which can include extreme sadness, anxiety  and exhaustion that may interfere with a woman’s . The mood disorder can begin in pregnancy and last for months after childbirth.

But those advances help only if women’s needs are identified in the first place — a particular challenge for women of color and low-income mothers, as they are to suffer from postpartum mental illness but than other mothers.

The consequences of untreated postpartum depression can be serious. A report from nine maternal mortality review committees in the United States found that mental health problems, ranging from depression to substance use or trauma, went unidentified in many cases and in pregnancy-related deaths. Although rare, deaths of new mothers by suicide have also .

Babies can suffer too, struggling to form a secure attachment with their mothers and increasing their risk of and .

‘I Was Lying To You’

For many women of color, the fear of child welfare services comes from seeing real incidents in their community, said Ayesha Uqdah, a community health worker who conducts home visits for pregnant and postpartum women in Philadelphia through the nonprofit .

News reports in and studies at the have found that child welfare workers deem black mothers unfit at a higher rate than they do white mothers, even when controlling for factors like education and poverty.

During home visits, Uqdah asks clients the 10 questions on the , one of the most commonly used tools to identify women at risk. The survey asks women to rate things like how often they’ve laughed or whether they had trouble sleeping in the past week. The answers are tallied for a score out of 30, and anyone who scores above 10 is referred for a formal clinical assessment.

Uqdah remembered conducting the survey with one pregnant client, who scored a 22. The woman decided not to go for the mental health services Uqdah recommended.

A week after having her baby, the same woman’s answers netted her a score of zero: perfect mental health.

“I knew there was something going on,” Uqdah said. “But our job isn’t to push our clients to do something they’re not comfortable doing.”

About a month later, the woman broke down and told Uqdah, “I was lying to you. I really did need services, but I didn’t want to admit it to you or myself.”

The woman’s first child had been taken into child welfare custody and ended up with her grandfather, Uqdah said. The young mother didn’t want that to happen again.

Screening Tools Don’t Serve Everyone Well

Another hurdle for women of color comes from the tools clinicians use to screen for postpartum depression.

The tools were developed based on mostly white research participants, said , an associate professor of psychiatry at Georgetown University Medical Center. Often those screening tools are less relevant for women of color.

Research shows that different cultures talk about mental illness in different ways. African Americans are less likely to , but they may say they don’t feel like themselves, Breland-Noble said.

It’s also more common for people in minority communities to experience . Depression can show up as headaches, for example, or anxiety as gastrointestinal issues.

Studies evaluating screening tools used with low-income, African American mothers found they . Researchers for certain African American women in order to better identify women who needs help but may not be scoring high enough to trigger a follow-up under current guidelines.

Bringing Treatment Home

It took Smith six months after daughter Nelly’s birth to work up the courage to see a doctor about her postpartum depression.

Even then, she encountered the typical barriers faced by new mothers: Therapy is expensive, wait times are long, and coordinating transportation and child care can be difficult, especially for someone struggling with depression.

But Smith was determined. She visited two different clinics until she found a good fit. After several months of therapy and medication, she began feeling better. Today, Smith and her three daughters go to weekly $5 movies and do their makeup together before big outings.

Other mothers never receive care. A recent study from the Children’s Hospital of Philadelphia found that only 1 in 10 women who screened positive for postpartum depression at the hospital’s urban medical practice sites sought any treatment within the following six months. A examining three years’ worth of New Jersey Medicaid claims found white women were nearly twice as likely to receive treatment as were women of color.

Noticing that gap, the Maternity Care Coalition in Philadelphia tried something new.

In 2018, the nonprofit started a pilot program that pairs mothers with Drexel University graduate students training to be marriage and family counselors. The student counselors visit the women an hour a week and provide free in-home counseling for as many weeks as the women need. Last year, the program served 30 clients. This year, the organization plans to expand the program to multiple counties in the region and hire professional therapists.

It was a game changer for Stephanie Lee, a 39-year-old who had postpartum depression after the birth of her second child in 2017.

“It was so rough, like I was a mess, I was crying,” Lee said. “I just felt like nobody understood me.”

She felt shame asking for help and thought it made her look weak. Lee’s mother had already helped her raise her older son when Lee was a teenager, and many members of her family had raised multiple kids close in age.

“The black community don’t know postpartum,” Lee said. “There’s this expectation on us as women of color that we have to be … superhero strong, that we’re not allowed to be vulnerable.”

But with in-home therapy, no one had to know Lee was seeking treatment.

The counselors helped Lee get back to work and learn how to make time for herself — even just a few minutes in the morning to say a prayer or do some positive affirmations.

“If this is the only time I have,” Lee said, “from the time I get the shower, the time to do my hair, quiet time to myself — use it. Just use it.”

This story was reported as a partnership that includes , , and Kaiser Health News.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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Justice Department lawyers argued in federal court Thursday against the nonprofit, Safehouse, which wants to open the site.

, in a rare move, argued the case himself. He said Safehouse’s intended activities would clearly violate a portion of the federal Controlled Substances Act that makes it illegal to manage any site for the purpose of unlawfully using a controlled substance. The statute was added to the broader legislation in the mid-1980s at the height of the crack cocaine epidemic in American cities.

Safehouse argued the law does not apply because the nonprofit’s main purpose is saving lives, not providing illegal drugs. Its board members said that the so-called crackhouse statute was not designed to be applied in the face of a public health emergency.

“Do you think that Congress would want to send volunteer nurses and doctors to prison?” , the former Philadelphia mayor and Pennsylvania governor who serves on Safehouse’s board, asked after the hearing. “Do you think that’s a legitimate result of this statute? Of course not, no one could have ever contemplated that, ever!”

Safehouse of Philadelphia’s current mayor, Jim Kenney, the health department and district attorney, who announced they would support a supervised injection site in January 2018 as another tool to combat the city’s dire overdose crisis.

More than 1,100 people died of overdoses in Philadelphia in 2018 — an average of three people a day and triple the city’s homicide rate.

In response, various harm-reduction advocates and medical professionals founded Safehouse, created a plan for its operations and began scouting a location.

But the in February to block it from opening.

In June, the Justice Department filed a request for motion on the pleadings — essentially asking the judge to rule on the case based on the arguments that had already been submitted. Since then, a range of parties have in support of and opposition to the site. Attorneys general, mayors and governors from across the country filed briefs backing Safehouse, while several neighborhood associations in Philadelphia’s Kensington section and the police union filed against it.

U.S. District Judge Gerald McHugh requested an evidentiary hearing to learn more about the nuts and bolts of how the facility would work were it to open. At that hearing, in August, Safehouse’s legal team, led by , explained that Safehouse would not provide drugs but people could bring their own to inject while medical professionals stood by with naloxone, the overdose reversal drug. They said Safehouse would also be an opportunity for people to access treatment, if they were ready.

Safehouse vice president said the only difference between what Safehouse would do and what’s already happening at federally sanctioned needle exchanges and the city’s emergency departments is that the injection would happen in a safe, comfortable place.

“If the law allows for the provision of clean equipment, and the law allows for the provision of naloxone to save your life, does the law really not allow you to provide support in that thin sliver in between those federal permissible activities?” she said.

McSwain contended that operating in that “sliver” is exactly what makes Safehouse illegal.

Much of the debate at Thursday’s hearing revolved around interpreting the word “purpose.” The statute in the Controlled Substances Act makes it illegal for anyone to “knowingly open … use or maintain any place … for the purpose of … using any controlled substance.”

The government said it’s simple: Safehouse’s purpose is for people to use drugs. McSwain conceded it will also provide access to treatment, but so does Prevention Point, the city’s only syringe exchange. Effectively, he argued, the only difference between Safehouse and what’s already going on elsewhere would be that people could inject drugs at Safehouse, which is prohibited by the statute.

“If this opens up, the whole point of it existing is for addicts to come and use drugs,” McSwain said.

Safehouse said its purpose is to keep those at risk of overdose safe from dying.

“I dispute the idea that we’re inviting people for drug use,” Eisenstein argued. “We’re inviting people to stay to be proximal to medical support.”

McSwain conceded that if Safehouse were to offer the medical support without opening up a space specifically for people to use drugs, the statute would not apply.

“If Safehouse pulled an emergency truck up to the park where people are shooting up, I don’t think [the statute] would reach that. If they had people come into the unit, that would be different,” he said. Mobile units and tents in parks are supervised injection models that other cities have implemented.

Safehouse has also said it hasn’t ruled out the idea that it might incorporate a supervised injection site into another medical facility or community center, which would indisputably have other purposes.

McSwain ultimately argued that Safehouse had come to the “steps of the wrong institution,” and that if it wanted to change the law, it should appeal to Congress. He accused Safehouse’s board of hubris, pointing to Safehouse president ’s testimony at the August hearing, where he acknowledged that they hadn’t tried to open a site until now because they feared the federal government would think it was illegal and might shut it down.

“What’s changed?” asked McSwain. “Safehouse just got to the point where they thought they knew better.”

“Either that, or it’s the death toll,” Judge McHugh replied.

San Francisco, Seattle, New York City, Pittsburgh and Ithaca, N.Y., are among other U.S. cities that have expressed interest in opening a site and are watching the Philadelphia case closely. In 2016, a nonprofit in Boston opened a room where people could go , with nurses equipped with naloxone standing by.

The Justice Department’s motion for the judge to rule on the pleadings is pending. McHugh could decide he now has enough information to issue a ruling, or he might request more hearings, arguments or a full-fledged trial.

Safehouse’s legal team said that if the judge ruled in its favor, it might request a preliminary injunction in the form of relief to allow the facility to open early.

“We recognize there’s a crisis here,” said Safehouse’s Goldfein. “The goal would be to open as soon as possible.”

This story is part of a partnership that includes , and Kaiser Health News.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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He made his way to a mobile medical clinic parked on a corner of Philadelphia’s Kensington neighborhood, in the geographical heart of the city’s overdose crisis. People call it “the bupe bus.”

Morano, 29, has done seven stints in rehab for opioid addiction in the past 15 years.

 is a drug that curbs cravings and treats the symptoms of withdrawal from opioid addiction. One of the common brand name drugs that contains it,Ìý, blends buprenorphine with .

Combined with cognitive behavioral therapy, it is one of the considered the gold standard for opioid-addiction treatment.

Morano had tried Suboxone before — he had purchased some from a street dealer and had used it to get through his workday, when he couldn’t use heroin. It kept the misery of withdrawal sickness at bay. So he had a sense of how it would make him feel. He’d always sort of thought of it as a crutch. But after a slip following his latest stint in rehab, he said, he committed to recovery.

“I can’t do this anymore, and I need something,” Morano said.

The bupe bus — a project of Prevention Point Philadelphia, the city’s only syringe exchange program — is part of Philadelphia’s efforts to expand access to this particular form of medication-assisted treatment, known as MAT, for opioid addiction.

Morano was first in line at the mobile clinic.

When the doors of the bus heaved open, waved Morano inside, where they squeezed into a tiny exam room. Cocchiaro and Morano discussed how buprenorphine might help Morano’s recovery succeed this time, and whether he’d be open to seeing a therapist. Cocchiaro gave Morano instructions on how to take the medication, and then called a pharmacy to authorize a prescription.

To date, much of the research on barriers to buprenorphine access has focused on the fact that too few medical providers are certified to write the prescriptions. According to federal law, doctors must apply for a special waiver from the Substance Abuse and Mental Health Services Administration, or SAMHSA, to prescribe buprenorphine. To get the waiver, a doctor must undergo eight hours of training — and can prescribe the drug to a maximum of 30 patients at a time, to start. Given these constraints, many doctors don’t bother.

But pharmacists are also a part of the problem. Because they fill the prescriptions, pharmacists are the gatekeepers for the drug, and not all of them are willing to take on that role. Increasing pharmacists’ involvement in distributing buprenorphine might be just as important as persuading more doctors to prescribe it, according to of the Philadelphia College of Pharmacy.

“We can write a bunch of prescriptions for people,” he said. “But if they don’t have a pharmacy and a pharmacist that’s willing to fill that medication for them, fill it consistently and have an open conversation with that patient throughout that treatment process, then we may end up with a bottleneck at the community pharmacy.”

Just a few blocks from the bupe bus in Kensington, Richard Ost owns an independent pharmacy. He said his store was one of the first in the neighborhood to stock buprenorphine. But after a while, Ost started noticing that people were not using the medication as directed — they were selling it instead.

Buprenorphine acts as a partial opioid agonist, which means it’s a low-grade opioid. When taken in pill or tablet form, it’s unlikely to cause the same feelings of euphoria as heroin would, but it might if it were dissolved and injected. Many people buy it on the street for the same reason Morano did: to keep from going into withdrawal between injecting heroin or fentanyl. Others buy it to try to quit using on their own.

“We started seeing people do it in our store in front of us,” said Ost. He said it’s unethical to dispense a prescription if a patient turns around and sells it illegally, rather than use it. “Once we saw that with a patient, we terminated them as a patient.”

Ost explained that the illegal market for Suboxone also meant customers trying to stay sober were being continually targeted and tempted.

“So if we were having a lot of people in recovery coming out of our stores, the people who were dealing illicit drugs knew that, and they would be there to talk to them and they would say, ‘Well, I’ll give you this’ or ‘I’ll give you that,’ or ‘I’ll buy your Suboxone’ or ‘I’ll trade you for this.’”

Ost said that eventually his staff didn’t feel safe, and that neither did the customers. He understands the value of bupe but said it just wasn’t worth it. He mostly has stopped carrying it.

Even those pharmacies that aim to stock buprenorphine can run into problems. Limits set by wholesalers require pharmacies to order the drug in small, frequent batches. Though pharmacies can apply for exemptions to order more at a time, or to have a higher percentage of their total stock consist of controlled substances, doing so invites a higher level of scrutiny from the wholesaler and, in turn, the Drug Enforcement Administration.

Another issue is that doctors and pharmacists receive different education about how long buprenorphine should be prescribed before tapering a patient off it. Many medical providers might prescribe the drug for long-term treatment, based on recent SAMHSA , while pharmacists may view longer courses of treatment as posing the risk of long-term dependency.

“It’s not even that they’re on different pages,” said Ventricelli of the College of Pharmacy. “It’s that they’re reading completely different books.”

If a patient going through withdrawal can’t get buprenorphine quickly, the stakes are high. Silvana Mazzella, associate executive director at Prevention Point, said that when it’s not available, patients are more likely to turn back to heroin or fentanyl.

“We’re in a situation where if you are in withdrawal, you’re sick, you need to get well, you want help today, and if you can’t get it through medication-assisted treatment, unfortunately you will find it a block away, very quickly, and very cheaply,” she said.

Doctors with Prevention Point have found a pharmacy near the bupe bus that will reliably dispense buprenorphine to their Philadelphia patients. It’s a neighborhood branch of a local chain, called the .

The head pharmacist, Anthony Shirley, said he’s comfortable filling the scripts because he trusts that the doctors at Prevention Point will write prescriptions only for patients who need the medication. He has heard firsthand from patients who say buprenorphine saved their lives.

“That’s something you can’t really put a price tag on,” Shirley said. For him, the calculation is simple: His store is in an area where many people need buprenorphine. That means it’s his job to get it to them.

This story is part of a partnership that includes , and Kaiser Health News.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).