San Francisco is on track to lose an average of nearly two people a day to drugs in 2020, compared with the 178 who had died by Dec. 20 of the coronavirus.
SAN FRANCISCO — In early 2019, Tom Wolf posted a thank-you on Twitter to the cop who had arrested him the previous spring, when he was homeless and strung out in a doorway with 103 tiny bindles of heroin and cocaine in a plastic baggie at his feet.
“You saved my life,” wrote Wolf, who had finally gotten clean after that bust and 90 days in jail, ending six months of sleeping on scraps of cardboard on the sidewalk.
Today, he joins a growing chorus of people, including the mayor, calling for the city to crack down on an increasingly deadly drug trade. But there is little agreement on how that should be done. Those who demand more arrests and stiffer penalties for dealers face powerful opposition in a city with little appetite for locking people up for drugs, especially as the Black Lives Matter and Defund the Police movements push to drastically limit the power of law enforcement to deal with social problems.
Drug overdoses killed 621 people in the first 11 months of 2020, up from 441 in all of 2019 and 259 in 2018. San Francisco is on track to lose an average of nearly two people a day to drugs in 2020, compared with the 178 who had died by Dec. 20 of the coronavirus.
As in other parts of the country, most of the overdoses have been linked to fentanyl, the powerful synthetic opioid that laid waste to the eastern United States starting in 2013 but didn’t arrive in the Bay Area until about five years later. Just as the city’s drug scene was awash with the lethal new product — which is 50 times stronger than heroin and sells on the street for around $20 for a baggie weighing less than half a gram — the coronavirus pandemic hit, absorbing the attention and resources of health officials and isolating drug users, making them more likely to overdose.
The pandemic is contributing to rising overdose deaths nationwide, according to the Centers for Disease Control and Prevention, which reported last month that a record 81,000 Americans died of an overdose in the 12 months ending in May.
“This is moving very quickly in a horrific direction, and the solutions aren’t matching it,” said Supervisor Matt Haney, who represents the Tenderloin and South of Market neighborhoods, where nearly 40% of the deaths have occurred. Haney, who has hammered City Hall for what he sees as its indifference to a life-or-death crisis, is calling for a more coordinated response.
“It should be a harm reduction response, it should be a treatment response — and yes, there needs to be a law enforcement aspect of it too,” he said.
Tensions within the city’s leadership came to a head in September, when Mayor London Breed supported an effort by City Attorney Dennis Herrera to clean up the Tenderloin by legally blocking 28 known drug dealers from entering the neighborhood.
But District Attorney Chesa Boudin, a progressive elected in 2019 on a platform of police accountability and racial justice, sided with activists opposing the move. He called it a “recycled, punishment-focused” approach that would accomplish nothing.
People have died on the Tenderloin’s needle-strewn sidewalks and alone in hotel rooms where they were housed by the city to protect them from covid-19. Older Black men living alone in residential hotels are dying at particularly high rates; Blacks make up around 5% of the city’s population but account for a quarter of the 2020 overdoses. Last February, a man was found hunched over, ice-cold, in the front pew at St. Boniface Roman Catholic Church.
The only reason drug deaths aren’t in the thousands, say health officials, is the outreach that has become the mainstay of the city’s drug policy. From January to October, 2,975 deaths were prevented by naloxone, an overdose reversal drug that’s usually sprayed up the nose, according to the DOPE Project, a city-funded program that trains outreach workers, drug users, the users’ family members and others.
“If we didn’t have Narcan,” said program manager Kristen Marshall, referring to the common naloxone brand name, “there would be no room at our morgue.”
The city is also hoping that this year state lawmakers will approve safe consumption sites, where people can do drugs in a supervised setting. Other initiatives, like a 24-hour meth sobering center and an overhaul of the city’s behavioral health system, have been put on hold because of pandemic-strained resources.
Efforts like the DOPE Project, the country’s largest distributor of naloxone, reflect a seismic shift over the past few years in the way cities confront drug abuse. As more people have come to see addiction as a disease rather than a crime, there is little appetite for locking up low-level dealers, let alone drug users — policies left over from the “war on drugs” that began in 1971 under President Richard Nixon and disproportionately punished Black Americans.
In practice, San Francisco police don’t arrest people for taking drugs, certainly not in the Tenderloin. On a sunny afternoon in early December, a red-haired young woman in a beret crouched on a Hyde Street sidewalk with her eyes closed, clutching a piece of foil and a straw. A few blocks away, a man sat on the curb injecting a needle into a thigh covered with scabs and scars, while two uniformed police officers sat in a squad car across the street.
Last spring, after the pandemic prompted a citywide shutdown, police stopped arresting dealers to avoid contacts that might spread the coronavirus. Within weeks, the sidewalks of the Tenderloin were lined with transients in tents. The streets became such a narcotics free-for-all that many of the working-class and immigrant families living there felt afraid to leave their homes, according to a federal lawsuit filed by business owners and residents. It accuses City Hall of treating less wealthy ZIP codes as “containment zones” for the city’s ills.
The suit was settled a few weeks later after officials moved most of the tents to designated “safe sleeping sites.” But for many, the deterioration of the Tenderloin, juxtaposed with the gleaming headquarters of companies like Twitter and Uber just blocks away, symbolizes San Francisco’s starkest contradictions.
The Federal Initiative for the Tenderloin was one such effort, announced in 2019. It aims to “reclaim a neighborhood that is being smothered by lawlessness,” U.S. Attorney David Anderson said at a recent virtual news conference held to announce a major operation in which the feds arrested seven people and seized 10 pounds of fentanyl.
Law enforcement agencies have blamed the continued availability of cheap, potent drugs on lax prosecutions. Boudin, however, said his office files charges in 80% of felony drug cases, but most involve low-level dealers whom cartels can easily replace in a matter of hours.
He pointed to a 2019 federal sting that culminated in the arrest of 32 dealers — mostly Hondurans who were later deported — after a two-year undercover operation involving 15 agencies.
“You go walk through the Tenderloin today and tell me if it made a difference,” said Boudin.
His position reflects a growing “progressive prosecutor” movement that questions whether decades-old policies that focus on putting people behind bars are effective or just. In May, the killing of George Floyd by the Minneapolis police energized a nationwide police reform campaign. Cities around the country, including San Francisco, have promised to redirect millions of dollars from law enforcement to social programs.
“If our city leadership says in one breath that they want to defund the police and are for racial and economic justice and in the next talk about arresting drug dealers, they’re hypocrites and they’re wrong,” said Marshall, the leader of the DOPE Project.
But Wolf, 50, believes a concerted crackdown on dealers would send a message to the drug networks that San Francisco is no longer an open-air illegal drug market.
Like hundreds of thousands of other Americans who’ve succumbed to opiate misuse, he began with a prescription for the painkiller oxycodone, in his case following foot surgery in 2015. When the pills ran out, he made his way from his tidy home in Daly City, just south of San Francisco, to the Tenderloin, where dealers in hoodies and backpacks loiter three or four deep on some blocks.
When he could no longer afford pills, Wolf switched to heroin, which he learned how to inject on YouTube. He soon lost his job as a caseworker for the city and his wife threw him out, so he became homeless, holding large quantities of drugs for Central American dealers, who sometimes showed him photos of the lavish houses they were having built for their families back home.
Looking back, he wishes it hadn’t taken six arrests and three months behind bars before someone finally pushed him toward treatment.
“In San Francisco, it seems like we’ve moved away from trying to urge people into treatment and instead are just trying to keep people alive,” he said. “And that’s not really working out that great.”
Illinois recently became the first state to provide public health insurance to all low-income noncitizen seniors, even if they're in the country illegally.
This article was published on Thursday, January 7, 2021 in Kaiser Health News.
As a nurse manager for one of Chicago's busiest safety-net hospitals, Raquel Prendkowski has witnessed covid-19's devastating toll on many of the city's most vulnerable residents — including people who lack health insurance because of their immigration status. Some come in so sick they go right to intensive care. Some don't survive.
"We're in a bad dream all the time," she said during a recent day treating coronavirus patients at Mount Sinai Hospital, which was founded in the early 20th century to care for the city's poorest immigrants. "I can't wait to wake up from this."
Prendkowski believes some of the death and suffering could have been avoided if more of these people had regular treatment for the types of chronic conditions — asthma, diabetes, heart disease — that can worsen covid. She now sees a new reason for hope.
Amid a deadly virus outbreak that has disproportionately stricken Latino communities, Illinois recently became the first state to provide public health insurance to all low-income noncitizen seniors, even if they're in the country illegally. Advocates for immigrants expect it will inspire other states to do the same, building on efforts to cover undocumented children and young adults. Currently, Democratic legislators in California are pushing to expand coverage to all low-income undocumented immigrants there.
"The fact that we're going to do this during the pandemic really shows our commitment to expansion and broadening healthcare access. It's an amazing first step in the door," said Graciela Guzmán, campaign director for Healthy Illinois, a group that advocates for universal coverage.
Undocumented immigrants without health insurance often skip care. That was the case for Victoria Hernandez, 68, a house cleaner who lives in West Chicago, a suburb. The Mexico City native said she had avoided going to the doctor because she didn't have coverage. Eventually, she found a charity program to help her get treatment, including for her prediabetes. She said she intends to enroll in the new state plan.
"I'm very thankful for the new program," she said through a translator who works for the DuPage Health Coalition, a nonprofit that coordinates charity care for the uninsured in DuPage County, the state's second-most populous. "I know it will help a lot of people like me."
Healthy Illinois pushed state lawmakers to offer health benefits to all low-income immigrants. But the legislature opted instead for a smaller program that covers people 65 and older who are undocumented or have been legal permanent residents, also known as green card holders, for less than five years. (These groups don't typically qualify for government health insurance.) Participants must have an income at or below the federal poverty level, which is $12,670 for an individual or $17,240 for a couple. It covers services like hospital and doctor visits, prescription drugs, and dental and vision care (though not stays in nursing facilities), at no cost to the patient.
The new policy continues a trend of expanding government health coverage to undocumented immigrants.
Illinois was the first state to cover children's care — a handful of states and the District of Columbia have since followed suit — and organ transplants for unauthorized immigrants. In 2019, California became the first to offer public coverage to adults in the country illegally when it opened eligibility for its Medi-Cal program to all low-income residents under age 26.
Under federal law, undocumented people are generally not eligible for Medicare, nonemergency Medicaid and the Affordable Care Act's health insurance marketplace. The states that do cover this population get around that by using only state funds.
An estimated 3,986 undocumented seniors live in Illinois, according to a study by Rush University Medical Center and the Chicago demographer group Rob Paral & Associates — but that number is expected to grow to 55,144 by 2030. The report also found that 16% of Illinois immigrants 55 or older live in poverty, compared with 11% of the native-born population.
Given the outgoing Trump administration's crackdown on immigration, some advocates worry that people will be afraid to enroll in the insurance because it could affect their ability to obtain residency or citizenship. Andrea Kovach, senior attorney for healthcare justice at the Shriver Center on Poverty Law in Chicago, said she and others are working to assure immigrants they don't need to worry. Because the new program is state-funded, federal guidance suggests it is not subject to the "public charge" rule designed to keep out immigrants who might end up on public assistance.
"Illinois has a legacy of being a very welcoming state and protecting immigrants' privacy," Kovach said.
The Illinois policy is initially expected to cover 4,200 to 4,600 immigrant seniors, at an approximate cost of $46 million to $50 million a year, according to John Hoffman, a spokesperson for the Illinois Department of Healthcare and Family Services. Most of them would likely be undocumented.
Some Republicans criticized the coverage expansion, saying it was reckless at a time when Illinois' finances are being shredded by the pandemic. The Illinois Republican Party deemed it "free healthcare for illegal immigrants."
But proponents contend that many unauthorized immigrants pay taxes without being eligible for programs like Medicare and Medicaid, and that spending on preventive care saves money in the long run by cutting down on more expensive treatment for emergencies.
State Rep. Delia Ramirez, a Chicago Democrat who helped shepherd the legislation, advocated for a more expansive plan. She was inspired by her uncle, a 64-year-old immigrant who has asthma, diabetes and high blood pressure but no insurance. He has been working in the country for four decades.
She wanted the policy to apply to people 55 and older, since the vast majority of those who are undocumented are not seniors (she noted that a lot of older immigrants — 2.7 million, according to government estimates — obtained legal status under the 1986 federal amnesty law).
The real impact of this plan will likely be felt in years to come. At Esperanza Health Centers, one of Chicago's largest providers of healthcare to immigrants, 31% of patients 65 and older lack coverage, compared with 47% of those 60 to 64, according to Jeffrey McInnes, who oversees patient access there.
Ramirez said her uncle called her after seeing news of the legislation on Spanish-language TV.
"And I said to him, 'Tío, not yet. But when you turn 65, you'll finally have healthcare, if we still can't help you legalize,'" Ramirez recalled, choking up during a recent phone interview.
"So it is a reminder to me that, one, it was a major victory for us and it has meant life or a second chance at life for many people," she said. "But it is also a reminder to me that we still have a long way to go in making healthcare truly a human right in the state and, furthermore, the nation."
As Los Angeles hospitals give record numbers of covid patients oxygen, the systems and equipment needed to deliver the life-sustaining gas are faltering.
It's gotten so bad that Los Angeles County officials are warning paramedics to conserve it. Some hospitals are having to delay releasing patients as they don't have enough oxygen equipment to send home with them.
"Everybody is worried about what's going to happen in the next week or so," said Cathy Chidester, director of the L.A. County Emergency Medical Services Agency.
Oxygen, which makes up 21% of the Earth's air, isn't running short. But covid damages the lungs, and the crush of patients in hot spots such as Los Angeles, the Navajo Nation, El Paso, Texas, and in New York last spring have needed high concentrations of it. That has stressed the infrastructure for delivering the gas to hospitals and their patients.
The strain in those areas is caused by multiple weak links in the pandemic supply chain. In some hospitals that pipe oxygen to patients' rooms, the massive volume of cold liquid oxygen is freezing the equipment needed to deliver it, which can block the system.
"You can completely — literally, completely — shut down the entire hospital supply if that happens," said Rich Branson, a respiratory therapist with the University of Cincinnati and editor-in-chief of the journal Respiratory Care.
There is also pressure on the availability of both the portable cylinders that hold oxygen and the concentrators that pull oxygen from the air. And in some cases, vendors that supply the oxygen have struggled to get enough of the gas to hospitals. Even nasal cannulas, the tubing used to deliver oxygen, are now running low.
"It's been nuts, absolutely nuts," said Esteban Trejo, general manager of Syoxsa, an industrial and medical gas distributor based in El Paso. He provides oxygen to several temporary hospitals set up specifically to treat people with covid.
In November, he said, he was answering calls in the middle of the night from customers worried about oxygen supplies. At one point, when the company's usual supplier fell through, they were hauling oxygen from Houston, more than a 10-hour drive each way.
Branson has been sounding the alarm about logistical limitations on critical care since the SARS pandemic nearly 20 years ago, when he and others surveyed experts about the specific equipment and infrastructure needed during a future pandemic. Oxygen was near the top of the list.
Oxygen as Cold as Neptune
Last spring, New York, New Jersey and Connecticut faced a challenge similar to what is now unfolding in Los Angeles, said Robert Karcher, a vice president of contract services for Acurity, a group purchasing organization that worked with many hospitals during that surge.
To take up less space, oxygen is often stored as a liquid around minus 300 degrees Fahrenheit, about as cold as the surface of Neptune. But as covid patients filling ICUs were given oxygen through ventilators or nasal tubes, some hospitals began to see ice form over the equipment that converts liquid oxygen into a gas.
When a hospital draws more and more liquid oxygen from those tanks, the super-cold liquid can seep further into the vaporizing coils where liquid oxygen turns to gas.
Branson said some ice is normal, but a lot of ice can cause valves on the device to freeze in place. And the ice can restrict airflow in the pipes sending the oxygen into patients' rooms, Karcher said. To combat this, hospitals could switch to a backup vaporizer if they had one, hose down iced vaporizers or move patients to cylinder-delivered oxygen. But that puts additional strain on the hospitals' cylinder oxygen supply, as well as the medical gas supplier, Karcher said.
Hospitals in New York began to panic in the spring because the icing of the vaporizer was much greater than they had seen before, he added. It got so bad, he said, that some hospitals worried they'd have to close their ICUs.
"They thought they were in imminent danger of their tank piping shutting down," he said. "We came pretty close in a couple of our hospitals. It was a rough few weeks."
The strain on Los Angeles healthcare infrastructure could be worse given the now-common treatment of putting patients on oxygen using high-flow nasal cannulas. That requires more of the gas pumped at a higher rate than with ventilators.
"I don't know of any system that is really set to triple patient volumes — or 10 times the oxygen delivery," Chidester said of the L.A. County hospitals. "They're having a hard time keeping up."
The Oxygen Shortage Doom Loop
In and around Los Angeles, the Army Corps of Engineers has so far surveyed 11 hospitals for freezing oxygen pipe issues. The hospitals are a mix of older facilities and smaller suburban hospitals seeing such high demand amid skyrocketing cases in the area, said Mike Petersen, a Corps spokesperson.
One of the worst examples he saw included pipes that looked like a home freezer that had not been defrosted in some time.
The problem gets worse for hospitals that have had to convert regular hospital rooms to intensive care units. ICU pipes are bigger than those leading to other parts of a hospital. When rooms get repurposed as pop-up ICUs, the pipes can simply be too narrow to deliver the oxygen that covid patients need. And so, Chidester said, the hospitals switch to large cylinders of oxygen. But vendors are having a hard time refilling those quickly enough.
Even smaller cylinders and oxygen concentrators are in short supply amid the surge, she said. Those patients who could be sent home with an oxygen cylinder are left stuck in a hospital waiting for one, taking up a much-needed bed.
'Extreme Rurality'
In early December, doctors serving the Navajo Nation said they needed more of everything: the oxygen itself and the equipment to get oxygen to patients both in the hospital and recovering at home.
"We've never reached capacity before — until now," said Dr. Loretta Christensen, chief medical officer for the Navajo Area Indian Health Service, in mid-December. Its hospitals serve a patient population in the southwestern U.S. that's spread across an area bigger than West Virginia.
The buildings are aging, and they aren't built to house a large number of critical patients, said Christensen. As the number of patients on high-flow oxygen climbed, several facilities started to notice their oxygen flow weaken. They thought something was broken, but when engineers took a look, Christensen said, it became clear the system was just not able to provide the amount of high-flow oxygen patients needed.
She said a hospital in Gallup, New Mexico, put in new filters to maximize oxygen flow. After delays from snowy weather, a hospital serving the northern part of the Navajo Nation managed to hook up a second oxygen tank to boost capacity.
But medical facilities in the area are always a little on edge.
"Honestly, we worry about supply a lot out here because — and I call it extreme rurality — you just can't get something tomorrow," said Christensen. "It's not like being in an urban area where you can say, 'Oh, I need this right now.'"
Because of the small size of certain hospitals and the difficulty of getting to some of them, Christensen said, Navajo facilities aren't attractive to big vendors, so they rely on local vendors, which may prove more vulnerable to supply chain hiccups.
Tséhootsooí Medical Center in Fort Defiance, Arizona, has at times had to keep patients in the hospital and transfer incoming patients to other facilities because it couldn't get the oxygen cylinders needed to send recovering patients home.
Tina James-Tafoya, covid incident commander at Fort Defiance Indian Hospital Board, which runs the center, said at-home oxygen is out of the question for some patients. Oxygen concentrators require electricity, which some patients don't have. And for patients who live in hogans, homes often heated with a wood stove, the use of oxygen cylinders is a hazard.
"It's really interesting and eye-opening for me to see that something that seems so simple like oxygen has so many different things tied to it that will hinder it getting to the patient," she said.
Healthcare — and how much it costs — is scary. But you're not alone with this stuff, and knowledge is power. "An Arm and a Leg" is a podcast about these issues, and its second season is co-produced by KHN.
This episode turns the tables: Host Dan Weissmann gets interviewed about what he learned in 2020 and what's ahead for the show — with T.K. Dutes, a radio host and podcast-maker who is also a former nurse, so she knows a thing or two about the healthcare system. She chronicled her career transition in an episode of NPR's "Life Kit."
During their conversation, Dutes shared stories about life before and after health insurance. She coins what could be a new tagline for "An Arm and a Leg": "Where there's money, there'll be scams."
Efforts to contain the spread of the novel coronavirus in the United States have led to drastic changes in the way children and teens learn, play and socialize.
This article was published on Wednesday, January 6, 2021 in Kaiser Health News.
Krissy Williams, 15, had attempted suicide before, but never with pills.
The teen was diagnosed with schizophrenia when she was 9. People with this chronic mental health condition perceive reality differently and often experience hallucinations and delusions. She learned to manage these symptoms with a variety of services offered at home and at school.
But the pandemic upended those lifelines. She lost much of the support offered at school. She also lost regular contact with her peers. Her mother lost access to respite care — which allowed her to take a break.
On a Thursday in October, the isolation and sadness came to a head. As Krissy's mother, Patricia Williams, called a mental crisis hotline for help, she said, Krissy stood on the deck of their Maryland home with a bottle of pain medication in one hand and water in the other.
Before Patricia could react, Krissy placed the pills in her mouth and swallowed.
Efforts to contain the spread of the novel coronavirus in the United States have led to drastic changes in the way children and teens learn, play and socialize. Tens of millions of students are attending school through some form of distance learning. Many extracurricular activities have been canceled. Playgrounds, zoos and other recreational spaces have closed. Kids like Krissy have struggled to cope and the toll is becoming evident.
Government figures show the proportion of children who arrived in emergency departments with mental health issues increased 24% from mid-March through mid-October, compared with the same period in 2019. Among preteens and adolescents, it rose by 31%. Anecdotally, some hospitals said they are seeing more cases of severe depression and suicidal thoughts among children, particularly attempts to overdose.
The increased demand for intensive mental healthcare that has accompanied the pandemic has worsened issues that have long plagued the system. In some hospitals, the number of children unable to immediately get a bed in the psychiatric unit rose. Others reduced the number of beds or closed psychiatric units altogether to reduce the spread of covid-19.
"It's only a matter of time before a tsunami sort of reaches the shore of our service system, and it's going to be overwhelmed with the mental health needs of kids," said Jason Williams, a psychologist and director of operations of the Pediatric Mental Health Institute at Children's Hospital Colorado.
"I think we're just starting to see the tip of the iceberg, to be honest with you."
Before covid, more than 8 million kids between ages 3 and 17 were diagnosed with a mental or behavioral health condition, according to the most recent National Survey of Children's Health. A separate survey from the Centers for Disease Control and Prevention found 1 in 3 high school students in 2019 reported feeling persistently sad and hopeless — a 40% increase from 2009.
The coronavirus pandemic appears to be adding to these difficulties. A review of 80 studies found forced isolation and loneliness among children correlated with an increased risk of depression.
"We're all social beings, but they're [teenagers] at the point in their development where their peers are their reality," said Terrie Andrews, a psychologist and administrator of behavioral health at Wolfson Children's Hospital in Florida. "Their peers are their grounding mechanism."
Children's hospitals in New York, Colorado and Missouri all reported an uptick in the number of patients who thought about or attempted suicide. Clinicians also mentioned spikes in children with severe depression and those with autism who are acting out.
The number of overdose attempts among children has caught the attention of clinicians at two facilities. Andrews from Wolfson Children's said the facility gives out lockboxes for weapons and medication to the public — including parents who come in after children attempted to take their life using medication.
Children's National Hospital in Washington, D.C., also has experienced an uptick, said Dr. Colby Tyson, associate director of inpatient psychiatry. She's seen children's mental health deteriorate due to a likely increase in family conflict — often a consequence of the chaos caused by the pandemic. Without school, connections with peers or employment, families don't have the opportunity to spend time away from one another and regroup, which can add stress to an already tense situation.
"That break is gone," she said.
The higher demand for child mental health services caused by the pandemic has made finding a bed at an inpatient unit more difficult.
Now, some hospitals report running at full capacity and having more children "boarding," or sleeping in emergency departments before being admitted to the psychiatric unit. Among them is the Pediatric Mental Health Institute at Children's Hospital Colorado. Williams said the inpatient unit has been full since March. Some children now wait nearly two days for a bed, up from the eight to 10 hours common before the pandemic.
Cincinnati Children's Hospital Medical Center in Ohio is also running at full capacity, said clinicians, and had several days in which the unit was above capacity and placed kids instead in the emergency department waiting to be admitted. In Florida, Andrews said, up to 25 children have been held on surgical floors at Wolfson Children's while waiting for a spot to open in the inpatient psychiatric unit. Their wait could last as long as five days, she said.
Multiple hospitals said the usual summer slump in child psychiatric admissions was missing last year. "We never saw that during the pandemic," said Andrews. "We stayed completely busy the entire time."
Some facilities have decided to reduce the number of beds available to maintain physical distancing, further constricting supply. Children's National in D.C. cut five beds from its unit to maintain single occupancy in every room, said Dr. Adelaide Robb, division chief of psychiatry and behavioral sciences.
The measures taken to curb the spread of covid have also affected the way hospitalized children receive mental health services. In addition to providers wearing protective equipment, some hospitals like Cincinnati Children's rearranged furniture and placed cues on the floor as reminders to stay 6 feet apart. UPMC Western Psychiatric Hospital in Pittsburgh and other facilities encourage children to keep their masks on by offering rewards like extra computer time. Patients at Children's National now eat in their rooms, a change from when they ate together.
Despite the need for distance, social interaction still represents an important part of mental healthcare for children, clinicians said. Facilities have come up with various ways to do so safely, including creating smaller pods for group therapy. Kids at Cincinnati Children's can play with toys, but only with ones that can be wiped clean afterward. No cards or board games, said Dr. Suzanne Sampang, clinical medical director for child and adolescent psychiatry at the hospital.
"I think what's different about psychiatric treatment is that, really, interaction is the treatment," she said, "just as much as a medication."
The added infection-control precautions pose challenges to forging therapeutic connections. Masks can complicate the ability to read a person's face. Online meetings make it difficult to build trust between a patient and a therapist.
"There's something about the real relationship in person that the best technology can't give to you," said Robb.
For now, Krissy is relying on virtual platforms to receive some of her mental health services. Despite being hospitalized and suffering brain damage due to the overdose, she is now at home and in good spirits. She enjoys geometry, dancing on TikTok and trying to beat her mother at Super Mario Bros. on the Wii. But being away from her friends, she said, has been a hard adjustment.
"When you're used to something," she said, "it's not easy to change everything."
If you have contemplated suicide or someone you know has talked about it, call the National Suicide Prevention Lifeline at 1-800-273-8255, or use the online Lifeline Crisis Chat, both available 24 hours a day, seven days a week.
As I prepared to get my shot in mid-December as part of a covid vaccine trial run by Janssen Pharmaceuticals, I considered the escape routes. Bailing out of the trial was a very real consideration since two other vaccines, made by Moderna and Pfizer-BioNTech, had been deemed safe and effective for emergency approval.
Leaving the trial would be a perfectly sane decision for me or anyone who had volunteered for an ongoing covid experiment. Why risk getting covid-19 if I was given a placebo, a shot with no vaccine in it? The way tests are designed, I might not be told whether I received the vaccine until the clinical trial is over, months from now.
Dropping the placebo arm could also be ethically sound from the company's point of view. Researchers frequently halt trials when they have a product that works — or manifestly doesn't. And the two approved vaccines are 95% effective.
That very real choice for thousands of people offering to join or remain in the ongoing vaccine tests creates a conundrum for science and for society. If trials can't go forward, that could very well have an impact on the world's supply of covid vaccines and eventually on vaccine prices, especially if booster shots are needed in years to come. In markets where there are only two competing drugs, prices can shoot sky-high. If there are four or five on the market, competition usually kicks in to control costs.
In short, the welcome arrival of two covid vaccines deemed safe has uncovered a series of ethical and logistical challenges. And it has governments, companies and scientists scrambling for solutions.
"The world's vaccine experts are saying the longer we can carry out a placebo-controlled trial the better," Matthew Hepburn, who runs the vaccine development arm of Operation Warp Speed, the multibillion-dollar federal program to fight covid-19, told me. "But as a volunteer in the Janssen trial, you can always drop out."
As for the best way to resolve broader problems, "it's a debate in real time," he said.
Generally, there are two aspects to the debate. First, what should be done with placebo recipients of the Moderna and Pfizer trials now that it's clear both shots prevent the disease and appear safe? Second, how can the scores of companies in the United States and overseas that are still testing covid vaccines adapt when there are apparently reliable products already on the market?
The FDA's advisory committee debated the first question during two meetings in December. They heard Stanford University statistician Steven Goodman argue in favor of a "double-blind crossover" modification of the Pfizer and Moderna trials. Everyone who got placebo shots in the trials would now get two doses of the real vaccine, and vice versa. That way everyone would be protected but still "blind" as to when they were properly vaccinated.
Such a rejigger of the current trial would provide more data on the vaccine's safety and durability of protection, although the longer-term comparison of vaccine versus placebo would be lost. It's a marvelous idea in principle, the panelists agreed, but pretty hard to carry out. Neither Moderna nor Pfizer has agreed to it.
Pfizer wants to "unblind" placebo recipients of its vaccine — to reveal they got the saline solution and give them the real thing — once their risk group gets its turn in line for the vaccine. It has already started vaccinating healthcare workers who got the placebo.
Moderna, which has thousands of soon-to-expire leftover doses from its trial, said it intends to unblind its trial and vaccinate all the placebo recipients. In doing so, it would be recognizing the altruistic service the test subjects made to science and society by joining the trial.
Another proposal would split the placebo recipients in the trial into two groups. In one group, everyone would get a single dose of the vaccine. In the other, each would get two doses. This would be a way of testing evidence that emerged during the Pfizer and Moderna trials that a single dose might provide sufficient protection. If that were true, vaccination of the country could happen nearly twice as fast, because there would be twice as many doses of vaccine to go around.
No one knows to what extent the Food and Drug Administration could force the hands of the two companies, which still expect to get full licensure for their vaccines this year. Moderna is considered more amenable to the suggestion since, unlike Pfizer, it got nearly $1 billion in federal funding to develop its vaccine.
Other vaccine developers — including Operation Warp Speed participants Janssen (owned by Johnson & Johnson), AstraZeneca, Novavax, Sanofi and Merck & Co. — are closely watching to see which path is taken.
They are in a race against time — a race that may not end well for those running late in getting their vaccine out. And halting those efforts could hurt billions of people elsewhere in the world whose lives and livelihoods will depend on the arrival of plentiful, cheap vaccines.
One problem is finding willing test subjects. As increasing numbers of Americans are vaccinated, and the virus recedes from our shores, "the fewer the number of people eligible to participate in trials," said Susan Ellenberg, professor of biostatistics at the University of Pennsylvania.
For now, AstraZeneca and Janssen appear well situated. Both have closed enrollment in their U.S. trials and are likely to file within a few months for emergency use authorizations, like those that have allowed Moderna and Pfizer to start vaccinating the public.
Novavax officials last week started their late-stage trial in the U.S. and predict they can get full enrollment before the majority of the U.S. population is vaccinated.
Sanofi and Merck, whose timetables are more drawn out, are more likely to conduct most of their trials overseas.
In theory, drug companies could overcome these hurdles by testing multiple vaccines against one another and against approved vaccines. Dr. Steven Joffe, a University of Pennsylvania bioethicist, proposed in a recent JAMA article that Operation Warp Speed pay for such a trial.
Scientists and policymakers batted around the idea of a single U.S. trial, with multiple vaccine candidates competing against one another and a single placebo arm, during initial discussions last spring about the creation of Operation Warp Speed.
The idea went nowhere in the United States. It was taken up by World Health Organization officials and major biomedical research groups, which have tried to create such a vaccine trial in the rest of the world — with little success thus far.
So, for now, future vaccine trials are somewhat up in the air.
"There's this tension created by getting the first vaccines out there so quickly," said David Wendler, a senior researcher in bioethics at the National Institutes of Health's Clinical Center. "For public health it's good, but it has the potential to undermine our ability to keep going on the research side and really knock out the virus."
Companies, governments and outside funders need to quickly develop consensus on appropriate trial designs and regulatory processes for additional covid vaccines, added Mark Feinberg, president and CEO of the International AIDS Vaccine Initiative.
As for me, I decided I would stay in the Janssen trial. However, the day before I was scheduled to get my injection — real or fake — the research organization running the inoculations called to say I failed to make the cut: J&J had stopped its trial enrollment.
So, I'll buy some new masks and get in line for my vaccine with everyone else.
Ted Howard started taking Truvada a few years ago because he wanted to protect himself against HIV, the virus that causes AIDS. But the daily pill was so pricey he was seriously thinking about giving it up.
Under his insurance plan, the former flight attendant and customer service instructor owed $500 in copayments every month for the drug and an additional $250 every three months for lab work and clinic visits.
Luckily for Howard, his doctor at Las Vegas' Huntridge Family Clinic, which specializes in LGBTQ care, enrolled him in a clinical trial that covered his medication and other costs in full.
"If I hadn't been able to get into the trial, I wouldn't have kept taking PrEP," said Howard, 68, using the shorthand term for "preexposure prophylaxis." Taken daily, these drugs — like Truvada — are more than 90% effective at preventing infection with HIV.
Starting this month, most people with private insurance will no longer have to decide whether they can afford to protect themselves against HIV. Most health plans must begin to cover the drugs then without charging consumers anything out-of-pocket (some plans already began doing so last year).
Drugs in this category — Truvada, Descovy and, newly available, a generic version of Truvada — received an "A" recommendation by the U.S. Preventive Services Task Force. Under the Affordable Care Act, preventive services that receive an "A" or "B" rating by the task force, a group of medical experts in prevention and primary care, must be covered by most private health plans without making members share the cost, usually through copayments or deductibles. Only plans that are grandfathered under the health law are exempt.
The task force recommended PrEP for people at high risk of HIV infection, including men who have sex with men and injection drug users.
In the United States, more than 1 million people live with HIV, and nearly 40,000 new HIV cases are diagnosed every year. Yet fewer than 10% of people who could benefit from PrEP are taking it. One key reason is that out-of-pocket costs can exceed $1,000 annually, according to a study published in the American Journal of Public Health last year. Required periodic blood tests and doctor visits can add hundreds of dollars to the cost of the drug, and it's not clear if insurers are required to pick up all those costs.
"Cost sharing has been a problem," said Michael Crews, policy director at One Colorado, an advocacy group for the LGBTQ community. "It's not just getting on PrEP and taking a pill. It's the lab and clinical services. That's a huge barrier for folks."
Whether you're shopping for a new plan during open enrollment or want to check out what your current plan covers, here are answers to questions you may have about the new preventive coverage requirement.
Q: How can people find out whether their health plan covers PrEP medications without charge?
The plan's list of covered drugs, called a formulary, should spell out which drugs are covered, along with details about which drug tier they fall into. Drugs placed in higher tiers generally have higher cost sharing. That list should be online with the plan documents that give coverage details.
Sorting out coverage and cost sharing can be tricky. Both Truvada and Descovy can also be used to treat HIV, and if they are taken for that purpose, a plan may require members to pay some of the cost. But if the drugs are taken to prevent HIV infection, patients shouldn't owe anything out-of-pocket, no matter which tier they are on.
In a recent analysis of online formularies for plans sold on the ACA marketplaces, Carl Schmid, executive director of the HIV + Hepatitis Policy Institute, found that many plans seemed out of compliance with the requirement to cover PrEP without cost sharing this year.
But representatives for Oscar and Kaiser Permanente, two insurers that were called out in the analysis for lack of compliance, said the drugs are covered without cost sharing in plans nationwide if they are taken to prevent HIV. Schmid later revised his analysis to reflect Oscar's coverage.
Coverage and cost-sharing information needs to be transparent and easy to find, Schmid said.
"I acted like a shopper of insurance, just like any person would do," he said. "Even when the information is correct, [it's so] difficult to find [and there's] no uniformity."
It may be necessary to call the insurer directly to confirm coverage details if information on the website is unclear.
Q: Are all three drugs covered without cost sharing?
Health plans have to cover at least one of the drugs in this category — Descovy and the brand and generic versions of Truvada — without cost sharing. People may have to jump through some hoops to get approval for a specific drug, however. For example, Oscar plans sold in 18 states cover the three PrEP options without cost sharing. The generic version of Truvada doesn't require prior authorization by the insurer. But if someone wants to take the name-brand drug, they have to go through an approval process. Descovy, a newer drug, is available without cost sharing only if people are unable to use Truvada or its generic version because of clinical intolerance or other issues.
Q: What about the lab work and clinical visits that are necessary while taking PrEP? Are those services also covered without cost sharing?
That is the thousand-dollar question. People who are taking drugs to prevent HIV infection need to meet with a clinician and have bloodwork every three months to test for HIV, hepatitis B and sexually transmitted infections, and to check their kidney function.
The task force recommendation doesn't specify whether these services must also be covered without cost sharing, and advocates say federal guidance is necessary to ensure they are free.
"If you've got a high-deductible plan and you've got to meet it before those services are covered, that's going to add up," said Amy Killelea, senior director of health systems and policy at the National Alliance of State & Territorial AIDS Directors. "We're trying to emphasize that it's integral to the intervention itself."
A handful of states have programs that help people cover their out-of-pocket costs for lab and clinical visits, generally based on income.
There is precedent for including free ancillary care as part of a recommended preventive service. After consumers and advocates complained, the Centers for Medicare & Medicaid Services (CMS) clarified that under the ACA removing a polyp during a screening colonoscopy is considered an integral part of the procedure and patients shouldn't be charged for it.
CMS officials declined to clarify whether PrEP services such as lab work and clinical visits are to be covered without cost sharing as part of the preventive service and noted that states generally enforce such insurance requirements. "CMS intends to contact state regulators, as appropriate, to discuss issuer's compliance with the federal requirements and whether issuers need further guidance on which services associated with PrEP must be covered without cost sharing," the agency said in a statement.
Q: What if someone runs into roadblocks getting a plan to cover PrEP or related services without cost sharing?
If an insurer charges for the medication or a follow-up visit, people may have to go through an appeals process to fight it.
"They'd have to appeal to the insurance company and then to the state if they don't succeed," said Nadeen Israel, vice president of policy and advocacy at the AIDS Foundation of Chicago. "Most people don't know to do that."
Q: Are uninsured people also protected by this new cost-sharing change for PrEP?
Unfortunately, no. The ACA requirement to cover recommended preventive services without charging patients applies only to private insurance plans. People without insurance don't benefit. Gilead, which makes both Truvada and Descovy, has a patient assistance program for the uninsured.
Last spring, New Jersey emergency room nurse Maritza Beniquez saw "wave after wave" of sick patients, each wearing a look of fear that grew increasingly familiar as the weeks wore on.
Soon, it was her colleagues at Newark's University Hospital — the nurses, techs and doctors with whom she had been working side by side — who turned up in the ER, themselves struggling to breathe. "So many of our own co-workers got sick, especially toward the beginning; it literally decimated our staff," she said.
By the end of June, 11 of Beniquez's colleagues were dead. Like the patients they had been treating, most were Black and Latino.
"We were disproportionately affected because of the way that Blacks and Latinos in this country have been disproportionately affected across every [part of] our lives — from schools to jobs to homes," she said.
Now Beniquez feels like a vanguard of another kind. On Dec. 14, she became the first person in New Jersey to receive the coronavirus vaccine — and was one of many medical workers of color featured prominently next to headlines heralding the vaccine's arrival at U.S. hospitals.
It was a joyous occasion, one that kindled the possibility of again seeing her parents and her 96-year-old grandmother, who live in Puerto Rico. But those nationally broadcast images were also a reminder of those for whom the vaccine came too late.
Covid-19 has taken an outsize toll on Black and Hispanic Americans. And those disparities extend to the medical workers who have intubated them, cleaned their bedsheets and held their hands in their final days, a KHN/Guardian investigation has found. People of color account for about 65% of fatalities in cases in which there is race and ethnicity data.
One recent study found healthcare workers of color were more than twice as likely as their white counterparts to test positive for the virus. They were more likely to treat patients diagnosed with covid, more likely to work in nursing homes — major coronavirus hotbeds — and more likely to cite an inadequate supply of personal protective equipment, according to the report.
In a national sample of 100 cases gathered by KHN/The Guardian in which a healthcare worker expressed concerns over insufficient PPE before they died of covid, three-quarters of the victims were identified as Black, Hispanic, Native American or Asian.
"Black healthcare workers are more likely to want to go into public-sector care where they know that they will disproportionately treat communities of color," said Adia Wingfield, a sociologist at Washington University in St. Louis who has studied racial inequality in the healthcare industry. "But they also are more likely to be attuned to the particular needs and challenges that communities of color may have," she said.
Not only do many Black healthcare staffers work in lower-resourced health centers, she said, they are also more likely to suffer from many of the same co-morbidities found in the general Black population, a legacy of systemic inequities.
And they may fall victim to lower standards of care. Dr. Susan Moore, a 52-year-old Black pediatrician in Indiana, was hospitalized with covid in November and, according to a video posted to her Facebook account, had to ask repeatedly for tests, remdesivir and pain medication. She said her white doctor dismissed her complaints of pain and she was discharged, only to be admitted to another hospital 12 hours later.
Numerous studies have found Black Americans often receive worse medical care than their white counterparts: In March, a Boston biotech firm published an analysis showing physicians were less likely to refer symptomatic Black patients for coronavirus tests than symptomatic whites. Doctors are also less likely to prescribe painkillers to Black patients.
"If I was white, I wouldn't have to go through that," Moore said in the video posted from her hospital bed. "This is how Black people get killed, when you send them home, and they don't know how to fight for themselves." She died on Dec. 20 of covid complications, her son Henry Muhammad told news outlets.
Along with people of color, immigrant health workers have suffered disproportionate losses to covid-19. More than one-third of healthcare workers to die of covid in the U.S. were born abroad, from the Philippines to Haiti, Nigeria and Mexico, according to a KHN/Guardian analysis of cases for which there is data. They account for 20% of healthcare workers in the U.S. overall.
Dr. Ramon Tallaj, a physician and chairman of Somos, a nonprofit network of healthcare providers in New York, said immigrant doctors and nurses often see patients from their own communities — and many working-class, immigrant communities have been devastated by covid.
"Our community is essential workers. They had to go to work at the beginning of the pandemic, and when they got sick, they would come and see the doctor in the community," he said. Twelve doctors and nurses in the Somos network have died of covid, he said.
Dr. Eriberto Lozada was an 83-year-old family physician in Long Island, New York. He was still seeing patients out of his practice when cases began to climb last spring. Originally from the Philippines, a country with a history of sending skilled medical workers to the United States, he was proud to be a doctor and "proud to have been an immigrant who made good," his son James Lozada said.
Lozada's family members remember him as strict and strong-willed — they affectionately called him "the king." He instilled in his children the importance of a good education. He died in April.
Two of his four sons, John and James Lozada, are doctors. Both were vaccinated last month. Considering all they had been through, John said, it was a "bittersweet" occasion. But he thought it was important for another reason — to set an example for his patients.
The inequities in covid infections and deaths risk fueling distrust in the vaccine. In a recent Pew study, around 42% of Black respondents said they would "definitely or probably" get the vaccine compared with 60% of the general population.
This makes sense to Patricia Gardner, a Black, Jamaican-born nursing manager at Hackensack University Medical Center in New Jersey who has been infected with the coronavirus along with family members and colleagues. "A lot of what I hear is, 'How is it that we weren't the first to get the care, but now we're the first to get vaccinated?'" she said.
Like Beniquez, the nurse in Newark, she was vaccinated on Dec. 14. "For me to step up to say, 'I want to be in the first group' — I'm hoping that sends a message," she said.
Beniquez said she felt the weight of that responsibility when she signed on to be the first person in her state to receive the vaccine. Many of her patients have expressed skepticism over the vaccine, fueled, she said, by a health system that has failed them for years.
"We remember the Tuskegee trials. We remember the 'appendectomies'" — reports that women were forcibly sterilized in a U.S. Immigration and Customs Enforcement detention center in Georgia. "These are things that have happened to this community to the Black and Latino communities over the last century. As a healthcare worker, I have to recognize that their fears are legitimate and explain 'This is not that,'" she said.
Beniquez said her joy and relief over receiving the vaccine are tempered by the reality of rising cases in the ER. The adrenaline she and her colleagues felt last spring is gone, replaced by fatigue and wariness of the months ahead.
Her hospital placed 11 trees in the lobby, one for each employee who has died of covid; they have been adorned with remembrances and gifts from their colleagues.
There is one for Kim King-Smith, 53, the friendly EKG technician, who visited friends of friends or family whenever they ended up in the hospital.
One for Danilo Bolima, 54, the nurse from the Philippines who became a professor and was the head of patient care services.
One for Obinna Chibueze Eke, 42, the Nigerian nursing assistant, who asked friends and family to pray for him when he was hospitalized with covid.
"Each day, we remember our fallen colleagues and friends as the heroes who helped keep us going throughout this pandemic and beyond," hospital president and CEO Dr. Shereef Elnahal said in a statement. "We can never forget their contributions and their collective passion for this community, and each other."
Just outside the building, stands a 12th tree. "It's going to be for whoever else we lose in this battle," Beniquez said.
This story is part of "Lost on the Frontline," an ongoing project from The Guardian and Kaiser Health News that aims to document the lives of healthcare workers in the U.S. who die from COVID-19, and to investigate why so many are victims of the disease. If you have a colleague or loved one we should include, please share their story.
The move is part of a larger push by the Trump administration to use price transparency to curtail prices and create better-informed consumers. Yet there is disagreement on whether it will do so.
This article was published on Tuesday, January 5, 2021 in Kaiser Health News.
Hospitals face the new year with new requirements to post price information they have long sought to obscure: the actual prices negotiated with insurers and the discounts they offer their cash-paying customers.
The move is part of a larger push by the Trump administration to use price transparency to curtail prices and create better-informed consumers. Yet there is disagreement on whether it will do so.
As of Jan. 1, facilities must publicly post on their websites prices for every service, drug and supply they provide. Next year, under a separate rule, health insurers must take similar steps. A related effort to force drugmakers to list their prices in advertisements was struck down by the courts.
With the new hospital rule, consumers should be able to see the tremendous variation in prices for the exact same care among hospitals and get an estimate of what they will be charged for care — before they seek it.
The new data requirements go well beyond the previous rule of requiring hospitals to post their "chargemasters," hospital-generated list prices that bear little relation to what it costs a hospital to provide care and that few consumers or insurers actually pay.
Instead, under the new rule put forward by the Trump administration, "these are the real prices in health care," said Cynthia Fisher, founder and chairman of Patient Rights Advocate, a group that promotes price transparency.
Here's what consumers should know:
What's the Scope of the Intel?
Each hospital must post publicly online — and in a machine-readable format easy to process by computers — several prices for every item and service they provide: gross charges; the actual, and most likely far lower, prices they've negotiated with insurers, including de-identified minimum and maximum negotiated charges; and the cash price they offer patients who are uninsured or not using their insurance.
In addition, each hospital must make available, in a "consumer-friendly format," the specific costs for 300 common and "shoppable" services, such as having a baby, getting a joint replacement, having a hernia repair or undergoing a diagnostic brain scan.
Those 300 bundles of procedures and services must total all costs involved — from the hardware used to the operating room time, to drugs given and the fees of hospital-employed physicians — so patients won't have to attempt the nearly impossible job of figuring it out themselves.
Hospitals can mostly select which services fall into this category, although the federal government has dictated 70 that must be listed — including certain surgeries, diagnostic tests, imaging scans, new patient visits and psychotherapy sessions.
Will Prices Be Exact?
No. At best, these are ballpark figures.
Other factors influence consumers' costs, like the type of insurance plan a patient has, the size and remaining amount of the annual deductible, and the complexity of the medical problem.
An estimate on a surgery, for example, might prove inexact. If all goes as expected, the price quoted likely will be close. But unexpected complications could arise, adding to the cost.
"You'll get the average price, but you are not average," said Gerard Anderson, a professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health who studies hospital pricing.
Tools to help consumers determine in advance the amount of deductible they'll owe are already available from many insurers. And experts expect the additional information being made available this month will prompt entrepreneurs to create their own apps or services to help consumers analyze the price data.
For now, though, the hospital requirements are a worthy start, say experts.
"It's very good news for consumers," said George Nation, a professor of law and business at Lehigh University who studies hospital pricing. "Individuals will be able to get price information, although how much they are going to use it will remain to be seen."
Will Consumers Use This Info? Who Else Might?
Zack Cooper, an associate professor of public health and economics at Yale, doubts that the data alone will make much of a difference for most consumers.
"It's not likely that my neighbor — or me, for that matter — will go on and look at prices and, therefore, dramatically change decisions about where to get care," he said.
Some cost information is already made available by insurers to their enrollees, particularly out-of-pocket costs for elective services, "but most people don't consult it," he added.
That could be because many consumers carry types of insurance in which they pay flat-dollar copayments for such things as doctor visits, drugs or hospital stays that have no correlation to the underlying charges.
Still, the information may be of great interest to the uninsured and to the increasing number of Americans with high-deductible plans, in which they are responsible for hundreds or even thousands of dollars in costs annually before the insurer begins picking up the bulk of the cost.
For them, the negotiated rate and cash discount information may prove more useful, said Nation at Lehigh.
"If I have a $10,000 deductible plan and it's December and I'm not close to meeting that, I may go to a hospital and try to get the cash price," said Nation.
Employers, however, may have a keen interest in the new data, said James Gelfand, senior vice president at the ERISA Industry Committee, which lobbies on behalf of large employers that offer health insurance to their workers. They'll want to know how much they are paying each hospital compared with others in the area and how well their insurers stack up in negotiating rates, he said.
For some employers, he said, it could be eye-opening to see how hospitals cross-subsidize by charging exorbitant amounts for some things and minimal amounts for others.
"The rule puts that all into the light," said Gelfand. "When an employer sees these ridiculous prices, for the first time they will have the ability to say no." That could mean rejecting specific prices or the hospital entirely, cutting it out of the employer plan's insurance network. But, typically, employers can't or won't limit workers' choices by outright cutting a hospital from an insurance network.
More likely, they may use the information to create financial incentives to use the lowest-cost facilities, said Anderson at Johns Hopkins.
"If I'm an employer, I'll look at three hospitals in my area and say, 'I'll pay the price for the lowest one. If you want to go to one of the other two, you can pay the difference,'" said Anderson.
Will Price Transparency Reduce Overall Health Spending?
Revealing actual negotiated prices, as this rule requires, may push the more expensive hospitals in an area to reduce prices in future bargaining talks with insurers or employers, potentially lowering health spending in those regions.
It could also go the other way, with lower-cost hospitals demanding a raise, driving up spending.
Bottom line: Price transparency can help, but the market power of the various players might matter more.
In some places, where there may be one dominant hospital, even employers "who know they are getting ripped off" may not feel they can cut out a big, brand-name facility from their networks, no matter the price, said Anderson.
Is the Rule Change a Done Deal?
The hospital industry went to court, arguing that parts of the rule go too far, violating their First Amendment rights and also unfairly forcing hospitals to disclose trade secrets. That information, the industry said, can then be used against them in negotiations with insurers and employers.
But the U.S. District Court for the District of Columbia disagreed with the hospitals and upheld the rule, prompting an appeal by the industry. On Dec. 29, the U.S. Court of Appeals for the District of Columbia affirmed that lower-court decision and did not block the rule.
In a written statement last week, the American Hospital Association's general counsel cited "disappointment" with the ruling and said the organization is "reviewing the decision carefully to determine next steps."
Apart from the litigation, the American Hospital Association plans to talk with the incoming Biden administration "to try to persuade them there are some elements to this rule and the insurer rule that are tricky," said Tom Nickels, an executive vice president of the trade group. "We want to be of help to consumers, but is it really in people's best interest to provide privately negotiated rates?"
Fisher thinks so: "Hospitals are fighting this because they want to keep their negotiated deals with insurers secret," she said. "What these rules do is give the American consumer the power of being informed."
Sharon Clark is able to get her life-sustaining cancer drug, Pomalyst — priced at more than $18,000 for a 28-day supply — only because of the generosity of patient assistance foundations.
Clark, 57, a former insurance agent who lives in Bixby, Oklahoma, had to stop working in 2015 and go on Social Security disability and Medicare after being diagnosed with multiple myeloma, a blood cancer. Without the foundation grants, mostly financed by the drugmakers, she couldn't afford the nearly $1,000 a month it would cost her for the drug, since her Medicare Part D drug plan requires her to pay 5% of the list price.
Every year, however, Clark has to find new grants to cover her expensive cancer drug.
"It's shameful that people should have to scramble to find funding for medical care," she said. "I count my blessings, because other patients have stories that are a lot worse than mine."
Many Americans with cancer or other serious medical conditions face similar prescription drug ordeals. It's often worse, however, for Medicare patients. Unlike private health insurance, Part D drug plans have no cap on patients' 5% coinsurance costs once they hit $6,550 in drug spending this year (rising from $6,350 in 2020), except for very low-income beneficiaries.
President-elect Joe Biden favors a cap, and Democrats and Republicans in Congress have proposed annual limits ranging from $2,000 to $3,100. But there's disagreement about how to pay for that cost cap. Drug companies and insurers, which support the concept, want someone else to bear the financial burden.
That forces patients to rely on the financial assistance programs. These arrangements, however, do nothing to reduce prices. In fact, they help drive up America's uniquely high drug spending by encouraging doctors and patients to use the priciest medications when cheaper alternatives may be available.
Growing Expense of Specialty, Cancer Medicines
Nearly 70% of seniors want Congress to pass an annual limit on out-of-pocket drug spending for Medicare beneficiaries, according to a KFF survey in 2019. (KHN is an editorially independent program of KFF.)
The affordability problem is worsened by soaring list prices for many specialty drugs used to treat cancer and other serious diseases. The out-of-pocket cost for Medicare and private insurance patients is often set as a percentage of the list price, as opposed to the lower rate negotiated by insurers.
For instance, prices for 54 orally administered cancer drugs shot up 40% from 2010 to 2018, averaging $167,904 for one year of treatment, according to a 2019 JAMA study. Bristol Myers Squibb, the manufacturer of Clark's drug, Pomalyst, has raised the price 75% since it was approved in 2013, to about $237,000 a year. The company believes "pricing should be put in the context of the value, or benefit, the medicine delivers to patients, healthcare systems and society overall," a spokesperson for Bristol Myers Squibb said via email.
As a result of rising prices, 1 million of the 46.5 million Part D drug plan enrollees spend above the program's catastrophic coverage threshold and face $3,200 in average annual out-of-pocket costs, according to KFF. The hit is particularly heavy on cancer patients. In 2019, Part D enrollees' average out-of-pocket cost for 11 orally administered cancer drugs was $10,470, according to the JAMA study.
The median annual income for Medicare beneficiaries is $26,000.
Medicare patients face modest out-of-pocket costs if their drugs are administered in the hospital or a doctor's office and they have a Medigap or Medicare Advantage plan, which caps those expenses.
But during the past several years, dozens of effective drugs for cancer and other serious conditions have become available in oral form at the pharmacy. That means Medicare patients increasingly pay the Part D out-of-pocket costs with no set maximum.
"With the high cost of drugs today, that 5% can be a third or more of a patient's Social Security check," said Brian Connell, federal affairs director for the Leukemia & Lymphoma Society.
This has forced some older Americans to keep working, rather than retiring and going on Medicare, because their employer plan covers more of their drug costs. That way, they also can keep receiving financial help directly from drugmakers to pay for the costs not covered by their private plan, which isn't allowed by Medicare.
'This Is a Little Nuts'
All this has caused financial and emotional turmoil for people who face a life-threatening disease.
Marilyn Rose, who was diagnosed with chronic myeloid leukemia three years ago, until recently was paying nothing out-of-pocket for her cancer drug, Sprycel, which has a list price of $176,500 a year. That's because Bristol Myers Squibb, the manufacturer, paid her insurance deductible and copays for the drug.
But the self-employed artist and designer, who lives in West Caldwell, New Jersey, recently turned 65 and went on Medicare. The Part D plan offering the best deal on Sprycel charges more than $10,000 a year in coinsurance for the drug.
Rose asked her oncologist if she could switch to an alternative medication, Gleevec, for which she'd pay just $445 a year. But she ultimately decided to stick with Sprycel, which her doctor said is a longer-lasting treatment. She hopes to qualify for financial aid from a foundation to cover the coinsurance but won't know until sometime this month.
"It's just strange you have to make a decision about your treatment based on your finances rather than what's the right drug for you," she said. "I always thought that when I get to Medicare age I'll be able to breathe a sigh of relief. This is a little nuts."
Given the sticker shock, many other patients choose not to fill a needed prescription, or delay filling it. Nearly half of patients who face a price of $2,000 or more for a cancer drug walk away from the pharmacy without it, according to a 2017 study. Fewer than half of Medicare patients with blood cancer received treatment within 90 days of their diagnosis, according to a 2019 study commissioned by the Leukemia & Lymphoma Society.
"If I didn't do really well at scrounging free drugs and getting copay foundations to work with us, my patients wouldn't get the drug, which is awful," said Dr. Barbara McAneny, an oncologist in Albuquerque, New Mexico, and past president of the American Medical Association. "Patients would just say, 'I can't afford it. I'll just die.'"
The high drug prices and coverage gaps have forced many patients to rely on complicated financial assistance programs offered by drug companies and foundations. Under federal rules, the foundations can help Medicare patients as long as they pay for drugs made by all manufacturers, not just by the company funding the foundation.
But Daniel Klein, CEO of the PAN Foundation, which provides drug copay assistance to more than 100,000 people a year, said there are more patients in need than his foundation and others like it can help.
"If you are a normal consumer, you don't know much about any of this until you get sick and all of a sudden you find out you can't afford your medication," he said. Patients are lucky, he added, if their doctor knows how to navigate the charitable assistance maze.
Yet many don't. Daniel Sherman, who trains hospital staff members to navigate financial issues for patients, estimates that fewer than 5% of U.S. cancer centers have experts on staff to help patients with problems paying for their care.
Sharon Clark, who struggles to cover her cancer drugs, works with the Leukemia & Lymphoma Society counseling other patients on how to access helping resources. "People tell me they haven't started treatment because they don't have money to pay," she said. "No one in this country should have to choose between housing, food or medicine. It should never be that way, never."