One November night in a Missouri prison, Charles Graham woke his cellmate of more than a dozen years, Frank Flanders, saying he couldn't breathe. Flanders pressed the call button. No one answered, so he kicked the door until a guard came.
Flanders, who recalled the incident during a phone interview, said he helped Graham, 61, get into a wheelchair so staff members could take him for a medical exam. Both inmates were then moved into a COVID-19 quarantine unit. In the ensuing days, Flanders noticed the veins in Graham's legs bulging, so he put towels in a crockpot of water and placed hot compresses on his legs. When Graham's oxygen levels dropped dangerously low two days later, prison staff members took him to the hospital.
"That ended up being the last time that I seen him," said Flanders, 45.
Graham died of COVID on Dec. 18, alarming Flanders and other inmates at the Western Missouri Correctional Center in Cameron, about 50 minutes northeast of Kansas City. His death reinforced inmates' concerns about their own safety and the adequacy of medical care at the prison. Such concerns are a major reason Flanders and many other inmates said they are wary of getting vaccinated against COVID-19. Their hesitancy puts them at greater risk of suffering the same fate as Graham.
Inmates pointed to numerous COVID deaths they considered preventable, staffing shortages and guards who don't wear masks. While corrections officials defended their response to COVID, Flanders said he's apprehensive about how the department handles "most everything here recently," which colors how he thinks about the vaccines.
Reluctance to get a COVID vaccine is not unique to Missouri inmates. At a county jail in Massachusetts, nearly 60% of more than 400 people incarcerated said in January they would not agree to be vaccinated. At a federal prison in Connecticut, 212 of the 550 inmates offered the vaccines by early March declined the shots, including some who were medically vulnerable, The Associated Press reported.
The Missouri Department of Corrections said March 12 that more than 4,200 state inmates had received the vaccine out of 8,000 who were eligible because they were at least 65 years old or had certain medical conditions. Officials were still working to vaccinate 1,000 additional eligible inmates who had requested the shots. The department had not begun vaccinating the remaining 15,000 inmates or surveyed them to determine their interest in the vaccines. So far, about 18% of the total prison population has been vaccinated, which roughly tracks with the overall rate in Missouri even though inmates are at higher risk for COVID than Missourians generally and should be easier to vaccinate given they are already in one place together.
Missouri placed the majority of inmates in its lowest vaccine priority group. It is one of 14 states to either do that or not specify when they will offer the vaccines to inmates, according to the COVID Prison Project, which tracks data on the virus in correctional facilities.
Another is Colorado, where Democratic Gov. Jared Polis moved inmates to the back of the vaccine line amid public pressure. The emergence of a more contagious variant of the virus at one prison, however, forced officials to adjust their plans and instead start vaccinating all inmates at that facility.
Lauren Brinkley-Rubinstein, prison project co-founder and professor of social medicine at the University of North Carolina, said that disregarding health officials' recommendation to prioritize people living in tight quarters might make inmates less trustful of prison staff "when they come around and say, 'Hey, it's finally your turn. Let me inject you with this.'"
States cannot mandate that inmates take the vaccines. But Missouri officials have tried to encourage them by distributing safety information about it, including a video debunking myths featuring a scientist from Washington University in St. Louis.
But persuasion is proving difficult at Western Missouri, given inmates' longtime distrust of prison management. Flanders, Graham and others were transferred there from neighboring Crossroads Correctional Center following a 2018 riot that caused an estimated $1.3 million in damage and led to its closure. Inmates were angry that staff shortages had reduced time for recreation and other programming.
Officials acknowledge that staff shortages have persisted through the pandemic. "Corrections is not the most popular place to work right now," Missouri corrections director Anne Precythe said at an early March NAACP town hall on COVID and prisons.
Flanders, who is serving a life sentence for first-degree robbery, said the prison didn't have enough nursing staffers to check on him during a bout with mild COVID in November. He said other sick inmates also didn't receive appropriate medical attention. Karen Pojmann, a corrections department spokesperson, said she could not comment on specific offenders' medical issues.
Tim Cutt, executive director of the Missouri Corrections Officers Association, said he's seen no evidence that Western Missouri even had a plan to contain COVID. "They were quarantining for a while," he said, "but it was a haphazard attempt."
Also fueling skepticism of prison healthcare, inmates said, is the failure of many staff members to follow the corrections department's mask mandate. Byron East, who is serving a life sentence for murder at South Central Correctional Center, two hours southwest of St. Louis, said in a phone interview that he has begged officers — many of whom live in conservative, rural areas where masks are less common — to wear face coverings.
"As an employee, your job is to protect, and we are not able to protect ourselves," said East, 53. "You can catch something and then come in here and spread it to us."
Amy Breihan, co-director of the Missouri office of the Roderick & Solange MacArthur Justice Center, a nonprofit civil rights law firm, said she didn't see a single officer wearing a mask on Feb. 10 when she visited a correctional facility in Bonne Terre, Missouri.
Corrections Department Deputy Director Matt Sturm confirmed Breihan's account at the NAACP town hall and said it has been addressed. He said the department expects staff members in all prisons to wear masks while inside when they can't stay 6 feet apart from others.
"Right from the beginning, the Department of Corrections in Missouri has taken COVID extremely serious," Sturm said. The department deployed "everything we could get our hands on to help either prevent or contain COVID," including equipment for ventilation and disinfection.
Still, Missouri has reported at least 5,500 COVID cases and 48 deaths among inmates at the state's adult correctional institutions during the pandemic. The department doesn't break down COVID deaths by prison, but data from the advocacy group Missouri Prison Reform showed Western Missouri had 21 total deaths from COVID or other causes last year, more than any other state prison even though its population isn't the largest. Statistics on deaths in the previous year were not immediately available.
An automatic email reply from Eve Hutcherson, a former spokesperson for Corizon Health, which manages healthcare in Missouri prisons, directed a reporter to Steve Tomlin, senior vice president of business development, but he didn't respond to questions. The company, one of the country's largest for-profit correctional healthcare providers, faced more than 1,300 lawsuits over five years, according to a 2015 report from the financial research firm PrivCo. In Arizona, Corizon paid a $1.4 million fine for failing to comply with a 2014 settlement to improve inadequate healthcare for inmates.
Despite concerns about prison healthcare, however, some inmates have agreed to get the shot. East, who is Black, said he initially decided against it because he didn't trust prison health and thought about the legacy of the Tuskegee experiments from 1932 to 1972, when researchers withheld treatment for Black men infected with syphilis. But he changed his mind after reading about how safe the vaccines are.
Flanders, meanwhile, is still weighing whether to get vaccinated as he mourns the death of his longtime cellmate Graham, a convicted murderer whom he considered a friend and father figure.
Flanders' mother, Penny Kopp, said Graham helped Flanders manage his finances and kept him from gambling and getting involved with "inmates who are troublemakers." Kopp, a former corrections officer in Indiana and Colorado, said she understands the challenges of working in a prison but wonders if enough was done to save her son's cellmate.
Flanders said getting the shot would mean putting himself at the mercy of prison staffers, as Graham did — and that's something he's not ready to do.
A treatment, known as "smell training," is clinically proven to be effective in adults. However, there's virtually no data on whether the method will work in children.
This article was published on Thursday, March 25, 2021 in Kaiser Health News.
Doctors at Children's Hospital Colorado and Seattle Children's Hospital will use scents like these to treat children who lost their sense of smell to COVID-19. Parents will attend clinics and go home with a set of essential oils for their child to sniff twice a day for three months. Clinicians will check their progress monthly.
The Smell Disturbance Clinic at Children's Hospital Colorado was approved to open March 10. So far, five children have been screened and one enrolled. Seattle Children's expects to open its program this spring.
The treatment, known as "smell training," is clinically proven to be effective in adults. However, clinicians said, there's virtually no data on whether the method will work in children.
Although children are much less likely to develop COVID or suffer its consequences than adults, the number of pediatric patients has steadily grown. More cases means more kids are demonstrating lingering symptoms known as "long COVID." Among these complaints is loss of smell.
The link between coronavirus infections and smell disturbances in adults is well documented in both patients with short-term disease and so-called long haulers. However, scientists are still unsure how many people develop this complication or how the virus triggers it. Different research teams have found clues that could explain the phenomenon, including inflammation and disruptions in the structures that support the cells responsible for olfactory function.
But scant research has focused on smell disturbances in children, said Dr. John McClay, a pediatric ear, nose and throat surgeon in Frisco, Texas — let alone those caused by COVID. That's because children seldom develop these issues, he said, and the novel coronavirus has been just that — novel.
"Everything's so new," said McClay, who is also the chair of the American Academy of Pediatrics education committee on otolaryngology. "You can't really hang your hat on anything."
It Works for Adults. Will It Work for Kids?
One intervention for adults who lose their sense of smell — whether as a result of a neurological disorder like Alzheimer's, a tumor blocking nasal airflow or any number of viruses, including COVID — has been olfactory training.
It generally works like this: Doctors test a patient's sense of smell to establish a baseline. Then, adults are given a set of essential oils with certain scents and instructions on how to train their nose at home. Patients usually sniff each oil twice a day for several weeks to months. At the end of the training, doctors retest them to gauge whether they improved.
Dr. Yolanda Holler-Managan, a pediatric neurologist and assistant professor of pediatrics at Northwestern University Feinberg School of Medicine, said she doesn't see why this method wouldn't work for children, too. In both age groups, the olfactory nerve can regenerate every six to eight weeks. As the nerve heals, training can help strengthen the sense of smell.
"It's like helping a muscle get stronger again," she said.
Late last spring, when doctors started discovering smell and taste issues in adults with COVID, Dr. Kenny Chan, the pediatric ear, nose and throat specialist overseeing the new clinic in Colorado, realized this could be an issue with kids, too.
Dr. Kathleen Sie, chief of Otolaryngology Head and Neck Surgery at Seattle Children's Hospital, became aware of the problem when she received an email from someone at a local urgent care center. After reading the message, Sie called Chan to talk about it. The conversation snowballed into her spearheading a smell-training clinic at her facility.
Both clinicians must contend with the challenges "smell training" may pose to children. For starters, some young patients may not know how to identify certain scents used in adult tests — spices such as cloves, for instance — because they're too young to have a frame of reference, said McClay.
As a workaround, Chan substituted some scents for odors that might be more recognizable.
Finding children who are experiencing smell disturbances is also tricky. Many with COVID are asymptomatic, and others may be too young to verbalize what they are experiencing or recognize what they are missing.
Nonetheless, McClay said, the potential benefit of the simple treatment outweighs the cost and challenges of setting it up for children. Adult smell-training kits sell for less than $50.
"There is zero data out there that says that this does anything," said Chan. "But if no one cares to look at this question, then this question is not going to be solved."
For months, journalists, politicians and health officials — including New York Gov. Andrew Cuomo and Dr. Anthony Fauci — have invoked the infamous Tuskegee syphilis study to explain why Black Americans are more hesitant than white Americans to get the coronavirus vaccine.
"It's 'Oh, Tuskegee, Tuskegee, Tuskegee,' and it's mentioned every single time," said Karen Lincoln, a professor of social work at the University of Southern California and founder of Advocates for African American Elders. "We make these assumptions that it's Tuskegee. We don't ask people."
When she asks Black seniors in Los Angeles about the vaccine, Tuskegee rarely comes up. People in the community talk about contemporary racism and barriers to healthcare, she said, while it seems to be mainly academics and officials who are preoccupied with the history of Tuskegee.
"It's a scapegoat," Lincoln said. "It's an excuse. If you continue to use it as a way of explaining why many African Americans are hesitant, it almost absolves you of having to learn more, do more, involve other people — admit that racism is actually a thing today."
It's the health inequities of today that Maxine Toler, 72, hears about when she asks her friends and neighbors in Los Angeles what they think about the vaccine. As president of her city's senior advocacy council and her neighborhood block club, Toler said she and most of the other Black seniors she talks with want the vaccine but are having trouble getting it. And that alone sows mistrust, she said.
Toler said the Black people she knows who don't want the vaccine have very modern reasons for not wanting it. They talk about religious beliefs, safety concerns or a distrust of former U.S. President Donald Trump and his contentious relationship with science. Only a handful mention Tuskegee, she said, and when they do, they're fuzzy on the details of what happened during the 40-year study.
"If you ask them 'What was it about?' and 'Why do you feel like it would impact your receiving the vaccine?' they can't even tell you," she said.
Toler knows the details, but she said that history is a distraction from today's effort to get people vaccinated against the coronavirus.
"It's almost the opposite of Tuskegee," she said. "Because they were being denied treatment. And this is like, we're pushing people forward: Go and get this vaccine. We want everybody to be protected from COVID."
Questioning the Modern Uses of the Tuskegee Legacy
The "Tuskegee Study of Untreated Syphilis in the Negro Male" was a government-sponsored, taxpayer-funded study that began in 1932. Some people believe that researchers injected the men with syphilis, but that's not true. Rather, the scientists recruited 399 Black men from Alabama who already had the disease.
Researchers told the men they had come to Tuskegee to cure "bad blood," but never told them they had syphilis. And, the government doctors never intended to cure the men. Even when an effective treatment for syphilis — penicillin — became widely available in the 1940s, the researchers withheld it from the infected men and continued the study for decades, determined to track the disease to its endpoint: autopsy.
By the time the study was exposed and shut down in 1972, 128 of the men involved had died from syphilis or related complications, and 40 of their wives and 19 children had become infected.
Given this horrific history, many scientists assumed Black people would want nothing to do with the medical establishment again, particularly clinical research. Over the next three decades, various books, articles and films repeated this assumption until it became gospel.
"That was a false assumption," said Dr. Rueben Warren, director of the National Center for Bioethics in Research and Healthcare at Tuskegee University in Alabama, and former associate director of minority health at the Centers for Disease Control and Prevention from 1988 to 1997.
A few researchers began to question this assumption at a 1994 bioethics conference, where almost all the speakers seemed to accept it as a given. The doubters asked, what kind of scientific evidence is there to support the notion that Black people would refuse to participate in research because of Tuskegee?
When those researchers did a comprehensive search of the existing literature, they found nothing.
"It was apparently a 'fact' known more in the gut than in the head," wrote lead doubter Dr. Ralph Katz, an epidemiologist at the New York University College of Dentistry.
So Katz formed a research team to look for this evidence. They completed a series of studies over the next 14 years, focused mainly on surveying thousands of people across seven cities, from Baltimore to San Antonio to Tuskegee.Bottom of Form
The conclusions were definitive: While Black people were twice as "wary" of participating in research, compared with white people, they were equally willing to participate when asked. And there was no association between knowledge of Tuskegee and willingness to participate.
"The hesitancy is there, but the refusal is not. And that's an important difference," said Warren, who later joined Katz in editing a book about the research. "Hesitant, yes. But not refusal."
Tuskegee was not the deal breaker everyone thought it was.
These results did not go over well within academic and government research circles, Warren said, as they "indicted and contradicted" the common belief that low minority enrollment in research was the result of Tuskegee.
"That was the excuse that they used," Warren said. "If I don't want to go to the extra energy, resources to include the population, I can simply say they were not interested. They refused."
Now researchers had to confront the shortcomings of their own recruitment methods. Many of them never invited Black people to participate in their studies in the first place. When they did, they often did not try very hard. For example, two studies of cardiovascular disease offered enrollment to more than 2,000 white people, compared with no more than 30 people from minority groups.
"We have a tendency to use Tuskegee as a scapegoat, for us, as researchers, not doing what we need to do to ensure that people are well educated about the benefits of participating in a clinical trial," said B. Lee Green, vice president of diversity at Moffitt Cancer Center in Florida, who worked on the early research debunking the assumptions about Tuskegee's legacy.
"There may be individuals in the community who absolutely remember Tuskegee, and we should not discount that," he said. But hesitancy "is more related to individuals' lived experiences, what people live each and every day."
'It's What Happened to Me Yesterday'
Some of the same presumptions that were made about clinical research are resurfacing today around the coronavirus vaccine. A lot of hesitancy is being confused for refusal, Warren said. And so many of the entrenched structural barriers that limit access to the vaccine in Black communities are not sufficiently addressed.
Tuskegee is once again being used as a scapegoat, said Lincoln, the USC sociologist.
"If you say 'Tuskegee,' then you don't have to acknowledge things like pharmacy deserts, things like poverty and unemployment," she said. "You can just say, 'That happened then … and there's nothing we can do about it.'"
She said the contemporary failures of the healthcare system are more pressing and causing more mistrust than the events of the past.
"It's what happened to me yesterday," she said. "Not what happened in the '50s or '60s, when Tuskegee was actually active."
The seniors she works with complain to her all the time about doctors dismissing their concerns or talking down to them, and nurses answering the hospital call buttons for their white roommates more often than for them.
As a prime example of the unequal treatment Black people receive, they point to the recent Facebook Live video of Dr. Susan Moore. When Moore, a geriatrician and family medicine physician from Indiana, got COVID-19, she filmed herself from her hospital bed, an oxygen tube in her nose. She told the camera that she had to beg her physician to continue her course of remdesivir, the drug that speeds recovery from the disease.
"He said, 'Ah, you don't need it. You're not even short of breath.' I said 'Yes, I am,'" Moore said into the camera. "I put forward and I maintain, if I was white, I wouldn't have to go through that."
Moore died two weeks later.
"She knew what kind of treatment she should be getting and she wasn't getting it," said Toler of L.A., contrasting Moore's treatment with the care Trump received.
"We saw it up close and personal with the president, that he got the best of everything. They cured him in a couple of days, and our people are dying like flies."
Toler and her neighbors said that the same inequity is playing out with the vaccine. Three months into the vaccine rollout, Black people made up about 3% of Californians who had received the vaccination, even though they account for 6.2% of the state's COVID deaths.
The first mass-vaccination sites set up in the Los Angeles area — at Dodger Stadium and at Disneyland — are difficult to get to from Black neighborhoods without a car. And you practically needed a computer science degree to get an early dose, as snagging an online appointment required navigating a confusing interface or constantly refreshing the portal.
It's stories like these, of unequal treatment and barriers to care, that stoke mistrust, Lincoln said. "And the word travels fast when people have negative experiences. They share it."
To address this mistrust will require a paradigm shift, said Warren of Tuskegee University. If you want Black people to trust doctors and trust the vaccine, don't blame them for their distrust, he said. The obligation is on health institutions to first show they are trustworthy: to listen, take responsibility, show accountability and stop making excuses. That, he added, means providing information about the vaccine without being paternalistic and making the vaccine easy to access in Black communities.
"Prove yourself trustworthy and trust will follow," he said.
This story is from a partnership that includes NPR, KQED and KHN.
Dr. Deborah Birx, former top White House coronavirus adviser under the Trump administration, is now an adviser for ActivePure Technology — an air-cleaning company that uses technology banned in California due to health hazards.
This article was published on Wednesday, March 24, 2021 in Kaiser Health News.
The former top White House coronavirus adviser under President Donald Trump, Dr. Deborah Birx, has joined an air-cleaning company that built its business, in part, on technology that is now banned in California due to health hazards.
The company is one of many in a footrace to capture some of the $193 billion in federal funding to schools.
Birx is now chief medical and science adviser of ActivePure Technology, a company that counts 50 million customers since its 1924 start as the Electrolux vacuum company and does nearly $500 million annually in sales. Its marketing includes photos of outer space, a nod to a 1990s breakthrough with technology to remove a gas from NASA spaceships. The company’s ownstudies show that, in its effort to create the “healthiest indoor environments in North America,” it leveraged something less impressive: the disinfecting power of ozone — a molecule considered hazardous and linked to the onset and worsening of asthma.
In an interview with KHN, CEO Joe Urso acknowledged that its air cleaners that emit ozone account for 5% of sales, even though its marketing repeatedly claims “no chemicals or ozone.”
Conflicts between the science and marketing claims of an air purification company are nothing new to academic air quality experts. They warn that the industry — which sells to dental offices, businesses and gyms — is laser-focused on school officials, who are desperate to convince parents and teachers their buildings are safe. Children can be particularly susceptible to the chemical exposure some of these devices potentially create, experts say.
“The concerns you have raised are legitimate” when it comes to other companies’ products, Birx said, noting that as a grandmother she shares concerns about health. But she added that she has full confidence in ActivePure after reviewing records for the Food and Drug Administration’s clearance of a company device.
Schools are getting an infusion of roughly $180 billion in federal money to spend on personal protective equipment, physical barriers, air-cleaning systems and other infrastructure improvements. Previously, they could have used $13 billion of CARES Act funding. Democrats are pushing for $100 billion more that could also be used for school improvements, including air cleaners.
Putting unregulated devices in classrooms is “a giant uncontrolled experiment,” said Jeffrey Siegel, a civil engineering professor at the University of Toronto and a member of its Building Engineering Research Group.
Researchers and the Environmental Protection Agency say the broader industry advertises products that alter molecules in the air to kill germs, without noting that the reactions can form other harmful substances, such as the carcinogen formaldehyde.
Marwa Zaatari, an indoor air quality consultant and a member of the American Society of Heating, Refrigerating and Air-Conditioning Engineers’ epidemic task force, said she has counted more than 125 schools or districts that have already bought air cleaner models the EPA has linked to “potentially harmful byproducts” such as ozone or formaldehyde. She estimated at least $60 million was spent.
Instead, air quality experts say, the best solutions come down to basics: adding more outdoor air, buying portable HEPA filters and installing MERV 13 filters within heating systems. But school boards are often lured by aggressive claims of 99.9% efficiency — based on a test of a filter inside a small cabinet and not a classroom. “Every dollar you use for this equipment is a dollar you remove from doing the right solution,” Zaatari said.
Urso, of ActivePure Technology, said “other companies that I think are making wrongful claims” have brought scrutiny to the industry. But he said his firm’s technology has steadily improved and now emits “gaseous hydrogen peroxide” and other molecules that seek out and destroy viruses, mold and bacteria. He described the technology as active — in contrast to the more passive technology of air filters. A company website says it makes the “safest, fastest and most powerful surface and air-purification technology available.”
Urso added, “I have a great technology that is truthful and it does what I say it does.”
The Centers for Disease Control and Prevention warns specifically against technologies that release hydrogen peroxide that are “being heavily marketed.” The agency says the technology is “emerging” and “consumers are encouraged to exercise caution.”
During a Zoom interview, Birx deferred to ActivePure Medical’s president, Daniel Marsh, and Urso on the science. She focused instead on the need for products that will increase people’s confidence about going maskless indoors.
“Imagine decreasing the number of sick days of your workforce because your air is less contaminated,” Birx said. “There are uses of this technology that transcend the current pandemic.”
Birx was a controversial figure on Trump’s covid response team. She was criticized for standing by quietly as Trump suggested that people could ingest disinfectant to rid themselves of the virus. She has recently spoken out about her discomfort with such statements — while endorsing ActivePure Technology.
Birx said she was attracted to ActivePure because of its commitment to “hard science” in getting its Medical Guardian cleared by the FDA. The process required the company to prove the device was substantially equivalent to an existing device. Records the company submitted to the FDA describe the Medical Guardian as an “ion generator” and “photocatalytic oxidizer” that showed “a high efficacy against … a broad range of viable bioaerosol.”
Birx said she uses a hospital-grade HEPA filter in her home but noted that’s only because she wasn’t aware of the ActivePure technology when she bought it.
When ActivePure Technology, formerly known as Aerus, tells its story, it’s one of seamless progress. Yet its 2009 purchase of the air cleaner company EcoQuest saddled the company with two problematic technologies: one that intentionally generated ozone to clean the air and another that did so incidentally, studies from the subsidiary company show.
The ActivePure companies and subsidiaries made the best of it, though, marketing the technology’s purification powers on the basis of a Kansas State University study of how well the devices disinfected the surface of meat compared with chlorine, which is widely used by meatpackers to kill bacteria.
Meanwhile, California lawmakers were outlawing consumer use of air cleaners that emit more than 50 parts per billion of ozone. They got momentum to regulate the industry with a survey that showed that a small percentage of state residents who used such devices at home had children — considered particularly sensitive to ozone. According to the California legislation, ozone can “permanently damage lung tissue and reduce a person’s breathing ability.”
The CDC also reviewed the ActivePure technology in 2009. At the time, Birx, who served in the agency under three presidents, was directing its global AIDS response.
Agency scientists were evaluating the potential of air cleaners to help clear formaldehyde from Federal Emergency Management Agency trailers deployed after Hurricane Katrina. They knew the devices could potentially swap one hazard — ozone formed by some air cleaners — for the one they were trying to eliminate. So they tested and found that a device from ActiveTek — an Aerus subsidiary — with ActivePure technology emitted 116 parts per billion of ozone. The scientists deemed that level too high for cleaning the trailers.
Birx said the older ozone-emitting devices were first-generation devices. The newer ActivePure devices are third-generation and one is now validated by FDA clearance. That is not the same as FDA approval, which requires proof the device is safe and effective.
Urso said the company’s devices that emit ozone are mostly for commercial use. Although marketing for ActivePure says “no chemicals or ozone,” Urso acknowledged that it still sells a Pure & Clean Plus device that emits ozone and cannot be sold in California.
“It is very confusing,” Urso said, “and it’s confusing because we also match it with [the] ActivePure” logo. The company did not answer questions about five other devices listed for sale on its website, which says they can’t be sold in California.
While current ActivePure marketing also says the technology produces no byproducts, Urso said that reflects results from lab studies, not studies from the environment where they might be used. That includes hundreds of schools that have trusted their technology, the company’s website says. There, experts say, chemicals that could react with air cleaner technology include car exhaust, spray cleaners, paint and glue.
The company markets to preschools as well. Brent Stephens, an indoor air quality expert who leads the civil, architectural and environmental engineering department at the Illinois Institute of Technology, was asked by the director of his own children’s preschool about the Aerus Hydroxyl Blaster.
Aerus had sent the director a sample to test in her home. But Stephens advised against buying one for the preschool, saying that, while the claims of similar machines may sound good, the studies to back them up often were not.
“It’s wild out there,” he wrote in an email. “Consumers need to know how these things perform and if they are subject to unforeseen consequences like generating byproducts from use.”
The only clear path to expanding health insurance remains yet more government subsidies for commercial health plans, which are the most costly form of coverage.
This article was published on Wednesday, March 24, 2021 in Kaiser Health News.
When Democrats pushed through a two-year expansion of the Affordable Care Act in the COVID-relief bill this month, many people celebrated the part that will make health insurance more affordable for more Americans.
But healthcare researchers consider this move a short-term fix for a long-term crisis, one that avoids confronting an uncomfortable truth: The only clear path to expanding health insurance remains yet more government subsidies for commercial health plans, which are the most costly form of coverage.
The reliance on private plans — a hard-fought compromise in the 2010 health law that was designed to win over industry — already costs taxpayers tens of billions of dollars each year, as the federal government picks up a share of the insurance premiums for about 9 million Americans.
The ACA's price tag will now rise higher because of the recently enacted $1.9 trillion COVID relief bill. The legislation will direct some $20 billion more to insurance companies by making larger premium subsidies available to consumers who buy qualified plans.
And if Democrats want to continue the aid beyond 2022, when the relief bill's added assistance runs out, the tab is sure to balloon further.
"The expansion of coverage is the path of least resistance," said Paul Starr, a Princeton University sociologist and leading authority on the history of U.S. healthcare who has termed this dynamic a "health policy trap."
"Insurers don't have much to lose. Hospitals don't have much to lose. Pharmaceutical companies don't have much to lose," Starr observed. "But the result is you end up adding on to an incredibly expensive system."
By next year, taxpayers will shell out more than $8,500 for every American who gets a subsidized health plan through insurance marketplaces created by the ACA, often called Obamacare. That's up an estimated 40% from the cost of the marketplace subsidies in 2020, due to the augmented aid, data from the nonpartisan Congressional Budget Office indicates.
Supporters of the aid package, known as the American Rescue Plan, argue the federal government had to move quickly to help people struggling during the pandemic.
"This is exactly why we pay taxes. We want the federal government to be there when we need it most," said Mila Kofman, who runs the District of Columbia's insurance marketplace. Kofman said the middle of a pandemic was not a time to "wait for the perfect solution."
But the large new government commitment underscores the disparity between the high price of private health insurance and lower-cost government plans such as Medicare and Medicaid.
Acutely aware of this disparity, the crafters of the ACA laid out a second path to provide health insurance for uninsured Americans beside the marketplaces: Medicaid.
The half-century-old government safety net insures about 13 million low-income, working-age adults who gained eligibility for the program through the health law and make too little to qualify for subsidized commercial insurance.
Medicaid coverage is still costly: about $7,000 per person every year, federal data indicates.
But that's about 18% less than what the government will pay to cover people through commercial health plans.
"We knew it would be less expensive than subsidizing people to go to private plans," said former Rep. Henry Waxman, a California Democrat who as chairman of the House Energy and Commerce Committee helped write the Affordable Care Act and has long championed Medicaid.
For patients, Medicaid offered another advantage. Unlike most commercial health insurance, which requires enrollees to pay large deductibles before their coverage kicks in, Medicaid sharply limits how much people must pay for a doctor's visit or a trip to the hospital.
That can have a huge impact on a patient's finances.
Take, for example, a 50-year-old woman living outside Phoenix with a part-time job paying $1,000 a month. With an income that low, the woman could enroll in Arizona's Medicaid program.
If, one day, she slipped on her steps and broke an arm, her medical bills would likely be fully covered, leaving her with no out-of-pocket expenses.
If the same woman were to find a full-time job that pays $4,000 a month but doesn't offer health benefits, she would still be able to get coverage, this time through a commercial health plan on Arizona's insurance marketplace.
Taxpayers would still pick up a portion of the cost of her health plan, in this case about $300 a month, or half the $606 monthly premium for a basic silver-level plan from health insurer Oscar, according to a subsidy calculator from KFF, a health policy nonprofit. The woman would have to pay the rest of the monthly premium.
Unlike Medicaid, however, her Oscar "Silver Saver" plan comes with a $6,200 deductible.
That means that the same broken arm from her fall would likely leave her with medical bills topping $4,700, according to cost estimates from the federal healthcare.gov marketplace.
The main reason commercial health plans cost more and saddle patients with higher medical bills is because they typically pay hospitals, doctors and other medical providers more than public programs such as Medicaid.
Often the price differences are dramatic.
For example, health insurers in the Atlanta area pay primary care physicians $93 on average for a basic patient visit, according to an analysis of 2017 commercial insurance data by the Healthcare Cost Institute, a research nonprofit.
By contrast, Georgia's Medicaid program would pay the same physician seeing a patient covered by the government health plan just $41, according to the state's fee schedule.
"It's much cheaper to deliver health coverage to people through public programs like Medicaid than through private insurance because the prices paid to doctors, hospitals and drug companies are so much less," said Larry Levitt, executive vice president for health policy at KFF.
The price disparity also explains why the healthcare industry, including insurers and providers, for years has fought proposals to create a new government plan, or "public option," that might pay less.
Industry officials frequently argue that hospitals and physicians couldn't stay in business unless they charge higher prices to commercial insurers to offset the low prices paid by government programs.
The Biden administration and congressional Democrats for now skirted a battle over this issue by simply upping subsidies for private health insurers.
There's something for everyone with private health insurance in the American Rescue Plan Act, but determining the best way to benefit may be confusing.
The $1.9 trillion COVID relief law that President Joe Biden signed this month will make coverage significantly more affordable for millions of people who either who have marketplace coverage, are uninsured or have lost their employer coverage. In addition, it will eliminate repayment requirements for premium tax credits. Consumers can begin to see those improvements next month, but they may need to go to healthcare.gov and update their application for the changes to take effect then.
Tuesday afternoon, the Biden administration extended the length of time that people have to enroll in or change federal marketplace plans under a COVID special enrollment period. The three-month extension means people have until Aug. 15 to sign up and review their options.
The new provisions are temporary; none will extend past 2022 unless Congress acts to make them permanent. Many healthcare advocates hope that will happen.
"If Congress can circle back and make these improvements permanent, it will go a long way toward making insurance affordable in this country," said Stan Dorn, director of the National Center for Coverage Innovation at Families USA, a nonpartisan consumer healthcare advocacy organization.
In the meantime, these provisions will help Americans get or keep their health insurance and provide economic stability as the country emerges from the COVID pandemic.
What's new:
Enhanced Premium Subsidies for Marketplace Plans
When: 2021 and 2022
Who benefits: Just about everyone who has coverage through the Affordable Care Act's marketplaces. Premium costs for people eligible for subsidies will shrink by $50 per month on average, according to the federal government, but some people will see much larger savings.
Under the ACA, people with incomes between 100% and 400% of the federal poverty level (from $12,760 to $51,040 for one person or $26,200 to $104,800 for a family of four) were eligible for premium tax credits to reduce their premiums for marketplace coverage.
But under the changes passed in the new law, how much people owe is reduced at every income level and capped at 8.5% overall.
For example, a single person who makes $30,000 annually will pay $85 per month in premiums on average under the new law for a silver-level plan instead of $195, according to an analysis by the Center on Budget and Policy Priorities. A family of four making $75,000 will pay $340 rather than $588 per month for similar coverage, the analysis found.
Everyone benefits from the changes, said Tara Straw, a senior policy analyst at the center, including people with incomes above 400% of the poverty level ($51,040 for one person) who were previously not eligible for premium tax credits.
An older customer not yet in Medicare "with an income just over 400% of the federal poverty level in some states would be paying 20% to 30% of their income toward their healthcare premium," she said. "Now that will be capped at 8.5%."
At the other end of the income spectrum, people with incomes up to 150% of the poverty level ($19,140) will owe nothing in premiums. Under the ACA, they had been required to pay up to 4.14% of their income as their share of the premium cost.
Steps to take now:
People who have marketplace coverage in one of the 36 states that use the federal healthcare.gov platform should go back in and update their applications and reselect their current plan to get new details about their subsidies starting April 1.
People with marketplace coverage in states that run their own marketplaces should check the procedures there. States including California and Rhode Island, as well as the District of Columbia, have announced they will automatically adjust enrollees' premiums.
The enhanced tax credit is in effect for all of 2021 and 2022. For premiums paid for January through April, consumers can claim those premium tax credits when they file their taxes next year.
People who don't update their applications now will still be able to claim the additional tax credit amount when their file their taxes in 2022.
The more generous premium tax credits may mean people can switch to better coverage with lower cost sharing for the same contribution. A potential snag: Switching plans may mean that amounts already paid toward a deductible under the current plan are lost. Check with the insurer.
People who bought a 2021 plan off the marketplace , perhaps because their income is too high to qualify for premium tax credits, will have to enroll in coverage on the marketplace now in order to get the new premium tax credits, said Straw.
People who are uninsured can sign up now during the COVID special enrollment period that runs through Aug. 15 on the federal exchange. (Individual states have similar special enrollment periods.) People who sign up before April 1 should go back in after April 1 to update their applications.
Free Marketplace Health Insurance for People Who Receive Unemployment Insurance
When: 2021
Who benefits: Anyone who has received or has been determined eligible to receive unemployment insurance benefits in 2021.
Under the American Rescue Plan, anyone who has received unemployment benefits this year will be considered to have income at 133% of the federal poverty level (about $17,000) for the purposes of calculating how much they owe in premium contributions for a marketplace plan. Since people with incomes up to 150% of the poverty level don't owe anything in premiums under the new law, these unemployed workers can get a zero-premium plan. If they buy a silver-level plan, they can also be eligible for cost-sharing reductions that shrink their deductible and other out-of-pocket costs.
Officials are urging people receiving unemployment insurance to enroll in a marketplace plan now to take advantage of the law's enhanced premium tax credits. The federal government said the additional savings for people who collect unemployment insurance will be available starting in early July.
Step to take now:
People who are uninsured or have marketplace coverage can still receive the enhanced premium subsidies described above in the meantime. And because the new law excludes the first $10,200 in unemployment insurance from income for the 2020 tax year, people may be able to qualify for higher premium tax credits based on lower income, Straw said.
No Payback of Excess Marketplace Subsidies
When: 2020
Who benefits: People who earned more money last year than they estimated when they signed up for marketplace coverage.
Under the ACA, people estimate their income for the upcoming year, and the marketplace estimates how much in premium tax credits can be advanced to them every month. At tax time, people reconcile their actual income with their projected income, and if they received too much in tax credits, they generally must pay it back to the government.
The new COVID relief bill eliminates that requirement for 2020. The provision could help people who received unforeseen income last year such as hazard pay or perhaps were laid off and hired back as a contractor at higher pay but without benefits, experts said.
Unfortunately, because of the timing of the new law, income tax forms and tax filing software don't reflect these changes, said Sabrina Corlette, a research professor at Georgetown University's Center on Health Insurance Reforms.
"A lot of people are going to think they owe money but they're not going to," she said.
Steps to take now:
If you've already filed your income taxes for 2020, sit tight. The IRS is reviewing the law and will provide details soon. People should not file an amended tax return at this time.
If you haven't yet filed, "some people may want to wait and see if tax software is updated to allow them to file with this adjustment on their tax return," said Straw. Last week, the IRS announced that the deadline for filing individual federal tax returns for 2020 has been extended this year from April 15 to May 17.
Subsidies to Cover 100% of COBRA Premiums
When: April through September 2021
Who benefits: People who lost their employer-sponsored coverage and want to stay on that plan.
Generally, when people get laid off and lose their employer coverage they can opt to keep it for 18 months, but they have to pay the entire premium plus a 2% administrative fee. This is done under provisions of a law known as COBRA. Under the new law, the federal government will pay the entire COBRA premium through September of this year.
For people undergoing treatment for a medical condition, it can be important to keep their coverage and existing providers. And switching plans midyear can leave people on the hook for a brand-new deductible.
But the newly enacted enhanced premium tax credits and free marketplace coverage for people who collect unemployment insurance make marketplace coverage much more affordable than in the past, experts note.
That could be important because, after September, the new COBRA subsidies will end and people will be responsible for the entire premium, unless the government puts in place a special enrollment period for that circumstance. Without another special enrollment period, they might not be able to get into a marketplace plan until January.
Steps to take now:
People who missed the original 60-day enrollment window for keeping their job-based coverage can go back and enroll in COBRA now. They have 60 days to enroll after they're notified of the new provisions under the COVID relief plan. They will not owe premiums back to their original eligibility date, but any medical claims they incurred before their enrollment won't be covered.
Review coverage to determine whether COBRA or marketplace coverage is the best, most affordable option.
The school's experience provides a window into the hardships millions of families across the country have endured since last March, and exemplifies why education isn't the only reason many Americans want schools to fully reopen.
This article was published on Tuesday, March 23, 2021 in Kaiser Health News.
After covid-19 forced Olivia Goulding’s Indiana middle school to switch back to remote learning late last year, the math teacher lost contact with many of her students. So she and some colleagues came up with a plan: visiting them under the guise of dropping off Christmas gifts.
One day in December, they set out with cards and candy canes and dropped by the homes of every eighth grader at Sarah Scott Middle School in Terre Haute, a city of more than 60,000 near the Illinois border where both Indiana State University and the federal death row are located. They saw firsthand how these kids, many living in poverty and dysfunctional families, were coping with the pandemic’s disruptions to their academic and social routines.
“You just have a better concept of where they’re coming from and the challenges they really do have,” Goulding said. “When you’re looking at that electronic grade book and Sally Lou hasn’t turned in something, you remember back in your mind: ‘Oh, yeah, Sally Lou was home by herself, taking care of three younger siblings when I stopped by, and I spotted her helping Johnny with his math and she was helping this one with something else.’”
The school’s experience provides a window into the hardships millions of families across the country have endured since last March, and exemplifies why education isn’t the only reason many Americans want schools to fully reopen. Schools like Sarah Scott help hold their communities together by providing households with wide-ranging support, which has become much tougher during the pandemic.
“A lot of our students are struggling emotionally,” said Sarah Scott’s principal, Scotia Brown. “They’re stressed because they’re falling behind in their work. Or they’re stressed because of the conditions they’re living with at home.”
Even before the coronavirus struck, kids at Sarah Scott faced significant obstacles that compounded the normal social challenges and surging hormones of middle school. They live in Vigo County, which has the state’s highest rate of child poverty and high rates of child neglect. Nearly 90% of students qualified for free or reduced-fee lunches. Some showed up needing to shower and change at the school, which has a food pantry that also offers clothes and hygiene products.
Things got more difficult for students when covid threw Sarah Scott’s normal schedule into disarray. Initially, the school went totally remote, then moved to partially in-person for the start of the 2020-21 school year. When covid spiked in October, Sarah Scott went remote again because not enough substitute teachers could fill in for quarantining staff. Since January, students have been spending part of each week in the school building, with no plans as of early March to open fully.
Kids were given laptops to use at home. But internet access can be problematic.
“Internet has been the worst,” said Samantha Riley, mother of seventh grader Mariah Pointer. “So many people are on it, it shuts down all the time.”
When that happens, she uses the Wi-Fi emitting from the school bus that sits in front of her apartment complex, one of several parked around the community to fill the gaps.
Even when the internet works, though, keeping kids on task at home isn’t easy. Heather Raley said she often cries from the stress of trying to make her eighth grade daughter engage online. “It just seems like we’re always butting heads over this,” Raley said. “It’s just a bigger battle getting the work done.”
As in many other communities, students are falling behind academically. Some don’t do any of their e-learning activities. Sarah Scott’s reports to child protective services for educational neglect — when caregivers aren’t getting their children to either in-person or remote classes — have more than tripled this school year.
Brown said she also worries about physical neglect and abuse, which is harder to detect when interacting with students remotely. “If you’re in an abusive home and you have to be there five days out of the week because you’re doing remote learning, you’re in that environment even more,” she said.
More time at home can also mean doing without necessities, including food.
The school helps by offering free breakfasts and lunches for in-person students and to-go lunches on remote days. Sometimes, the principal delivers boxes of groceries to students’ homes. The school recently secured a microwave for one family and an inflatable mattress for a student who’d been sharing a bed with his grandmother.
For some kids, the stress of the pandemic has worsened emotional problems and mental illness. Recently, a former Sarah Scott student who had moved out of state logged into her former teacher’s virtual class to say she planned to kill herself. The school contacted police, who checked on her. Referrals for suicidal students are up fourfold, Brown said.
School social worker Nichelle Campbell-Miller said it’s been tough counseling kids online or through text messages.
“I am all about building relationships and being in person and being able to dap you up or give you a hug and be like, ‘Hey, what’s up?’” she said, using a term for various greetings like fist bumps or elaborate handshakes. “So being online is extremely difficult for me, because you can’t really tell the tone of your student. When I’m talking to you in person, I can read your body language and I can gauge where you’re at.”
Right now, she said, the psychological well-being of her middle schoolers is even more important than education.
Many students, such as eighth grader Trea Johnson, come up against challenges on both fronts. Trea transferred to Sarah Scott two days before covid ended in-person learning.
“We struggle with school anyway,” said his mom, Kathy Poff. “Then when this pandemic came along, it just knocked our feet out from under us.”
His grades plunged. He began to hate school, Poff said. He didn’t attend his daily video meetings with his teachers. His mother fought with him to complete his online assignments.
“I usually get pretty bored,” said Trea, whose long, straight hair sometimes falls over his eyes.
Poff found him a therapist he meets with once a week. She said his mood and academic productivity have improved. He wants to be a computer programmer and has been coding in his spare time lately. She also moved his computer into her bedroom so she could better monitor him and has started paying him to do his schoolwork.
“I can’t even imagine what it would be like to be a 13-year-old going through this pandemic,” said Poff, 51, a single mother. “They’re going through changes anyway, adjusting to adolescence and figuring out who they are, and they don’t even have a social group to figure that out.”
Goulding, the math teacher, said she’s glad she and her co-workers can help provide stability and continuity during this trying period. One recent night, for example, she got a call from a truant boy’s grandmother, who said she was in poor health and raising him alone. The next day, the principal and social worker picked him up and drove him to school.
Still, Goulding lamented not seeing her most vulnerable students on the days when they are remote.
“How do I check on my kids? How do I make sure they’re eating? How do I make sure,” she paused to compose herself, her voice quavering, “they’re safe?
“You’re no longer thinking about, ‘How are they doing on their polynomials?’ You’re thinking about, you know, the reality of life.”
When selecting who would run the mass-vaccination program, the city seems to have largely ignored the Black Doctors COVID-19 Consortium, an effective group of licensed, experienced, Black health care professionals led by Dr. Ala Stanford.
This article was published on Tuesday, March 23, 2021 in Kaiser Health News.
In Philadelphia, the good, the bad and the ugly have all been on vivid display in the covid vaccine rollout.
The Bad comes with a giant serving of gall: For a while, the city put its mass-vaccination program in the hands of Andrei Doroshin, a 22-year-old with no experience in health care but what, from all reports, seemed a healthy interest in making money. It did not go well. In this episode, we get a deep dive from public-radio reporter Nina Feldman, who uncovered the debacle.
The Ugly is systemic racism: When selecting who would run the mass-vaccination program, the city seems to have largely ignored the Black Doctors COVID-19 Consortium, an effective group of licensed, experienced, Black health care professionals led by Dr. Ala Stanford.
“I think we have to look, not just in Philadelphia, but at the deep rooted problem that allows you to look at an organization that has been doing the work and overlooks them primarily for another group that’s unestablished, younger, not led by a physician and white,” said Stanford.
The Good is the work that Stanford and the consortium have been doing, which throws the Bad and the Ugly into stark relief. Since last spring, they’ve been working tirelessly and creatively to address disparities in the care that Black Philadelphians receive for covid-19.
Those disparities include a lack of good vaccine information from trusted sources.
Immigrant populations are eager to be vaccinated but the barriers are steep, including lower rates of technology literacy and how well they speak English.
This article was published on Tuesday, March 23, 2021 in Kaiser Health News.
In late February, a week after Virginia launched a centralized website and call center for COVID-19 vaccine preregistration, Zowee Aquino alerted the state to a glitch that could prove fatal for non-English speakers trying to secure a shot.
Callers who requested an interpreter on its new 1-877-VAX-IN-VA hotline would be put on hold briefly and then patched through. Then the line would automatically hang up on them.
It was a startling discovery for Aquino, a community health manager, and her colleagues at NAKASEC Virginia, a nonprofit that works with Asian Americans across the state. The glitch was a "direct barrier to access," she wrote to senior state officials, "and must be addressed immediately."
But that wasn't the only problem. Only two languages were offered when callers dialed in — "press 1 for English" or "press 2 for Spanish." But Virginia is home to speakers of many other languages — Chinese, Korean, Vietnamese, Arabic, Mongolian, Amharic and dozens more — who would need the help of translators to get their place in line for a vaccine.
"There's so much attention to, let's translate flyers, right? We're like, what's the point of translating a flyer that says you can call 'VAX in VA' and we have all these languages, when the phone line doesn't work consistently, or it's not even set up well for non-English, non-Spanish-speaking populations?" said Sookyung Oh, the group's Virginia director.
Concerns about equity have loomed large in the nation's mass COVID vaccination effort. Distribution of doses has been spotty among underserved populations, many of whom have been hit disproportionately by COVID hospitalizations and deaths. As Aquino found, barriers to vaccinating those groups begin with providing basic information about the shots and getting people registered.
Several individuals in interviews said the immigrant populations they work with, including Asians and Latinos, are eager to be vaccinated. But the barriers are steep, including lower rates of technology literacy and how well they speak English, if at all.
"Especially in stressful situations, they are not trying to struggle through English," said Oh, who described trying to secure a vaccine appointment for her mother — a Korean woman who lives in Philadelphia — as a "complete clusterf***" because the city's registration portal isn't available in that language.
President Joe Biden announced this month that by May 1 the federal government would launch a website and new call center to help people find vaccine appointments, but officials have declined to elaborate on whether the website will be translated into non-English languages and which languages will be available through the call center. A spokesperson for the Department of Health and Human Services did not respond to questions about language access.
Approximately 5.3 million U.S. households have limited English proficiency, according to the U.S. Census 2019 American Community Survey. And, it found, nearly 68 million people speak a language other than English at home.
The CDC's website for COVID-19 vaccine information is comprehensively translated into four languages: Chinese, Korean, Spanish and Vietnamese. The federal agency has drafted other flyers about vaccines, but which languages the materials are available in varies considerably. A "Facts about COVID-19 Vaccines" flyer is translated into nearly two dozen languages, including Arabic, French, Tagalog, Russian, Somali and Urdu. Other documents are not translated at all; if they are, Spanish is the most common translation.
"It's really concerning that the information is not available in different languages," said Bert Bayou, director of the Washington, D.C., chapter of African Communities Together, which works with immigrants across the metropolitan area.
Virginia in mid-February released a centralized online preregistration system and a new hotline for vaccinations, a full month after residents 65 and older and those with certain medical conditions could register for appointments. As of mid-March, the state health department's portal could be translated only into Spanish, spoken by nearly 8% of the state's population. Similarly, the District of Columbia's vaccine preregistration website that launched this month was initially available only in English, although officials were working to have it translated into additional languages before the month is out.
Any agency that fails to inform limited-English speakers of how to access their services — in this case, vaccinations — could be found to have violated federal laws that prohibit discrimination in healthcare on the basis of race, color, national origin and other factors, said Mara Youdelman, a managing attorney at the National Health Law Program, a civil rights advocacy organization.
"If they launch a website and they choose not to have it translated into multiple languages, I would say at a minimum that they should have some taglines on the webpage about where to get more information," Youdelman said. Even beyond the law, making the vaccination process as accessible as possible to non-English speakers is "the necessary thing to do and the right thing to do."
Otherwise, she said, "we're not going to reach the herd immunity we all want and need to get life back to normal."
Fairfax County, the most populous county in Virginia, maintained its own registration portal, but officials only on March 15 launched a Spanish registration website, two months after the state significantly broadened vaccine eligibility. In the interim, Spanish speakers had been directed to download a PDF questionnaire, and then call a phone line to relay their information for an eventual appointment. Roughly 14% of the county's population identifies as Spanish-speaking, according to the 2019 American Community Survey.
In Virginia, many immigrants are left with the heavily promoted VAX-IN-VA hotline, where access to interpretation services was uneven. The state eventually added a "press 3" menu option for help in a different language — although the "press 2" and "press 3" prompts are spoken in English — that allowed non-English and non-Spanish speakers to more easily connect with interpreters in more than 100 languages.
Yet their needs often fall to the back of the line because the languages are so discrete and, after Spanish, there's no "obvious" third language that's prioritized, Oh said. Census data shows that more than 1.3 million Virginians speak a language other than English at home, including about 310,000 who speak Asian and Pacific Island languages and 295,000 who speak Indo-European languages.
A state spokesperson said that, upon reviewing call logs, in some situations the callers were the ones who may have hung up while on hold, and other times call center agents may have accidentally hung up. Records showed that this occurred fewer than 10 times, mostly all during the first week.
"We had a small handful of issues but looking forward we have not uncovered any ongoing issues," Vaccinate Virginia spokesperson Dena Potter wrote in an email. She did not respond to questions about whether state officials planned to translate Virginia's preregistration portal into other languages and whether the system might violate federal civil rights laws.
Nationally, Asian Americans have had lower COVID mortality rates than other minorities, including Black and Latino Americans. However, there are troubling signs that underscore the urgency to boost vaccination rates. According to data compiled by the American Public Media Research Lab, the four-week period between early February and early March was the deadliest stretch of the pandemic for Asian, Latino, white and Indigenous Americans. Roughly 3,730 new deaths were reported among Asian Americans. Among Hispanics, 16,780 new deaths were reported.
To figure out whether they're eligible and to get vaccine appointments, non-English speakers rely on the clinics that treat them, English-speaking friends and family, and other nonprofits that serve immigrant communities. Without reliable information across languages, health centers and other nonprofits worry about what fills the void: Rumors and false information proliferate not only on U.S. social media platforms but apps like WhatsApp and WeChat used around the world.
"They're not your Facebook and your Instagram chats," said Andrea Caracostis, CEO of the HOPE Clinic in Houston, a federally qualified health center that treats patients from at least 60 countries. "I think language issues and misinformation from abroad is going to erode a lot of the work that we do."
The Houston area is home to one of the largest Vietnamese populations in the country. In late January, the clinic prioritized Vietnamese seniors for shots after receiving about 500 doses from the city. To make it happen, Caracostis said, they partnered with local Vietnamese doctors, nurses and even medical students to help. Clinic staff members translated immunization release forms before patients showed up.
"It's going to take a village," she said.
Groups are assembling teams of volunteers to make preregistration calls and appointments, and setting up pop-up registration sites in church parking lots in poorer neighborhoods.
"You can answer questions right on the spot," said Wanda Pierce, co-chair of Arlington County's Complete Vaccination Committee, a 40-plus-person group formed to ensure equitable distribution of vaccines in that Virginia suburb of Washington. County officials have organized preregistration pop-ups, typically done alongside other services for low-income residents, such as clothing and food distribution. A recent pop-up held at Macedonia Baptist Church, a Black church in a lower-income area of the county, saw a handful of limited-English speakers preregister for vaccines, according to organizers.
Recent polling has found that vaccine hesitancy is dipping among minority groups; however, they are still more likely to take a "wait and see" approach than white Americans. And many are struggling to secure appointments.
A March poll from KFF found that among adults who have gotten at least one dose of vaccine, 39% said someone else had helped them find or schedule an appointment. Hispanic adults were more likely than white adults to say they did not have enough information about where or when they could get vaccinated.
Spanish-language needs and outreach to Latinos haven't been adequately prioritized, said Luis Angel Aguilar, the Virginia state director of CASA. In addition to language access, "there's not enough communication and information now on where and who to call," he said.
"It's so easy for people to give up and say, 'You know, I tried,'" added Nancy White, president of the Arlington Free Clinic, which treats low-income minorities and counts Spanish, Mongolian and Amharic speakers among its patients.
The clinic, instead of signing up patients through Virginia's preregistration portal, is using its own system to get its patients vaccinated since the clinic receives an allocation of doses directly from the county. After an early pilot program to vaccinate seniors 75 and older, Arlington Free Clinic this month began vaccinating people 65 and up and those with chronic medical conditions. It relies on over 100 volunteer interpreters to help patients navigate the healthcare system.
"You can do it," White said of getting around language issues, "but it takes a lot of time and a lot of manpower."
Democrats, newly in control of Congress and the White House, are united behind an idea that Republican lawmakers and major drugmakers fiercely oppose: empowering the Department of Health and Human Services to negotiate the prices of brand-name drugs covered by Medicare.
But they do not have enough votes without Republican support in the Senate for the legislation they hope will lower the price consumers pay for prescription drugs. That raises the possibility that Democrats will use a legislative tactic called reconciliation, as they did to pass President Joe Biden's COVID relief package, or even eliminate the Senate filibuster to keep their promise to voters.
Regardless, Democrats hope to authorize Medicare negotiations on payments for at least some of the most expensive brand-name drugs and to base those prices on the drugs' clinical benefits. Such a measure could put Republicans in the uncomfortable position of opposing an idea that most voters from both parties generally support.
As chairman of a health and retirement subcommittee, Sen. Bernie Sanders (I-Vt.) on Tuesday was set to hold one of this Congress' first hearings on drug prices, seen as a way for Sanders and his allies to highlight that drug prices in the United States are among the highest in the world.
Dr. Aaron Kesselheim, a Harvard Medical School professor who researches the drug industry and will testify at the hearing, said there is no practical reason the federal government cannot negotiate a price based on independent assessments of a drug's clinical benefits — as every other industrialized nation, and even some state Medicaid programs, do.
"The real reason is the drug industry's lobbying power," he said.
Negotiating Medicare drug prices has ebbed and flowed as a political issue for years, repeatedly defeated in Congress under pressure from the pharmaceutical industry. The government has been banned from negotiating Medicare drug prices since the creation of the Part D prescription drug benefit in 2006. Instead, the optional private plans through which Americans get Medicare drug benefits negotiate with drugmakers.
It has been two years since Congress summoned executives from Big Pharma companies and pharmacy benefit plans to Capitol Hill for a scolding over skyrocketing prices and the loopholes and secretive contracts they use to block competitors and secure profits.
Despite then-President Donald Trump's keen interest in lowering drug prices, most proposals by both Democrats and Republicans on Capitol Hill went nowhere under Republican leaders, who argue government intrusion in the free market would hamper future innovation. They point to an estimate from the Congressional Budget Office suggesting the cuts to drugmakers' revenue under Medicare negotiations could lead to nearly 40 fewer new drugs being developed in the next 20 years.
The government currently approves about 30 drugs per year.
The drug industry, bolstered by its quick efforts to develop a vaccine, has seen public opinion turn in its favor after several years of sharp declines. In early 2020, before the pandemic shut down much of the United States, only about one-third of Americans rated the industry positively, according to a Harris public opinion poll. In February, as vaccination efforts ramped up, about 62% rated it positively — a larger turnaround than any other industry in the past year.
PhRMA, the lobbying organization that represents brand-name drugmakers, came out strong this month against the administration's first drug-pricing action, a measure in Biden's sprawling COVID relief package that is expected to result in drugmakers paying higher rebates to state Medicaid programs for their drugs.
Brian Newell, a PhRMA spokesperson, suggested the fight is just beginning for Democrats. "The American people reject government price setting when they realize it will lead to fewer new cures and treatments and less access to medicines," Newell said in a statement. "Our industry has partnered closely with policymakers in fighting the pandemic, and we hope they will partner with us to develop solutions that will lower drug costs for patients, protect access to life-saving medicines and preserve future innovation."
The Power of Negotiation
Though they disagree on some of the details, such as how far penalties should go, Democrats are united on the need to address drug pricing. Biden, progressives like Sanders and moderates such as Sen. Joe Manchin (D-W.Va.) support proposals that would generally allow the government to set restrictions on brand-name drugs. Researchers say these drugs, initially priced without any competition or regulation, are a leading factor driving up costs for Americans, their employers and the government.
In 2019, the Democratic-controlled House passed legislation that would allow the secretary of Health and Human Services to negotiate the prices for at least 25 of the most expensive drugs marketed in the United States that lack at least one competitor — prices that could be available to people insured by private plans as well. Senate Republicans refused to consider the bill, arguing the policy would discourage drug development.
Top Democrats, including Sen. Ron Wyden of Oregon, chairman of the Senate Finance Committee, say that is likely to be incorporated into drug-pricing reform this year.
Under the 2019 House bill, the negotiated price could not exceed 120% of the highest price in one of six other industrialized nations. Drugmakers would face escalating penalties for not complying.
Sanders and some Democrats took a slightly different path in the previous Congress, sponsoring a package that would enable Medicare negotiations, as well as allow the importation of drugs and broadly tie drug prices to median drug prices in Canada, the United Kingdom, France, Germany and Japan.
But party leaders prefer the House proposal for negotiating prices as a model for this year's efforts.
In addition to allowing negotiated payments for drugs, Democrats also want to cap prices so they could not rise faster than inflation and limit how much Medicare beneficiaries pay out-of-pocket each year.
Democrats say there are more savings to be gained through giving negotiating power to the government, which would have more heft than any individual plan. In 2017, Medicare accounted for about 30% of the nation's total retail spending on prescription drugs, according to KFF.
Advocates of Medicare negotiation often cite the Veterans Health Administration as a possible model, noting the government already negotiates with drugmakers on behalf of retired service members and often secures drug prices that are about 35% lower than those paid by Medicare beneficiaries.
Flashback to 2019
Fresh off the campaign trail and invigorated by polls showing about 8 in 10 Americans believe drug prices are unreasonable, senior lawmakers from both parties called the leaders of brand-name drugmakers and pharmacy benefit managers to testify about rising drug costs in early 2019.
That year saw a wave of bills introduced, the most ambitious of which constrained the cost of brand-name drugs through direct price controls. Trump, who bucked his party and supported Medicare negotiation and other price-setting measures, offered a series of changes that mostly fell apart under court challenges.
Sen. Chuck Grassley (R-Iowa) and Wyden, then the chairman and top Democrat on the Finance Committee, respectively, unveiled a proposal that, among other measures, would cap the price Medicare pays for brand-name drugs to the pace of inflation and trigger rebates if prices rise too quickly.
Medicaid already uses a similar inflation cap — and tends to pay lower prices on drugs than Medicare. The HHS inspector general has said Medicare could collect billions of dollars from the drug industry if it followed Medicaid's lead.
But other Republicans refused to support Grassley on the bill, saying inflation caps amount to government intrusion in the free market, and Republican leaders never brought it up for a vote. Even Wyden said he was not sure he could vote for the proposal unless he was afforded an opportunity to offer a broader cost-containment measure, including price negotiation.
"We're not going to sit by while opportunities for seniors to use their bargaining power in Medicare are frittered away," Wyden said at the time.
The former legislative partners are still pushing the issue. Grassley has continued to press lawmakers to consider the earlier bill. Wyden has said he intends to "build off the bipartisan work" he did with Grassley and work with the House-passed Medicare negotiation bill as Democrats consider a reform package this year.