Kristi Noem says that while her state sought to protect high-risk populations and keep hospitals from overflowing with patients, it was done in a way that still allowed residents to earn a living.
This article was published on Friday, February 12, 2021 in Kaiser Health News. This story was produced in partnership with PolitiFact.
Covid-19 has pushed states to adopt unique approaches to protect their residents, but few have garnered as much scrutiny as South Dakota. Its governor, Kristi Noem, refused to enact a mask mandate or close any businesses. She argued these precautions were a matter of personal choice, even at large gatherings, such as a July 3 political event at Mount Rushmore and the annual motorcycle rally in Sturgis that was connected to covid cases in Minnesota and other nearby states.
She sees success in the approach.
In a recent television interview, Fox News personality Laura Ingraham asked Noem, a Republican, why she believes news outlets criticize her handling of the pandemic. Her response: While her state sought to protect high-risk populations and keep hospitals from overflowing with patients, she said, it was done in a way that still allowed residents to earn a living.
"That was a unique approach that, for our people, really worked well," she said in the segment. "We did have tragedies and we did have losses. But we also got through it better than virtually every other state."
That got us wondering. Are we really "through" the pandemic? And on what measures is this statement based?
We first reached out to Noem’s office to ask these questions.
In an email, communications director Ian Fury didn’t address the first question. On the second, Fury cited South Dakota’s standing in these categories: vaccine distribution, unemployment, the number of people moving to the state and the state’s budget surplus.
Fury dismissed using an "apples-to-apples" comparison between South Dakota and other states on measures such as deaths and case counts, saying such assessments are flawed because the timing of surges and the metrics used can vary by state.
Expanding the Lens on How South Dakota’s Doing
Several measures can offer clues as to how a state is managing the pandemic, experts said.
In the health category, the number of deaths per capita is one way to track the most severe covid cases, said Kumi Smith, assistant professor of epidemiology at the University of Minnesota.
This metric is not a real-time snapshot of how quickly the virus is spreading in a community, given the lag in reporting deaths. But, Smith said, it can provide “a much fuller picture of what’s going on with the pandemic” than case counts alone. That’s because case counts can wax and wane depending on other factors, such as the availability of coronavirus tests and which populations a state prioritizes for testing, she said.
In South Dakota, 1,815 lives have been lost to the pandemic, making its per capita death rate 205 deaths for every 100,000 residents as of Wednesday, according to data from the Centers for Disease Control and Prevention. The state’s death rate ranks among the top 10 in the nation.
Another key metric is positivity rates — or the percentage of people tested who have the virus. It can indicate whether a state is regularly testing enough residents, said Dr. Amesh Adalja, an infectious diseases physician and senior scholar at the Center for Health Security at Johns Hopkins University.
Positivity rates vary by how they are calculated. Data from the South Dakota Department of Health and the CDC shows the average weekly positivity rate peaked in the spring. Few tests were being done at the time, which means every positive result would have had a greater impact on the rate. Johns Hopkins’ covid tracker, which uses a different method, shows the state’s rate peaked in November.
High positivity rates can indicate a lack of adequate testing that allowed the virus to spread unchecked, said Adalja. “Their death count may be even higher,” he added, because some of those cases may not have been properly tested and identified as caused by covid.
Last week, the positivity rate hovered slightly under 7%, as reported by the state. Johns Hopkins researchers placed the figure closer to 20% as of Feb. 3. Both are above the 5% maximum rate recommended by the World Health Organization to reopen a community.
Hospitalization data — specifically, the number of intensive care unit beds occupied — can also help gauge how a state is handling the pandemic, public health experts said. By comparing the number of beds occupied in intensive care units during the pandemic with the year before, said Smith, the metric can show whether hospitals could keep up with the demand caused by the virus.
Newsreportsindicate some South Dakota hospitals struggled to keep up with demand in the fall when the state’s outbreak peaked. As of Wednesday, state data shows, about half of adult and pediatric ICU beds in the state were available.
Public health experts noted South Dakota has emerged as a national leader in distributing covid vaccines, ranking among the 10 states with the most residents vaccinated per capita. While the vaccines do offer a way out of the pandemic, “I do think that we are still at the very, very beginning of a very long end,” said Smith.
And the Economy?
Most of the metrics Noem’s office highlighted related to South Dakota’s economy. And, indeed, the state has the lowest unemployment rate in the country and ended the budget year with a $19 million surplus.
How did the state manage to pull that off during a pandemic?
Evert Van der Sluis, a professor of economics at South Dakota State University, said several factors helped. The state experienced less of an economic decline than initially projected at the start of the pandemic because of federal aid, conservative revenue projections and a multibillion-dollar investment in wind energy, he said.
South Dakota — where agriculture is the top industry — also benefited from billions of dollars in direct federal government payments to farmers, said Van der Sluis. While some of these payments were connected to the pandemic, others helped offset the financial losses caused by fallout from a U.S. trade dispute with China.
However, Van der Sluis said, these indicators don’t capture the depth of the damage caused by the pandemic.
They also don’t necessarily highlight how a state has done better than others because they don’t take into account that variations in population density, tax revenue and industries all influence how a state manages an outbreak.
"We can talk about economic well-being," he said, "but some of the enormous harm done by covid is not reflected, at least in the short run, by economic measures." It may become apparent in long-term measures like health care spending and lost productivity, he added.
While the lack of lockdowns also may have played a role in keeping South Dakota’s economy afloat, said Lucy Dadayan, a senior research associate at the Urban Institute, there are other states that raked in cash while implementing strong public health measures. Case in point: California.
As reported by Politico, California defied expectations of an economic downturn because of tax revenue from its wealthiest residents and their stock market gains. Ultimately, Dadayan said, a state’s ability to stay financially afloat is dependent on a variety of factors — which makes it more difficult to draw comparisons between states and their economic performance during the pandemic.
"It all matters," she said.
Our Ruling
Both public health measures and fiscal stability represent important pieces to forming a full picture of how the state is handling the pandemic, experts said.
As Van der Sluis noted, these metrics are blunt instruments when measuring the damage done by the death of a loved one.
In addition, comparing states wholesale is difficult, given their differences and the dynamic nature of the pandemic, as various sources noted. And, though South Dakota is experiencing a decline in case counts, with 109,580 cases to date and growing concern nationwide about the virus’s emerging variants, it’s hard to say the state has “come through” the pandemic.
Noem’s statement on South Dakota’s performance cherry-picked the data, emphasizing the state’s economy while giving less weight to the lives lost and the burden of disease its residents suffered. We rate it Mostly False.
Seniors of color are lagging in covid vaccinations, and the Biden administration plans to redirect doses to community clinics as soon as next week to help make up for the emerging disparity.
This article was published on Thursday, February 11, 2021 in Kaiser Health News.
Mary Barnett is one of about a dozen seniors who got a covid-19 vaccine on a recent morning at Neighborhood Health, a clinic tucked in a sprawling public housing development on the south side of downtown Nashville, Tennessee.
"Is my time up, baby?" Barnett, 74, asked a nurse, after she'd waited 15 minutes to make sure she didn't have an allergic reaction. Barnett, who uses a wheelchair, wasn't in any particular rush. But her nephew was waiting outside, and he needed to get to work.
"Uber, I'm ready," she joked, calling him on the phone. "Come on."
Seniors of color like Barnett are lagging in covid vaccinations, and the Biden administration plans to redirect doses to community clinics as soon as next week to help make up for the emerging disparity. Tennessee is one of a few states allocating vaccines to the network of clinics known as FQHCs, or federally qualified health centers.
In most of the states reporting racial and ethnic data, a KHN analysis found that white residents are getting vaccinated at more than twice the rate of Black residents. The gap is even larger in Pennsylvania, New Jersey and Mississippi.
"Equity is our north star here," Dr. Marcella Nunez-Smith said at a briefing Tuesday, announcing vaccine shipments to the federally funded clinics. "This effort that focuses on direct allocation to community health centers really is about connecting with those hard-to-reach populations across the country."
Nunez-Smith, who leads the administration's health equity task force, said federally funded clinics — at least one in every state — will divvy up a million doses to start with, enough for 500,000 patients to get both doses. Eventually, 250 sites will participate.
The administration said roughly two-thirds of those served by FQHCs live at or below the poverty line, and more than half are racial or ethnic minorities.
Seeking People Out
In Nashville, more than a third of eligible white residents have gotten their first shot, compared with a quarter of Hispanic residents and fewer than one-fifth of Black Nashvillians.
Unlike many local health departments, Neighborhood Health is not fending off crowds. They're seeking people out. And it's slow work compared with the mass vaccination campaigns by many public health workers and health systems.
Barnett lives in a public housing complex that gathered names of people interested in getting the vaccine. She was lucky to have her nephew's help to get to her appointment; transportation is a challenge for many seniors. Some patients cancel at the last minute because a ride falls through. Often, the clinic offers to pick up patients.
Aside from logistical challenges, Barnett said, many of her neighbors are in no rush to get their dose anyway. "I tell them about taking it, they say, 'Oh, no, I'm not going to take it.' I say, 'What's the reasoning?'"
Usually, Barnett said, they don't offer much of a reason. Her own motivation is a sister with kidney disease who died of covid in July.
"You either die with it or die without it," her brother told her in support of getting the vaccine. "So if the shot helps, take the shot."
Same Story, Next Chapter
People of color have made up an outsize share of the cases and deaths from covid nationwide. And, predictably, the same factors at play driving those trends are also complicating the vaccine rollout.
Rose Marie Becerra received an invitation to get the vaccine through Conexión Américas, a Tennessee immigrant advocacy nonprofit. A U.S. citizen originally from Colombia, she's concerned about those without legal immigration status.
"The people who don't have documents here are nervous about what could happen," she said, adding they worry that providing personal information could result in immigration authorities tracking them down.
And unauthorized immigrants are among those at the highest risk of covid complications.
Even with 1,300 total community health centers around the country, Neighborhood Health CEO Brian Haile said his 11 clinics in the Nashville area can't balance out a massive health system that tends to favor white patients with means.
Haile said everyone giving vaccines — from hospitals to health departments — must focus more on equity.
"We know what's required in terms of the labor-intensive effort to focus on the populations and vaccinate the populations at the highest risk," Haile said. "What we have to do as a community is say, 'We're all going to make this happen.'"
Democratic legislators in three states introduced bills that would slap an 80% tax on the drug price increases that ICER determines are not supported by evidence of improved clinical value.
This article was published on Friday, February 12, 2021 in Kaiser Health News.
Fed up with a lack of federal action to lower prescription drug costs, state legislators around the country are pushing bills to penalize drugmakers for unjustified price hikes and to cap payment at much-lower Canadian levels.
These bills, sponsored by both Republicans and Democrats in a half-dozen states, are a response to consumers' intensified demand for action on drug prices as prospects for solutions from Congress remain highly uncertain.
Eighty-seven percent of Americans favor federal action to lower drug prices, making it the public's second-highest policy priority, according to a survey released by Politico and Harvard University last month. That concern is propelled by the toll of out-of-pocket costs on Medicare beneficiaries, many of whom pay thousands of dollars a year. Studies show many patients don't take needed drugs because of the cost.
"States will keep a careful eye on Congress, but they can't wait," said Trish Riley, executive director of the National Academy for State Health Policy (NASHP), which has drafted two model bills on curbing prices that some state lawmakers are using.
Several reports released last month heightened the pressure for action. The Rand Corp. said average list prices in the U.S. for prescription drugs in 2018 were 2.56 times higher than the prices in 32 other developed countries, while brand-name drug prices averaged 3.44 times higher.
The Institute for Clinical and Economic Review found that drugmakers raised the list prices for seven widely used, expensive drugs in 2019 despite the lack of evidence of substantial clinical improvements. ICER, an independent drug research group, estimated that just those price increases cost U.S. consumers $1.2 billion a year more.
Democratic legislators in Hawaii, Maine and Washington recently introduced bills, based on one of NASHP's models, that would impose an 80% tax on the drug price increases that ICER determines in its annual report are not supported by evidence of improved clinical value.
Under this model, after getting the list of drugs from ICER, states would require the manufacturers of those medicines to report total in-state sales of their drugs and the price difference since the previous year. Then the state would assess the tax on the manufacturer. The revenue generated by the tax would be used to fund programs that help consumers afford their medications.
"I'm not looking to gather more tax dollars," said Democratic Sen. Ned Claxton, the sponsor of the bill in Maine and a retired family physician. "The best outcome would be to have drug companies just sell at a lower price."
Similarly, Massachusetts Gov. Charlie Baker, a Republican, proposed a penalty on price hikes for a broader range of drugs as part of his new budget proposal, projecting it would haul in $70 million in its first year.
Meanwhile, Republican and Democratic lawmakers in Hawaii, Maine, North Dakota, Oklahoma and Rhode Island have filed bills that would set the rates paid by state-run and commercial health plans — excluding Medicaid — for up to 250 of the costliest drugs to rates paid by the four most populous Canadian provinces. That could reduce prices by an average of 75%, according to NASHP.
Legislators in other states plan to file similar bills, Riley said.
Drugmakers, which have formidable lobbying power in Washington, D.C., and the states, fiercely oppose these efforts. "The outcomes of these policies would only make it harder for people to get the medicines they need and would threaten the crucial innovation necessary to get us out of a global pandemic," the Pharmaceutical Research and Manufacturers of America, the industry's trade group, said in a written statement.
Colorado, Florida and several New England states previously passed laws allowing importation of cheaper drugs from Canada, an effort strongly promoted by former President Donald Trump. But those programs are still being developed and each would need a federal green light.
Bipartisan bills in Congress that would have penalized drugmakers for raising prices above inflation rates and capped out-of-pocket drug costs for enrollees in Medicare Part D drug plans died last year.
"If we waited for Congress, we'd have moss on our backs," said Washington state Sen. Karen Keiser, a Democrat who sponsored the state's bill to tax drug price hikes.
Based on ICER data, two of the drugs that could be targeted for tax penalties under the legislation are Enbrel and Humira — blockbuster products used to treat rheumatoid arthritis and other autoimmune conditions.
Since acquiring Enbrel in 2002, Amgen has raised the price 457% to $72,240 for a year's treatment, according to a report last fall from the House Committee on Oversight and Reform.
In a written statement, Amgen denied that Enbrel's list price increase is unsupported by clinical evidence and said the company ensures that every patient who needs its medicines has "meaningful access" to them.
The price for Humira, the world's best-selling drug, with $20 billion in global sales in 2019, has gone up 470% since it was introduced to the market in 2003, according to AnalySource, a drug price database.
In contrast, AbbVie slashed Humira's price in Europe by 80% in 2018 to match the price of biosimilar products available there. AbbVie patents block those biosimilar drugs in the U.S.
AbbVie did not respond to requests for comment for this article.
Manufacturers say the list price of a drug is irrelevant because insurers and patients pay a significantly lower net price, after getting rebates and other discounts.
But many people, especially those who are uninsured, are on Medicare or have high-deductible plans, pay some or all the cost based on the list price.
Katherine Pepper of Bellingham, Washington, has felt the bite of Humira's list price. Several years ago, she retired from her job as a management analyst to go on Social Security disability and Medicare because of her psoriatic arthritis, diabetes and gastrointestinal issues.
When she enrolled in a Medicare Part D drug plan, she was shocked by her share of the cost. Since Pepper pays 5% of the Humira list price after reaching Medicare's catastrophic cost threshold, she spent roughly $15,000 for the drug last year.
Medicare doesn't allow drugmakers to cover beneficiaries' copay costs because of concerns that it could prompt more beneficiaries and their doctors to choose high-cost drugs and increase federal spending.
Many patients with rheumatoid and other forms of arthritis are forced to switch from Enbrel or Humira, which they can inject at home themselves, to different drugs that are infused in a doctor's office when they go on Medicare. Infusion drugs are covered almost entirely by the Medicare Part B program for outpatient care. But switching can complicate a patient's care.
"Very few Part D patients can afford the [injectable drugs] because the copay can be so steep," said Dr. Marcus Snow, an Omaha, Nebraska, rheumatologist and spokesperson for the American College of Rheumatology. "The math gets very ugly very quickly."
To continue taking Humira, Pepper racked up large credit card bills, burning through most of her savings. In 2019, she and her husband, who's retired and on Medicare, sold their house and moved into a rental apartment. She skimps on her diabetes medications to save money, which has taken a toll on her health, causing skin and vision problems, she said.
She's also cut back on food spending, with her and her husband often eating only one meal a day.
"I'm now in a situation where I have to do Russian roulette, spin the wheel and figure out what I can do without this month," said Pepper.
A key U.S. senator is calling on the Federal Trade Commission to investigate N95 mask fraud and federal agents announced the seizure of 1.7 million more counterfeit 3M masks in the New York borough of Queens as the breadth of a major scam concerning front-line health workers continues to grow.
Early Thursday, Sen. Maria Cantwell (D-Wash.), on her first day as chair of the Senate Commerce Committee, said she would ask the Federal Trade Commission to look into 1.9 million counterfeits shipped to hospitals in Washington state. The state hospital association announced earlier in the week that law enforcement had notified them that they'd been sold fake N95s branded as 3M products.
"We are looking to our FTC to make sure that there are no fraudulent products and materials out here, like masks, that my state is facing," Cantwell said in a statement.
KHN reported Thursday that hospitals in Ohio, Minnesota and New Jersey also were sold thousands of fake masks. Later in the day, nurses on a covid-19 unit at Jersey Shore University Medical Center discovered yet another highly suspicious aspect to their 3M-branded respirators: The lot numbers printed on the masks did not match the lot numbers on the boxes they were shipped in.
"Lives are literally at risk because these workers are not protected," said Debbie White, president of the Health Professionals & Allied Employees union.
KHN also reported that independent tests on masks given to New Jersey nurses — which matched the very lot numbers 3M had warned customers about in a fraud alert — actually showed filtration levels at 95% or above, as would be expected of a genuine N95.
Yet the 3M company said other critical aspects of the devices, such as how consistently and well they fit the face, could not be guaranteed. The Cleveland Clinic, which took purported 3M N95s off the shelves after discovering they were fake in January, said in a statement that their tests revealed "these masks were not effective."
Federal law enforcement authorities have been tracking down these counterfeits for months. Homeland Security Investigations and its Global Trade Investigations unit have been coordinating with Border Patrol officials to seize more than 14.5 million counterfeit masks, nearly all falsely branded as 3M.
One of their cases made headlines Thursday, when Homeland Security Investigations and Queens District Attorney Melinda Katz announced an arrest and the seizure of nearly 1.8 million fake 3M masks in a warehouse.
Katz's office got a tip that counterfeit masks were being offered for sale from a warehouse in the Long Island City section of Queens. Investigators posed as undercover buyers and purchased masks on several days to verify their authenticity.
The investigators determined that a healthcare system in the southern U.S. bought 200,000 of them, at prices that were more than twice what an authorized vendor is advised to charge, which is $1.27 each. Officials arrested the warehouse manager, a 33-year-old from Brooklyn, and said the investigation is ongoing.
Peter Prater's family wasn't thinking about covid-19 when the call came that he had been taken to the hospital with a fever.
It was April, and the Tallahassee Developmental Center, where Prater lives, hadn't yet had any covid diagnoses. Prater, 55, who has Down syndrome and diabetes, became the Florida center's first known case, his family said. Within two weeks, more than half of the roughly 60 residents and a third of the staff had tested positive for the virus, according to local news reports.
"We thought we were going to lose him," said Jim DeBeaugrine, Prater's brother-in-law, who also works as an advocate for people with disabilities. "We weren't aware of a correlation to Down syndrome and bad outcomes with covid yet. He's just a frail person, period."
Prater survived after roughly seven weeks in the hospital. But five others from the center — three residents and two staffers — died. The center is working to follow federal and state pandemic guidelines, said Camille Lukow, regional director of the Mentor Network, which began operating the facility in December.
Early studies have shown that people with intellectual and developmental disabilities have a higher likelihood of dying from the virus than those without disabilities, likely because of a higher prevalence of preexisting conditions. While some high-profile outbreaks made the news, a lack of federal tracking means the population remains largely overlooked amid the pandemic.
No one knows how many of the estimated 300,000 people who live in such facilities nationwide have caught covid or died as a result. That creates a blind spot in understanding the impact of the virus. And because data drives access to scarce covid vaccines, those with disabilities could be at a disadvantage for getting prioritized for the shots to keep them safe.
While facilities ranging from state institutions that serve hundreds to small group homes with a few people have been locked down throughout the pandemic, workers still rotate through every day. Residents live in close quarters. Some don't understand the dangers of the virus. Those who need help eating or changing can't keep their distance from others. Many facilities also have struggled to keep enough masks and staffers on hand.
The Consortium for Citizens with Disabilities has repeatedly asked federal agencies to hold facilities where people with disabilities live to the same pandemic rules as nursing homes, which must report covid cases directly to national agencies.
Nicole Jorwic, senior director of public policy with The Arc of the United States, a nonprofit that serves people with disabilities, said a spotlight on nursing homes makes sense. Those homes have seen more than 121,000 deaths due to the pandemic. But it's unclear what the toll is at the facilities focused on those with disabilities.
"How do we know how big the problem is if we're not capturing it?" she asked.
Greg Myers, a Centers for Medicare & Medicaid Services press officer, said in an email that states, not federal officials, manage Medicaid-funded intermediate care facilities and group homes for people with developmental disabilities. He said many of those facilities serve fewer than eight residents and don't "pose the same concerns as larger congregate settings."
Some states are tracking the caseloads, though Jorwic said the type of information they collect varies. New York state data revealed disability group home residents there are dying at higher rates than the general population. In Illinois — which called on the National Guard to respond to outbreaks in two of the state's largest developmental centers in April — more than half of the 1,648 residents in state-run developmental facilities have had the virus.
Still, cases are flying under the radar. When The Associated Press did a national survey in June of how many people in such housing have fallen sick or died of covid, about a dozen states didn't respond or release comprehensive data.
"The delay or complete lack of access to this data comes with a body count," Jorwic said. "You're not acknowledging that these settings are just as dangerous as other settings, like nursing homes."
Centers for Disease Control and Prevention guidelines recommend that states prioritize long-term care facilities early in the vaccine rollout, but few states specified that people with disabilities who live in group homes should be candidates for that initial vaccine distribution.
New York is one of the few that did specifically include certified-group facilities, and this month opened access to all people with intellectual or developmental disabilities.
"New York state has the actual data to help show the horrors of covid," said Dr. Vincent Siasoco, a primary care physician in New York City who focuses on patients with developmental disabilities.
Siasoco, a board member of the American Academy of Developmental Medicine and Dentistry, said that likely misses people with medical risks not yet reflected in data, like someone living in a group home with cerebral palsy who gets food through a tube and can't speak.
"More studies have to be done. Data has to be shared," Siasoco said.
In the meantime, the academy has said intellectual and developmental disability diagnoses should be explicitly included on the list of high-risk conditions used to determine vaccine priority, and facilities housing those with disabilities should have access at the same time as nursing homes — though, Siasoco acknowledged, there's a long line of people advocating to be prioritized and not enough vaccine to go around.
In Montana, people in group living settings including disability housing were in the phase initially right behind healthcare workers and nursing home residents on the list for vaccines. But the new governor, Republican Greg Gianforte, instead prioritized anyone 70 and older and those with underlying health conditions, with the goal of protecting the most vulnerable. The change nearly tripled how many people qualify for that phase of the vaccine rollout.
Group home administrators have said many of their clients may still qualify for a vaccine under the governor's new rule because of their medical risks. The new plan also allows health providers to include people with medical conditions on a case-by-case basis.
Dee Metrick, the executive director of Reach Inc., which offers group housing in Bozeman, said the local health department is working to get shots to Reach's residents. However, she said, the change creates more uncertainty for some people with disabilities across the state, as each county does things differently.
"We're hoping this will unfold in their favor, but we just don't know," said Metrick, who added that people with developmental disabilities have historically not received proper medical care or fair treatment.
In Florida, the state's covid vaccine plan included group living settings for those with disabilities in its early vaccine rollout to long-term care facilities.
"But there have been instances where local authorities have not gotten the memo," said Jim DeBeaugrine, Prater's brother-in-law, who is also the interim CEO of The Arc of Florida.
The state has faced criticism for being slower with its vaccine rollout than some expected and after some camped out in lines overnight to get a dose — something group home residents can't do. DeBeaugrine said that how and when group homes can get vaccines to their residents varies, but all should be able to start by March 1.
By February, Prater's family had heard he would have the option to receive a dose, but a bacterial infection has delayed him from being able to get the shot.
Sam Edelman felt like a girl for as long as he could remember, his dad said. As Sam's 18th birthday approached, and after years of researching hormone treatments, the high school senior scheduled an appointment with a doctor who treats transgender people.
It was a big step for Sam, a musician, a runner, a snowboarder and a taekwondo black belt who still identified as a boy at that point and had shared his secret only with his family and closest confidants.
The doctor said Sam was too young and thought it unlikely that any doctor would treat the Bozeman, Montana, teen for the same reason. Ten months later, on Feb. 20, 2016, Sam died by suicide.
"Sam was devastated," said Adam Edelman, Sam's father, recalling that visit with the doctor. "He lost hope."
As legislatures meet across the U.S. to write new laws, at least 16 states are considering measures that would affect transgender athletes or those seeking treatment for gender dysphoria — the persistent and distressing feeling that one's gender is different from the sex noted on the person's birth certificate.
This wave of state legislation follows 79 anti-transgender measures introduced in statehouses last year. Nearly all were defeated.
Adam Edelman was motivated to tell Sam's story as Montana lawmakers considered two proposals: criminalizing doctors who treat transgender minors and banning transgender student-athletes from competing under their self-identified sex. One Montana bill would have fined doctors who provided treatment with medicines like puberty blockers to anyone under age 18 up to $5,000; even a referral to another medical expert could threaten a doctor's medical license. That bill was narrowly defeated in the Montana House of Representatives in January, 51-49.
The House passed a separate measure that would ban transgender athletes from competing on teams that don't align with their sex at birth. The state Senate is considering the proposed ban, though opponents of the measure say there are no existing conflicts or disputes in schools that would make a ban necessary.
At least 10 states besides Montana are considering similar bills restricting transgender student-athletes this session: Connecticut, Hawaii, Iowa, Kentucky, Mississippi, New Hampshire, North Dakota, Oklahoma, Tennessee and Texas.
Montana's bill to criminalize doctors for medically treating transgender children — which can still be revived with enough votes — is similar to bills being considered in at least 10 other states this year: Alabama, Iowa, Indiana, Mississippi, Missouri, Oklahoma, South Carolina, Tennessee, Texas and Utah.
This push across the U.S. is happening despite a decision by President Joe Biden shortly after his inauguration to lift LGBTQ restrictions in the military by executive order. It also comes after North Carolina lost an estimated $3.76 billion to boycotts following a 2016 law requiring people to use the bathroom that matches their birth gender. That law has since been repealed.
Laura Haynes, a retired faith-based clinical psychologist, is a major advocate of bills to ban medical intervention for transgender youth. Traveling from her home in California to testify before a Montana House committee hearing, she argued that social influences and media glamorization have led to a huge increase in youth identifying as transgender.
Most would eventually embrace their birth sex if adults just "watched and waited," said Haynes, who also supports the discredited practice of conversion therapy for gays and lesbians.
She and proponents of the measures raise the specter of children undergoing dangerous and irreversible treatment.
"Experimental treatment affirming gender identity leads to puberty blockers, toxic wrong-sex hormones, organs devoid of function or pleasure, and potential mutilation of sex organs," said Haynes.
But the treatments are not experimental, and surgeries are not approved for youths under age 18, said Dr. Colleen Wood, one of four pediatric endocrinologists in Montana.
Medical association protocols call for no medical intervention before puberty. If youths persist in feeling distressed about their bodies once puberty begins, an arduous process commences.
If both parents consent and a mental health professional agrees, a teen might be approved for a puberty blocker prescription. Blockers have been used for 40 years to treat children with early onset of puberty and are reversible, said Dr. Lauren Wilson, vice president of Montana's chapter of the American Academy of Pediatrics.
Blockers are typically taken for five years before hormone therapy is considered. After teens have lived as the gender they embrace and undergone a comprehensive mental health assessment, they might be prescribed estrogen or testosterone.
If the hormones are stopped, the results are largely reversible, although some breast tissue may remain from estrogen, and a deepening of the voice and clitoris enlargement might be permanent from testosterone, said Wood. Infertility is a possible outcome.
A Cornell University review of 55 peer-reviewed studies found that 93% showed gender transition improved the overall well-being of transgender people, while 7% found mixed results or no differences.
Of the bills involving transgender people that were considered last year in states — including medical treatment bans, sports bans and hurdles to changing sex designations on documents like driver's licenses — all failed except a sports ban in Idaho. A federal district court later ruled the Idaho law unconstitutional and issued an injunction. The case is now before the 9th Circuit Court of Appeals.
The sports bans run counter to NCAA rules, which state that transgender females who were born male may compete on female teams if they have been taking hormones for one year. Laws that don't follow NCAA rules could result in those states being banned from hosting championship games.
Montana Republican Rep. Braxton Mitchell, a 20-year-old freshman lawmaker and supporter of the Montana measure, was dismissive of potential consequences. "My House district is nearly 1,800 miles and a 27-hour drive from the NCAA" headquarters in Indianapolis, he said. "We will hold our own."
Without legislative action, Mitchell said, he worried that women's sports in the state will be ruined.
"Someone can wake up one morning and say, 'I'm a man today,' or 'I'm a woman today,' as a tactic to win in sports," Mitchell said.
That's not how it works, said Jaime Gabrielli, the mother of a child born female who identified as a boy as a toddler. When taken to the store to choose "big kid pants" during potty training, he ran to the boys' section and chose SpongeBob SquarePants briefs. At age 4, he begged for a boy's haircut and instead was given a pageboy with bangs. He "fixed" it by cutting off his own hair.
Presenting himself to the world as a boy transformed his life, said Gabrielli. For the first time, he didn't dread school, didn't avoid going to movies and social events, and didn't experience as much extreme anxiety.
If the bills pass, civil rights groups have vowed to challenge them on constitutional grounds and as a violation of other legal protections. In addition to the equality issues these bills raise, civil liberty advocates questioned their practicality.
"It is unclear what would happen in Montana if someone disputes whether a person is in the 'correct' category," said Alex Rate, legal director of the Montana ACLU.
Then there are the changing attitudes about children who question their gender. A father from rural Montana said in an anonymous letter to the Montana legislature that five years ago he would have supported both bills.
Those were the years he had tried to prevent his child, born a boy, from expressing identity as a girl.
"After I found my 12-year-old sitting in the dark with a handgun one night, I realized I need to learn from my daughter who she was, instead of me trying to tell her who I thought she was," the man wrote.
Treatment, he added, saved her life. And he no longer supports bills like the ones before the Montana Legislature.
On Jan. 14 at 8:43 p.m., Patrick McKenzie tweeted a plea for tech engineers to help him set up a website to track covid-19 vaccine availability in California. McKenzie, who heads a Bay Area financial services tech company, issued the call to "anyone in California [who] wants to do a civtech project which matters."
The response was swift and resounding. In less than an hour, someone had set up a chat group for brainstorming the effort. By 12:24 a.m. the next day, 70 people had joined. By noon, the tracker was live. Now, just over two weeks later, the site, called VaccinateCA, involves about 300 volunteers. They operate what is essentially a call bank, dialing pharmacies and hospitals for updates about covid vaccine supplies and posting the results on the site.
The quick and ardent response to McKenzie's pitch highlights just how desperate Californians have become amid a chaotic vaccine rollout that has overwhelmed public health departments. Similar crowdsourced websites have gone up in Georgia, New Jersey, Michigan, Texas and other states.
While helpful to some, however, the websites and apps have only compounded the frustration for many people seeking vaccines for themselves or loved ones but can't secure an appointment no matter how hard they try because supply is limited. Critics say that, at best, they simply enable the tech-savvy and people with time on their hands — two groups that don't necessarily overlap with those most in need of covid vaccination — while leaving poor and minority communities behind.
"If you have an hourly job, you're not going to be on your phone every minute," said Jeffrey Klausner, a professor of preventive medicine at the University of Southern California's Keck School of Medicine, who likened the process of securing a vaccination to "The Hunger Games."
"We need call centers. We need people going out into the community door to door, registering people as if there were a census. You need to somewhat structure the system to allow and prioritize access for the most disadvantaged — reversing structural racism, or factors that exclude certain groups."
Rhonda Smith, executive director of California Black Health Network, said it's vital to reach out to communities where vaccine hesitancy is strong. While technology can help centralize information, building trust and relationships is what's needed to convince skeptical communities of the vaccines' importance.
"They aren't going to just respond to a text message or a random app," she said.
Platforms like VaccinateCA acknowledge their limitations. "We recognize that this isn't our core strength today," said Zoelle Egner, a volunteer with the site. But the app could be a resource for organizations that work with disenfranchised communities, she said.
California is also working with an online platform called My Turn, developed by Salesforce, that will alert residents when they are eligible for vaccination and facilitate sign-ups. The state announced last week that it had hired insurance company Blue Shield of California to create and manage a statewide vaccination network.
While some platforms offer a central place to search for pharmacies and links to sign up for updates from hospital systems or local governments, they can't provide more vaccine-filled needles. With limited supply, a thousand allocation snafus and conflicting information about who is eligible, consumers find themselves signing up for wait lists and spending hours trying to snag appointments, only to be told there's no vaccine for them or their loved ones. The apps can't do anything about that.
Many users have found success. Melissa Reyes, who lives in Sacramento, was able to get her 76-year-old mother vaccinated after checking VaccinateCA. She called four pharmacies listed on the site before she hit the jackpot with her local Save Mart. She tweeted to VaccinateCA to thank the group.
For many others, success rests on luck: clicking through to the right pharmacy or supermarket website at the right time before all appointments are gone. For every exuberant user, there are often multiple frustrated people unable to land an appointment.
Misa Ahmad, whose 83-year-old father lives in Oakland, said VaccinateCA didn't work for her. She ended up deciding to wait for her father's healthcare provider, Kaiser Permanente, to contact him with an opening. (KHN, which produces California Healthline, is not affiliated with Kaiser Permanente.)
Her VaccinateCA search involved "going through trying to look at all of the places and figure out what they are, where they are, if they would be optimal for him, and then locating some and then trying to see if I can get an appointment. That is a very time-consuming process. And, unfortunately, my father has limited technological ability."
Other users have found that the information provided is sometimes inaccurate, a product of ever-changing state and county regulations. Many Californians are still finding that, while Gov. Gavin Newsom announced that residents age 65 and older are eligible for the vaccines, their counties are still allowing only those 75 and older to sign up. Who is eligible for vaccination differs by county.
"What's really frustrating is I keep getting texts and emails from the Department of Public Health saying, 'You're eligible for the shot; call your healthcare providers,' and you call and no one is giving it to your age yet," said Leanna Dawydak, a 66-year-old San Franciscan. She estimates she's spent an average of four hours a day since Jan. 13 trying to find an appointment, only to be told she's too young, lives in the wrong county or gets her care from the wrong healthcare system.
Some localities have purchased or set up their own apps, with mixed results. Orange County reportedly paid $1.2 million to tech company CuraPatient to create an app for organizing the vaccination of county residents. County public health officials had registered 493,000 people as of Jan. 29, with about 81,320 having received a vaccine.
But the app, Othena, has gotten bad reviews. Residents say its interface is unfriendly, with bugs that have resulted in people being improperly scheduled for appointments.
"It's a disaster. It's a total mess," said Suzanne Haggerty, 60.
Haggerty, who has severe asthma, scheduled a vaccination through Othena, drove 45 minutes from her home to the vaccination site at Disneyland and spent two hours standing in line with her appointment and barcode in hand. She was turned away once she got to the front. A glitch in the app had cleared her for an appointment available only to those 65 and older. Staffers told her that about 50 people a day were being turned away for the same reason.
Still, some tech companies are confident they can ameliorate the scheduling fiasco.
Zocdoc, a web platform founded in 2007 to bring patients in for last-minute appointments with doctors, built a pilot program with New York's Mount Sinai Hospital late last year for scheduling covid vaccinations for hospital staffers. Now the company has begun a partnership with the Chicago city government to offer its vaccine scheduler tool — free — to care organizations and public health agencies, said Zocdoc founder and CEO Oliver Kharraz. His company's years of experience with scheduling software is a huge advantage, he said.
Zocdoc is the main platform for Chicago residents to make vaccination appointments free of charge, aggregating real-time appointment openings from various vaccination sites and care organizations. But vaccine supplies and shipments are out of his control, Kharraz said.
"I want to make the following disclaimer," he said. "The vaccines, per se, are in short supply. So, I think Chicagoans should expect limited availability."
Thousands of counterfeit 3M respirators have slipped past U.S. investigators in recent months, making it to the cheeks and chins of healthcare workers and perplexing experts who say their quality is not vastly inferior to the real thing.
N95 masks are prized for their ability to filter out 95% of the minuscule particles that can carry covid-19. Yet the fakes pouring into the country have fooled healthcare leaders from coast to coast. As many as 1.9 million counterfeit 3M masks made their way to about 40 hospitals in Washington state, according to the state hospital association, spurring officials to alert staff members and pull them off the shelf. The elite Cleveland Clinic recently conceded that, since November, it had inadvertently distributed 3M counterfeits to hospital staffers. A Minnesota hospital made a similar admission.
Nurses at Jersey Shore University Medical Center have been highly suspicious since November that the misshapen and odd-smelling "3M" masks they were given are knockoffs, their concerns fueled by mask lot numbers matching those the company listed online as possible fakes.
"People have been terrified for the last 2½ months," said Daniel Hayes, a nurse and union vice president at the New Jersey hospital. "They felt like they were taking their lives in their hands, and they don't have anything else to wear."
According to 3M, the leading U.S. producer of N95s, more than 10 million counterfeits have been seized since the pandemic began and the company has fielded 10,500 queries about the authenticity of N95s. The company said in a Jan. 20 letter that its work in recent months led to the seizure of fake 3M masks "sold or offered to government agencies" in at least six states. After KHN sent photos of the masks the New Jersey nurses questioned, a 3M spokesperson referred to them as "the counterfeits you identified."
At KHN's request, ECRI agreed to test the masks that sparked the New Jersey nurses' concern. Tests of a dozen masks showed they filtered out 95% or more of the 0.3-micron particles they're expected to catch. (ECRI is a nonprofit that helps health providers assess the quality of medical technology.)
ECRI engineering director Chris Lavanchy said several health organizations across the U.S. have recently made similar requests for tests of apparently fake 3M masks that the company warned about.
Lavanchy said the results have shown similarly high filtration levels, but also higher breathing resistance than expected. He said such resistance can fatigue the person wearing the mask or cause it to lift off the face, letting in unfiltered air.
"We're kind of scratching our heads trying to understand this situation, because it's not as black-and-white as I would have expected," Lavanchy said. "I've looked at other masks we knew were counterfeit and they usually perform terribly."
3M spokesperson Jennifer Ehrlich said a critical feature of N95 masks, aside from filtration, is how well they fit.
"Without a proper seal and fit, respirators are not filtering [properly] — gaps could allow air to enter," Ehrlich said via email.
The materials management team for Hackensack Meridian Health, which owns the Jersey Shore hospital, is "working with an independent lab on validating the quality and compliance of specific lot numbers of 3M N95 respirators the company identified as potentially problematic," according to a company statement.
When the Washington State Hospital Association purchased 300,000 N95s in December, it sent samples to hospital leaders, who said they appeared legitimate.
"It's not like we just ordered them sight unseen," said Beth Zborowski, spokesperson for the association. "We had two major medical centers in Seattle … look at the quality, straps, cut them open and decide 'This looks like it's the real deal' before they bought them."
She said major hospital systems in the state bought more on their own, adding up to 1.9 million.
Throughout the pandemic, workers have also been provided with Chinese-made KN95 masks — approved by U.S. regulators on an emergency basis — that turned out to be far less effective than billed.
In April, the Food and Drug Administration, responding to dire shortages of high-quality masks for healthcare workers, opened the door to KN95s, which are supposed to offer the same level of protection as N95s.
Yet, as months passed, researchers from the Centers for Disease Control and Prevention, Harvard, MIT and ECRI discovered that KN95s did not meet the high standard: 40% to 70% of the KN95s failed their tests and some filtered out only 30% of the tiny particles.
More than 3,400 front-line healthcare workers have died during the pandemic, KHN and The Guardian have found in the ongoing Lost on the Frontline project, and many families have raised concerns about inadequate protective gear. Yet the actual harm that any substandard or knockoff device presents remains difficult to assess.
Researchers say it's unethical to conduct a study that involves giving health workers a product they know is less protective than another when lives are at stake. And short of performing in-depth genome sequencing on each worker's viral strain, it's hard to know exactly how any person got sick.
At the U.S. border, safeguarding the medical gear supply is a high priority, said Michael Rose, a section chief in U.S. Immigration and Customs Enforcement's global trade division.
His job for the past year has been investigating a wide variety of covid-related scams. Of all those cases, Rose said, the flood of fake 3M masks from China has been the most consistent.
"It's definitely cat and mouse," Rose said. "Where we might get better [at intercepting counterfeits], they can ship elsewhere, change the name of the company and keep going."
Many investigations lead to seizures in the nation's massive ports of entry, where enormous cargo ships and planes carry giant containers of goods. There, agents might spot a dead giveaway like a box just off a ship from Shenzhen, China, marked "3M" and "Made in the USA."
"I'd like to say that makes it easier, and it does, but the sheer volume of them coming in …" he said. "It's like a needle in a stack of needles."
The demand for highly protective masks has surged twelvefold during the pandemic, said Chaun Powell, vice president of disaster response for Premier, a major hospital supply company. The national medical use of N95s used to be about 25 million a year, but it soared to 300 million last year, he said.
That meant hospitals and other health providers couldn't rely on their usual sources of products to meet their need for personal protective gear.
Healthcare providers "had to find alternatives," Powell said, "and that created opportunities for fraudulent manufacturers to be opportunistic and sneak in."
Many of Rose's investigations originate from customer complaints about apparent fakes to 3M, which forwards reports to his team. Others come from hospitals, health systems or eagle-eyed first responders who email Covid19fraud@dhs.gov.
Border Patrol agents, working with Rose's team and anticipating shipments from known counterfeiters, have seized thousands of fake N95s in recent weeks, including 100,080 at a port of entry near El Paso, Texas, in December and 144,000 flown from Hong Kong to New York. In all, federal officials say, they have seized more than 14.5 million masks, many fake 3Ms but other counterfeit cloth or surgical masks as well.
In New Jersey, staff members began complaining in November about their masks to union leaders at Jersey Shore University Medical Center, said Kendra McCann, president of the hospital's Health Professionals and Allied Employees union local.
The masks, which seemed flimsy and made some workers' faces burn, were turning up in every unit of the hospital. After a union member discovered a letter on the 3M website pinpointing their mask lots as potentially fake, managers began to remove the masks but suspected fakes continued to turn up, McCann said.
Hackensack Meridian said a daily call with hospital leaders includes "reminders to report any suspect PPE so that it can be removed immediately and evaluated."
The episode added stress to caregivers who are terrified about getting infected and bringing the virus into their own homes.
"Nurses are scared to death," McCann said in mid-January as the masks continued to pop up, "because they're not being provided with the proper PPE."
The concerns arising in western North Carolina, a region tucked between Asheville to the east and the Appalachian Mountains to the west, provide a window into the challenges facing health workers across the country.
Kim Wagenaar has been preparing to bring covid-19 vaccines to western North Carolina for months.
She’s signed up the community health center she operates in Asheville to receive and distribute the doses. She’s ordered a subzero freezer to store the Pfizer-BioNTech vaccine and transport it to rural counties. She’s also allocated her staff between covid testing sites and vaccine clinics.
But those logistics make up only half the equation, said Wagenaar, CEO of Western North Carolina Community Health Services.
Because the vaccines have a limited shelf life, “you want to make sure you’re ordering what you think you’ll be able to give,” she said. “That’s where messaging comes in.”
While many of the health center’s patients are eager to get their shots, Wagenaar said, she’s worried about other populations in the region — from communities of color to migrant farmworkers and people who live on the street — who may be reluctant to be vaccinated, even though they are more likely to contract the virus.
“It’s so important in this time to go beyond our normal education to reach more communities,” she said.
The concerns arising in western North Carolina, a region tucked between Asheville to the east and the Appalachian Mountains to the west, provide a window into the challenges facing health workers across the country. Not only do they have to transport the vaccine to vulnerable populations, but they also must address those individuals’ concerns and encourage them to take the shots.
Now, a host of grassroots organizations in western North Carolina are taking to the streets, to WhatsApp chats and to Zoom lunches to close that gap.
‘You Can Be a Community Hero’
When Adrienne Sigmon talks to people living on the street in Asheville about covid vaccines, she doesn’t suggest the medical system is trying to help them.
As someone who was unsheltered for two years, she knows mistrust of health workers runs deep. Many people who are homeless receive poor care or no care at all.
Instead, Sigmon frames the vaccine as an opportunity to help society. “By getting vaccinated, you can be a community hero,” she tells them.
“Giving people that ownership and sense that they can help in this small way is empowering,” she said.
That’s how Sigmon felt four years ago when she joined the street medic team at BeLoved Asheville, a nonprofit that tackles issues like homelessness and hunger. The team trains people who are currently or formerly unsheltered in basic medical skills, from first aid to wound care and overdose prevention.
“Instead of other people coming in to say, ‘I’m going to fix you and serve you,’ we learn to take care of ourselves and the community,” said Sigmon, who is now a lead street medic.
On Mondays and Thursdays, Sigmon and her team travel through downtown Asheville and the rural corners of Buncombe County to hand out lifesaving supplies like insulated tents, sleeping bags, thermal socks, face masks and hand sanitizer to those living outdoors. Now they also pass out flyers about the vaccines and ask people if they’ll pledge to get their shots.
Some refuse, Sigmon said. They may suffer from mental illness, not believe covid is real or not care if they get sick.
But more often, people have questions: Will I get sick if I get a vaccine? Is it safe, since it came out so quickly?
Sigmon assures them that the vaccines don’t contain the coronavirus and that, although the development process was quick, it built on a decade of research.
Of the hundreds of people Sigmon and her team have spoken with, about 75% have agreed to be vaccinated.
‘Think About Your Older Roommates’
Migrant farmworkers begin arriving in western North Carolina in February, when they work in greenhouses, and stay through the fall or early winter, harvesting crops and Christmas trees.
This past year, conversations about covid vaccines began in July, said Jessica Rodriguez, outreach coordinator for Vecinos Farmworker Health Program, which provides medical services to about 500 migrant workers in the region.
At the time, covid outbreaks across two farms sickened nearly 100 men. “When will this be over?” the workers asked her.
Since then, Rodriguez and her team have been updating the farmworkers about the vaccines.
Men in their 50s and 60s have generally been eager, Rodriguez said. But the younger workers, some just 18 years old, have been hesitant. They’ve received conflicting messages about the seriousness of the virus from family back home, and sometimes from their home countries’ governments.
“Think about your older roommates,” Rodriguez tells them in Spanish. The workers live in tight quarters, often old converted hotels tucked behind a main road or cabins perched on the side of a mountain, with anywhere from five to 50 men together.
“You could get covid and feel nothing at all,” Rodriguez said, “but if you pass it to someone who is older or has diabetes, he could end up in the hospital.”
Rodriguez also posts fact sheets in Spanish on her WhatsApp story, where anyone with her phone number can view them. That’s been particularly popular, she said. Since the workers’ schedules rarely allow them to check for health advisories from the White House or watch the state health secretary’s afternoon telecasts, updates from Rodriguez and her team have been crucial. Even workers she met a few years ago who now live in other countries have messaged her to say thanks for the information on WhatsApp.
Her team also provides in-person education at the camps, where they often bring food and medical supplies.
“As soon as we’d arrive, the whole crew would come out,” she said. “Some of our covid education sessions went up to an hour because the guys had so many questions.”
‘You All Are My Ambassadors’
Kathey Avery, a community health nurse, has been hosting monthly lunch-and-learn meetings for a group of 14 women for nearly a decade.
The youngest attendee is in her 50s, and the oldest is 94. Most are Black women who go to church, volunteer in the community and are in regular contact with their extended families, said Avery, who also co-chairs the Institute for Prevention and Healthcare Advocacy, a grassroots organization that addresses health disparities in Buncombe County.
“Whenever I need to get information out, I tell them, ‘You all are my ambassadors,’” said Avery, who is Black too. “That always makes them smile.”
In the past, Avery talked to them about topics like chronic disease and nutrition. During the pandemic, she’s moved the lunch-and-learns to Zoom and talks about covid symptoms, testing and, now, vaccines.
Black people’s history of mistreatment in the U.S. makes the vaccines a tough sell, Avery said. Many worry about a repeat of the infamous Tuskegee trial, in which Black patients with syphilis were purposely left untreated. Others point to the brutal response to Black Lives Matter protests and efforts to suppress Black votes.
That’s why education about the vaccines has to come from a place they trust, Avery said.
She tries to keep it simple, using a one-page document she created with answers to questions like “What is the definition of ‘vaccine’?” and “What is the definition of ‘virus’?”
It’s a matter of homing in on a couple of points and relating it to “something you know they already know,” Avery said.
Then you build on that knowledge in a second conversation, and a third and fourth.
“If you’re not talking to people and building trust over time,” Avery said, “they won’t listen.”
Alcoholism-related liver disease was a growing problem even before the pandemic, with 15 million people diagnosed with the condition around the country, and with hospitalizations doubling over the past decade.
This article was published on Wednesday, February 10, 2021 in Kaiser Health News.
As the pandemic sends thousands of recovering alcoholics into relapse, hospitals across the country have reported dramatic increases in alcohol-related admissions for critical diseases like alcoholic hepatitis and liver failure.
But the pandemic has dramatically added to the toll. Although national figures are not available, admissions for alcoholic liver disease at Keck Hospital of the University of Southern California were up 30% in 2020 compared with 2019, said Dr. Brian Lee, a transplant hepatologist who treats the condition in alcoholics. Specialists at hospitals affiliated with the University of Michigan, Northwestern University, Harvard University and Mount Sinai Health System in New York City said rates of admissions for alcoholic liver disease have leapt by up to 50% since March.
High levels of alcohol ingestion lead to a constellation of liver diseases due to toxic byproducts associated with the metabolism of ethanol. In the short term, these byproducts can trigger extensive inflammation that leads to hepatitis. In the long term, they can lead to the accumulation of fatty tissue, as well as the scarring characteristic of cirrhosis — which can, in turn, cause liver cancer.
Since the metabolism of alcohol varies among individuals, these diseases can show up after only a few months of heavy drinking. Some people can drink heavily without experiencing side effects for a long time; others can suffer severe immune reactions that rapidly send them to the hospital.
Leading liver disease specialists and psychiatrists believe the isolation, unemployment and hopelessness associated with covid-19 are driving the explosion in cases.
"There's been a tremendous influx," said Dr. Haripriya Maddur, a hepatologist at Northwestern Medicine. Many of her patients "were doing just fine" before the pandemic, having avoided relapse for years. But subject to the stress of the pandemic, "all of a sudden, [they] were in the hospital again."
Across these institutions, the age of patients hospitalized for alcoholic liver disease has dropped. A trend toward increased disease in people under 40 "has been alarming for years," said Dr. Raymond Chung, a hepatologist at Harvard University and president of the American Association for the Study of Liver Disease. "But what we're seeing now is truly dramatic."
Maddur has also treated numerous young adults hospitalized with the jaundice and abdominal distension emblematic of the disease — a pattern she attributes to the pandemic-era intensification of economic struggles faced by the demographic. At the same time these young adults may be entering the housing market or starting a family, entry-level employment, particularly in the vast, crippled hospitality industry, is increasingly hard to come by. "They have mouths to feed and bills to pay, but no job," she said, "so they turn to booze as the last coping mechanism remaining."
Women may be suffering disproportionately from alcoholic liver disease during the pandemic because they metabolize alcohol at slower rates than men. Lower levels of the enzyme responsible for degrading ethanol leads to higher levels of the toxin in the blood and, in turn, more extensive organ damage in women than in men who drink the same amount. (The CDC recommends that women have one drink or less per day, compared with two or fewer for men.)
Socially, the "stress of the pandemic has, in some ways, particularly targeted women," said Dr. Jessica Mellinger, a hepatologist at the University of Michigan. Lower wages, less job stability and the burdens of parenting tend to fall more heavily on women's shoulders, she said.
"If you have all of these additional stressors, with all of your forms of support gone — and all you have left is the bottle — that's what you'll resort to," Mellinger said. "But a woman who drinks like a man gets sicker faster."
Nationwide, more adults are turning to the bottle during the pandemic: One study found rates of alcohol consumption in spring 2020 were up 14% compared with the same period in 2019 and drinkers consumed nearly 30% more than in pre-pandemic months. Unemployment, isolation, lack of daily structure and boredom all have increased the risk of heightened alcohol use.
"The pandemic has brought out our uneasy relationship with alcohol," said Dr. Timothy Fong, an addiction psychiatrist at UCLA. "We've welcomed it into our homes as our crutch and our best friend."
These relapses, and the hospitalizations they cause, can be life-threatening. More than 1 in 20 patients with alcohol-related liver failure die before leaving the hospital, and alcohol-related liver disease is the leading cause for transplantation.
The disease also makes people more susceptible to covid: Patients with liver disease die of covid at rates three times higher than those without it, and alcohol-associated liver disease has been found to increase the risk of death from covid by an additional 79% to 142%.
Some physicians, like Maddur, are concerned the stressors leading to increased alcohol consumption and liver disease may stretch well into the future — even after lockdowns lift. "I think we're only on the cusp of this," she said. "Quarantine is one thing, but the downturn of the economy, that's not going away anytime soon."
Others, like Lee, are more optimistic — albeit cautiously. "The vaccine is coming to a pharmacy near you, covid-19 will end, and things will begin to get back to normal," he said. "But the real question is whether public health authorities decide to act in ways that combat [alcoholic liver disease].
"Because people are just fighting to cope day to day right now."