Ted Howard started taking Truvada a few years ago because he wanted to protect himself against HIV, the virus that causes AIDS. But the daily pill was so pricey he was seriously thinking about giving it up.
Under his insurance plan, the former flight attendant and customer service instructor owed $500 in copayments every month for the drug and an additional $250 every three months for lab work and clinic visits.
Luckily for Howard, his doctor at Las Vegas' Huntridge Family Clinic, which specializes in LGBTQ care, enrolled him in a clinical trial that covered his medication and other costs in full.
"If I hadn't been able to get into the trial, I wouldn't have kept taking PrEP," said Howard, 68, using the shorthand term for "preexposure prophylaxis." Taken daily, these drugs — like Truvada — are more than 90% effective at preventing infection with HIV.
Starting this month, most people with private insurance will no longer have to decide whether they can afford to protect themselves against HIV. Most health plans must begin to cover the drugs then without charging consumers anything out-of-pocket (some plans already began doing so last year).
Drugs in this category — Truvada, Descovy and, newly available, a generic version of Truvada — received an "A" recommendation by the U.S. Preventive Services Task Force. Under the Affordable Care Act, preventive services that receive an "A" or "B" rating by the task force, a group of medical experts in prevention and primary care, must be covered by most private health plans without making members share the cost, usually through copayments or deductibles. Only plans that are grandfathered under the health law are exempt.
The task force recommended PrEP for people at high risk of HIV infection, including men who have sex with men and injection drug users.
In the United States, more than 1 million people live with HIV, and nearly 40,000 new HIV cases are diagnosed every year. Yet fewer than 10% of people who could benefit from PrEP are taking it. One key reason is that out-of-pocket costs can exceed $1,000 annually, according to a study published in the American Journal of Public Health last year. Required periodic blood tests and doctor visits can add hundreds of dollars to the cost of the drug, and it's not clear if insurers are required to pick up all those costs.
"Cost sharing has been a problem," said Michael Crews, policy director at One Colorado, an advocacy group for the LGBTQ community. "It's not just getting on PrEP and taking a pill. It's the lab and clinical services. That's a huge barrier for folks."
Whether you're shopping for a new plan during open enrollment or want to check out what your current plan covers, here are answers to questions you may have about the new preventive coverage requirement.
Q: How can people find out whether their health plan covers PrEP medications without charge?
The plan's list of covered drugs, called a formulary, should spell out which drugs are covered, along with details about which drug tier they fall into. Drugs placed in higher tiers generally have higher cost sharing. That list should be online with the plan documents that give coverage details.
Sorting out coverage and cost sharing can be tricky. Both Truvada and Descovy can also be used to treat HIV, and if they are taken for that purpose, a plan may require members to pay some of the cost. But if the drugs are taken to prevent HIV infection, patients shouldn't owe anything out-of-pocket, no matter which tier they are on.
In a recent analysis of online formularies for plans sold on the ACA marketplaces, Carl Schmid, executive director of the HIV + Hepatitis Policy Institute, found that many plans seemed out of compliance with the requirement to cover PrEP without cost sharing this year.
But representatives for Oscar and Kaiser Permanente, two insurers that were called out in the analysis for lack of compliance, said the drugs are covered without cost sharing in plans nationwide if they are taken to prevent HIV. Schmid later revised his analysis to reflect Oscar's coverage.
Coverage and cost-sharing information needs to be transparent and easy to find, Schmid said.
"I acted like a shopper of insurance, just like any person would do," he said. "Even when the information is correct, [it's so] difficult to find [and there's] no uniformity."
It may be necessary to call the insurer directly to confirm coverage details if information on the website is unclear.
Q: Are all three drugs covered without cost sharing?
Health plans have to cover at least one of the drugs in this category — Descovy and the brand and generic versions of Truvada — without cost sharing. People may have to jump through some hoops to get approval for a specific drug, however. For example, Oscar plans sold in 18 states cover the three PrEP options without cost sharing. The generic version of Truvada doesn't require prior authorization by the insurer. But if someone wants to take the name-brand drug, they have to go through an approval process. Descovy, a newer drug, is available without cost sharing only if people are unable to use Truvada or its generic version because of clinical intolerance or other issues.
Q: What about the lab work and clinical visits that are necessary while taking PrEP? Are those services also covered without cost sharing?
That is the thousand-dollar question. People who are taking drugs to prevent HIV infection need to meet with a clinician and have bloodwork every three months to test for HIV, hepatitis B and sexually transmitted infections, and to check their kidney function.
The task force recommendation doesn't specify whether these services must also be covered without cost sharing, and advocates say federal guidance is necessary to ensure they are free.
"If you've got a high-deductible plan and you've got to meet it before those services are covered, that's going to add up," said Amy Killelea, senior director of health systems and policy at the National Alliance of State & Territorial AIDS Directors. "We're trying to emphasize that it's integral to the intervention itself."
A handful of states have programs that help people cover their out-of-pocket costs for lab and clinical visits, generally based on income.
There is precedent for including free ancillary care as part of a recommended preventive service. After consumers and advocates complained, the Centers for Medicare & Medicaid Services (CMS) clarified that under the ACA removing a polyp during a screening colonoscopy is considered an integral part of the procedure and patients shouldn't be charged for it.
CMS officials declined to clarify whether PrEP services such as lab work and clinical visits are to be covered without cost sharing as part of the preventive service and noted that states generally enforce such insurance requirements. "CMS intends to contact state regulators, as appropriate, to discuss issuer's compliance with the federal requirements and whether issuers need further guidance on which services associated with PrEP must be covered without cost sharing," the agency said in a statement.
Q: What if someone runs into roadblocks getting a plan to cover PrEP or related services without cost sharing?
If an insurer charges for the medication or a follow-up visit, people may have to go through an appeals process to fight it.
"They'd have to appeal to the insurance company and then to the state if they don't succeed," said Nadeen Israel, vice president of policy and advocacy at the AIDS Foundation of Chicago. "Most people don't know to do that."
Q: Are uninsured people also protected by this new cost-sharing change for PrEP?
Unfortunately, no. The ACA requirement to cover recommended preventive services without charging patients applies only to private insurance plans. People without insurance don't benefit. Gilead, which makes both Truvada and Descovy, has a patient assistance program for the uninsured.
Last spring, New Jersey emergency room nurse Maritza Beniquez saw "wave after wave" of sick patients, each wearing a look of fear that grew increasingly familiar as the weeks wore on.
Soon, it was her colleagues at Newark's University Hospital — the nurses, techs and doctors with whom she had been working side by side — who turned up in the ER, themselves struggling to breathe. "So many of our own co-workers got sick, especially toward the beginning; it literally decimated our staff," she said.
By the end of June, 11 of Beniquez's colleagues were dead. Like the patients they had been treating, most were Black and Latino.
"We were disproportionately affected because of the way that Blacks and Latinos in this country have been disproportionately affected across every [part of] our lives — from schools to jobs to homes," she said.
Now Beniquez feels like a vanguard of another kind. On Dec. 14, she became the first person in New Jersey to receive the coronavirus vaccine — and was one of many medical workers of color featured prominently next to headlines heralding the vaccine's arrival at U.S. hospitals.
It was a joyous occasion, one that kindled the possibility of again seeing her parents and her 96-year-old grandmother, who live in Puerto Rico. But those nationally broadcast images were also a reminder of those for whom the vaccine came too late.
Covid-19 has taken an outsize toll on Black and Hispanic Americans. And those disparities extend to the medical workers who have intubated them, cleaned their bedsheets and held their hands in their final days, a KHN/Guardian investigation has found. People of color account for about 65% of fatalities in cases in which there is race and ethnicity data.
One recent study found healthcare workers of color were more than twice as likely as their white counterparts to test positive for the virus. They were more likely to treat patients diagnosed with covid, more likely to work in nursing homes — major coronavirus hotbeds — and more likely to cite an inadequate supply of personal protective equipment, according to the report.
In a national sample of 100 cases gathered by KHN/The Guardian in which a healthcare worker expressed concerns over insufficient PPE before they died of covid, three-quarters of the victims were identified as Black, Hispanic, Native American or Asian.
"Black healthcare workers are more likely to want to go into public-sector care where they know that they will disproportionately treat communities of color," said Adia Wingfield, a sociologist at Washington University in St. Louis who has studied racial inequality in the healthcare industry. "But they also are more likely to be attuned to the particular needs and challenges that communities of color may have," she said.
Not only do many Black healthcare staffers work in lower-resourced health centers, she said, they are also more likely to suffer from many of the same co-morbidities found in the general Black population, a legacy of systemic inequities.
And they may fall victim to lower standards of care. Dr. Susan Moore, a 52-year-old Black pediatrician in Indiana, was hospitalized with covid in November and, according to a video posted to her Facebook account, had to ask repeatedly for tests, remdesivir and pain medication. She said her white doctor dismissed her complaints of pain and she was discharged, only to be admitted to another hospital 12 hours later.
Numerous studies have found Black Americans often receive worse medical care than their white counterparts: In March, a Boston biotech firm published an analysis showing physicians were less likely to refer symptomatic Black patients for coronavirus tests than symptomatic whites. Doctors are also less likely to prescribe painkillers to Black patients.
"If I was white, I wouldn't have to go through that," Moore said in the video posted from her hospital bed. "This is how Black people get killed, when you send them home, and they don't know how to fight for themselves." She died on Dec. 20 of covid complications, her son Henry Muhammad told news outlets.
Along with people of color, immigrant health workers have suffered disproportionate losses to covid-19. More than one-third of healthcare workers to die of covid in the U.S. were born abroad, from the Philippines to Haiti, Nigeria and Mexico, according to a KHN/Guardian analysis of cases for which there is data. They account for 20% of healthcare workers in the U.S. overall.
Dr. Ramon Tallaj, a physician and chairman of Somos, a nonprofit network of healthcare providers in New York, said immigrant doctors and nurses often see patients from their own communities — and many working-class, immigrant communities have been devastated by covid.
"Our community is essential workers. They had to go to work at the beginning of the pandemic, and when they got sick, they would come and see the doctor in the community," he said. Twelve doctors and nurses in the Somos network have died of covid, he said.
Dr. Eriberto Lozada was an 83-year-old family physician in Long Island, New York. He was still seeing patients out of his practice when cases began to climb last spring. Originally from the Philippines, a country with a history of sending skilled medical workers to the United States, he was proud to be a doctor and "proud to have been an immigrant who made good," his son James Lozada said.
Lozada's family members remember him as strict and strong-willed — they affectionately called him "the king." He instilled in his children the importance of a good education. He died in April.
Two of his four sons, John and James Lozada, are doctors. Both were vaccinated last month. Considering all they had been through, John said, it was a "bittersweet" occasion. But he thought it was important for another reason — to set an example for his patients.
The inequities in covid infections and deaths risk fueling distrust in the vaccine. In a recent Pew study, around 42% of Black respondents said they would "definitely or probably" get the vaccine compared with 60% of the general population.
This makes sense to Patricia Gardner, a Black, Jamaican-born nursing manager at Hackensack University Medical Center in New Jersey who has been infected with the coronavirus along with family members and colleagues. "A lot of what I hear is, 'How is it that we weren't the first to get the care, but now we're the first to get vaccinated?'" she said.
Like Beniquez, the nurse in Newark, she was vaccinated on Dec. 14. "For me to step up to say, 'I want to be in the first group' — I'm hoping that sends a message," she said.
Beniquez said she felt the weight of that responsibility when she signed on to be the first person in her state to receive the vaccine. Many of her patients have expressed skepticism over the vaccine, fueled, she said, by a health system that has failed them for years.
"We remember the Tuskegee trials. We remember the 'appendectomies'" — reports that women were forcibly sterilized in a U.S. Immigration and Customs Enforcement detention center in Georgia. "These are things that have happened to this community to the Black and Latino communities over the last century. As a healthcare worker, I have to recognize that their fears are legitimate and explain 'This is not that,'" she said.
Beniquez said her joy and relief over receiving the vaccine are tempered by the reality of rising cases in the ER. The adrenaline she and her colleagues felt last spring is gone, replaced by fatigue and wariness of the months ahead.
Her hospital placed 11 trees in the lobby, one for each employee who has died of covid; they have been adorned with remembrances and gifts from their colleagues.
There is one for Kim King-Smith, 53, the friendly EKG technician, who visited friends of friends or family whenever they ended up in the hospital.
One for Danilo Bolima, 54, the nurse from the Philippines who became a professor and was the head of patient care services.
One for Obinna Chibueze Eke, 42, the Nigerian nursing assistant, who asked friends and family to pray for him when he was hospitalized with covid.
"Each day, we remember our fallen colleagues and friends as the heroes who helped keep us going throughout this pandemic and beyond," hospital president and CEO Dr. Shereef Elnahal said in a statement. "We can never forget their contributions and their collective passion for this community, and each other."
Just outside the building, stands a 12th tree. "It's going to be for whoever else we lose in this battle," Beniquez said.
This story is part of "Lost on the Frontline," an ongoing project from The Guardian and Kaiser Health News that aims to document the lives of healthcare workers in the U.S. who die from COVID-19, and to investigate why so many are victims of the disease. If you have a colleague or loved one we should include, please share their story.
The move is part of a larger push by the Trump administration to use price transparency to curtail prices and create better-informed consumers. Yet there is disagreement on whether it will do so.
This article was published on Tuesday, January 5, 2021 in Kaiser Health News.
Hospitals face the new year with new requirements to post price information they have long sought to obscure: the actual prices negotiated with insurers and the discounts they offer their cash-paying customers.
The move is part of a larger push by the Trump administration to use price transparency to curtail prices and create better-informed consumers. Yet there is disagreement on whether it will do so.
As of Jan. 1, facilities must publicly post on their websites prices for every service, drug and supply they provide. Next year, under a separate rule, health insurers must take similar steps. A related effort to force drugmakers to list their prices in advertisements was struck down by the courts.
With the new hospital rule, consumers should be able to see the tremendous variation in prices for the exact same care among hospitals and get an estimate of what they will be charged for care — before they seek it.
The new data requirements go well beyond the previous rule of requiring hospitals to post their "chargemasters," hospital-generated list prices that bear little relation to what it costs a hospital to provide care and that few consumers or insurers actually pay.
Instead, under the new rule put forward by the Trump administration, "these are the real prices in health care," said Cynthia Fisher, founder and chairman of Patient Rights Advocate, a group that promotes price transparency.
Here's what consumers should know:
What's the Scope of the Intel?
Each hospital must post publicly online — and in a machine-readable format easy to process by computers — several prices for every item and service they provide: gross charges; the actual, and most likely far lower, prices they've negotiated with insurers, including de-identified minimum and maximum negotiated charges; and the cash price they offer patients who are uninsured or not using their insurance.
In addition, each hospital must make available, in a "consumer-friendly format," the specific costs for 300 common and "shoppable" services, such as having a baby, getting a joint replacement, having a hernia repair or undergoing a diagnostic brain scan.
Those 300 bundles of procedures and services must total all costs involved — from the hardware used to the operating room time, to drugs given and the fees of hospital-employed physicians — so patients won't have to attempt the nearly impossible job of figuring it out themselves.
Hospitals can mostly select which services fall into this category, although the federal government has dictated 70 that must be listed — including certain surgeries, diagnostic tests, imaging scans, new patient visits and psychotherapy sessions.
Will Prices Be Exact?
No. At best, these are ballpark figures.
Other factors influence consumers' costs, like the type of insurance plan a patient has, the size and remaining amount of the annual deductible, and the complexity of the medical problem.
An estimate on a surgery, for example, might prove inexact. If all goes as expected, the price quoted likely will be close. But unexpected complications could arise, adding to the cost.
"You'll get the average price, but you are not average," said Gerard Anderson, a professor of health policy and management at the Johns Hopkins Bloomberg School of Public Health who studies hospital pricing.
Tools to help consumers determine in advance the amount of deductible they'll owe are already available from many insurers. And experts expect the additional information being made available this month will prompt entrepreneurs to create their own apps or services to help consumers analyze the price data.
For now, though, the hospital requirements are a worthy start, say experts.
"It's very good news for consumers," said George Nation, a professor of law and business at Lehigh University who studies hospital pricing. "Individuals will be able to get price information, although how much they are going to use it will remain to be seen."
Will Consumers Use This Info? Who Else Might?
Zack Cooper, an associate professor of public health and economics at Yale, doubts that the data alone will make much of a difference for most consumers.
"It's not likely that my neighbor — or me, for that matter — will go on and look at prices and, therefore, dramatically change decisions about where to get care," he said.
Some cost information is already made available by insurers to their enrollees, particularly out-of-pocket costs for elective services, "but most people don't consult it," he added.
That could be because many consumers carry types of insurance in which they pay flat-dollar copayments for such things as doctor visits, drugs or hospital stays that have no correlation to the underlying charges.
Still, the information may be of great interest to the uninsured and to the increasing number of Americans with high-deductible plans, in which they are responsible for hundreds or even thousands of dollars in costs annually before the insurer begins picking up the bulk of the cost.
For them, the negotiated rate and cash discount information may prove more useful, said Nation at Lehigh.
"If I have a $10,000 deductible plan and it's December and I'm not close to meeting that, I may go to a hospital and try to get the cash price," said Nation.
Employers, however, may have a keen interest in the new data, said James Gelfand, senior vice president at the ERISA Industry Committee, which lobbies on behalf of large employers that offer health insurance to their workers. They'll want to know how much they are paying each hospital compared with others in the area and how well their insurers stack up in negotiating rates, he said.
For some employers, he said, it could be eye-opening to see how hospitals cross-subsidize by charging exorbitant amounts for some things and minimal amounts for others.
"The rule puts that all into the light," said Gelfand. "When an employer sees these ridiculous prices, for the first time they will have the ability to say no." That could mean rejecting specific prices or the hospital entirely, cutting it out of the employer plan's insurance network. But, typically, employers can't or won't limit workers' choices by outright cutting a hospital from an insurance network.
More likely, they may use the information to create financial incentives to use the lowest-cost facilities, said Anderson at Johns Hopkins.
"If I'm an employer, I'll look at three hospitals in my area and say, 'I'll pay the price for the lowest one. If you want to go to one of the other two, you can pay the difference,'" said Anderson.
Will Price Transparency Reduce Overall Health Spending?
Revealing actual negotiated prices, as this rule requires, may push the more expensive hospitals in an area to reduce prices in future bargaining talks with insurers or employers, potentially lowering health spending in those regions.
It could also go the other way, with lower-cost hospitals demanding a raise, driving up spending.
Bottom line: Price transparency can help, but the market power of the various players might matter more.
In some places, where there may be one dominant hospital, even employers "who know they are getting ripped off" may not feel they can cut out a big, brand-name facility from their networks, no matter the price, said Anderson.
Is the Rule Change a Done Deal?
The hospital industry went to court, arguing that parts of the rule go too far, violating their First Amendment rights and also unfairly forcing hospitals to disclose trade secrets. That information, the industry said, can then be used against them in negotiations with insurers and employers.
But the U.S. District Court for the District of Columbia disagreed with the hospitals and upheld the rule, prompting an appeal by the industry. On Dec. 29, the U.S. Court of Appeals for the District of Columbia affirmed that lower-court decision and did not block the rule.
In a written statement last week, the American Hospital Association's general counsel cited "disappointment" with the ruling and said the organization is "reviewing the decision carefully to determine next steps."
Apart from the litigation, the American Hospital Association plans to talk with the incoming Biden administration "to try to persuade them there are some elements to this rule and the insurer rule that are tricky," said Tom Nickels, an executive vice president of the trade group. "We want to be of help to consumers, but is it really in people's best interest to provide privately negotiated rates?"
Fisher thinks so: "Hospitals are fighting this because they want to keep their negotiated deals with insurers secret," she said. "What these rules do is give the American consumer the power of being informed."
Sharon Clark is able to get her life-sustaining cancer drug, Pomalyst — priced at more than $18,000 for a 28-day supply — only because of the generosity of patient assistance foundations.
Clark, 57, a former insurance agent who lives in Bixby, Oklahoma, had to stop working in 2015 and go on Social Security disability and Medicare after being diagnosed with multiple myeloma, a blood cancer. Without the foundation grants, mostly financed by the drugmakers, she couldn't afford the nearly $1,000 a month it would cost her for the drug, since her Medicare Part D drug plan requires her to pay 5% of the list price.
Every year, however, Clark has to find new grants to cover her expensive cancer drug.
"It's shameful that people should have to scramble to find funding for medical care," she said. "I count my blessings, because other patients have stories that are a lot worse than mine."
Many Americans with cancer or other serious medical conditions face similar prescription drug ordeals. It's often worse, however, for Medicare patients. Unlike private health insurance, Part D drug plans have no cap on patients' 5% coinsurance costs once they hit $6,550 in drug spending this year (rising from $6,350 in 2020), except for very low-income beneficiaries.
President-elect Joe Biden favors a cap, and Democrats and Republicans in Congress have proposed annual limits ranging from $2,000 to $3,100. But there's disagreement about how to pay for that cost cap. Drug companies and insurers, which support the concept, want someone else to bear the financial burden.
That forces patients to rely on the financial assistance programs. These arrangements, however, do nothing to reduce prices. In fact, they help drive up America's uniquely high drug spending by encouraging doctors and patients to use the priciest medications when cheaper alternatives may be available.
Growing Expense of Specialty, Cancer Medicines
Nearly 70% of seniors want Congress to pass an annual limit on out-of-pocket drug spending for Medicare beneficiaries, according to a KFF survey in 2019. (KHN is an editorially independent program of KFF.)
The affordability problem is worsened by soaring list prices for many specialty drugs used to treat cancer and other serious diseases. The out-of-pocket cost for Medicare and private insurance patients is often set as a percentage of the list price, as opposed to the lower rate negotiated by insurers.
For instance, prices for 54 orally administered cancer drugs shot up 40% from 2010 to 2018, averaging $167,904 for one year of treatment, according to a 2019 JAMA study. Bristol Myers Squibb, the manufacturer of Clark's drug, Pomalyst, has raised the price 75% since it was approved in 2013, to about $237,000 a year. The company believes "pricing should be put in the context of the value, or benefit, the medicine delivers to patients, healthcare systems and society overall," a spokesperson for Bristol Myers Squibb said via email.
As a result of rising prices, 1 million of the 46.5 million Part D drug plan enrollees spend above the program's catastrophic coverage threshold and face $3,200 in average annual out-of-pocket costs, according to KFF. The hit is particularly heavy on cancer patients. In 2019, Part D enrollees' average out-of-pocket cost for 11 orally administered cancer drugs was $10,470, according to the JAMA study.
The median annual income for Medicare beneficiaries is $26,000.
Medicare patients face modest out-of-pocket costs if their drugs are administered in the hospital or a doctor's office and they have a Medigap or Medicare Advantage plan, which caps those expenses.
But during the past several years, dozens of effective drugs for cancer and other serious conditions have become available in oral form at the pharmacy. That means Medicare patients increasingly pay the Part D out-of-pocket costs with no set maximum.
"With the high cost of drugs today, that 5% can be a third or more of a patient's Social Security check," said Brian Connell, federal affairs director for the Leukemia & Lymphoma Society.
This has forced some older Americans to keep working, rather than retiring and going on Medicare, because their employer plan covers more of their drug costs. That way, they also can keep receiving financial help directly from drugmakers to pay for the costs not covered by their private plan, which isn't allowed by Medicare.
'This Is a Little Nuts'
All this has caused financial and emotional turmoil for people who face a life-threatening disease.
Marilyn Rose, who was diagnosed with chronic myeloid leukemia three years ago, until recently was paying nothing out-of-pocket for her cancer drug, Sprycel, which has a list price of $176,500 a year. That's because Bristol Myers Squibb, the manufacturer, paid her insurance deductible and copays for the drug.
But the self-employed artist and designer, who lives in West Caldwell, New Jersey, recently turned 65 and went on Medicare. The Part D plan offering the best deal on Sprycel charges more than $10,000 a year in coinsurance for the drug.
Rose asked her oncologist if she could switch to an alternative medication, Gleevec, for which she'd pay just $445 a year. But she ultimately decided to stick with Sprycel, which her doctor said is a longer-lasting treatment. She hopes to qualify for financial aid from a foundation to cover the coinsurance but won't know until sometime this month.
"It's just strange you have to make a decision about your treatment based on your finances rather than what's the right drug for you," she said. "I always thought that when I get to Medicare age I'll be able to breathe a sigh of relief. This is a little nuts."
Given the sticker shock, many other patients choose not to fill a needed prescription, or delay filling it. Nearly half of patients who face a price of $2,000 or more for a cancer drug walk away from the pharmacy without it, according to a 2017 study. Fewer than half of Medicare patients with blood cancer received treatment within 90 days of their diagnosis, according to a 2019 study commissioned by the Leukemia & Lymphoma Society.
"If I didn't do really well at scrounging free drugs and getting copay foundations to work with us, my patients wouldn't get the drug, which is awful," said Dr. Barbara McAneny, an oncologist in Albuquerque, New Mexico, and past president of the American Medical Association. "Patients would just say, 'I can't afford it. I'll just die.'"
The high drug prices and coverage gaps have forced many patients to rely on complicated financial assistance programs offered by drug companies and foundations. Under federal rules, the foundations can help Medicare patients as long as they pay for drugs made by all manufacturers, not just by the company funding the foundation.
But Daniel Klein, CEO of the PAN Foundation, which provides drug copay assistance to more than 100,000 people a year, said there are more patients in need than his foundation and others like it can help.
"If you are a normal consumer, you don't know much about any of this until you get sick and all of a sudden you find out you can't afford your medication," he said. Patients are lucky, he added, if their doctor knows how to navigate the charitable assistance maze.
Yet many don't. Daniel Sherman, who trains hospital staff members to navigate financial issues for patients, estimates that fewer than 5% of U.S. cancer centers have experts on staff to help patients with problems paying for their care.
Sharon Clark, who struggles to cover her cancer drugs, works with the Leukemia & Lymphoma Society counseling other patients on how to access helping resources. "People tell me they haven't started treatment because they don't have money to pay," she said. "No one in this country should have to choose between housing, food or medicine. It should never be that way, never."
As covid-19 has spread from big cities to rural communities, it has overwhelmed morgues, funeral homes and religious leaders, required ingenuity and even changed the rituals of honoring the dead.
This article was published on Monday, January 4, 2021 in Kaiser Health News.
Funeral director Kevin Spitzer has been overwhelmed with covid-related deaths in the small city of Aberdeen, South Dakota.
He and his two colleagues at the Spitzer-Miller Funeral Home have been working 12-15 hours a day, seven days a week, to keep up with the demand in the community of 26,000. The funerals are sparsely attended, which would have been unthinkable before the pandemic.
"We had a funeral for a younger man one recent Saturday, and not 20 people came, because most everyone was just afraid," he said.
As covid-19 has spread from big cities to rural communities, it has stressed not only hospitals, but also what some euphemistically call "last responders." The crush has overwhelmed morgues, funeral homes and religious leaders, required ingenuity and even changed the rituals of honoring the dead.
Officials in many smaller cities and towns learned from seeing the overflow of bodies during last spring's first wave of covid deaths in places such as Detroit, where nurses at Detroit Medical Center Sinai-Grace Hospital alerted the media to bodies accumulating in hospital storage rooms. They watched as New York hospitals and funeral homes marshaled refrigerated trucks to store bodies. More than 600 bodies of people who died in the spring covid surge remain in freezer trucks on the Brooklyn waterfront because officials can't find next of kin, or relatives are also sick or unable to pay for burial.
People like Dr. Robert Kurtzman, Montana's chief medical examiner, took heed. Last spring, he worked with funeral directors and others to study the state's morgue capacity. After looking at covid projections, the state arranged with the Montana National Guard to have 13 refrigerated semitrucks ready to dispatch anywhere in the state.
"We are already in a precarious position, and the projections present a scary proposition," he said. "We need to be ready for worst-case scenarios."
Chad Towner, CEO of St. Joseph Health System, which has two hospitals in northern Indiana, ordered two refrigerated semitrailers in April. For a time, things were relatively quiet. But the pandemic has hit.
"I told a friend who was a covid doubter that if my wife needed a bed today, I could not arrange one. That's the dire situation we face here," Towner said. "All our competitors in the area are in the same boat, and we're working together instead of competing."
Although the freezer trucks have not yet been needed, he worries that the sharp increase in cases, and those anticipated from holiday gatherings, will make last-resort measures necessary.
"We recently had four deaths in one afternoon," said Towner. "A priest approached me to say he'd been asked to provide last rites to three patients in one hour."
Moving bodies from the hospital morgue is a slower process than usual, he said. "Morticians and funeral homes are overflowing as well. Families that are sick or quarantined at the time of the loved one's death often can't work with us on a transfer, meaning bodies are here longer. The entire system is stressed to the tipping point," said Towner.
Private enterprise has created a solution for smaller communities. In Bozeman, Montana, a specialty truck company has retrofitted trailers that can be pulled by an SUV or a pickup.
Acela Truck Co. has already sold hundreds of the pull-behind refrigerated units created in response to the covid pandemic. They range from 9 to 53 feet and have racks that each hold four body trays. "We're very busy and have orders in all of the lower 48 states," said CEO David Ronsen. Acela has partnered with Mopec, a Michigan autopsy supply company, to help sell and deliver the new product.
Billings Clinic in Montana also anticipated a flood of deaths last spring by reserving a semitrailer for delivery, if needed. The clinic, which has just two morgue spaces, has dealt with 80 covid deaths, including seven on the weekend after Thanksgiving.
Chief Nursing Officer Laurie Smith said the hospital is at capacity, despite adding beds by converting office space and building an addition. The hospital, which currently has 335 beds, so far has handled the additional deaths through what she calls a "sad partnership" with funeral homes, which have been quickly picking up bodies the hospital cannot store.
The hospital does its best to allow relatives to say goodbye, but that often involves family members standing at an interior window outside the patient's room, using a computer tablet to communicate their last words.
That is just one way in which the rituals of grieving have changed during the covid pandemic.
Typical congregational hymns are pretty much gone, as are choirs.
"We are using mostly recordings, sometimes a soloist," said SpitzerFuneral home directors who pride themselves on spending time comforting grieving families say they are so busy that some days they have to rush out from one funeral to begin the next one.
"Families are being robbed of the whole funeral rite experience and losing the support of having friends and family around them," said Shauna Kjos-Miotke of Fiksdal Funeral Home in Webster, South Dakota.
Native communities have not only been among the hardest hit with covid illnesses and deaths, but their grieving rituals have been among the most seriously disrupted.
"Normally a funeral is a two- or three-day process with hundreds of people," said Josiah Hugs, a Crow tribal member who is the outreach coordinator for Billings Urban Indian Health and Wellness Center. "Now there is no time to tell stories about the person, not a lot of singing and praying. I've been to three recent covid funerals, and everything was at the burial site, with maybe 30 people sitting in their cars and not getting out."
Covid has even affected body disposal. A survey by the National Funeral Directors Association found that more than half of their members reported increased cremation rates due to covid. The NFDA also found that half its members have clients who have postponed services to hold a memorial later.
In the largely impoverished Hidalgo County, a Texas border area, county officials began using covid funds to help cover the burial costs for struggling families. Then they begin hearing of the emotional costs, including the anguish of videoconferenced funerals, such as for a family that had lost a husband, a mother and an aunt in one month. They wondered if there would be interest in an alternative way to honor the dead.
"We sent out a social media post asking if anyone wanted to post a photograph of a relative who died of covid if we created a county memorial page," said county spokesperson Carlos Sanchez, who himself barely survived a bout with covid in July. "Within minutes, we got more than 20 emails. Several sent photos of multiple relatives. They want them to be remembered."
With the world's attention gripped by the spread of the coronavirus, infectious disease experts are redoubling their efforts to show the robust connection between the health of nature, wildlife and humans.
This article was published on Monday, January 4, 2021 in Kaiser Health News.
As the covid-19 pandemic heads for a showdown with vaccines it's expected to lose, many experts in the field of emerging infectious diseases are already focused on preventing the next one.
They fear another virus will leap from wildlife into humans, one that is far more lethal but spreads as easily as SARS-CoV-2, the strain of coronavirus that causes covid-19. A virus like that could change the trajectory of life on the planet, experts say.
"What keeps me up at night is that another coronavirus like MERS, which has a much, much higher mortality rate, becomes as transmissible as covid," said Christian Walzer, executive director of health at the Wildlife Conservation Society. "The logistics and the psychological trauma of that would be unbearable."
SARS-CoV-2 has an average mortality rate of less than 1%, while the mortality rate for Middle East respiratory syndrome, or MERS — which spread from camels into humans — is 35%. Other viruses that have leapt the species barrier to humans, such as bat-borne Nipah, have a mortality rate as high as 75%.
"There is a huge diversity of viruses in nature, and there is the possibility that one has the Goldilocks characteristics of pre-symptomatic transmission with a high fatality rate," said Raina Plowright, a virus researcher at the Bozeman Disease Ecology Lab in Montana. (Covid-19 is highly transmissible before the onset of symptoms but fortunately is far less lethal than several other known viruses.) "It would change civilization."
That's why in November the German Federal Foreign Office and the Wildlife Conservation Society held a virtual conference called One Planet, One Health, One Future, aimed at heading off the next pandemic by helping world leaders understand that killer viruses like SARS-CoV-2 — and many other less deadly pathogens — are unleashed on the world by the destruction of nature.
With the world's attention gripped by the spread of the coronavirus, infectious disease experts are redoubling their efforts to show the robust connection between the health of nature, wildlife and humans. It is a concept known as One Health.
While the idea is widely accepted by health officials, many governments have not factored it into policies. So the conference was timed to coincide with the meeting of the world's economic superpowers, the G20, to urge them to recognize the threat that wildlife-borne pandemics pose, not only to people but also to the global economy.
The Wildlife Conservation Society — America's oldest conservation organization, founded in 1895 — has joined with 20 other leading conservation groups to ask government leaders "to prioritize protection of highly intact forests and other ecosystems, and work in particular to end commercial wildlife trade and markets for human consumption as well as all illegal and unsustainable wildlife trade," they said in a recent press release.
Experts predict it would cost about $700 billion to institute these and other measures, according to the Wildlife Conservation Society. On the other hand, it's estimated that covid-19 has cost $26 trillion in economic damage. Moreover, the solution offered by those campaigning for One Health goals would also mitigate the effects of climate change and the loss of biodiversity.
The growing invasion of natural environments as the global population soars makes another deadly pandemic a matter of when, not if, experts say — and it could be far worse than covid. The spillover of animal, or zoonotic, viruses into humans causes some 75% of emerging infectious diseases.
But multitudes of unknown viruses, some possibly highly pathogenic, dwell in wildlife around the world. Infectious disease experts estimate there are 1.67 million viruses in nature; only about 4,000 have been identified.
SARS-CoV-2 likely originated in horseshoe bats in China and then passed to humans, perhaps through an intermediary host, such as the pangolin — a scaly animal that is widely hunted and eaten.
While the source of SARS-CoV-2 is uncertain, the animal-to-human pathway for other viral epidemics, including Ebola, Nipah and MERS, is known. Viruses that have been circulating among and mutating in wildlife, especially bats, which are numerous around the world and highly mobile, jump into humans, where they find a receptive immune system and spark a deadly infectious disease outbreak.
"We've penetrated deeper into eco-zones we've not occupied before," said Dennis Carroll, a veteran emerging infectious disease expert with the U.S. Agency for International Development. He is setting up the Global Virome Project to catalog viruses in wildlife in order to predict which ones might ignite the next pandemic. "The poster child for that is the extractive industry — oil and gas and minerals, and the expansion of agriculture, especially cattle. That's the biggest predictor of where you'll see spillover."
When these things happened a century ago, he said, the person who contracted the disease likely died there. "Now an infected person can be on a plane to Paris or New York before they know they have it," he said.
Meat consumption is also growing, and that has meant either more domestic livestock raised in cleared forest or "bush meat" — wild animals. Both can lead to spillover. The AIDS virus, it's believed, came from wild chimpanzees in central Africa that were hunted for food.
One case study for how viruses emerge from nature to become an epidemic is the Nipah virus.
Nipah is named after the village in Malaysia where it was first identified in the late 1990s. The symptoms are brain swelling, headaches, a stiff neck, vomiting, dizziness and coma. It is extremely deadly, with as much as a 75% mortality rate in humans, compared with less than 1% for SARS-CoV-2. Because the virus never became highly transmissible among humans, it has killed just 300 people in some 60 outbreaks.
One critical characteristic kept Nipah from becoming widespread. "The viral load of Nipah, the amount of virus someone has in their body, increases over time" and is most infectious at the time of death, said the Bozeman lab's Plowright, who has studied Nipah and Hendra. (They are not coronaviruses, but henipaviruses.) "With SARS-CoV-2, your viral load peaks before you develop symptoms, so you are going to work and interacting with your family before you know you are sick."
If an unknown virus as deadly as Nipah but as transmissible as SARS-CoV-2 before an infection was known were to leap from an animal into humans, the results would be devastating.
Plowright has also studied the physiology and immunology of viruses in bats and the causes of spillover. "We see spillover events because of stresses placed on the bats from loss of habitat and climatic change," she said. "That's when they get drawn into human areas." In the case of Nipah, fruit bats drawn to orchards near pig farms passed the virus on to the pigs and then humans.
"It's associated with a lack of food," she said. "If bats were feeding in native forests and able to nomadically move across the landscape to source the foods they need, away from humans, we wouldn't see spillover."
A growing understanding of ecological changes as the source of many illnesses is behind the campaign to raise awareness of One Health.
One Health policies are expanding in places where there are likely human pathogens in wildlife or domestic animals. Doctors, veterinarians, anthropologists, wildlife biologists and others are being trained and training others to provide sentinel capabilities to recognize these diseases if they emerge.
The scale of preventive efforts is far smaller than the threat posed by these pathogens, though, experts say. They need buy-in from governments to recognize the problem and to factor the cost of possible epidemics or pandemics into development.
"A road will facilitate a transport of goods and people and create economic incentive," said Walzer, of the Wildlife Conservation Society. "But it will also provide an interface where people interact and there's a higher chance of spillover. These kinds of costs have never been considered in the past. And that needs to change."
The One Health approach also advocates for the large-scale protection of nature in areas of high biodiversity where spillover is a risk.
Joshua Rosenthal, an expert in global health with the Fogarty International Center at the National Institutes of Health, said that while these ideas are conceptually sound, it is an extremely difficult task. "These things are all managed by different agencies and ministries in different countries with different interests, and getting them on the same page is challenging," he said.
Researchers say the clock is ticking. "We have high human population densities, high livestock densities, high rates of deforestation — and these things are bringing bats and people into closer contact," Plowright said. "We are rolling the dice faster and faster and more and more often. It's really quite simple."
A study published in Clinical Infectious Diseases found that 1 in 4 children given antibiotics in U.S. children's hospitals are prescribed the drugs inappropriately.
This article was published on Monday, January 4, 2021 in Kaiser Health News.
COLUMBIA, Mo. — A memory haunts Christina Fuhrman: the image of her toddler Pearl lying pale and listless in a hospital bed, tethered to an IV to keep her hydrated as she struggled against a superbug infection.
"She survived by the grace of God," Fuhrman said of the illness that struck her oldest child in this central Missouri city almost five years ago. "She could've gone septic fast. Her condition was near critical."
Pearl was fighting Clostridium difficile, or C. diff, a type of antibiotic-resistant bacteria known as a superbug. A growing body of research shows that overuse and misuse of antibiotics in children's hospitals — which health experts and patients say should know better — helps fuel these dangerous bacteria that attack adults and, increasingly, children. Doctors worry that the covid pandemic will only lead to more overprescribing.
A study published in the journal Clinical Infectious Diseases in January found that 1 in 4 children given antibiotics in U.S. children's hospitals are prescribed the drugs inappropriately — the wrong types, or for too long, or when they're not necessary.
Dr. Jason Newland, a pediatrics professor at Washington University in St. Louis who co-authored the study, said that's likely an underestimate because the research involved 32 children's hospitals already working together on proper antibiotic use. Newland said the nation's 250-plus children's hospitals need to do better.
"It's irresponsible," Fuhrman added. Coupled with parents begging for antibiotics in pediatricians' offices, it's "just creating a monster."
Using antibiotics when they're not needed is a long-standing problem, and the pandemic "has thrown a little bit of gas on the fire," said Dr. Mark Schleiss, a pediatrics professor at the University of Minnesota Medical School.
Although fears of covid-19 mean fewer parents are taking their children to doctors' offices and some have skipped routine visits for their kids, children are still getting antibiotics through telemedicine visits that don't allow for in-person exams. And research shows more than 5,000 children infected with the coronavirus were hospitalized between late May and late September. If symptoms point toward a bacterial infection on top of the coronavirus, Schleiss said, doctors sometimes prescribe antibiotics, which don't work on viruses, until tests rule out bacteria.
At the same time, Newland said, the demands of caring for covid patients take time away from what are known as "stewardship" programs aimed at measuring and improving how antibiotics are prescribed. Often such efforts involve continuing education courses for healthcare professionals on how to use antibiotics safely, but the pandemic has made those more difficult to host.
"There's no doubt: We've seen some extra use of antibiotics," Newland said. "The impact of the pandemic on antibiotic use will be significant."
Habits Drive Superbug Growth
Antibiotic resistance occurs through random mutation and natural selection. Those bacteria most susceptible to an antibiotic die quickly, but surviving germs can pass on resistant features, then spread. The process is driven by prescribing habits that lead to high levels of antibiotic use.
A March study in the journal Infection Control & Hospital Epidemiology found that the rates of antibiotic use on patients at 51 children's hospitals ranged from 22% to 52%. Some of those medications treated actual bacterial infections, but others were given in hopes of preventing infections or when doctors didn't know what was causing a problem.
"I hear a lot about antibiotic use for the 'just in case' scenarios," said Dr. Joshua Watson, director of the antimicrobial stewardship program at Nationwide Children's Hospital in Ohio. "We underestimate the downsides."
Newland said each specialty in medicine has its own culture around antibiotic use. Many surgeons, for example, routinely use antibiotics to prevent infection after operations.
Outside of hospitals, doctors have long been criticized for prescribing antibiotics too often for ailments such as ear infections, which can sometimes go away on their own or can be caused by viruses that antibiotics won't counter.
Dr. Shannon Ross, an associate professor of pediatrics and microbiology at the University of Alabama at Birmingham, said not all doctors have been taught how to use antibiotics correctly.
"Many of us don't realize we're doing it," she said of overuse. "It's sort of not knowing what you're doing until someone tells you."
All this drives the growth of numerous superbugs in the very population served by these hospitals. Numerous studies, including one published in the Journal of Pediatrics in March, cite the rise among kids of C. diff, which causes gastrointestinal problems. A 2017 study in the Journal of the Pediatric Infectious Diseases Society found that cases of a certain type of multidrug-resistant Enterobacteriaceae rose 700% in American children in just eight years. And a steady stream of research points to the stubborn prevalence in kids of the better-known MRSA, or methicillin-resistant Staphylococcus aureus.
Superbug infections can be extremely difficult — and sometimes impossible — to treat. Doctors often must turn to strong medicines with side effects or give drugs intravenously.
"It's getting more and more worrisome," Ross said. "We have had patients we have not been able to treat because we've had no antibiotics available" that could kill the germs.
Doctors say the world is nearing a "post-antibiotic era," when antibiotics no longer work and common infections can kill.
A Monster Unleashed
Superbugs spawned by antibiotic overuse put everyone at risk.
Like her daughter, Fuhrman also suffered through a C. diff infection, getting sick after taking antibiotics following a root canal in 2012. While killing harmful germs, antibiotics can also destroy those that protect against infection. Fuhrman cycled in and out of the hospital for months. When she finally got better, she tried to avoid using antibiotics and never gave them to her daughter.
That's because antibiotics affect your microbiome by wiping out bad germs and the good germs that protect your body against infections.
Pearl's first symptoms of C. diff arose about three years later, at around 20 months old. Fuhrman noticed her daughter was having lots of bowel movements. The mom eventually found pus and blood in her daughter's stools. One day, Pearl was so pale and weak that Fuhrman took her to the emergency room. She was discharged, then spiked a fever and returned to the hospital.
Doctors treated Pearl with Flagyl, a broad-spectrum antibiotic. But two days after the last dose, she went downhill. The infection had returned. She recovered only after going to the Mayo Clinic in Rochester, Minnesota, for a fecal microbiota transplantation, in which she received healthy donor stool from her dad through a colonoscopy.
Since her family's ordeal, Fuhrman has been trying to raise awareness of superbugs and antibiotic overuse. She serves on the board of the Peggy Lillis Foundation, a C. diff education and advocacy organization, and has testified before a presidential advisory committee in Washington, D.C., about superbugs and antibiotic stewardship.
In March, the Centers for Medicare & Medicaid Services began requiring all hospitals to document that they have antibiotic stewardship programs.
One approach, Schleiss said, is to restrict antibiotics by "saving our most magic bullets for the most desperate situations." Another is to stop antibiotics at, say, 72 hours, after reassessing whether patients need them. Meanwhile, doctors are calling for more research into antibiotic use in children.
Fuhrman said hospitals must do all they can to stop superbug infections. The stakes are enormous, she said, pointing toward Pearl, now a 7-year-old first grader who likes to wear a pink hair bow and paint her tiny fingernails a rainbow of pastel colors.
"Antibiotics are great, but they have to be used wisely," Fuhrman said. "The problem of superbugs is here. It's in our backyard now, and it's just getting worse."
Even their COVID outbreaks are different: In Boulder County, the virus swirls around the University of Colorado. In Weld County, some of the worst outbreaks have swept through meatpacking plants.
This article was published on Wednesday, December 30, 2020 in Kaiser Health News.
ERIE, Colo. — Whenever Larry Kelderman looks up from the car he’s fixing and peers across the street, he’s looking across a border. His town of 28,000 straddles two counties, separated by County Line Road.
Kelderman’s auto repair business is in Boulder County, whose officials are sticklers for public health and have topped the county website with instructions on how to report COVID violations. Kelderman lives in Weld County, where officials refuse to enforce public health rules.
Weld County’s test positivity rate is twice that of its neighbor, but Kelderman is pretty clear which side he backs.
“Which is worse, the person gets the virus and survives and they still have a business, or they don’t get the virus and they lose their livelihood?” he said.
Boulder boasts one of the most highly educated populations in the nation; Weld boasts about its sugar beets, cattle and thousands of oil and gas wells. Summer in Boulder County means concerts featuring former members of the Grateful Dead; in Weld County, it’s rodeo time. Boulder voted for Biden, Weld for Trump. Per capita income in Boulder is nearly 50% higher than in Weld.
Even their COVID outbreaks are different: In Boulder County, the virus swirls around the University of Colorado. In Weld County, some of the worst outbreaks have swept through meatpacking plants.
It’s not the first time County Line Road has been a fault line.
“I’ve been in politics seven years and there’s always been a conflict between the two counties,” said Jennifer Carroll, mayor of Erie, once a coal mining town and now billed as a good place to raise a family, about 30 minutes north of Denver.
Shortly before the coronavirus hit Colorado, Erie’s board of trustees extended a moratorium on new oil and gas operations in the town. Weld County was not pleased.
“They got really angry at us for doing that, because oil and gas is their thing,” Carroll said.
Most of the town’s businesses are on the Weld side. To avoid public health whiplash, Carroll and other town leaders have asked residents to comply with the more restrictive stance of the Boulder side.
The feud got ugly in a dispute over hospital beds. At one point, the state said Weld County had only three intensive care beds, while Weld County claimed it had 43.
“It made my job harder, because people were doubting what I was saying,” said Carroll. “Nobody trusted anyone because they were hearing conflicting information.”
Weld’s number, it turned out, included not just the beds in its two hospitals, but also those in 10 other hospitals across the county line, including in the city of Longmont.
Longmont sits primarily in Boulder County but spills into Weld, where its suburbs taper into fields pockmarked with prairie dog holes. Its residents say they can tell snow is coming when the winds deliver a pungent smell of livestock from next door. Longmont Mayor Brian Bagley worried that Weld’s behavior would deliver more than a stench: It might also deliver patients requiring precious resources.
“They were basically encouraging their citizens to violate the emergency health orders … with this cowboy-esque, you know, ‘Yippee-ki-yay, freedom, Constitution forever, damn the consequences,’” said Bagley. “Their statement is, ‘Our hospitals are full, but don’t worry, we’re just going to use yours.’”
So, “for 48 hours, I trolled Weld County,” he said. Bagley asked the city council to consider an ordinance that could have restricted Weld County residents’ ability to receive care at Longmont hospitals. Bagley, who retracted his proposal the next day, said he knew it was never going to come to fruition — after all, it was probably illegal — but he wanted to prove a point.
“They’re going to be irresponsible? Fine. Let me propose a question,” he said. “If there is only one ICU bed left and there are two grandparents there — one from Weld, one from Boulder — and they both need that bed, who should get it?”
Weld County commissioners volleyed back, calling Bagley a “simple mayor.” They wrote that the answer to the pandemic was “not to continually punish working-class families or the individuals who bag your groceries, wait on you in restaurants, deliver food to your home while you watch Netflix and chill.”
“I know we’re all trying to get along, but people are starting to do stupid and mean things and so I’ll be stupid and mean back,” Bagley said during a Dec. 8 council meeting.
In another Longmont City Council meeting, Bagley (who suspects the commissioners don’t know what “Netflix and chill” typically means) often referred to Weld simply as “our neighbors to the East,” declining to name his foe. The council shrugged off his statement about withholding medical treatment but demanded that Weld County step up to fight the pandemic.
“We would not deny medical care to anybody. It’s illegal and it’s immoral,” said council member Polly Christensen. “But it is wrong for people to expect us to bear the burden of what they’ve been irresponsible enough to let loose.”
“They’re the reason why I can’t be in the classroom in front of my kids,” said council member and teacher Susie Hidalgo-Fahring, whose school district straddles the counties. “I’m done with that. Everybody needs to be a good neighbor.”
The council decided Dec. 15 to send a letter to Weld County’s commissioners encouraging them to enforce state restrictions and to make a public statement about the benefits of wearing masks and practicing physical distancing. They’ve also backed a law allowing Democratic Gov. Jared Polis to withhold relief money from counties that don’t comply with restrictions.
Weld County Commissioner Scott James said his county doesn’t have the authority to enforce public health orders any more than a citizen has the authority to give a speeding ticket.
“If you want me as an elected official to assume authority that I don’t have and arbitrarily exert it over you, I dare you to look that up in the dictionary,” said James, who is a rancher turned country radio host. “It’s called tyranny.”
James doesn’t deny that COVID-19 is ravaging his community. “We’re on fire, and we need to put that fire out,” he said. But he believes that individuals will make the right decisions to protect others, and demands the right of his constituents to use the hospital nearest them.
“To look at Weld County like it has walls around it is shortsighted and not the way our health care system is designed to work,” James said. “To use a crudity, because I am, after all, just a ranch kid turned radio guy, there’s no ‘non-peeing’ section in the pool. Everybody’s gonna get a little on ’em. And that’s what’s going on right now with COVID.”
The dispute is not just liberal and conservative politics clashing. Bagley, the Longmont mayor, grew up in Weld County and “was a Republican up until Trump,” he said. But it is an example of how the virus is tapping into long-standing Western strife.
“There’s decades of reasons for resentment at people from a distance — usually from a metropolis and from a state or federal governmental office — telling rural people what to do,” said Patty Limerick, faculty director at the Center of the American West at the University of Colorado-Boulder, and previously state historian.
In the ’90s, she toured several states performing a mock divorce trial between the rural and urban West. She played Urbana Asphalt West, married to Sandy Greenhills West. Their child, Suburbia, was indulged and clueless and had a habit of drinking everyone else’s water. A rural health care shortage was one of many fuels of their marital strife.
Limerick and her colleagues are reviving the play now and adding COVID references. This time around, she said, it’ll be a last-ditch marriage counseling session for high school classes and communities to adopt and perform. It likely won’t have a scripted ending; she’s leaving that up to each community.
Earlier this month, U.S. Surgeon General Jerome Adams stood next to Montana's governor in Helena and said he hopes people wear masks because it's the right thing to do — especially as COVID hospitalizations rise
This article was published on Monday, December 28, 2020 in Kaiser Health News.
Nine months into the pandemic that has killed more than 320,000 people in the U.S., Kim Larson is still trying to convince others in her northern Montana county that COVID-19 is dangerous.
As Hill County Health Department director and county health officer, Larson continues to hear people say the coronavirus is just like a bad case of the flu. Around the time Montana’s governor mandated face coverings in July, her staffers saw notices taped in several businesses’ windows spurning the state’s right to issue such emergency orders.
For a while, the county with a population of 16,000 along the Canadian border didn’t see much evidence of the pandemic. It had only one known COVID case until July. But that changed as the nation moved into its third surge of the virus this fall. By mid-December, Hill County had recorded more than 1,500 cases — the vast majority since Oct. 1 — and 33 people there had died.
When Larson hears people say pandemic safety rules should end, she talks about how contagious the COVID virus is, how some people experience lasting effects and how hospitals are so full that care for any ailment could face delays.
“In public health, we’ve seen the battle before, but you typically have the time to build your evidence, research showing that this really does save lives,” Larson said. “In the middle of a pandemic, you have no time.”
Public health laws typically come long after social norms shift, affirming a widespread acceptance that a change in habits is worth the public good and that it’s time for stragglers to fall in line. But even when decades of evidence show a rule can save lives — such as wearing seat belts or not smoking indoors — the debate continues in some places with the familiar argument that public restraints violate personal freedoms. This fast-moving pandemic, however, doesn’t afford society the luxury of time. State mandates have put local officials in charge of changing behavior while general understanding catches up.
Earlier this month, U.S. Surgeon General Jerome Adams stood next to Montana’s governor in Helena and said he hopes people wear masks because it’s the right thing to do — especially as COVID hospitalizations rise.
“You don’t want to be the reason that a woman in labor can’t get a hospital bed,” Adams said, adding a vaccine is on the way. “It’s just for a little bit longer.”
He spoke days after state lawmakers clashed over masks as a majority of Republican lawmakers arrived for a committee meeting barefaced and at least one touted false information on the dangers of masks. As of Dec. 15, the Republican majority hadn’t required masks for the upcoming legislative session, set to begin Jan. 4.
And now a group opposed to masks from Gallatin and Flathead counties has filed a lawsuit asking a Montana judge to block the state’s pandemic-related safety rules.
Public health laws typically spark political battles. Changing people’s habits is hard, said Lindsay Wiley, director of the health law and policy program at American University in Washington, D.C. Despite the misconception that there was universal buy-in for masks during the 1918 pandemic, Wiley said, some protesters intentionally built rap sheets of arrests for going maskless in the name of liberty.
She said health officials realize any health restrictions amid a pandemic require the public’s trust and cooperation for success.
“We don’t have enough police to walk around and force everyone to wear a mask,” she said. “And I’m not sure we want them to do it.”
Local officials have the best chance to win over that support, Wiley said. And seeing elected leaders such as President Donald Trump rebuff his own federal health guidelines makes that harder. Meanwhile, public shaming like calling unmasked people selfish or stupid can backfire, Wiley said, because if they were to give in to mask-wearing, they would essentially be accepting those labels.
In the history of public health laws, even rules that have had time to build widely accepted evidence weren’t guaranteed support.
It’s illegal in Montana to go without a seat belt in a moving car. But, as in 13 other states, authorities aren’t allowed to pull people over for being unbuckled. Every few years, a Montana lawmaker, backed by a collection of public health and law enforcement organizations, proposes a law to allow seat belt traffic stops, arguing it would save lives. In 2019, that request didn’t even make it out of committee, squelched by the arguments of personal choice and not giving too much power to the government.
Main opposition points against public health laws — whether it’s masks, seat belts, motorcycle helmets or smoking — can sound alike.
When Missoula County became the first place in Montana to ban indoor smoking in public spaces in 1999, opponents said the change would destroy businesses, be impossible to enforce and violate people’s freedom of choice.
“They are the same arguments in a lot of ways,” said Ellen Leahy, director of the Missoula City-County Health Department. “Public health was right at that intersection between what’s good for the whole community and the rights and responsibilities of the individual.”
Montana adopted an indoor smoking ban in 2005, but many bars and taverns were given until 2009 to fall in line. And, in some places, debate and court battles continued for a decade more on how the ban could be enforced.
Amid the COVID pandemic, Missoula County was again ahead of much of the state when it passed its own mask ordinance. The county has two hospitals and a university that swells its population with students and commuters.
“If you have to see it to believe it, you’re going to see the impact of a pandemic first in a city, most likely,” Leahy said.
Compliance hasn’t been perfect and she said the need for strict enforcement has been limited. As of early December, out of the more than 1,500 complaints the Missoula health department followed up on since July, it sent closure notices to four businesses that flouted the rules.
In Hill County, when the health department gets complaints that a business is violating pandemic mandates, two part-time health sanitarians, who perform health inspections of businesses, talk with the owners about why the rules exist and how to live by them. Often it works. Other times the complaints keep coming.
County attorney Karen Alley said the local health officials have reached out to her office with complaints of noncompliance on COVID safety measures, but she has not seen enough evidence to bring a civil case against a business. Unlike other health laws, she said, mask rules have no case studies yet to offer a framework for enforcing them through the Montana courts. (A handful of cases against businesses skirting COVID rules were still playing out as of mid-December.)
“Somebody has to be the test case, but you never want to be the test case,” said Alley, who is part of a team of three. “It’s a lot of resources, a lot of time.”
Larson, with the Hill County Health Department, said her focus is still on winning over the community. And she’s excited about some progress. The town’s annual live Nativity scene, which typically draws crowds with hot cocoa, turned into a drive-by event this year.
She doesn’t expect everyone to follow the rules — that’s never the case in public health. But Larson hopes enough people will to slow down the virus. That could be happening. By mid-December, the county’s tally of daily active cases was declining for the first time since its spike began in October.
“You just try to figure out the best way for your community and to get their input,” Larson said. “Because we need the community’s help to stop it.”
Vaccinating such vulnerable species against the disease is important not only for the animals’ sake, experts say, but potentially for the protection of people.
This article was published on Wednesday, December 23, 2020 in Kaiser Health News.
In late summer, as researchers accelerated the first clinical trials of COVID-19 vaccines for humans, a group of scientists in Colorado worked to inoculate a far more fragile species.
About 120 black-footed ferrets, among the most endangered mammals in North America, were injected with an experimental COVID vaccine aimed at protecting the small, weasel-like creatures rescued from the brink of extinction four decades ago.
The effort came months before U.S. Department of Agriculture officials began accepting applications from veterinary drugmakers for a commercial vaccine for minks, a close cousin of the ferrets. Farmed minks, raised for their valuable fur, have died by the tens of thousands in the U.S. and been culled by the millions in Europe after catching the COVID virus from infected humans.
Vaccinating such vulnerable species against the disease is important not only for the animals’ sake, experts say, but potentially for the protection of people. Some of the most pernicious human diseases have originated in animals, including the new coronavirus, which is believed to have spread from bats to an intermediary species before jumping to humans and sparking the pandemic.
The worry when it comes to animals like farmed minks, which are kept in crowded pens, is that the virus, contracted from humans, can mutate as it spreads rapidly in the susceptible animals, posing a new threat if it spills back to people. Danish health officials in November reported detecting more than 200 COVID cases in humans that had variants associated with farmed minks, including a dozen with a mutation scientists feared could undermine the effectiveness of vaccines. However, officials now say that variant appears to be extinct.
In the U.S., scientists have not found similar COVID mutations in the domestic farmed mink populations, though they recently noted with concern the discovery of the first case of the virus in a wild mink in Utah.
“For highly contagious respiratory viruses, it’s really important to be mindful of the animal reservoir,” said Dr. Corey Casper, a vaccinologist and chief executive of the Infectious Disease Research Institute in Seattle. “If the virus returns to the animal host and mutates, or changes, in such a way that it could be reintroduced to humans, then the humans would no longer have that immunity. That makes me very concerned.”
For the newly vaccinated ferrets, the main risk is to the animals themselves. They’re part of a captive population at the National Black-footed Ferret Conservation Center outside Fort Collins, Colorado, where there have been no cases of COVID-19 to date. But the slender, furry creatures — known for their distinctive black eye mask, legs and feet — are feared to be highly vulnerable to the ravages of the disease, said Tonie Rocke, a research scientist at the National Wildlife Health Center who is testing the ferret vaccine. They’re all genetically similar, having come from a narrow breeding pool, which weakens their immune systems. And they likely share many of the features that have made the disease so deadly to minks.
“We don’t have direct evidence that black-footed ferrets are susceptible to COVID-19, but given their close relationship to minks, we wouldn’t want to find out,” Rocke said.
Rocke began working on the experimental vaccine in the spring, as she and Pete Gober, black-footed ferret recovery coordinator for the U.S. Fish and Wildlife Service, watched reports about the new coronavirus with growing alarm. An exotic disease is “the biggest nemesis for ferret recovery,” said Gober, who has worked with black-footed ferrets for 30 years. “It can knock you right back down to zero.”
The ferrets are a native species that once roamed vast areas of the American West. Their ranks declined precipitously over many decades as populations of prairie dogs, the ferrets’ primary source of food and shelter, were decimated by farming, grazing and other human activity.
In 1979, black-footed ferrets were declared extinct — until a small population was discovered on a ranch in Wyoming. Most of those rare animals were then lost to disease, including sylvatic plague, the animal version of the Black Death that has plagued humans. The species survived only because biologists rescued 18 ferrets to form the basis of a captive breeding program, Gober said.
With the threat of new disease looming, Gober doubled-down on the strict infection prevention precautions at the center, which houses more than half of the 300 black-footed ferrets in captivity. An additional 400 have been reintroduced to the wild. Then he called Rocke, who previously created a vaccine shown to protect ferrets from sylvatic plague. It uses a purified protein from Yersinia pestis, the bacterium that causes the disease.
Would the same technique work against the virus that causes COVID-19? Under the research authority granted by the Fish and Wildlife Service, the scientists were free to try.
“We can do these sorts of things experimentally in animals that we can’t do in humans,” Rocke noted.
Rocke acquired purified protein of a key component of the SARS-CoV-2 virus, the spike protein, from a commercial producer. She mixed the liquid protein with an adjuvant, a substance that enhances immune response, and injected it under the animals’ skin.
The first doses were given in late spring to 18 black-footed ferrets, all male, all about a year old, followed by a booster dose a few weeks later. Within weeks of getting the second shots, tests of the animals’ blood showed antibodies to the virus, a good — and expected — sign.
By early fall, 120 of the 180 ferrets housed at the center were inoculated, with the rest remaining unvaccinated in case something went wrong with the animals, which generally live four to six years in captivity. So far, the vaccine appears safe, but there’s no data yet to show whether it protects the animals from disease. “I can tell you, we have no idea if it will work,” said Rocke, who plans to conduct efficacy tests this winter.
But Rocke’s effort makes sense, said Casper, who has created several vaccines for humans. Rocke’s approach — introducing an inactivated virus in an animal to stimulate an immune response — is the basis for many common vaccines, such as those that prevent polio and influenza.
Vaccines containing inactivated virus to prevent COVID-19 have been tested in certain animals — and in human vaccines, including CoronaVac, created by the Chinese firm Sinovac Life Sciences. But the effort in Colorado may be among the first aimed at preventing COVID-19 in a specific animal population, Rocke said.
Gober said he is optimistic that the ferrets are protected, but it will take a well-designed study to settle the question. Until then, he’ll work to keep the fragile ferrets free of COVID-19. “The price of peace is eternal vigilance, they say. We can’t let our guard down.”
The tougher task is doing the same for people, Gober observed.
“We’re just holding our breath, hoping we can get all the humans vaccinated in the country. That will give us all a sigh of relief.”