Will Bird Flu Be the Next Pandemic?

By Amy Maxmen, KFF Health News

Headlines are flying after the Department of Agriculture confirmed that the H5N1 bird flu virus has infected dairy cows around the country. Tests have detected the virus among cattle in nine states, mainly in Texas and New Mexico, and most recently in Colorado, said Nirav Shah, principal deputy director at the Centers for Disease Control and Prevention, at a May 1 event held by the Council on Foreign Relations.

A menagerie of other animals have been infected by H5N1, and at least one person in Texas. But what scientists fear most is if the virus were to spread efficiently from person to person. That hasn’t happened and might not. Shah said the CDC considers the H5N1 outbreak “a low risk to the general public at this time.”

Viruses evolve and outbreaks can shift quickly. “As with any major outbreak, this is moving at the speed of a bullet train,” Shah said. “What we’ll be talking about is a snapshot of that fast-moving train.” What he means is that what’s known about the H5N1 bird flu today will undoubtedly change.

With that in mind, KFF Health News explains what you need to know now.

Q: Who gets the bird flu?

Mainly birds. Over the past few years, however, the H5N1 bird flu virus has increasingly jumped from birds into mammals around the world. The growing list of more than 50 species includes seals, goats, skunks, cats, and wild bush dogs at a zoo in the United Kingdom. At least 24,000 sea lions died in outbreaks of H5N1 bird flu in South America last year.

What makes the current outbreak in cattle unusual is that it’s spreading rapidly from cow to cow, whereas the other cases — except for the sea lion infections — appear limited. Researchers know this because genetic sequences of the H5N1 viruses drawn from cattle this year were nearly identical to one another.

The cattle outbreak is also concerning because the country has been caught off guard. Researchers examining the virus’s genomes suggest it originally spilled over from birds into cows late last year in Texas, and has since spread among many more cows than have been tested. “Our analyses show this has been circulating in cows for four months or so, under our noses,” said Michael Worobey, an evolutionary biologist at the University of Arizona in Tucson.

Q: Is this the start of the next pandemic?

Not yet. But it’s a thought worth considering because a bird flu pandemic would be a nightmare. More than half of people infected by older strains of H5N1 bird flu viruses from 2003 to 2016 died. Even if death rates turn out to be less severe for the H5N1 strain currently circulating in cattle, repercussions could involve loads of sick people and hospitals too overwhelmed to handle other medical emergencies.

Although at least one person has been infected with H5N1 this year, the virus can’t lead to a pandemic in its current state. To achieve that horrible status, a pathogen needs to sicken many people on multiple continents. And to do that, the H5N1 virus would need to infect a ton of people. That won’t happen through occasional spillovers of the virus from farm animals into people. Rather, the virus must acquire mutations for it to spread from person to person, like the seasonal flu, as a respiratory infection transmitted largely through the air as people cough, sneeze, and breathe. As we learned in the depths of covid-19, airborne viruses are hard to stop.

That hasn’t happened yet. However, H5N1 viruses now have plenty of chances to evolve as they replicate within thousands of cows. Like all viruses, they mutate as they replicate, and mutations that improve the virus’s survival are passed to the next generation. And because cows are mammals, the viruses could be getting better at thriving within cells that are closer to ours than birds’.

The evolution of a pandemic-ready bird flu virus could be aided by a sort of superpower possessed by many viruses. Namely, they sometimes swap their genes with other strains in a process called reassortment. In a study published in 2009, Worobey and other researchers traced the origin of the H1N1 “swine flu” pandemic to events in which different viruses causing the swine flu, bird flu, and human flu mixed and matched their genes within pigs that they were simultaneously infecting. Pigs need not be involved this time around, Worobey warned.

Q: Can I get sick from contaminated milk?

Cow’s milk, as well as powdered milk and infant formula, sold in stores is considered safe because the law requires all milk sold commercially to be pasteurized. That process of heating milk at high temperatures kills bacteria, viruses, and other teeny organisms. Tests have identified fragments of H5N1 viruses in milk from grocery stores but confirm that the virus bits are dead and, therefore, harmless.

Unpasteurized “raw” milk, however, has been shown to contain living H5N1 viruses, which is why the FDA and other health authorities strongly advise people not to drink it. Doing so could cause a person to become seriously ill or worse. But even then, a pandemic is unlikely to be sparked because the virus — in its current form — does not spread efficiently from person to person, as the seasonal flu does.

Q: What should be done?

A lot! Because of a lack of surveillance, the U.S. Department of Agriculture and other agencies have allowed the H5N1 bird flu to spread under the radar in cattle. To get a handle on the situation, the USDA recently ordered all lactating dairy cattle to be tested before farmers move them to other states, and the outcomes of the tests to be reported.

But just as restricting covid tests to international travelers in early 2020 allowed the coronavirus to spread undetected, testing only cows that move across state lines would miss plenty of cases.

Such limited testing won’t reveal how the virus is spreading among cattle — information desperately needed so farmers can stop it. A leading hypothesis is that viruses are being transferred from one cow to the next through the machines used to milk them.

To boost testing, Fred Gingrich, executive director of a nonprofit organization for farm veterinarians, the American Association of Bovine Practitioners, said the government should offer funds to cattle farmers who report cases so that they have an incentive to test. Barring that, he said, reporting just adds reputational damage atop financial loss.

“These outbreaks have a significant economic impact,” Gingrich said. “Farmers lose about 20% of their milk production in an outbreak because animals quit eating, produce less milk, and some of that milk is abnormal and then can’t be sold.”

The government has made the H5N1 tests free for farmers, Gingrich added, but they haven’t budgeted money for veterinarians who must sample the cows, transport samples, and file paperwork. “Tests are the least expensive part,” he said.

If testing on farms remains elusive, evolutionary virologists can still learn a lot by analyzing genomic sequences from H5N1 viruses sampled from cattle. The differences between sequences tell a story about where and when the current outbreak began, the path it travels, and whether the viruses are acquiring mutations that pose a threat to people. Yet this vital research has been hampered by the USDA’s slow and incomplete posting of genetic data, Worobey said.

The government should also help poultry farmers prevent H5N1 outbreaks since those kill many birds and pose a constant threat of spillover, said Maurice Pitesky, an avian disease specialist at the University of California-Davis.

Waterfowl like ducks and geese are the usual sources of outbreaks on poultry farms, and researchers can detect their proximity using remote sensing and other technologies. By zeroing in on zones of potential spillover, farmers can target their attention. That can mean routine surveillance to detect early signs of infections in poultry, using water cannons to shoo away migrating flocks, relocating farm animals, or temporarily ushering them into barns. “We should be spending on prevention,” Pitesky said.

Q: What could happen to people who get the H5N1 bird flu?

No one really knows. Only one person in Texas has been diagnosed with the disease this year, in April. This person worked closely with dairy cows, and had a mild case with an eye infection. The CDC found out about them because of its surveillance process. Clinics are supposed to alert state health departments when they diagnose farmworkers with the flu, using tests that detect influenza viruses, broadly. State health departments then confirm the test, and if it’s positive, they send a person’s sample to a CDC laboratory, where it is checked for the H5N1 virus, specifically. “Thus far we have received 23,” Shah said. “All but one of those was negative.”

State health department officials are also monitoring around 150 people, he said, who have spent time around cattle. They’re checking in with these farmworkers via phone calls, text messages, or in-person visits to see if they develop symptoms. And if that happens, they’ll be tested.

Another way to assess farmworkers would be to check their blood for antibodies against the H5N1 bird flu virus; a positive result would indicate they might have been unknowingly infected. But Shah said health officials are not yet doing this work.

“The fact that we’re four months in and haven’t done this isn’t a good sign,” Worobey said. “I’m not super worried about a pandemic at the moment, but we should start acting like we don’t want it to happen.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Ageism: A Wake-Up Call for Baby Boomers

By Judith Graham, KFF Health News

The covid-19 pandemic would be a wake-up call for America, advocates for the elderly predicted: incontrovertible proof that the nation wasn’t doing enough to care for vulnerable older adults.

The death toll was shocking, as were reports of chaos in nursing homes and seniors suffering from isolation, depression, untreated illness, and neglect. Around 900,000 older adults have died of covid-19 to date, accounting for 3 of every 4 Americans who have perished in the pandemic.

But decisive actions that advocates had hoped for haven’t materialized. Today, most people — and government officials — appear to accept covid as a part of ordinary life.

Many seniors at high risk aren’t getting antiviral therapies for covid, and most older adults in nursing homes aren’t getting updated vaccines. Efforts to strengthen care quality in nursing homes and assisted living centers have stalled amid debate over costs and the availability of staff. And only a small percentage of people are masking or taking other precautions in public despite a new wave of covid, flu, and respiratory syncytial virus infections hospitalizing and killing seniors.

In the last week of 2023 and the first two weeks of 2024 alone, 4,810 people 65 and older lost their lives to covid — a group that would fill more than 10 large airliners — according to data provided by the CDC. But the alarm that would attend plane crashes is notably absent. (During the same period, the flu killed an additional 1,201 seniors, and RSV killed 126.)

“It boggles my mind that there isn’t more outrage,” said Alice Bonner, 66, senior adviser for aging at the Institute for Healthcare Improvement. “I’m at the point where I want to say, ‘What the heck? Why aren’t people responding and doing more for older adults?’”

It’s a good question. Do we simply not care?

I put this big-picture question, which rarely gets asked amid debates over budgets and policies, to health care professionals, researchers, and policymakers who are older themselves and have spent many years working in the aging field. Here are some of their responses.

Pandemic Made Ageism Worse

Prejudice against older adults is nothing new, but “it feels more intense, more hostile” now than previously, said Karl Pillemer, 69, a professor of psychology and gerontology at Cornell University.

“I think the pandemic helped reinforce images of older people as sick, frail, and isolated — as people who aren’t like the rest of us,” he said. “And human nature being what it is, we tend to like people who are similar to us and be less well disposed to ‘the others.’”

“A lot of us felt isolated and threatened during the pandemic. It made us sit there and think, ‘What I really care about is protecting myself, my wife, my brother, my kids, and screw everybody else,’” said W. Andrew Achenbaum, 76, the author of nine books on aging and a professor emeritus at Texas Medical Center in Houston.

In an environment of “us against them,” where everybody wants to blame somebody, Achenbaum continued, “who’s expendable? Older people who aren’t seen as productive, who consume resources believed to be in short supply. It’s really hard to give old people their due when you’re terrified about your own existence.”

Although covid continues to circulate, disproportionately affecting older adults, “people now think the crisis is over, and we have a deep desire to return to normal,” said Edwin Walker, 67, who leads the Administration on Aging at the Department of Health and Human Services. He spoke as an individual, not a government representative.

The upshot is “we didn’t learn the lessons we should have,” and the ageism that surfaced during the pandemic hasn’t abated, he observed.

“Everyone loves their own parents. But as a society, we don’t value older adults or the people who care for them,” said Robert Kramer, 74, co-founder and strategic adviser at the National Investment Center for Seniors Housing & Care.

“The message to older adults is: ‘Your time has passed, give up your seat at the table, stop consuming resources, fall in line.’”

— Anne Montgomery, Health Policy Expert

Kramer thinks boomers are reaping what they have sown. “We have chased youth and glorified youth. When you spend billions of dollars trying to stay young, look young, act young, you build in an automatic fear and prejudice of the opposite.”

Combine the fear of diminishment, decline, and death that can accompany growing older, with the trauma and fear that arose during the pandemic.

“I think covid has pushed us back in whatever progress we were making in addressing the needs of our rapidly aging society. It has further stigmatized aging,” said John Rowe, 79, professor of health policy and aging at Columbia University’s Mailman School of Public Health.

“The message to older adults is: ‘Your time has passed, give up your seat at the table, stop consuming resources, fall in line,’” said Anne Montgomery, 65, a health policy expert at the National Committee to Preserve Social Security and Medicare. She believes, however, that baby boomers can “rewrite and flip that script if we want to and if we work to change systems that embody the values of a deeply ageist society.”

Integration, Not Separation, Is Needed

The best way to overcome stigma is “to get to know the people you are stigmatizing,” said G. Allen Power, 70, a geriatrician and the chair in aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada. “But we separate ourselves from older people so we don’t have to think about our own aging and our own mortality.”

The solution: “We have to find ways to better integrate older adults in the community as opposed to moving them to campuses where they are apart from the rest of us,” Power said. “We need to stop seeing older people only through the lens of what services they might need and think instead of all they have to offer society.”

That point is a core precept of the National Academy of Medicine’s 2022 report Global Roadmap for Healthy Longevity. Older people are a “natural resource” who “make substantial contributions to their families and communities,” the report’s authors write in introducing their findings.

Those contributions include financial support to families, caregiving assistance, volunteering, and ongoing participation in the workforce, among other things.

“When older people thrive, all people thrive,” the report concludes.

That’s a message Kramer conveys in classes he teaches at the University of Southern California, Cornell, and other institutions.

“You have far more at stake in changing the way we approach aging than I do,” he tells his students. “You are far more likely, statistically, to live past 100 than I am. If you don’t change society’s attitudes about aging, you will be condemned to lead the last third of your life in social, economic, and cultural irrelevance.”

As for himself and the baby boom generation, Kramer thinks it’s “too late” to effect the meaningful changes he hopes the future will bring.

“I suspect things for people in my generation could get a lot worse in the years ahead,” Pillemer said. “People are greatly underestimating what the cost of caring for the older population is going to be over the next 10 to 20 years, and I think that’s going to cause increased conflict.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Checking the Boxes: Why Therapy Was Not Helpful

By Mia Maysack, PNN Columnist

Living with persistent pain or chronic illness is enough to push anyone to the brink of insanity. I’ve reached out for mental health assistance in the past, and either regretted it or didn’t feel it was much help at all.

I later came to the realization that therapy could only ever be what we make of it, so I decided to release the disappointment from the past and give it another wholehearted try.

I learned that the therapy process, particularly since COVID-19, is a nightmare. The isolation of the pandemic helped us recognize the importance of mental health, along with the fact that there’s a shortage of providers. It’s now nearly impossible to find a therapist.

It’s even more difficult to come across one that is accepting new patients and whatever insurance you might or might not have. I spent the better part of a year researching, making phone calls and being told no, before I finally came across a situation that seemed promising.

After providing extensive documentation exploring every aspect of my life and then playing the waiting game to get the green light from insurance, I was finally able to move forward with scheduling an appointment at a clinic. It would have been many more months before I could be seen in-person, so I settled for a virtual appointment.

I was happy to connect with a provider, who initially seemed warm and caring. Little did I realize how short lived this would be.

During our conversation, we covered the basics. I attempted to explain how anyone who lives the way that I do must experience some form of depression or sadness, but that doesn’t necessarily mean that I always feel that way. I don’t feel a need to label people as “sad” or “depressed,” for I believe there’s a wide spectrum we all exist on. We can allow ourselves to feel sad or anxious in any given moment, without necessarily committing to that experience permanently.

Prior to this therapy session, I’d been participating in a behavioral health program where a provider would call once every few weeks for a momentary check-in. Being that I had no other support at that time, I was thankful for the resource and couldn’t help but imagine what different points in my life would’ve been like had something like that been available then.

I’m under the impression this check-in option was cultivated during the pandemic in an attempt to alleviate the mental health stress that so many of us were having.  It’s more of a band-aid than anything else, but slowing the emotional bleeding can be the difference between life or death for many.

I remember having a pleasant conversation with someone who reached out. We chatted for about a half hour as they listened to some of my health-related goals, then advised me they’d have someone follow up to ensure the plan was proceeding smoothly.  

At the very last second, they requested I complete a survey -- one that I’d done countless times already: the PHQ-9 questionnaire.  It asks how you were feeling in the last two weeks and to rate your experiences on a numeric scale.  Was I tired? Feeling hopeless? Eating enough? Eating too much? Was I thinking of hurting myself?

Ending the phone call on such a note turned an otherwise enjoyable and productive conversation into a traumatic reminder of the ways I’d been struggling. Then the session was over and I was on my own again.

On the next call, I offered feedback -- mentioning the survey should come sooner in the conversation and empower the patient to choose when they’d complete it or even not take it. That should be my right and my choice.

I was advised that the survey was part of the process of getting a diagnosis. The therapist said this wasn’t so much the clinic’s way of doing things, but rather “served insurance purposes.” That rubbed me the wrong way.

Here I was, absolutely desperate for therapy, but instead of receiving actual help, I was reminded once again that the most important thing for a provider is to collect patient data. With a heavy heart, I chose to end my pursuit of counseling. It feels harmful and unsafe to be reminded that “checking the boxes” is prioritized over the quality of human life.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

Did Covid Vaccine Mandates Do More Harm Than Good?

By Dr. Rachel Gur-Arie, Arizona State University

Ending pandemics is a social decision, not scientific. Governments and organizations rely on social, cultural and political considerations to decide when to officially declare the end of a pandemic. Ideally, leaders try to minimize the social, economic and public health burden of removing emergency restrictions while maximizing potential benefits.

Vaccine policy is a particularly complicated part of pandemic decision-making, involving a variety of other complex and often contradicting interests and considerations. Although COVID-19 vaccines have saved millions of lives in the U.S., vaccine policymaking throughout the pandemic was often reactive and politicized.

A late November 2022 Kaiser Family Foundation poll found that one-third of U.S. parents believed they should be able to decide not to vaccinate their children at all. The World Health Organization and the United Nations Children’s Fund reported that between 2019 and 2021, global childhood vaccination experienced its largest drop in the past 30 years.

The Biden administration formally removed federal COVID-19 vaccination requirements for federal employees and international travelers in May 2023. Soon after, the U.S. government officially ended the COVID-19 public health emergency. But COVID-19’s burden on health systems continues globally.

I am a public health ethicist who has spent most of my academic career thinking about the ethics of vaccine policies. For as long as they’ve been around, vaccines have been a classic case study in public health and bioethics. Vaccines highlight the tensions between personal autonomy and public good, and they show how the decision of an individual can have populationwide consequences.

COVID-19 is here to stay. Reflecting on the ethical considerations surrounding the rise – and unfolding fall – of COVID-19 vaccine mandates can help society better prepare for future disease outbreaks and pandemics.

Types of Vaccine Mandates

Vaccine mandates are the most restrictive form of vaccine policy in terms of personal autonomy. Vaccine policies can be conceptualized as a spectrum, ranging from least restrictive, such as passive recommendations like informational advertisements, to most restrictive, such as a vaccine mandate that fines those who refuse to comply.

Each sort of vaccine policy also has different forms. Some recommendations offer incentives, perhaps in the form of a monetary benefit, while others are only a verbal recommendation. Some vaccine mandates are mandatory in name only, with no practical consequences, while others may trigger termination of employment upon noncompliance.

COVID-19 vaccine mandates took many forms throughout the pandemic, including but not limited to employer mandates, school mandates and vaccination certificates – often referred to as vaccine passports or immunity passports – required for travel and participation in public life.

Because of ethical considerations, vaccine mandates are typically not the first option policymakers use to maximize vaccine uptake. Vaccine mandates are paternalistic by nature because they limit freedom of choice and bodily autonomy. Additionally, because some people may see vaccine mandates as invasive, they could potentially create challenges in maintaining and garnering trust in public health. This is why mandates are usually the last resort.

However, vaccine mandates can be justified from a public health perspective on multiple grounds. They’re a powerful and effective public health intervention.

Mandates can provide lasting protection against infectious diseases in various communities, including schools and health care settings. They can provide a public good by ensuring widespread vaccination to reduce the chance of outbreaks and disease transmission overall. Subsequently, an increase in community vaccine uptake due to mandates can protect immunocompromised and vulnerable people who are at higher risk of infection.

Early in the pandemic, arguments in favor of mandating COVID-19 vaccines for adults rested primarily on evidence that COVID-19 vaccination prevented disease transmission. In 2020 and 2021, COVID-19 vaccines seemed to have a strong effect on reducing transmission, therefore justifying vaccine mandates.

COVID-19 also posed a disproportionate threat to vulnerable people, including the immunocompromised, older adults, people with chronic conditions and poorer communities. As a result, these groups would have significantly benefited from a reduction in COVID-19 outbreaks and hospitalization.

Many researchers found personal liberty and religious objections insufficient to prevent mandating COVID-19 vaccines. Additionally, decision-makers in favor of mandates appealed to the COVID-19 vaccine’s ability to reduce disease severity and therefore hospitalization rates, alleviating the pressure on overwhelmed health care facilities.

However, the emergence of even more transmissible variants of the virus dramatically changed the decision-making landscape surrounding COVID-19 vaccine mandates.

The public health intention (and ethicality) of original COVID-19 vaccine mandates became less relevant as the scientific community understood that achieving herd immunity against COVID-19 was probably impossible because of uneven vaccine uptake, and breakthrough infections among the vaccinated became more common. Many countries like England and various states in the U.S. started to roll back COVID-19 vaccine mandates.

With the rollback and removal of vaccine mandates, decision-makers are still left with important policy questions: Should vaccine mandates be dismissed, or is there still sufficient ethical and scientific justification to keep them in place?

Vaccines are lifesaving medicines that can help everyone eligible to receive them. But vaccine mandates are context-dependent tools that require considering the time, place and population they are deployed in.

Though COVID-19 vaccine mandates are less of a publicly pressing issue today, many other vaccine mandates, particularly in schools, are currently being challenged. I believe this is a reflection of decreased trust in public health authorities, institutions and researchers – resulting in part from tumultuous decision-making during the COVID-19 pandemic.

Engaging in transparent and honest conversations surrounding vaccine mandates and other health policies can help rebuild and foster trust in public health institutions and interventions.

Rachel Gur-Arie, PhD, is an assistant professor with Edson College of Nursing and Health Innovation at Arizona State University. Her expertise lies at the intersection of ethics, global health and policy. Prior to joining ASU, Rachel was a Hecht-Levi postdoctoral Fellow, focused on ethics and infectious disease, at Johns Hopkins University and the University of Oxford. She completed her doctorate in health systems management and served as a Fulbright Scholar at Ben-Gurion University of the Negev in Israel.

This article originally appeared in The Conversation and is republished with permission.

Massage Therapists Ease Pain of Hospice Patients — But Are Hard to Find

By Kate Ruder, KFF Health News

Ilyse Streim views massage for people in hospice care as “whispering to the body through touch.”

“It’s much lighter work. It’s nurturing. It’s slow,” said Streim, a licensed massage therapist.

Massage therapy for someone near the end of life looks and feels different from a spa treatment. Some people stay clothed or lie in bed. Others sit up in their wheelchairs. Streim avoids touching bedsores and fresh surgery wounds and describes her work as “meditating and moving at the same time.”

She recalled massaging the shoulders, hands, and feet of one client as he sat in his favorite recliner and watched baseball on TV in the final weeks of his life.

“When you’re dying and somebody touches you without expectation of anything in return, you just get to be,” said Streim.

Massage therapists like Streim, who specializes in working with people who are dying or have an advanced form of cancer or other illness, are rare. Fewer than 1% of therapists specialize in hospice or palliative care massage, according to research by the American Massage Therapy Association, although many more may periodically offer massage for hospice patients.

Streim has a private practice in Lafayette, Colorado and her clients pay her out-of-pocket, as Medicare and private insurance typically don’t cover massage therapy. She also volunteers as a hospice massage therapist four hours a month.

It’s common for hospice organizations to use volunteer therapists for treatments, though some massage therapists, with physicians backing them, are pushing for paid positions as part of medical teams working alongside nurses and social workers.

In the hospice unit at Palo Alto VA Medical Center, in Palo Alto, California, for example, massage therapists have been integral members of the multidisciplinary team for decades, said VJ Periyakoil, a professor of medicine at Stanford University and the founding director of its palliative care education and training program.

The covid-19 pandemic made the recruitment of specialists for this intimate work, both paid and volunteer, more difficult, as the pool of massage therapists shrank amid school closures and exits from the profession. There are up to 10% fewer massage therapists today than before the pandemic, according to Les Sweeney, president of Associated Bodywork & Massage Professionals.

“It’s still hard for us to hire and recruit therapists,” said Kerry Jordan, operations director at Healwell, a nonprofit that trains and employs massage therapists to work in hospitals in the Washington, D.C., area.

‘We Need to Get More Therapists’

For three weeks in April 2020, licensed massage therapist Cindy Spence, who works at Faith Presbyterian Hospice in Dallas, could not massage patients due to the state’s lockdown orders. Then, the state granted an allowance for massage therapists like her, working in medical settings under supervision, to resume giving massages. But it took several months for many therapists to return to work, and some didn’t return at all, Spence said.

“The pandemic was not kind to massage therapists,” Spence said. “And so we have lost a lot of people like me who are of an age and experience level that would really be called to and suitable” for oncology, hospice, and palliative massage.

“We need to get more therapists trained,” she said. She described receiving several calls each month from people who have found her name online. It has become harder since covid to find a therapist to refer them to, Spence said.

At TRU Community Care, which operates in several locations in Colorado, Volunteer Services Supervisor Wendy Webster said massages are a top request from patients and their families, but they’re limited in how many sessions they can offer, with only two volunteer massage therapists. (A third volunteer did not return after the pandemic.)

Finding new massage therapist volunteers is challenging, said Webster, in part because they can earn money in other settings and “they’re coming to us for free.” Thirty years ago, TRU Community Care’s nonprofit status was the norm, but now the majority of hospices are for-profit, with growing investment from private equity.

Despite that shift, hospices still rely heavily on volunteers. Medicare pays for at least six months of hospice for a patient on the condition that providers use volunteers for at least 5% of the patient-care hours worked by paid staff and contractors. Sometimes, those volunteer hours are filled by massage therapists.

“All hospices, not-for-profit or for profit alike, should aim to include medically-trained massage therapists as part of best holistic care,” Hunter Groninger, a professor of medicine at Georgetown University who directs palliative care at MedStar Washington Hospital Center in Washington, D.C., wrote in an email. Employing these specialists is beneficial and does not diminish the important service of volunteers, particularly in end-of-life care, he added.

Benefits of Massage

More studies on the impact of specialized massage could enact changes in the field, said Cal Cates, founder and executive director of Healwell, which, since 2009, has trained 500 therapists in hospital-based and oncology massage, as well as in how to work collaboratively with doctors and nurses.

In a recent clinical trial of 387 patients in palliative care at MedStar, including some nearing the end of their lives, Groninger, Cates, Jordan, and other co-authors found that massage therapy improved quality of life.

Despite new research on the benefits of massage, Cates said, many hospices bring on volunteers who don’t have advanced training, because hospices may not know that specialized training — such as the kind Healwell offers — exists.

Streim, who paid for her own classes in oncology and lymphatic massage, said that investment in education qualified her for a six-year career as an oncology massage therapist at Good Samaritan Medical Center’s Center for Integrative Medicine in Lafayette and later her private practice. She teaches classes in adapting massage for the elderly and those with illnesses at Boulder Massage Therapy Institute. In her 39 years as a therapist, Streim has done it all: volunteer, staff, entrepreneur, teacher.

Like Streim, Spence has continually redefined her role. She began in private practice before becoming an employee of a large hospice agency in which she traveled across nine counties in Texas, giving thousands of massages to people dying in their homes, assisted living communities, and skilled nursing homes. Today, at Faith Presbyterian Hospice, she is one of three licensed massage therapists on staff and fully integrated as an employee of the organization, which has more than 100 patients.

“Those of us who do this work have made big investments in our profession and I’m glad to see that we can be paid for it,” she said.

Spence collects data on how patients rate their pain on a scale of 1 to 10 before and after a massage. Most fall asleep during the massage, which she takes as an indication their pain has lessened or they became more relaxed. Of those who stay awake, almost all say their pain subsided significantly or went away completely.

That kind of positive engagement with providers is more urgent than ever since the pandemic, Groninger said. Spence agreed: “The pandemic taught us all, in a very painful way, what it’s like to be deprived of human touch and human connections.”

Sometimes the nursing staff at Faith Presbyterian will roll a bed out onto the patio so a patient can hear the sounds of nature and the fountain gurgling during Spence’s massage. There is more teasing and laughter than she would have imagined. For patients unable to speak, Spence watches their reactions carefully: a deep exhalation or the face and body softening. Sometimes it’s tears running down their cheeks.

“It’s profound, helping someone find safe breaths along this very difficult dying journey,” she said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

100,000 ‘Unnecessary’ Hospital Procedures Performed in First Year of Pandemic

By Pat Anson, PNN Editor

U.S. hospitals performed over 100,000 “low-value” procedures on Medicare patients in the first year of the Covid pandemic, including tens of thousands of spinal surgeries and knee arthroscopies, according to a recent study by the Lown Institute, a non-profit that seeks to reduce the use of unnecessary and ineffective medical treatments.

In 2020, no vaccines were available, the elderly were particularly vulnerable to the Covid-19 virus, and intensive care units were filled with infected patients. Yet many hospitals continued to perform questionable elective procedures at the same rate they did in 2019.

“You couldn’t go into your local coffee shop, but hospitals brought people in for all kinds of unnecessary procedures,” Vikas Saini, MD, president of the Lown Institute, said in a statement. “The fact that a pandemic barely slowed things down shows just how deeply entrenched overuse is in American healthcare.”

Lown researchers analyzed Medicare claims from U.S. hospitals for eight procedures that the non-profit considers to have “little to no clinical benefit” and are potentially harmful.  

Coronary stents were the most overused procedure, with over 45,000 balloon angioplasties performed to open up blocked arteries. The Lown Institute has long maintained that stents are unnecessary and risky in patients with stable heart disease.

Two spinal surgeries also made the list: 13,541 spinal fusions and 16,553 vertebroplasties were performed on older patients. In vertebroplasty, bone cement is injected into fractured vertebrae to stabilize the spine; while spinal fusions are used to join two or more vertebrae together to prevent them from moving and causing more pain. The Lown Institute considers fusions and vertebroplasties inappropriate for patients with low back pain and osteoporosis.

Nearly 1,600 knee arthroscopies were also performed in 2020, a type of “keyhole” surgery in which a small incision is made in the knee to diagnose and repair ligaments damaged by overuse or osteoarthritis. Recent independent studies have found arthroscopic surgeries provide only temporary relief from knee pain and do not improve function long term.

“There are certain things, certain practices that are just insane. You shouldn’t be doing this. Nobody should pay for this,” said Saini.

Highland Hospital in Rochester, New York was rated as the top hospital in the country for avoiding overuse procedures. Richardson Medical Center in Rayville, Louisiana was ranked as the worst hospital.

The American Hospital Association disputed Lown's ranking system, calling it misleading.

"Throughout the pandemic, but especially in the early months, many nonessential services and procedures were put off due to government restrictions or voluntary actions from hospitals to make room for massive surges of COVID-19 patients," Aaron Wesolowski, AHA's VP of policy research, said in a statement to Becker’s Hospital Review.

"Studies have shown that these delays or sometimes even cancelations in nonemergent care have had some negative outcomes on the health and well-being of patients, who continue to show up at the hospital sicker and with more advanced illnesses. Many of these services may alleviate patients' pain or provide other help to patients. Lown may define these services as 'low value,' but they can be of tremendous value to the patients who receive them."

Cognitive Problems Persist in Patients with Long Covid

By Pat Anson, PNN Editor

About 70% of people with long covid have concentration and memory problems several months after their initial infection with Covid-19, according to new research at the University of Cambridge. The severity of the symptoms appears to be linked to the level of fatigue and headache people experienced during their initial illness.

Long covid is a poorly understood disorder characterized by body pain, fatigue, cognitive impairment and difficulty sleeping. About a third of people infected with coronavirus develop symptoms that can last for many months.   

In their study of 181 long covid patients, published in the journal Frontiers in Aging Neuroscience, researchers found that 78% reported difficulty concentrating, 69% had brain fog, 68% experienced forgetfulness, and 60% had trouble finding the right word to use in speech. They also performed poorly in cognitive tests, with significantly lower ability to remember words and pictures.

“This is important evidence that when people say they’re having cognitive difficulties post-COVID, these are not necessarily the result of anxiety or depression. The effects are measurable - something concerning is happening,” said co-author Muzaffer Kaser, PhD, a psychiatrist and researcher at the University of Cambridge. “Memory difficulties can significantly affect people’s daily lives, including the ability to do their jobs properly.”

The findings are further evidence that Covid-19 will have a lasting impact around the world, long after the pandemic subsides. Cambridge researchers say their study supports other findings that suggest society will face a “long tail” of workforce illness due to long covid.

“Long covid has received very little attention politically or medically. It urgently needs to be taken more seriously, and cognitive issues are an important part of this. When politicians talk about ‘Living with COVID’ – that is, unmitigated infection, this is something they ignore. The impact on the working population could be huge,” said senior author Lucy Cheke, PhD, a psychologist and lecturer at Cambridge.

To help understand the cause of the cognitive problems, Cheke and her colleagues investigated other symptoms that might be linked. They found that people who experienced fatigue and neurological symptoms, such as dizziness and headache, during their initial illness were more likely to have cognitive issues later on.

Participants were assigned to carry out multiple tasks to assess their decision-making and memory. These included remembering words on a list, and remembering which two images appeared together. The results revealed a consistent pattern of memory problems in people with long covid -- problems that were more pronounced in those whose initial neurological symptoms were more severe.

“People think that long covid is ‘just’ fatigue or a cough, but cognitive issues are the second most common symptom - and our data suggest this is because there is a significant impact on the ability to remember. There is growing evidence that COVID-19 impacts the brain, and our findings reflect that,” said Cheke.

Study participants were recruited between October 2020 and March 2021, when the Alpha variant and the original form of SARS-CoV-2 were still the dominant forms of the virus.

Very few of the patients had symptoms severe enough to be admitted to a hospital. But even among those who were not hospitalized, researchers found that people with severe initial symptoms were more likely to develop long covid than those with mild symptoms. They also found that people over 30 were more likely to have severe ongoing symptoms than younger ones.

“Infection with the virus that causes COVID-19 can lead to inflammation in the body, and this inflammation can affect behaviour and cognitive performance in ways we still don’t fully understand, but we think are related to an early excessive immune response,” said Kaser.

As is often the case with chronic illness, half of the patients with long covid reported difficulty getting medical providers to take their symptoms seriously, perhaps because cognitive symptoms do not get the same attention as respiratory problems.

The Cambridge study currently has no data on long covid associated with the Delta or Omicron variants of coronavirus, although new patients are being recruited to fill that void. The researchers say more studies are needed to understand the complex effects of Covid on the brain, cognition and mental health.

One way to reduce your risk of long covid is to get vaccinated. A UK study last year found that people who received the Moderna, Pfizer or AstraZeneca vaccines had significantly lower risk of an infection that turns into long covid.

A Disabled Activist Speaks Out About Feeling ‘Disposable’

By Rachel Scheirer, Kaiser Health News

In early January, one of the country’s top public health officials went on national television and delivered what she called “really encouraging news” on covid-19: A recent study showed that more than three-fourths of fatalities from the omicron variant of the virus occurred among people with several other medical conditions.

“These are people who were unwell to begin with,” said Dr. Rochelle Walensky, director of the Centers for Disease Control and Prevention.

Walensky’s remarks infuriated Americans with disabilities, who say the pandemic has highlighted how the medical establishment — and society at large — treats their lives as expendable. Among those leading the protest was San Franciscan Alice Wong, an activist who took to Twitter to denounce Walensky’s comments as “ableism.” Walensky later apologized.

Wong, 47, moves and breathes with the aid of a power wheelchair and a ventilator because of a genetic neuromuscular condition. Unable to walk from around age 7, she took refuge in science fiction and its stories of mutants and misunderstood minorities.

Her awakening as an activist happened in 1993, when she was in college in Indiana, where she grew up. Indiana’s Medicaid program had paid for attendants who enabled Wong to live independently for the first time, but state cuts forced her to switch schools and move back in with her parents.

Wong relocated to the Bay Area for graduate school, choosing a state that would help her cover the cost of hiring personal care attendants. She has since advocated for better public health benefits for people who are poor, sick, or older or have disabilities.

Eddie Hernandez for KHN

The founder of the Disability Visibility Project, which collects oral histories of Americans with disabilities in conjunction with StoryCorps, Wong has spoken and written about how covid and its unparalleled disruption of lives and institutions have underscored challenges that disabled people have always had to live with. She has exhorted others with disabilities to dive into the political fray, rallying them through her podcast, Twitter accounts with tens of thousands of followers, and a nonpartisan online movement called #CriptheVote.

Wong is nocturnal — she typically starts working at her computer around 9 p.m. On a recent evening, she spoke with KHN via Zoom from her condo in the city’s Mission District, where she lives with her parents, immigrants from Hong Kong, and her pet snail, Augustus. The interview has been edited for length and clarity.

Q: Why do you often refer to people with disabilities as oracles?

Disabled people have always lived on the margins. And people on the margins really notice what’s going on, having to navigate through systems and institutions, not being understood. When the pandemic first hit, the public was up in arms about adjusting to life at home — the isolation, the lack of access. These are things that many disabled and chronically ill people had experienced. Disabled people had been trying forever to advocate for online learning, for accommodations in the workplace. The response was: “Oh, we don’t have the resources. It’s just not possible.”

But with the majority inconvenienced, it happened. Suddenly people actually had to think about access, flexibility. That is ableism, where you don’t think disabled people exist, you don’t think sick people exist.

Q: Have you noticed that kind of thinking more since the pandemic began?

Well, yes, in the way our leaders talk about the risks, the mortality, about people with severe illnesses, as if they’re a write-off. I am so tired of having to assert myself. What kind of world is this where we have to defend our humanity? What is valued in our society? Clearly, someone who can walk and talk and has zero comorbidities. It is an ideology, just like white supremacy. All our systems are centered around it. And so many people are discovering that they’re not believed by their doctors, and this is something that a lot of disabled and sick people have long experienced.

We want to believe in this mythology that everybody’s equal. My critique is not a personal attack against Dr. Walensky; it’s about these institutions that historically devalued and excluded people. We’re just trying to say, “Your messaging is incredibly harmful; your decisions are incredibly harmful.”

Q: Which decisions?

The overemphasis on vaccinations versus other mitigation methods. That is very harmful because people still don’t realize, yeah, there are people with chronic illnesses who are immunocompromised and have other chronic conditions who cannot get vaccinated. And this back and forth, it’s not strong or consistent about mask mandates.

With omicron, there is this huge pressure to reopen schools, to reopen businesses. Why don’t we have free tests and free masks? You’re not reaching the poorest and the most vulnerable who need these things and can’t afford them.

Q: How has your life changed during the pandemic?

For the last two years, I have not been outside except to get my vaccinations.

Q: Because you’re so high-risk?

Yeah. I have delayed so many things for my own health. For example, physiotherapy. I don’t get lab tests. I’ve not been weighed in over two years, which is a big deal for me because I should be monitoring my weight. These are things I’ve put on hold. I don’t see myself going in to see my doctor any time this year. Everything’s been online — it’s in a holding pattern.

How long can I take this? I really don’t know. Things might get better, or they might get worse. So many things disabled people have been saying have been dismissed, and that’s been very disheartening.

Q: What kinds of things?

For example, in California, it was almost this time last year when they removed the third tier for covid vaccine priority. I was really looking forward to getting vaccinated. I was thinking for sure that I was part of a high-risk group, that I’d be prioritized. And then the governor announced that he was eliminating the third tier that I was a part of in favor of an age-based system. For young people who are high-risk, they’re screwed. It just made me so angry.

These kinds of decisions and values and messages are saying that certain people are disposable. They’re saying I’m disposable. No matter what I produce, what value I bring, it doesn’t matter, because on paper I have all these comorbidities and I take up resources. This is wrong, it’s not equity, and it’s not justice. It took a huge community-based effort last year to get the state to backtrack. We’re saying, “Hey we’re here, we exist, we matter just as much as anyone else.”

Q: Do you think there’s any way this pandemic has been positive for disabled people?

I hope so. There’s been a lot of mutual aid efforts, you know, people helping each other. People sharing information. People organizing online. Because we can’t wait for the state. These are our lives on the line. Things were a little more accessible in the last two years, and I say a little because a lot of universities and workplaces are going backward now. They’re doing away with a lot of the hybrid methods that really gave disabled people a chance to flourish.

Q: You mean they’re undoing things that helped level the playing field?

Exactly. People who are high-risk have to make very difficult choices now. That’s really unfortunate. I mean, what is the point of this if not to learn, to evolve? To create a new normal. I can’t really see that yet. But I still have some hope.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Covid Made Healthcare Even More Difficult for People with Chronic Illness

By Roger Chriss, PNN Columnist

As the U.S. enters its third year of the pandemic, Covid is changing chronic illness care in important ways. Not only is long Covid being recognized as a new chronic illness, but the pandemic’s impact on hospitals, drugs and medical supplies, and everyday life for people with chronic illnesses is growing.

The CDC recognized the problem last year. Not only are people with chronic illnesses like diabetes, heart disease, chronic obstructive pulmonary disease (COPD) and kidney disease at greater risk of severe illness from Covid-19, the CDC says the pandemic has “raised concerns about safely accessing health care and has reduced the ability to prevent or control chronic disease.”

Hospitals have repeatedly had to delay routine care in the past two years. As hospitals run short on staff and beds, people whose medical conditions require regular care are struggling to keep appointments. NBC News reported last month that “prolonged lack of access to medical care because of Covid surges is having an outsize effect on patient care.”

The American College of Surgeons is warning that delayed elective surgeries “can lead to more complicated operations and longer recovery times because disease can progress during the delay.” Moreover, delays in cancer screening can lead to further progression of the disease and more complex surgeries.

Recently the American Red Cross put out an urgent call for blood donors because the pandemic and winter weather have combined to force the cancellation of hundreds of blood drives, creating the worst blood shortage in over decade. The “blood crisis” is so severe that doctors have to decide which patients will get blood transfusions and who will have to wait.

The pandemic has also impacted the drug supply for chronic illness. False claims about hydroxychloroquine being an effective treatment for Covid in early 2020 led to shortages for people with lupus and other autoimmune disorders who need the drug, which took many months to correct. In 2021, claims the anti-parasitic drug ivermectin could also treat Covid led to shortages.

Now in early 2022 the antibody drug Evusheld, which can help protect immunosuppressed people against COVID-19, is in short supply. NPR reported Evusheld is so hard to get that some hospitals are selecting patients by lottery.

Medical supplies are still difficult to find. While some people protest any form of mandatory face covering, masks have been a way of life for immunocompromised people for many years. A high-quality mask like a N95 can literally save lives, and such masks are still in short supply. The same for nitrile gloves and other simple medical supplies that may be essential for at-home care.

Covid is also impacting everyday life. People with chronic illness, in particular those with compromised immune systems, do not have the luxury of being “done with Covid.” The ongoing presence of a viral pathogen will limit them for the foreseeable future. Even when the omicron Covid surge starts to wane, they will need to keep using high-quality masks, weighing risks when going out, and tracking possible exposure.  

"There is a casual acceptance that the pandemic will turn into something endemic, an inevitability that ‘everyone’ will get COVID eventually,” disability rights advocate Alice Wong told NPR. “Leaders, medical professionals and public health experts have said something along those lines with zero acknowledgement that people will still die and those deaths will be disproportionately from high-risk groups.”

It has become trite to say that Covid mostly affects people with “comorbidities.” It’s important to note that comorbidities are found in the vast majority of people over 30, and that chronic illness is a fact of life for some people that cannot be cured. Covid impacts their lives in significant ways. Hopefully, public health officials can come up with new approaches that don’t require the chronically ill to risk more and endure more as the rest of the country tries to get back to normal.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.  

Covid Lockdowns Hurt Women with Chronic Pain More Than Men

By Pat Anson, PNN Editor

Covid-19 lockdowns appear to have had a bigger impact on women living with chronic pain than men, according to a new study in Europe. Researchers say female patients experienced greater pain severity, as well as more stress, anxiety and financial uncertainty compared to men.

 “Our research suggests that the pandemic may have exacerbated chronic pain problems and some gendered inequalities,” says lead author Kordula Lang-Illievich, MD, from the Medical University of Graz in Austria. “With chronic pain affecting around 20% of the EU adult population, it is vital to understand how people living with chronic pain are being affected by the pandemic and to develop pain management interventions that clearly target women.”

To investigate how the first pandemic lockdown impacted chronic pain patients in Germany, Austria, and Switzerland, researchers invited adults taking part in self-help groups who experienced pain for at least one year to complete an online survey in July 2020. Of the 579 people who responded, over 75% were women.

Participants were asked to rate their pain levels before and during the lockdown using the 0-100 Visual Analogue Scale (VAS), as well as their pain management, physical activity, social and psychological health.

While the average pain intensity score before the lockdown was similar for men (46.5 on the VAS scale) and women (45), the increase in pain levels during the lockdown was much lower in men (0.8) than women (3.9).

“Our data clearly show that women experienced a higher aggravation of chronic pain during the first lockdown,” said Lang-Illievich. “This is likely to reflect the disproportionate impact of lockdowns on women, especially the extra caregiving responsibilities, rise in domestic violence, and their increased vulnerability to anxiety, depression and acute stress — all of which would be expected to impact pain symptoms.”

There are several limits to the study, including the over-representation of young women, single participants, and those with higher education, as well as the reliance on self-reporting. The research is being presented at Euroanaesthesia, the annual meeting of the European Society of Anaesthesiology and Intensive Care.

More Americans Using Cannabis to Treat Chronic Pain Than Opioids

By Pat Anson, PNN Editor

Twice as many Americans are now using cannabis or cannabidiol (CBD) to manage their chronic pain than opioid medication, according to a new Harris Poll that found significant changes in pain management in the U.S. since the onset of the Covid-19 pandemic.

Over-the-counter pain relievers are used by over half (53%) of those surveyed, followed by cannabis products (16%) and non-opioid pain relievers (11%). Opioid pain medication is being used by only 8% of Americans with chronic pain. Non-drug treatments such exercise, heat/ice and healthy eating are also being widely used to relieve pain.

TREATMENTS USED TO MANAGE CHRONIC PAIN

SOURCE: SAMUELI FOUNDATION

The online survey of 2,063 adults was conducted last month on behalf of the Samueli Foundation. About half the participants said they were currently experiencing chronic pain.

One of the more surprising results is that young adults, aged 18 to 34, are more likely to have chronic pain than older ones (65% vs. 52% of those aged 35 and older).

“It is surprising, but we do know from other research that younger people are less healthy overall than older adults were at their age, so the higher prevalence of pain may be related to that. It seems that younger generations are facing health issues that were not experienced by older generations, causing them to be sicker and in more pain at a younger age,” said Wayne Jonas, MD, executive director of Integrative Health Programs at Samueli Foundation.

“There are a number of factors that could be at play here – and most of them can be attributed to lifestyle factors. Things like a poor diet, a lack of exercise, the growing pace of change and stress and very little self-care can lead to issues with a person’s health – physically, mentally, and emotionally. Chronic pain is a whole person issue with stress and social isolation contributing to its perpetuation. This is an issue that needs to be addressed in this population to ensure that as they age, their health doesn’t become precipitously worse.”

More than one in five young adults who have chronic pain (22%) said they use cannabis and/or CBD oil for pain, and they are twice as likely to do so compared to those aged 45 and older (11%).

“I think it’s clear that young people are looking for ways to manage their pain on their own – through self-care. And CBD and cannabis products are increasingly available and legal. People are feeling like they need to find their own ways to manage their pain because the care provided them may be lacking,” said Jonas, a clinical professor of Family Medicine at Georgetown University School of Medicine and former director of the National Institute of Health’s Office of Alternative Medicine.

The survey found that most adults with chronic pain don’t feel that healthcare providers are giving them adequate information on how to manage their pain. Nearly 80% wished their pain was taken more seriously by providers and 68% wished they had more information about how to treat chronic pain.

That lack of information – and no doubt the decreasing availability of opioids – has led to some experimentation. Two-thirds of Americans with chronic pain (66%) say they have changed their pain management since the pandemic began, such as using more OTC pain relievers and cannabis products. There is also more willingness to use non-drug treatments, such as exercise, healthier eating, massage, physical therapy, and mindfulness or meditation to reduce stress.

About 1 in 4 Americans say stress, anxiety and lack of sleep made their chronic pain worse during the pandemic. The vast majority of people in chronic pain (83%) say their quality of life would greatly improve if they were better able to manage it.

“This should be a wake-up call to physicians that their patients are looking for more information from them about managing their chronic pain, especially for non-drug approaches.” said Jonas.

Spread of Delta Variant ‘Going to Get Worse’

By Liz Szabo, Kaiser Health News

Upon first inspection, the mutations in the highly contagious delta covid variant don’t look that worrisome.

For starters, delta has fewer genetic changes than earlier versions of the coronavirus.

“When people saw that the epidemic in India was driven by delta, they did not suspect it would be so bad or overtake other variants,” said Trevor Bedford, an evolutionary biologist at the Fred Hutchinson Cancer Research Center.

But those expectations were wrong.

Delta has kept some of the most successful mutations found in earlier variants, but also contains new genetic changes that enable it to spread twice as fast.

Delta is more dangerous in many ways. It has an incubation period of four days, rather than six, making people contagious sooner. When the pandemic began, people spread the original coronavirus to an average of two or three people. Today, people infected with delta infect six people, on average.

As of this week, the delta variant had caused at least 92% of the new infections in the United States, according to covariants.org, a research firm in Bern, Switzerland.

Although delta isn’t necessarily any more lethal than other variants, it can kill huge numbers of people simply because it infects so many more, said Dr. Eric Topol, founder and director of the Scripps Research Translational Institute.

Scientists have sequenced delta’s mutations but are still trying to understand their significance, said Angela Rasmussen, a virologist at the University of Saskatchewan’s Vaccine and Infectious Disease Organization. “When we see the same mutations appearing repeatedly and independently, that suggests they’re important,” Rasmussen said.

Scientists have the best understanding of mutations on the so-called spike protein — which sticks out from the surface of the virus like a club — and which have been studied the most intensely because of its serious ramifications, Rasmussen said. The coronavirus uses the spike protein to enter human cells, and changes in the spike can help the virus evade antibodies.

Scientists believe one of the most important areas of the spike is the receptor-binding domain, the specific part of the protein that allows the virus to latch onto a receptor on the surface of our cells, said Vaughn Cooper, a professor of microbiology and molecular genetics at the University of Pittsburgh. Receptors are like sockets or docking stations that allow proteins to interact with the cell. Once the virus gains entry to the cell, it can cause havoc, hijacking the cell’s genetic machinery and turning it into a virus-making factory.

Delta’s Worrisome Mix

Delta’s rapid spread is particularly surprising given it lacks two mutations that made earlier variants so scary.

Delta doesn’t have the N501Y spike mutation found in the alpha, beta and gamma variants, which enabled them to invade cells more successfully than the original virus. That mutation changed one amino acid — a building block of proteins — in the receptor-binding domain.

Delta also lacks the E484K mutation, which has made the gamma variant so worrisome. This genetic change, sometimes called “Eek,” allows the virus to spread even among vaccinated people.

Scientists use the Greek alphabet to name variants of concern. “The ‘D’ in delta stands for ‘different’ and a ‘detour’ to a different genomic mutation path,” Topol said. “But it doesn’t mean ‘doom,’” he said, noting that existing covid vaccines remain mostly effective against the delta variant.

Vaccines protect people from covid by providing them with antibodies that attach themselves to the spike protein, preventing the virus from entering cells. By dramatically reducing the number of viruses that enter cells, vaccines can prevent people from developing severe disease and make them less infectious to others.

Delta does share mutations with other successful variants. Like all the identified variants in circulation, delta contains a spike mutation called D614G, sometimes known as “Doug,” which became ubiquitous last year.

Scientists think Doug increases the density of spike protein on the surface of viral particles and makes it easier for the virus to enter cells.

Delta also has a spike mutation called P681R, which closely resembles a mutation in the alpha variant that appears to produce higher viral loads in patients, Cooper said. People infected with delta have 1,000 times more virus in their respiratory tract, making them more likely to spread the virus when they sneeze, cough or talk.

The P681R mutation, also found in the kappa variant, is located at the beginning of a part of the genome called the furin cleavage site, Cooper said.

Furin is a naturally occurring human enzyme that gets hijacked by the coronavirus, which uses it to slice the spike protein into the optimal shape for entering the cell, Rasmussen said. The new mutation makes that sculpting more efficient, Rasmussen said.

Another delta mutation — also found in kappa and epsilon — is called L452R. Experiments suggest this mutation, which also affects the receptor-binding domain, acts to prevent antibodies from neutralizing the virus, Cooper said.

These mutations appear to be more formidable as a team than alone.

The genetic changes “are certainly doing something, but why that combination makes the delta variant more fit is not entirely obvious,” Bedford said. “Putting them together seems to matter.”

Delta also has developed genetic changes not seen in other variants.

One such spike mutation is called D950N. “This might be unique,” Cooper said. “We don’t see that anywhere else.”

The D950N mutation is different than other mutations because it’s located outside the receptor-binding domain in an area of the coronavirus genome that helps the virus fuse with human cells, Cooper said. Fusing with human cells allows the coronavirus to dump its genetic material into those cells.

This mutation could affect which types of cells the virus infects, potentially allowing it to harm different organs and tissues. Mutations in this region are also associated with higher viral loads, Cooper said.

Delta also contains mutations in a part of the spike protein called the N-terminal domain, which provides a “supersite” for antibodies to latch onto the virus and prevent it from entering cells, said Dr. Hana Akselrod, an infectious diseases specialist at the George Washington University School of Medicine & Health Sciences.

Mutations in this region make monoclonal antibodies less effective in treating covid and increases the delta variant’s ability to escape vaccine-generated antibodies, Akselrod said. That may explain why vaccinated people are slightly more likely to become infected with delta, causing mostly mild illness but allowing them to transmit the virus.

Delta’s Future Course

Scientists say it’s impossible to predict exactly how delta will behave in the future, although Topol said, “It’s going to get worse.”

Topol noted that delta outbreaks tend to last 10 to 12 weeks, as the virus “burns through” susceptible populations.

If the United States continues to follow a pattern seen in the United Kingdom and the Netherlands, infections could rise from the current seven-day moving average of 42,000 cases to 250,000 a day. Yet Topol said the United States is unlikely to suffer the high death rates seen in India, Tunisia and Indonesia because nearly half the population here is fully vaccinated.

While some studies have concluded that the Johnson & Johnson vaccine stimulates strong and persistent antibodies against delta, a new report found that antibodies elicited by one shot may not be enough to neutralize delta. Authors of that study, from the New York University Grossman School of Medicine, suggested a second dose may be needed.

Two doses of the Pfizer-BioNTech vaccine protect 94% of people from any symptomatic infection by the alpha variant, compared with 88% against the delta variant, according to a new study in the New England Journal of Medicine. Two doses of the AstraZeneca vaccine protect 75% of people from alpha and 67% from delta.

Cooper said covid vaccines offer remarkably good protection. “I will always celebrate these vaccines as the scientific achievements of my lifetime,” he said.

The best way to slow down the evolution of variants is to share vaccines with the world, vaccinating as many people as possible, Bedford said. Because viruses undergo genetic changes only when they spread from one host to another, stopping transmission denies them a chance to mutate.

Whether the coronavirus evolves more deadly variants “is totally in our hands,” Cooper said. “If the number of infections remains high, it’s going to continue to evolve.”

By failing to contain the virus through vaccination, wearing masks and avoiding crowds, people are allowing the coronavirus to morph into increasingly dangerous forms, said Dr. William Haseltine, a former Harvard Medical School professor who helped design treatments for HIV/AIDS.

“It’s getting better, and we’re making it better,” he said. “Having half the population vaccinated and half unvaccinated and unprotected — that is the exact experiment I would design if I were a devil and trying to design a vaccine-busting virus.”

Kaiser Health News is a national health policy news service. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

Coping With Pain and Isolation During the Pandemic

By Alexa Mikhail, The 19th

Originally published by The 19th

Even before the pandemic, Sabra Thomas ordered her groceries. The 33-year-old has not been able to push a cart and her walker at the same time for years, and she can’t pick up heavy cases like water. 

It’s the pain — the invisible enemy she faces daily.  

In March 2020, when the pandemic set in and grocery orders surged, Thomas was never able to get hers delivered in time. She had to start placing orders five weeks ahead, and they kept getting canceled. 

“I desperately needed food,” said Thomas, who has lived alone for the bulk of the pandemic. “And because of my chronic pain and feeling like food options were limited, I was rationing out my meals. Many days I had to figure out how to balance taking meds and how much to eat.” 

Tasks that seem quotidian to so many have brought Thomas anxiety for years. At age 12, Thomas was diagnosed with Ehlers Danlos — a degenerative chronic pain condition affecting connective tissue, primarily the skin, joints and blood vessel walls. 

She suspected, and later confirmed, that she was having hip dislocations all through childhood, which were constantly dismissed by doctors when she was younger, she said. When she finally received her diagnosis, she was told the disease would only progress as she got older. In high school, she was able to be more active, but the plays Thomas used to act in, the basketball and dance that defined her when she was growing up, have become nearly impossible activities now. The former dance instructor hasn’t danced in over a year. 

On a good day prior to the pandemic, Thomas might go dance for a few hours with friends — though she would pay for it the next day. On a bad day, she was completely bedridden, usually waking up with joint dislocation, a migraine, vertigo or a combination of the three. The pain is always hidden.

“With a chronic pain condition, it’s like ‘OK, you look normal.’ I used to hate when people said that. What the heck does that mean, I look normal?” Thomas said. “I don’t feel normal.” 

Now, Thomas lives in an apartment alone in Birmingham, Alabama, so she can be closer to family. Before moving, she hadn’t seen her family for a year. After pandemic-induced isolation and struggling to secure medical appointments, Thomas is tired. As a Black woman with chronic pain, she’s had to be her own medical advocate, she said. 

“I’m here by myself. All I can focus on is my pain and the loneliness,” Thomas said. “I was feeling trapped, hopeless in all facets of my life.” 

Disparities in Pain Care

In the United States, 70 percent of people struggling with some form of chronic pain are women, despite 80 percent of studies on pain involving either men or mice. It’s a common pitfall of medical research that experts say could be because it is harder to get women of childbearing age to participate in studies. While research on pain is difficult given the ambiguous factors involved in feeling it, women report experiencing higher levels of pain than men, according to a study in Scientific American magazine. 

There are vast disparities across both racial and gender lines when it comes to the validation of pain and getting treatment. Black patients are 40 percent less likely to receive medication for acute pain compared to White patients, and 34 percent less likely to be prescribed opioids, according to an analysis by the American Journal of Emergency Medicine. 

That’s become even more difficult in the pandemic, experts say.

Thomas has long felt like she’s screaming to an empty auditorium when it comes to her checkups. Even when she was seeing doctors in-person, she seldom felt truly believed. In 2018, she waited months to see a top gynecologist for the excessive bleeding and pain she was having. Knowing her diagnosis, she thought the doctor, who was a White man, would surely run tests. He insisted it was her job — at the time she worked in social security as a customer service representative — that was making her stressed. 

“I just felt very deflated,” Thomas said. “I felt like he was making me question myself.” 

When Thomas went to get a second opinion by a doctor, a woman of color, she immediately found out she had to go into emergency surgery for eight inflamed fibroids linked to her Ehlers Danlos. 

Now, Thomas is hardly able to secure in-person appointments because of a backlog from the pandemic. Virtually it’s much harder for her to show a physician her pain and explain her experience, she said. 

The ambiguity around how people express their pain, coupled with ingrained biases and stereotypes, makes it hard for the most marginalized people to be taken seriously when explaining their pain, said Janice Sabin, a researcher on implicit bias in medicine at the University of Washington. This notion of “it’s all in your head” or “you’re crazy,” dates back a century when it comes to women and women of color experiencing chronic pain, Sabin said.

“The lived experience of discrimination is incredibly damaging. It is an emotional burden, but it’s also something that can be tapped intergenerationally,” Sabin said. “Women were considered to be in the 1950s, for example, ‘hysterical’ — just that legacy of not believing women and women being looked at as weak.”

Being Your Own Advocate

Having to be your own advocate is the hardest, Thomas said. And especially during a pandemic, it is nearly impossible to stay on top of your own appointments and procedures. Typically, Thomas sees a specialist once a month and a therapist once a week. This year, Thomas tried to get into a new primary care doctor. She called to schedule in February for an appointment, and the earliest opening was in July. For someone in her level of constant pain, the wait is excruciating, forcing her to take her care into her own hands, doing her own medical research and reaching out to countless experts for advice and help. 

“I had so much medical documentation,” Thomas said. “I could have made my own library.”

Telehealth skyrocketed at the beginning of the pandemic. Between June 26 and November 6, of 2020, 30.2 percent of weekly health center visits occurred via telehealth, according to the Centers for Disease Control and Prevention. Telehealth has made it easier for those in rural areas or for people who have children at home to get appointments, and experts say it’s here to stay: 83 percent of patients expect to use virtual appointments after the pandemic. 

On the flip side, it is more difficult for those like Thomas to feel completely understood. Vulnerable pain patients can be seen as seeking unneeded drugs when they simply need any remedy to get them out of bed, said Shoshana Aronowitz, a researcher of racial disparities in pain medications and the opioid crisis at the University of Pennsylvania. In the pandemic, the limited access to pain doctors affects those most marginalized, specifically women, people of color and LGBTQ+ people who may have previously experienced discrimination in treatment. 

“We’ve gotten into the situation where people, especially Black Americans, have less access to pain care, and then also have less access to substance use disorder treatment. If people don’t have access to other types of treatment, that’s not OK,” Aronowitz said. 

She advocates for a system in which the most marginalized are prioritized for a holistic approach to care that includes both telehealth and in-person therapy and remedies post-pandemic. There are a handful of pain centers across the country that view pain in this way, but with waitlists and costs for initial evaluation, they remain very inaccessible, experts said. 

“In primary care, integrated team care is a model that is being advanced,” Sabin said. “Sort of having this medical home all in one place, so people aren’t being sent to a counselor for this and somewhere else for that. The providers in that model can discuss patients together. Everything is in one spot.” 

Similar to chronic pain patients, many of whom struggle with undiagnosed ongoing medical problems, long-haul COVID patients face that same uncertain battle. With doctors spread thin working to address those with ongoing COVID-19 symptoms, Sabin hopes this is a turning point in which mysterious lingering chronic pain conditions can be looked at and appreciated in a new light. 

Thomas decided last month to leave her job as a customer service representative and apply for disability status. Taking the phone calls her job required all day, especially when her pain flared up, was just not doable. 

The pandemic pushed her to make changes that will help her take care of herself and the uncertainty of her condition. She still feels ashamed: That she can’t function to the extent she desires, that she has to endure the financial instability of a monthly check. She still hasn’t told many of her friends about quitting her job. When she has Zoom calls, she usually avoids the topic of work. 

But still, she said, she is now ready to own her reality.

“For us in chronic pain, we’re always like, ‘We just got to keep going.’ ‘We push through it.’ And then by the time we finally stop, our body’s completely broken,” Thomas said. “So I’m trying not to do that because I am 33. I’m not 103.” 

“Ironically, the pandemic gave me an out,” she added. “It was the catalyst to push me to make a change for myself, for the good of my health and well-being.” 

Don’t Worry Be Happy: Why People Turned to Cannabis During the Pandemic

By Pat Anson, PNN Editor

Demand for medical cannabis rose significantly in the U.S. during the pandemic, according to a new study that found many Americans turned to cannabis to relieve stress and make them feel happy.

The study was conducted by Veriheal, a telemedicine company that helps connect patients with licensed marijuana doctors and dispensaries.

In reviewing a database of over 125,000 Veriheal patients from January 2020 to March 2021, researchers found that applications for medical cannabis cards spiked during waves of Covid-19 infections, and as social unrest grew over the presidential election and the murder of George Floyd.

"Medical cannabis has traditionally been viewed as an alternative treatment for relieving physical pain and chronic ailments," said Maha Haq, CEO of Cultivating Research Education and Advocacy Group (CREA), a research firm that studies psychoactive drugs like cannabis and psychedelics.  

"That most people are actually looking to the plant to ease psychological stressors, often related to external social upheaval, is an incredibly important discovery that helps medical professionals better understand evolving consumer relationships with cannabis, and from there, improve the quality of their treatment and related mental healthcare programs." 

Asked what was the primary effect they wanted to get from medical cannabis, nearly half of patients (46%) picked “Happy” and less than a third (29%) said pain relief. Other patients said they used cannabis to help them relax, sleep, feel mellow or more focused.

The chart below shows that sign-ups and appointments for cannabis consultations rose sharply during stressful periods; when there were spikes in COVID-19 infections, last summer’s Black Lives Matter protests, and the insurrection at the U.S. Capitol in January 2021.

SOURCE: VeRIHEAL

Researchers say the findings indicate that new cannabis consumers – at least during the pandemic -- were more likely to use cannabis to improve their mental and emotional health, as opposed to treating pain and other physical symptoms.  

“We found that people are seeking psychological relief in response to exogenous shocks including COVID-19 and beyond. Periods of social unrest, such as the Black Lives Matter protests and 2020 elections, can be seen as spikes in medical cannabis interest within our datasets," said Haq.

Positive Views About CBD Products

Most pain patients have favorable views about medical cannabis, according to a second, smaller survey of people being treated at pain management clinics in southern California. The findings were recently published in the Journal of Pain Research.

Researchers recruited 253 patients to participate in the survey, most of whom were on Medicaid or Medicare and had low incomes. Nearly two thirds (62%) said they had tried a CBD product in different formulations, including those containing THC.

Most CBD users said it significantly reduced their pain (59%) and allowed them to reduce or stop their use of pain medication (68%), including opioids (54%).  

CBD was particularly effective for those suffering from back pain (67%) and nerve pain (47%), and less effective for patients with fibromyalgia (21%) and migraine (33%).  

“While the familiarity with dosing was mixed and participants used a wide variety of products including products containing THC, they report that these products have helped them with many different pain-involving and neurological conditions,” wrote lead author Jan Schilling, MD, Scientific Director of Vitamed Research. “This cohort also reported that products both with and without THC have helped them to reduce overall pain medication and more specifically opioid medication.”

Most respondents believed that CBD was a good treatment option, not harmful and not addictive. About half said they would be more comfortable if their physician prescribed CBD products.

COVID Vaccines Appear Safe and Effective, But Key Questions Remain

By Bernard J. Wolfson, Kaiser Heralth News

The recent rollout of two newly authorized COVID-19 vaccines is a bright ray of hope at the pandemic’s darkest hour.

We now have a path that can lead us to happier times — even as we watch and suffer from the horrible onslaught of new infections, hospitalizations and deaths that mark the end of this regrettable year.

Health care workers and nursing home residents have already begun to get shots in the first phase of the rollout. Vaccinations should start to be available to the general public sometime in the first few months of next year.

The two vaccines — one developed by Pfizer and BioNTech, the other by Moderna — use the same novel genetic approach. Their development in under a year, shattering all records, is a marvel of science. It’s also a cause for concern for millions of Americans who fear the uncertainty of an unknown technology.

The clinical trial data for the Pfizer and Moderna vaccines show that when both shots of the dual-injection immunization are taken, three weeks to a month apart, they are about 95% effective — at least at preventing severe COVID illness.

However, “a vaccine that remains in the vial is 0% effective no matter what the data show,” says Dr. Walter Orenstein, a professor of infectious diseases at the Emory University School of Medicine in Atlanta and associate director of the Emory Vaccine Center.

Hence, the imperative of persuading millions of people, across racial, cultural, religious, political and generational lines, to get immunized when a vaccine becomes available to them. A survey published this month showed 45% of respondents are taking a wait-and-see approach to vaccination.

Because the vaccines were developed under duress as the coronavirus exacted its deadly toll, the premium was on speed — “warp speed.” So although the number of people in the COVID-19 trials is as large as or larger than in previous vaccine trials, some key questions won’t be answered until millions more are vaccinated.

For example, we don’t know to what extent the vaccines will keep us from transmitting or contracting the virus. We don’t know whether irreversible side effects might emerge, or who is at higher risk from them. And we don’t know whether we’ll need to get vaccinated every year, every three years, or never again.

Skepticism about the vaccines reside in many quarters, including among African Americans, many of whom have a long-standing mistrust of the medical world; the vocal “anti-vaxxers”; and people of all stripes with perfectly understandable doubts. Not to mention communities with language barriers and immigrants without documents, who may fear coming forward.

Here are answers to some questions you might be asking yourself about the new vaccines:

Q: How can I be sure they’re safe?

There’s no ironclad guarantee. But the federal Food and Drug Administration, in authorizing the Moderna and Pfizer vaccines, determined that their benefits outweighed their risks.

The side effects observed in trial participants were common to other vaccines: pain at the injection site, fatigue, headache, muscle pain and chills.

“Those are minor side effects, and the benefit is not dying from this disease,” says Dr. George Rutherford, a professor of epidemiology at the University of California-San Francisco.

Saturday, the Centers for Disease Control and Prevention reported six cases of anaphylactic allergic reaction in the first 272,000 people who got the Pfizer vaccine outside the clinical trials. This has led the CDC to recommend that people receiving the vaccine be observed for up to 30 minutes afterward. It’s possible other unexpected adverse effects could pop up down the road.

“The chances are low, but they are not zero,” says Orenstein. There’s not enough data yet to know if the vaccines pose an elevated risk to pregnant or lactating women, for example, or to immunocompromised people, such as those with HIV. And we know very little about the effects in children, who were not in the initial trials and for whom the vaccines are not authorized.

Q: Why should my family and I take it?

First of all, because you will protect yourselves from the possibility of severe illness or even death. Also, by getting vaccinated you will be doing your part to achieve a vaccination rate high enough to end the pandemic. Nobody knows exactly what percentage of the population needs to get inoculated for that to happen, but infectious disease experts put the number somewhere between 60% and 70% — perhaps even a little higher. Think of it as a civic duty to get your shots.

Q: So, when can I get mine?

It depends on your health status, age and work. In the first phase, already underway, health care workers and nursing home residents are getting vaccinated. The 40 million Moderna and Pfizer doses expected to be available by year’s end should immunize most of them.

Next in line are people 75 and older and essential workers in various public-facing jobs. They will be followed by people ages 65-74 and those under 65 with certain medical conditions that put them at high risk. Enough vaccine could be available for the rest of the population by late spring, but summer or even fall is more likely. Already, some distribution bottlenecks have developed.

On the bright side, two other vaccines — one from Johnson & Johnson, the other from AstraZeneca and Oxford University — could win FDA authorization early next year, significantly increasing the supply.

Q: Once I’m vaccinated, can I finally stop wearing a mask and physical distancing?

No. Especially not early on, before a lot of people have been vaccinated. One reason for that is self-protection. The Moderna and Pfizer vaccines are 95% effective, but that means you still have a 5% chance of falling ill if you are exposed to someone who hasn’t been vaccinated — or who has been but is still transmitting the virus.

Another reason is to protect others, since you could be the one shedding virus despite the vaccination.

Q: I’ve already had COVID-19, so I don’t need the vaccine, right?

We don’t know for sure how long exposure to the virus protects you from reinfection. Protection probably lasts at least a few months, but public health experts say it’s a good idea to get vaccinated when your turn comes up — especially if it’s been many months since you tested positive.

Q: How long before our lives get back to normal?

“If everything goes well, next Thanksgiving might be near normal, and we might be getting close to that by the summer,” says Dr. William Schaffner, a professor of infectious diseases at the Vanderbilt University School of Medicine in Nashville, Tennessee. ”But there would have to be substantial acceptance of the vaccine and data showing the virus moving in a downward direction.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.