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As Pandemic Emergencies End, People Battling Long Covid Feel ‘Swept Under the Rug’

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by Jackie Fortiér, KPCC/LAist
Tue, 18 Apr 2023 09:00:00 +0000

Lost careers. Broken marriages. Dismissed and disbelieved by family and friends.

These are some of the emotional and financial struggles long covid face years after their infection. Physically, they are debilitated and in pain: unable to walk up the stairs, focus on a project, or hold down a job. Facing the end of the federal public emergency in May, many people experiencing lingering effects of the virus say they feel angry and abandoned by policymakers eager to move on.

“Patients are losing hope,” said Shelby Hedgecock, a self-described long covid survivor from Knoxville, Tennessee, who now advocates for patients like herself. “We feel swept under the rug.”

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The Centers for Disease Control and Prevention estimated in March that 6% of U.S. adults, or about 16 million, were experiencing long covid, or ongoing health problems that continue or emerge after a bout of covid-19. Researchers estimate that 1.6% of U.S. adults, or about 4 million, have symptoms that have significantly reduced their ability to carry out day-to-day activities.

While patients are no longer contagious, their health issues can stretch on and affect almost every system in the body. More than 200 symptoms and conditions, including and depression, are linked to long covid, said Linda Geng, a physician who treats patients at Stanford Medicine's Post-Acute COVID-19 Syndrome Clinic.

The severity and duration of long covid vary. Some people recover in a few weeks, while a smaller number have debilitating and lingering health issues. There is currently no test, treatment, or cure. There's not even an accepted medical definition.

“When you don't have any tests that show that anything's abnormal, it can be quite invalidating and anxiety-provoking,” Geng said.

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The physical and emotional toll has left some feeling hopeless. A 2022 study of adults in Japan and Sweden found that those with post-covid conditions were more than twice as likely to develop mental health issues, including depression, anxiety, and post-traumatic stress, as people without them.

“One of my friends committed suicide in May of 2021,” Hedgecock said. “She had a mild covid infection, and she progressively had medical complications continuously pop up, and it just got so bad that she decided to end her life.”

In Los Angeles County, 46% of adults who contracted covid were fully recovered a month later, but the rest — a majority — reported one or more continuing symptoms, according to a 675-patient study by the University of Southern California's COVID-19 Pandemic Research Center. The researchers found chronic fatigue topped the list of health issues, followed by brain fog and persistent cough, all of which affect people's daily lives.

Among the respondents who identified as living with long covid, 77% said their limited daily activities such as going to school or work or socializing. One-quarter reported experiencing severe limitations.

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Taking antivirals cuts the risk of developing long covid in people who are newly infected. But for people already suffering, medical science is to catch up.

Here's a look at Hedgecock and two other patients who have had long covid for years.

A Debilitating Brain Injury

Before contracting covid during spring 2020, Hedgecock's life revolved around fitness. She worked as a personal trainer in Los Angeles and competed in endurance competitions on the weekends. At 29, she was about to launch an online wellness business, then she started trouble breathing.

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“One of the scariest things that happened to me was I couldn't breathe at night,” Hedgecock said. “I did go to the emergency room on three different occasions, and each time I was told, ‘You're up and you're moving. You're young; you're healthy. It's going to be fine.'”

Her primary care physician at the time told her she didn't need supplemental oxygen even though her oxygen saturation dipped below normal at night, leaving her gasping for breath and crying in frustration.

Her condition kept her from one of her favorite hobbies, reading, for 19 months.

“I couldn't look at a page and tell you what it said. It was like there was a disconnect between the words and my brain,” she said. “It was the strangest, most discouraging thing ever.”

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Months later, under the direction of a specialist, Hedgecock underwent a test measuring electrical activity in the brain. It revealed her brain had been starved of oxygen for months, damaging the section controlling memory and language.

Since then, she has moved back to Tennessee to be close to family. She doesn't leave her apartment without a medical alert button that can instantly call an ambulance. She works with a team of specialists, and she feels lucky; she knows people in online long covid groups who are losing health coverage as Medicaid pandemic protections expire, while others remain unable to work.

“A lot of them have lost their life savings. Some are experiencing homelessness,” she said.

In Bed for a Year

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Julia Landis led a fulfilling life as a therapist before she contracted covid in spring 2020.

“I was really able to people and it was great work and I loved my life, and I've lost it,” said the 56-year-old, who lives with her husband and dog in Ukiah, California.

In 2020, Landis was living in an apartment in Phoenix and received treatment via telehealth for her covid-related bronchitis. What started out as a mild case of covid spiraled into severe depression.

“I just stayed in bed for about a year,” she said.

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Her depression has continued, along with debilitating pain and anxiety. To make up for her lost income, Landis' husband works longer hours, which in turn exacerbates her loneliness.

“It would be nice to be living somewhere where there were people around seven days a week so I wouldn't have to go through days of being just terrified to be alone all day,” Landis said. “If this were cancer, I'd be living with family. I'm sure of it.”

Landis refers to herself as a professional patient, filling her days with physical therapy and medical appointments. She's gradually improving and can socialize on occasion, though it leaves her exhausted and can take days to recover.

“It's terrifying because there's just no way of knowing if this is going to be for the rest of my existence,” she said.

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‘I Felt Betrayed'

Linda Rosenthal, a 65-year-old retired high school paraprofessional, has long covid symptoms, including inflammation in her chest that makes breathing difficult. She has found it hard to get medical care.

She called and set up a treatment plan with a local cardiologist near her home in Orange County, California, but received a letter five days later telling her he would no longer be able to provide her medical services. The letter gave no reason for the cancellation.

“I was so surprised,” she said. “And then I felt betrayed because it is terrible to get a letter where a doctor, although within their rights, says that they don't want you for a patient anymore, because it causes self-doubt.”

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Rosenthal found another cardiologist willing to do telehealth visits and who has staff wear masks in the office even though the rule has expired. The practice, however, is more than an hour's from where she lives.

NEED HELP?

If you or someone you know is in a crisis, please call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255) or contact the Crisis Text Line by texting HOME to 741741.

This article is part of a partnership that includes LAist, NPR, and KFF Health .

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

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By: Jackie Fortiér, KPCC/LAist
Title: As Pandemic Emergencies End, People Battling Long Covid Feel ‘Swept Under the Rug'
Sourced From: kffhealthnews.org/news/article/long-covid-patients-end-of-pandemic-emergency/
Published Date: Tue, 18 Apr 2023 09:00:00 +0000

Kaiser Health News

Oh, Dear! Baby Gear! Why Are the Manuals So Unclear?

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Darius Tahir
Fri, 03 May 2024 09:00:00 +0000

Since becoming a father a few months ago, I've been nursing a grudge against something tiny, seemingly inconsequential, and often discarded: instructional manuals. Parenthood requires a lot of gadgetry to maintain a kid's and welfare. Those gadgets require puzzling over booklets, decoding inscrutable pictographs, and wondering whether warnings can be safely ignored or are actually disclosing a hazard.

To give an example, my daughter, typically a cooing little marsupial, quickly discovered babyhood's superpower: Infants emerge from the womb with talon-strength fingernails. She wasn't afraid to use them, against either her parents or herself. So we purchased a pistachio-green, hand-held mani-pedi device.

That was the easy part. The difficulty came when we consulted the manual, a palm-sized, two-page document.

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The wandlike tool is topped with a whirring disc. One can apparently adjust the speed of its rotation using a sliding toggle on the wand. But the product manual offered confusing advice: “Please do not use round center position grinding,” it said. Instead, “Please use the outer circle position to grinding.” It also proclaimed, “Stay away from children.” In finer print, the manual revealed the potential combination of kids and the device's smaller parts was the reason for concern.

One would hope for more clarity about a doodad that could inadvertently cause pain.

Later, I noticed another warning: “If you do not use this product for a long time, please remove the battery.” Was it dangerous? Or simply an unclear and unhelpful yet innocuous heads-up? We didn't know what to do with this information.

We now notice shoddy instructions everywhere.

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One baby carrier insert told us to use the product for infants with “adequate” head, neck, and torso control — a vague phrase. (The manufacturer declined to comment.)

Another manual, this one online and for a car seat — a device that's supposed to protect your kid — informed readers with words and images that a model baby was “properly positioned” relative to the top of the headrest “structure” when more than one inch from the top. Just pixels away, the same model, slumped further down, was deemed improperly positioned: “The headrest should not be more than 1” from the top of her head,” it said, in tension with its earlier instructions. Which was it, more than one inch or not? So we fiddle and hope for the best.

I acknowledge this sounds like new-parent paranoia. But we're not entirely crazy: Manuals are important, and ones for baby products “are notoriously difficult to write,” Paul Ballard, the managing director of 3di Information Solutions, a technical writing firm, told me.

Deborah Girasek, a professor of social and behavior sciences at the Uniformed Services University of the Health Sciences, told me that for decades, for the young and middle-aged alike, unintentional injury has been the leading cause of death. That's drownings, fires, suffocation, car crashes. The USU is a federal service academy medical students destined for the armed services or other parts of the .

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Some of these deaths are caused by lack of effective communication — that is, the failure of instruction about how to avoid injury.

And these problems stretch from cheap devices to the most sophisticated products of research and development.

It's a shortcoming that's prompted several regulatory agencies charged with keeping Americans healthy, including the Consumer Product Safety Commission, the Food and Drug Administration, and the National Highway Traffic Safety Administration, to prod companies into providing more helpful instructions.

By some lights, they've had . NHTSA, for example, has employees who actually read manuals. The agency says about three-quarters of car seats' manuals rate four or five out of five, up from 38% in 2008. Then again, our car seat's has a five-star rating. But it turns out the agency doesn't evaluate online material.

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Medical product manuals sometimes don't fare too well either. Raj Ratwani, director of MedStar Health's Human Factors program, told me that, for a class he teaches to nurses and doctors, he prompted students to evaluate the instructions for tests. The results were poor. One time, instructions detailed two swabs. The kit had only one.

Technical writers I spoke with identified this kind of mistake as a symptom of cost cutting. Maybe a company creates one manual meant to cover a range of products. Maybe it puts together the manual at the last moment. Maybe it farms out the task to marketers, who don't necessarily think about how manuals need to evolve as the products do.

For some of these cost-cutting tactics, “the motivation for doing it can be cynical,” Ballard said.

Who knows.

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Some corners of the technical writing world are gloomy. People worry their jobs aren't secure, that they're going to be replaced by someone overseas or artificial intelligence. Indeed, multiple people I spoke with said they'd heard about generative AI experiments in this area.

Even before AI has had its effect, the job market has weighed in. According to the federal government, the number of technical writers fell by a third from 2001, its recent peak, to 2023.

One solution for people like us — frustrated by inscrutable instructions — is to turn to another uncharted world: social . YouTube, for instance, has helped us figure out a lot of the baby gadgets we have acquired. But those videos also are part of a wild , where creators offer helpful tips on baby products then refer us to their other productions (read: ads) touting things like weight loss services. Everyone's got to make a living, of course; but I'd rather they not make a buck off viewers' postpartum anxiety.

It reminds me of an old insight that became a digital-age cliché: Information wants to be . Everyone forgets the second half: Information also wants to be expensive. It's cheap to share information once produced, but producing that information is costly — and a that can't easily or cheaply be replaced. Someone must pay. Instruction manuals are just another example.

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——————————
By: Darius Tahir
Title: Oh, Dear! Baby Gear! Why Are the Manuals So Unclear?
Sourced From: kffhealthnews.org/news/article/baby-product-instruction-manuals-confusing-technical-writing/
Published Date: Fri, 03 May 2024 09:00:00 +0000

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Kaiser Health News

California Floats Extending Health Insurance Subsidies to All Adult Immigrants

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Jasmine Aguilera, El Tímpano
Fri, 03 May 2024 09:00:00 +0000

Marisol Pantoja Toribio found a lump in her breast in early January. Uninsured and living in California without legal status and without her , the usually happy-go-lucky 43-year-old quickly realized how limited her options were.

“I said, ‘What am I going to do?'” she said in Spanish, quickly getting emotional. She immediately worried she might have cancer. “I went back and forth — I have [cancer], I don't have it, I have it, I don't have it.” And if she was sick, she added, she wouldn't be able to work or pay her rent. Without health insurance, Pantoja Toribio couldn't afford to find out if she had a serious .

Beginning this year, Medi-Cal, California's Medicaid program, expanded to include immigrants lacking legal residency, timing that could have worked out perfectly for Pantoja Toribio, who has lived in the Bay Area of Brentwood for three years. But her application for Medi-Cal was quickly rejected: As a farmworker earning $16 an hour, her annual income of roughly $24,000 was too high to qualify for the program.

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California is the first state to expand to all qualifying adults regardless of immigration status, a move celebrated by health advocates and political leaders across the state. But many immigrants without permanent legal status, especially those who in parts of California where the cost of living is highest, earn slightly too much money to qualify for Medi-Cal.

The state is footing the bill for the Medi-Cal expansion, but federal bars those it calls “undocumented” from receiving insurance subsidies or other benefits from the Affordable Care Act, leaving many employed but without viable health insurance options.

Now, the same health advocates who fought for the Medi-Cal expansion say the next step in achieving health equity is expanding Covered California, the state's ACA marketplace, to all immigrant adults by passing AB 4.

“There are people in this state who work and are the backbone of so many sectors of our economy and contribute their labor and even taxes … but they are locked out of our social safety net,” said Sarah Dar, policy director at the California Immigrant Policy Center, one of two organizations sponsoring the bill, dubbed #Health4All.

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To qualify for Medi-Cal, an individual cannot earn more than 138% of the federal poverty level, which currently amounts to nearly $21,000 a year for a single person. A family of three would need to earn less than $35,632 a year.

For people above those thresholds, the Covered California marketplace offers various health plans, often with federal and state subsidies, yielding premiums as low as $10 a month. The hope is to create what advocates call a “mirror marketplace” on the Covered California website so that immigrants regardless of status can be offered the same health plans that would be subsidized only by the state.

Despite a Democratic supermajority in the legislature, the bill might struggle to pass, with the state facing a projected budget deficit for next year of anywhere from $38 to $73 billion. Gov. Gavin Newsom and legislative leaders announced a $17 billion package to start reducing the gap, but significant spending cuts appear inevitable.

It's not clear how much it would cost to extend Covered California to all immigrants, according to Assembly member Joaquin Arambula, the Fresno Democrat who introduced the bill.

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The immigrant policy center estimates that setting up the marketplace would cost at least $15 million. If the bill passes, sponsors would then need to secure for the subsidies, which could into the billions of dollars annually.

“It is a tough time to be asking for new expenditures,” Dar said. “The mirror marketplace startup cost is a relatively very low number. So we're hopeful that it's still within the realm of possibility.”

Arambula said he's optimistic the state will continue to in improving access to health care for immigrants who lack legal residency.

“I believe we will continue to stand up, as we are working to make this a California for all,” he said.

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The bill passed the Assembly last July on a 64-9 vote and now awaits action by the Senate Appropriations Committee, Arambula's office said.

An estimated 520,000 people in California would qualify for a Covered California plan if not for their lack of legal status, according to the labor research center at the University of California-Berkeley. Pantoja Toribio, who emigrated alone from Mexico after leaving an abusive relationship, said she was lucky. She learned about alternative health care options when she made her weekly visit to a food pantry at Hijas del Campo, a Contra Costa County farmworker advocacy organization, where they told her she might qualify for a plan for low-income people through Kaiser Permanente.

Pantoja Toribio applied just before open enrollment closed at the end of January. Through the plan, she learned that the lump in her breast was not cancerous.

“God heard me,” she said. “Thank God.”

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

——————————
By: Jasmine Aguilera, El Tímpano
Title: California Floats Extending Health Insurance Subsidies to All Adult Immigrants
Sourced From: kffhealthnews.org/news/article/california-legislation-medicaid-subsidies-all-adult-immigrants/
Published Date: Fri, 03 May 2024 09:00:00 +0000

Did you miss our previous article…
https://www.biloxinewsevents.com/bird-flu-is-bad-for-poultry-and-dairy-cows-its-not-a-dire-threat-for-most-of-us-yet/

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Kaiser Health News

Bird Flu Is Bad for Poultry and Dairy Cows. It’s Not a Dire Threat for Most of Us — Yet.

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Amy Maxmen
Fri, 03 May 2024 09:00:00 +0000

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 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.

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With that in mind, KFF Health 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.

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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 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 as people cough, sneeze, and breathe. As we learned in the depths of covid-19, airborne viruses are hard to stop.

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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 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: Will a pandemic start if a person drinks virus-contaminated milk?

Not yet. 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.

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Unpasteurized “raw” milk, however, has been shown to contain living H5N1 viruses, which is why the FDA and other 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 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.

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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 should offer funds to cattle farmers who cases so that they have an incentive to test. Barring that, he said, reporting just adds reputational 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.

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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: OK it's not a pandemic, but what could happen to people who get this year's H5N1 bird flu?

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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.”

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——————————
By: Amy Maxmen
Title: Bird Flu Is Bad for Poultry and Dairy Cows. It's Not a Dire Threat for Most of Us — Yet.
Sourced From: kffhealthnews.org/news/article/bird-flu-h5n1-risks-questions-answered/
Published Date: Fri, 03 May 2024 09:00:00 +0000

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