By Jim Robbins for KFF Health News.
Broadcast version by Mike Moen for Minnesota News Connection reporting for the KFF Health News-Public News Service Collaboration
Each fall, millions of hunters across North America make their way into forests and grasslands to kill deer. Over the winter, people chow down on the venison steaks, sausage, and burgers made from the animals.
These hunters, however, are not just on the front lines of an American tradition. Infectious disease researchers say they are also on the front lines of what could be a serious threat to public health: chronic wasting disease.
The neurological disease, which is contagious, rapidly spreading, and always fatal, is caused by misfolded proteins called prions. It currently is known to infect only members of the cervid family — elk, deer, reindeer, caribou, and moose.
Animal disease scientists are alarmed about the rapid spread of CWD in deer. Recent research shows that the barrier to a spillover into humans is less formidable than previously believed and that the prions causing the disease may be evolving to become more able to infect humans.
A response to the threat is ramping up. In 2023, a coalition of researchers began “working on a major initiative, bringing together 68 different global experts on various aspects of CWD to really look at what are the challenges ahead should we see a spillover into humans and food production,” said Michael Osterholm, an expert in infectious disease at the University of Minnesota and a leading authority on CWD.
“The bottom-line message is we are quite unprepared,” Osterholm said. “If we saw a spillover right now, we would be in free fall. There are no contingency plans for what to do or how to follow up.”
The team of experts is planning for a potential outbreak, focusing on public health surveillance, lab capacity, prion disease diagnostics, surveillance of livestock and wildlife, risk communication, and education and outreach.
Despite the concern, tens of thousands of infected animals have been eaten by people in recent years, yet there have been no known human cases of the disease.
Many hunters have wrestled with how seriously to take the threat of CWD. “The predominant opinion I encounter is that no human being has gotten this disease,” said Steve Rinella, a writer and the founder of MeatEater, a media and lifestyle company focused on hunting and cooking wild game.
They think, “I am not going to worry about it because it hasn’t jumped the species barrier,” Rinella said. “That would change dramatically if a hunter got CWD.”
Other prion diseases, such as bovine spongiform encephalopathy, also known as mad cow disease, and Creutzfeldt-Jakob disease, have affected humans. Mad cow claimed the lives of more than 200 people, mostly in the United Kingdom and France. Some experts believe Parkinson’s and Alzheimer’s also may be caused by prions.
First discovered in Colorado in captive deer in 1967, CWD has since spread widely. It has been found in animals in at least 32 states, four Canadian provinces, and four other foreign countries. It was recently found for the first time in Yellowstone National Park.
Prions behave very differently than viruses and bacteria and are virtually impossible to eradicate. Matthew Dunfee, director of the Chronic Wasting Disease Alliance, said experts call it a “disease from outer space.”
Symptoms are gruesome. The brain deteriorates to a spongy consistency. Sometimes nicknamed “zombie deer disease,” the condition makes infected animals stumble, drool, and stare blankly before they die. There is no treatment or vaccine. And it is extremely difficult to eradicate, whether with disinfectants or with high heat — it even survives autoclaving, or medical sterilization.
Cooking doesn’t kill prions, said Osterholm. Unfortunately, he said, “cooking concentrates the prions. It makes it even more likely” people will consume them, he said.
Though CWD is not known to have passed to humans or domestic animals, experts are very concerned about both possibilities, which Osterholm’s group just received more than $1.5 million in funding to study. CWD can infect more parts of an animal’s body than other prion diseases like mad cow, which could make it more likely to spread to people who eat venison — if it can jump to humans.
Researchers estimate that between 7,000 and 15,000 infected animals are unknowingly consumed by hunter families annually, a number that increases every year as the disease spreads across the continent. While testing of wild game for CWD is available, it’s cumbersome and the tests are not widely used in many places.
A major problem with determining whether CWD has affected humans is that it has a long latency. People who consume prions may not contract the resulting disease until many years later — so, if someone fell sick, there might not be an apparent connection to having eaten deer.
Prions are extremely persistent in the environment. They can remain in the ground for many years and even be taken up by plants.
Because the most likely route for spillover is through people who eat venison, quick testing of deer and other cervid carcasses is where prevention is focused. Right now, a hunter may drive a deer to a check station and have a lymph node sample sent to a lab. It can be a week or more before results come in, so most hunters skip it.
Montana, for example, is famous for its deer hunting. CWD was first detected in the wild there in 2017 and now has spread across much of the state. Despite warnings and free testing, Montana wildlife officials have not seen much concern among hunters. “We have not seen a decrease in deer hunting because of this,” said Brian Wakeling, game management bureau chief for the Montana Department of Fish, Wildlife & Parks. In 2022 Montana hunters killed nearly 88,000 deer. Just 5,941 samples were taken, and 253 of those tested positive.
Experts believe a rapid test would greatly increase the number of animals tested and help prevent spillover.
Because of the importance of deer to Indigenous people, several tribal nations in Minnesota are working with experts at the University of Minnesota to come up with ways to monitor and manage the disease. “The threat and potential for the spread of CWD on any of our three reservations has the ability to negatively impact Ojibwe culture and traditions of deer hunting providing venison for our membership,” said Doug McArthur, a tribal biologist for the White Earth Nation, in a statement announcing the program. (The other groups referenced are the Leech Lake Band of Ojibwe and Red Lake Band of Chippewa.) “Tribes must be ready with a plan to manage and mitigate the effects of CWD … to ensure that the time-honored and culturally significant practice of harvesting deer is maintained for future generations.”
Peter Larsen is an assistant professor in the College of Veterinary Medicine at the University of Minnesota and co-director of the Minnesota Center for Prion Research and Outreach. The center was formed to study numerous aspects of prions as part of the push to get ahead of possible spillover. “Our mission is to learn everything we can about not just CWD but other prionlike diseases, including Parkinson’s and Alzheimer’s disease,” he said. “We are studying the biology and ecology” of the misfolded protein, he said. “How do prions move within the environment? How can we help mitigate risk and improve animal health and welfare?”
Part of that mission is new technology to make testing faster and easier. Researchers have developed a way for hunters to do their own testing, though it can take weeks for results. There’s hope for, within the next two years, a test that will reduce the wait time to three to four hours.
“With all the doom and gloom around CWD, we have real solutions that can help us fight this disease in new ways,” said Larsen. “There’s some optimism.”
Jim Robbins wrote this story for KFF Health News.
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As Congress heads back to work after the August recess, advocates for the nation's safety net Community Health Centers are urging lawmakers to end Big Pharma's roadblock on discounted medicines through a federal program known as 340B.
Donald Moore, CEO of Pueblo Community Health Center, said by denying discounts, drug companies are withholding critical resources to help centers serve a growing number of patients who cannot afford to pay.
"That $1.5 million now is staying in their pockets," Moore pointed out. "It's not going into my organization's charitable mission to provide access to care."
The roadblock comes as more Coloradans, who have been dropped from Medicaid coverage, turn to centers serving all patients regardless of their ability to pay. Drugmakers have claimed discounted medicines are being diverted to patients not eligible under 340B, or savings are not being used to expand access to health care.
Justin Hanel, director of pharmacy for Valley Wide Health Systems, which serves southern Colorado, said even with discounts, drug prices have gone up by 200% over the past five years. He emphasized all patients filling Valley Wide prescriptions are eligible under 340B, even if they get them at their contracted pharmacies making it easier for people living in remote areas to access medicines.
"The intent was so that it would enable entities like ourselves to stretch scarce federal resources as far as possible," Hanel explained. "Reach more eligible patients and provide more services."
Moore pointed to a third-party audit, which showed his center is in full compliance with 340B but he said no one has asked to see his books. He said denying discounts nationwide will ultimately end up hurting patients, and taxpayers, if people with chronic conditions such as diabetes, hypertension or depression cannot access medicines.
"Someone who doesn't have access to the medicines they need to control chronic conditions is at greater risk of going to the ER, being admitted to the hospital, and having complications associated with that," Moore emphasized.
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By Tony Leys for KFF Health News.
Broadcast version by Mark Moran for Iowa News Service reporting for the KFF Health News-Public News Service Collaboration
Rural regions like the one surrounding this southern Iowa town used to have a lot more babies, and many more places to give birth to them.
At least 41 Iowa hospitals have shuttered their labor and delivery units since 2000. Those facilities, representing about a third of all Iowa hospitals, are located mostly in rural areas where birth numbers have plummeted. In some Iowa counties, annual numbers of births have fallen by three-quarters since the height of the baby boom in the 1950s and ’60s, when many rural hospitals were built or expanded, state and federal records show.
Similar trends are playing out nationwide, as hospitals struggle to maintain staff and facilities to safely handle dwindling numbers of births. More than half of rural U.S. hospitals now lack the service.
“People just aren’t having as many kids,” said Addie Comegys, who lives in southern Iowa and has regularly traveled 45 minutes each way for prenatal checkups at Oskaloosa’s hospital this summer. Her mother had six children, starting in the 1980s, when big families didn’t seem so rare.
“Now, if you have three kids, people are like, ‘Oh my gosh, are you ever going to stop?’” said Comegys, 29, who is expecting her second child in late August.
These days, many Americans choose to have small families or no children at all. Modern birth control methods help make such decisions stick. The trend is amplified in small towns when young adults move away, taking any childbearing potential with them.
Hospital leaders who close obstetrics units often cite declining birth numbers, along with staffing challenges and financial losses. The closures can be a particular challenge for pregnant women who lack the reliable transportation and flexible schedules needed to travel long distances for prenatal care and birthing services.
The baby boom peaked in 1957, when about 4.3 million children were born in the United States. The annual number of births dropped below 3.7 million by 2022, even though the overall U.S. population nearly doubled over that same period.
West Virginia has seen the steepest decline in births, a 62% drop in those 65 years, according to federal data. Iowa’s births dropped 43% over that period. Of the state’s 99 counties, just four — all urban or suburban — recorded more births.
Births have increased in only 13 states since 1957. Most of them, such as Arizona, California, Florida, and Nevada, are places that have attracted waves of newcomers from other states and countries. But even those states have had obstetrics units close in rural areas.
In Iowa, Oskaloosa’s hospital has bucked the trend and kept its labor and delivery unit open, partly by pulling in patients from 14 other counties. Last year, the hospital even managed the rare feat of recruiting two obstetrician-gynecologists to expand its services.
The publicly owned hospital, called Mahaska Health, expects to deliver 250 babies this year, up from about 160 in previous years, CEO Kevin DeRonde said.
“It’s an essential service, and we needed to keep it going and grow it,” DeRonde said.
Many of the U.S. hospitals that are now dropping obstetrics units were built or expanded in the mid-1900s, when America went on a rural-hospital building spree, thanks to federal funding from the Hill-Burton Act.
“It was an amazing program,” said Brock Slabach, chief operations officer for the National Rural Health Association. “Basically, if you were a county that wanted a hospital, they gave you the money.”
Slabach said that in addition to declining birth numbers, obstetrics units are experiencing a drop in occupancy because most patients go home after a night or two. In the past, patients typically spent several days in the hospital after giving birth.
Dwindling caseloads can raise safety concerns for obstetrics units.
A study published in JAMA in 2023 found that women were more likely to suffer serious complications if they gave birth in rural hospitals that handled 110 or fewer births a year. The authors said they didn’t support closing low-volume units, because that could lead more women to have complications related to traveling for care. Instead, they recommended improving training and coordination among rural health providers.
Stephanie Radke, a University of Iowa obstetrics and gynecology professor who studies access to birthing services, said it is almost inevitable that when rural birth numbers plunge, some obstetrics units will close. “We talk about that as a bad event, but we don’t really talk about why it happens,” she said.
Radke said maintaining a set number of obstetrics units is less important than ensuring good care for pregnant women and their babies. It’s difficult to maintain quality of care when the staff doesn’t consistently practice deliveries, she said, but it is hard to define that line. “What is realistic?” she said. “I don’t think a unit should be open that only delivers 50 babies a year.”
In some cases, she said, hospitals near each other have consolidated obstetrics units, pooling their resources into one program that has enough staffers and handles sufficient cases. “You’re not always really creating a care desert when that happens,” she said.
The decline in births has accelerated in many areas in recent years. Kenneth Johnson, a sociology professor and demographer at the University of New Hampshire, said it is understandable that many rural hospitals have closed obstetrics units. “I’m actually surprised some of them have lasted as long as they have,” he said.
Johnson said rural areas that have seen the steepest population declines tend to be far from cities and lack recreational attractions, such as mountains or large bodies of water. Some have avoided population losses by attracting immigrant workers, who tend to have larger families in the first generation or two after they move to the U.S., he said.
Katy Kozhimannil, a University of Minnesota health policy professor who studies rural issues, said declining birth numbers and obstetric unit closures can create a vicious cycle. Fewer babies being born in a region can lead a birthing unit to shutter. Then the loss of such a unit can discourage young people from moving to the area, driving birth numbers even lower.
In many regions, people with private insurance, flexible schedules, and reliable transportation choose to travel to larger hospitals for their prenatal care and to give birth, Kozhimannil said. That leaves rural hospitals with a larger proportion of patients on Medicaid, a public program that pays about half what private insurance pays for the same services, she said.
Iowa ranks near the bottom of all states for obstetrician-gynecologists per capita. But Oskaloosa’s hospital hit the jackpot last year, when it recruited Taylar Swartz and Garth Summers, a married couple who both recently finished their obstetrics training. Swartz grew up in the area, and she wanted to return to serve women there.
She hopes the number of obstetrics units will level off after the wave of closures. “It's not even just for delivery, but we need access just to women's health care in general,” she said. “I would love to see women's health care be at the forefront of our government's mind.”
Swartz noted that the state has only one obstetrics training program, which is at the University of Iowa. She said she and her husband plan to help spark interest in rural obstetrics by hosting University of Iowa residency rotations at the Oskaloosa hospital.
Comegys, a patient of Swartz’s, could have chosen a hospital birthing center closer to her home, but she wasn’t confident in its quality. Other hospitals in her region had shuttered their obstetrics units. She is grateful to have a flexible job, a reliable car, and a supportive family, so she can travel to Oskaloosa for checkups and to give birth there. She knows many other women are not so lucky, and she worries other obstetrics units are at risk.
“It’s sad, but I could see more closing,” she said.
Tony Leys wrote this story for KFF Health News.
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LGBTQ+ Americans are twice as likely to experience discrimination in health care, including as they age, according to a new survey from the Kaiser Family Foundation.
Now, a nonprofit advocacy group called Sage has created the LGBTQ+ LGBTQ+ Advance Care Planning Toolkit.
Eliza Giles, a nurse practitioner specializing in geriatric care, created the online resource.
"The toolkit is an A to Z guide on conversations, documentation and considerations if you're well, or if you have a serious illness and want access to caregiver resources, advice about palliative care," Giles outlined.
The toolkit explains how to appoint a health care proxy who can visit you in the hospital and make medical decisions if you are incapacitated. The site also helps people spell out their wishes on caregivers, hospice and palliative care and funeral or memorial arrangements.
Osha Towers, LGBTQ+ engagement director for the nonprofit Compassion & Choices, said without advance planning, end-of-life decisions can bypass people closest to you and fall to family members who may have had little to no contact for years.
"There's plenty of us that have gone to funerals with people that don't look like they looked as they live their lives," Towers noted. "Because their family decided to make the choice that they want to erase that part of their identity."
The toolkit also covers estate planning, creating a will, and organ donation.
Disclosure: Compassion & Choices contributes to our fund for reporting on Civic Engagement, Health Issues, Senior Issues, and Social Justice. If you would like to help support news in the public interest,
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