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She Once Advised the President on Aging Issues. Now, She’s Battling Serious Disability and Depression.

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Judith Graham
Tue, 28 Nov 2023 10:00:00 +0000

If you or someone you know is in crisis, please call the National Suicide Prevention Lifeline at 988 or contact the Crisis Text Line by texting HOME to 741741.

The GoFundMe request jumped out at me as I was scrolling through posts on LinkedIn.

Nora Super, executive director of the 2015 White House Conference on Aging and former director of the Milken Institute's Center for the Future of Aging, was seeking contributions after suffering a severe spinal cord injury.

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“Right now, I have no feeling below the waist. I need lots of equipment to go home from the hospital and live safely and independently,” she wrote in her appeal.

Since coping with disability — and the cost of coping with disability — is an enormously important issue for older adults, I wondered if Super would discuss her experiences and try to put them in perspective.

The Institute on Disability at the of New Hampshire ran the numbers for me: About 19 million people 65 and older in the U.S. — a third of that age group — had some type of disability in 2021, the latest year for which data is available. This includes difficulty with hearing, vision, cognition, mobility, or activities such as bathing, dressing, or shopping.

Super agreed to talk to me, but her story was more complicated than I anticipated.

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First, some context. Super, 59, has been open about her struggle with major depression, an issue she's written about. In mid-June, after being fired from the Milken Institute, she began slipping into another depression — her fifth episode since 2005.

Super's psychiatric medications weren't working, she said, and she sought electroconvulsive therapy (ECT), which had been effective for her in the past. But mental services are difficult to get in a timely way, and Super couldn't get an ECT appointment until Aug. 7.

On July 30, convinced that her life had no value, she attempted to end it. This was the event that led to her injury.

After two weeks in intensive care and a recovery unit, Super was ready to leave the hospital. But no rehabilitation facility would take her because of her mental health crisis. Without psychiatrists on staff, they claimed they couldn't ensure her safety, said Len Nichols, her husband.

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Nichols, 70, has held several high-level health policy positions during his career, among them senior adviser for health policy at the Office of Management and Budget during the Clinton administration and director of the Center for Health Policy Research and Ethics at George Mason University. 

Using every contact he could, Nichols searched for a facility in New Orleans where Super could get intensive rehab services. During the pandemic, the couple had moved there from their longtime home in Arlington, Virginia. New Orleans is where Super grew up and three of her sisters live.

It took six days to get Super admitted to rehab. And that was just one of the challenges Nichols .

Over the next month, he prepared for Super's return home, at considerable expense. An elevator was installed in the couple's three-story home (their bedroom is on the second floor) for $38,000. A metal ramp at the home's entry cost $4,000. A lift for their Jeep cost $6,500. A bathroom renovation came to $4,000. An electronic wheelchair-style device that can be used in the shower was another $4,000.

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Super's privately purchased insurance policy covered a wheelchair, bedside commode, hospital bed, and a Hoyer lift (a device that helps people transfer in and out of bed) with a small monthly copayment.

“It's been surprising how much stuff I've needed and how much all of it costs,” Super admitted when we spoke on the phone.

“Even with all our education, resources, and connections, we have had a hard time making all the arrangements we've needed to make,” Nichols said. “I cannot imagine how people do this with none of those three things.”

He showered praise on the physical and occupational therapists who worked with Super at the rehab facility and taught him essential skills, such as how to move her from bed to her wheelchair without straining his back or damaging her skin.

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“I don't think I ever appreciated how essential their work is before this,” he told me. “They explain what you'll be able to do for yourself and then they help you do it. They show you a pathway back to dignity and independence.”

Still, the transition home has been difficult. “In the hospital, nothing was expected of me, everything was done for me. In rehab, you're very goal-oriented and there are still people to take care of you,” Super told me. “Then, you home, and that structure is gone and things are harder than you thought.”

Fortunately, Nichols is healthy and able to handle hands-on caregiving. But he soon needed a break and the couple hired home-care workers for four hours a day, five days a . That costs $120 , and Super's long-term care insurance pays $100.

They're lucky they can afford it. Medicare typically doesn't pay for chronic help of this kind, and only about 7% of people 50 or older have long-term care insurance.

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What does Super's future look like? She isn't sure. Physicians have said it could take a year to know whether she can recover function below her waist.

“I'm happy to be alive and to see how I can take where I've ended up and do something positive with it,” she said. “I still have a voice, and I can help people understand what it is to live with physical limitations in a way that I've never really understood before.”

Hopefully, this sense of purpose will sustain her. But it won't be easy. After we spoke, Super became discouraged with her prospects for recovery and her mood turned dark again, her husband said.

“Knowing her, I believe that she will make it her mission to help others better understand the enormous and multiple challenges associated with the onset of a disability, and she will press for changes in our health system to improve the lives of families who have to deal with disabilities,” said Stuart Butler, a senior fellow at the Brookings Institution who has worked with Super in the past.

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Persistent accessibility problems for people with disabilities are part of what Super wants to speak out about. “I live in an old with sidewalks that are very uneven, and just getting down the street in my chair is a big hassle,” she said. “Finding parking where we can open the door fully and get me out is a challenge.” 

Nichols has been surprised by how many medical offices have no way of lifting Super from her wheelchair to the exam table. “The default is, they ask me, ‘Can you pick her up?' It's stunning how poorly prepared they are to help someone like Nora.”

Then, there are reactions Super encounters when she leaves the house. “Going down the street, people look at me and then they look away. It definitely feels different than when I was able-bodied. It makes me feel diminished,” Super said.

Nichols finds himself thinking back to something a neurosurgeon said on the day Super was injured and had her first operation. “He told me, ‘Look, there's more damage than we thought, and she won't be what she was. You're not going to know for six to 12 months what's possible. But I can tell you to do as much as you can as soon as you can to move on to a new normal. Millions of people have done it, and you can too.'”

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We're eager to hear from about questions you'd like answered, problems you've been with your care, and advice you need in dealing with the health care system. Visit kffhealthnews.org/columnists to submit your requests or tips.

——————————
By: Judith Graham
Title: She Once Advised the President on Aging Issues. Now, She's Battling Serious Disability and Depression.
Sourced From: kffhealthnews.org//article/presidential-adviser-nora-super-disability-depression/
Published Date: Tue, 28 Nov 2023 10:00:00 +0000

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Kaiser Health News

Union With Labor Dispute of Its Own Threatens to Cut Off Workers’ Health Benefits

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Phil Galewitz, KFF Health News
Fri, 26 Jul 2024 09:00:00 +0000

The National Education Association, the nation's largest union, is threatening to cut off health insurance to about 300 Washington, D.C.-based workers on Aug. 1 in an effort to end a bitter contract dispute.

It's a tactic some private employers have used as leverage against unionized workers that has drawn scrutiny from congressional Democrats and is prohibited for employers in California. Experts on labor say they've never seen a union make the move against its own workers.

“This is like a man-bites-dog situation where the union is now in a position as the employer,” said Paul Clark, a professor of labor and employment relations at Penn State University. “It's not a good look for a union.”

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NEA workers with pressing health needs are worried but say they won't fold. Joye Mercer Barksdale, a writer on the NEA's government relations team, said she needs coverage for a medical procedure to address atrial fibrillation, a cardiac disorder. “This is insane for the NEA to use our health benefits as a bargaining chip,” she said.

But Barksdale said the threat isn't enough to force her to agree to an unacceptable contract. “I am not ready to give in,” she said.

The NEA Staff Organization, the union representing workers at the NEA's headquarters, launched a strike on July 5 in Philadelphia, during the union's annual delegate assembly. It was its second walkout this summer as the two parties negotiate a new contract, navigating sticking points such as wages and remote work.

In response, the NEA ended the conference early. was supposed to speak at the event but withdrew, refusing to cross the picket line. The NEA on July 24 endorsed Kamala Harris for president.

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On July 8, the day after the conference had been scheduled to end, the NEA locked out workers. In a letter the day before, the NEA informed its unionized workers that they would not be paid, effective immediately, and their health benefits would expire at the end of July unless a new deal were reached.

“NEA cannot allow NEASO to act again in a way that will bring such lasting harm to our members and our organization,” Kim Anderson, the NEA's executive director, wrote in the letter, obtained by KFF Health News. “We are, and have always been, committed both to our union values and to the importance of conducting ourselves as a model employer.”

Democrats in Congress, Sens. Sherrod Brown of Ohio and Bob Casey of Pennsylvania, introduced legislation last year to protect striking workers from losing their health benefits, after several large companies, including General Motors, John Deere, RTX (formerly Raytheon Technologies), and the maker of Kellogg's cereals, threatened to or did cut off coverage during labor disputes.

“Workers shouldn't have to choose between their 's health and a fair contract,” Brown said in a statement to KFF Health News.

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The legislation was endorsed by large labor unions including the Service Employees International Union and United Steelworkers, according to a press release from Brown's office. The NEA wasn't among them.

“This tactic is immoral, and it should be illegal,” United Steelworkers' president at the time, Conway, said in the release.

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at the NEA, which represents teachers and other administrators, declined an interview request. In a statement, the organization's president, Becky Pringle, said “we are making every effort to reach an agreement as quickly as possible” with its staff union.

“As union leaders who have been on strike, we recognize the significance and impact of these important decisions on a personal and family level. We truly value our employees and look forward to continued collaboration with NEASO to develop a new contract that benefits us all,” she said.

Kate Hilts, a digital strategist who works for the NEA, said she fears losing her coverage will leave her unable to afford treatment for a rare autoimmune disease that attacks her kidneys. Her next treatment was slated for August.

“I wake up every day and can't believe this is happening,” she said. “You would expect this from an employer that is antiworker or has a terrible labor record, but I am totally flabbergasted that a labor union would do this that bills itself as pro-worker, pro-family, pro-education, and pro-children.”

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The NEA staff union has filed multiple charges with the National Labor Relations Board this year, including allegations that the NEA withheld holiday overtime pay and failed to information on the outsourcing of millions of dollars in bargaining unit work.

California is one of the only states that protect striking workers from losing health coverage. The state passed a law in 2021 that blocks the tactic from being used against public employees and another law in 2022 that allows any striking workers who lose their insurance to immediately get heavily discounted coverage through the state's Affordable Care Act marketplace.

If they remain locked out, the NEA workers would be eligible for coverage under COBRA, a federal program that allows people who are fired or laid off to maintain their employer-sponsored insurance for 18 months.

But the coverage can be a financial hardship, as individuals often must pay the entire cost of their insurance premiums, plus a 2% administrative fee.

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Another option for workers would be coverage through the Affordable Care Act marketplace, though that also could be costly. And it may be unclear how soon that coverage would begin or whether insurers would their existing doctors.

“I'm hoping the NEA will be so ashamed of what they are doing that, at the very least, they will not take away our health benefits,” Barksdale said.

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By: Phil Galewitz, KFF Health News
Title: Union With Labor Dispute of Its Own Threatens to Cut Off Workers' Health Benefits
Sourced From: kffhealthnews.org/news/article/nea-national-education-association-union-threatens-health-insurance-benefit-lockout/
Published Date: Fri, 26 Jul 2024 09:00:00 +0000

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The CDC’s Test for Bird Flu Works, but It Has Issues

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Arthur Allen and Amy Maxmen
Fri, 26 Jul 2024 09:00:00 +0000

The Centers for Disease Control and Prevention says a glitch in its bird flu test hasn't harmed the agency's outbreak response. But it has ignited scrutiny of its go-it-alone approach in testing for emerging pathogens.

The agency has quietly worked since April to resolve a nagging issue with the test it developed, even as the virus swept through dairy farms and chicken houses across the country and infected at least 13 farmworkers this year.

At a congressional hearing July 23, Rep. Brett Guthrie (R-Ky.) asked about the issue. “Boy, that rings of 2020,” he said, referring to when the nation was caught off guard by the pandemic, in part because of dysfunctional tests made by the CDC. Demetre Daskalakis, director of the CDC's National Center for Immunization and Respiratory Diseases, responded that the agency rapidly developed a workaround that makes its bird flu test reliable.

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“The tests are 100% usable,” he later told KFF , adding that the FDA studied the tests and came to the same conclusion. The imperfect tests, which have a faulty element that sometimes requires testing a sample again, will be replaced soon. He added, “We have made sure that we're offering a high-quality product.”

Still, some researchers were unnerved by the news coming four months after the declared a worrisome bird flu outbreak among cattle. The CDC's test is the only one available for clinical use. Some researchers say its flaws, though manageable, underscore the risk of relying on a single entity for testing.

The problem came to light in April as the agency prepared to distribute its test to about 100 public health labs around the country. CDC detected the issue through a quality control system put in place after the covid test catastrophe of 2020.

Daskalakis said the CDC's original test design was fine, but a flaw emerged when a company contracted by the agency manufactured the tests in bulk. In these tests, one of two components that recognize proteins called H5 in the H5N1 bird flu virus was unreliable, eliminating an important safeguard. By targeting the same protein twice, tests have a built-in backup in case one part fails.

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The agency developed a fix to ensure a reliable result: If only one of the two parts detected H5, the test was considered inconclusive and would be run again. With the FDA's blessing, the CDC distributed the tests — with workaround instructions — to public health labs.

Wroblewski, director of infectious diseases at the Association of Public Health Laboratories, said the results of the tests have not been ambiguous, and there is no need to discard the tests.

Still, the agency has asked a different manufacturer to remake the faulty component so that 1.2 million improved tests will be available soon, Daskalakis said. Some of the updated tests are already in stock at the CDC, but the FDA hasn't yet signed off on their use. Daskalakis declined to name the manufacturers.

Meanwhile, the outbreak has grown. Farmworkers continue to lack information about the virus and gear to protect them from it. Rural clinics may miss cases if they don't catch a person's connection to a farm and notify health officials rather than their usual diagnostic testing laboratories.

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Those clinical labs remain unauthorized to test for the bird flu. Several of those labs have spent months working through analyses and red tape so that they can run the CDC's tests. As part of the licensing , the CDC alerted them to the workaround with the current test, too.

But outside select circles, the news was largely overlooked. “I'm totally surprised by this,” Alex Greninger, assistant director of the of Washington Clinical Virology Laboratory, told KFF Health News this . Greninger's lab is developing its own test and has been to obtain CDC test kits to evaluate.

“It's not a red alarm,” he said, but he's worried that as the CDC and the FDA spend months developing and evaluating an updated test, the only one available relies on a single component. If the genetic code underlying that fragment of the H5 protein mutates, the test could give false results.

It's not uncommon for academic and commercial diagnostic labs to make mistakes and catch them during quality control checks, as the CDC did. Still, this isn't the agency's first mishap. In 2016, well before the covid debacle, CDC officials for months directed public health labs to use a Zika test that failed about a third of the time.

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The CDC caught and worked to remediate the situation far more quickly and effectively in this case. Nonetheless, the mishap raises concern. Michael Mina, chief science officer of the telemedicine company eMed.com, said diagnostic companies may be better suited to the task.

“It's a reminder that CDC is not a robust manufacturer of tests” and lacks the resources that industry can marshal for their production, Mina said. “We do not ask CDC to make vaccines and pharmaceuticals, and we do not ask the Pentagon to manufacture missiles.”

The CDC has licensed its updated test design to at least seven clinical diagnostic labs. Such labs are the foundation of testing in the U.S. But none have FDA clearance to use them.

Diagnostic labs are developing their own tests, too. But that has been slow-going. One reason is the lack of guaranteed sales. Another is regulatory uncertainty. Recent FDA guidance could make it harder for nongovernmental laboratories to issue new tests in the early phase of pandemics, said Susan Van Meter, president of the American Clinical Laboratory Association, in a July 1 letter to the FDA.

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Transparency is also critical, scientists said. Benjamin Pinsky, medical director of the clinical virology laboratory at Stanford University, said as a public agency the CDC should make its protocol — its recipe for making the test — easily accessible online.

The World Health Organization does so for its bird flu tests, and with that information in hand, Pinsky's lab has developed an H5 bird flu test suited to the strain circulating this year in the U.S. The lab published its approach this month but doesn't have FDA authorization for its broad use.

The CDC's test recipe is available in a published patent, Daskalakis said.

“We have made sure that tests are out there, and that they work,” he added.

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As the CDC came under fire at the July 23 congressional hearing, Daniel Jernigan, director of the CDC's National Center for Emerging and Zoonotic Infectious Diseases, noted that testing is just one tool. The agency needs money for another promising area — looking for the virus in wastewater. Its current program uses supplemental funds, he said: “It is not in the current budget and will go away without additional funding.”

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By: Arthur Allen and Amy Maxmen
Title: The CDC's Test for Bird Flu Works, but It Has Issues
Sourced From: kffhealthnews.org/news/article/bird-flu-test-cdc-flaws/
Published Date: Fri, 26 Jul 2024 09:00:00 +0000

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KFF Health News’ ‘What the Health?’: Harris in the Spotlight

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Thu, 25 Jul 2024 18:45:00 +0000

The Host

Julie Rovner
KFF Health News


@jrovner


Read Julie's stories.

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Julie Rovner is chief Washington correspondent and host of KFF Health News' weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care and Policy A to Z,” now in its third edition.

As Vice President Kamala Harris appears poised to become the Democratic Party's presidential nominee, health policy in general and reproductive health issues in particular are likely to have a higher profile. Harris has long been the Biden administration's point person on abortion rights and reproductive health and was active on other health issues while serving as California's .

Meanwhile, Congress is back for a brief session between presidential conventions, but efforts in the GOP-led House to pass the annual spending bills, due by Oct. 1, have run into the usual roadblocks over abortion-related issues.

This week's panelists are Julie Rovner of KFF Health News, Stephanie Armour of KFF Health News, Rachel Cohrs Zhang of Stat, and Alice Miranda Ollstein of Politico.

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Panelists

Stephanie Armour
KFF Health News


@StephArmour1


Read Stephanie's stories.

Rachel Cohrs Zhang
Stat News

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@rachelcohrs


Read Rachel's stories.

Alice Miranda Ollstein
Politico


@AliceOllstein

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Read Alice's stories.

Among the takeaways from this week's episode:

  • President Joe Biden's to drop out of the presidential race has turned attention to his likely successor on the Democratic ticket, Vice President Kamala Harris. At this late hour in the campaign, she is expected to adopt Biden's health policies, though many anticipate she'll take a firmer stance on restoring Roe v. Wade. And while abortion rights supporters are enthusiastic about Harris' candidacy, opponents are eager to frame her views as extreme.
  • As he transitions from incumbent candidate to outgoing president, Biden is working to frame his legacy, including on health policy. The president has expressed pride that his signature domestic achievement, the Inflation Reduction Act, took on the pharmaceutical industry, including by forcing the makers of the most expensive drugs into negotiations with Medicare. Yet, as with the Affordable Care Act's delayed implementation and results, most Americans have yet to see the IRA's potential effect on drug prices.
  • Lawmakers continue to be hung up on federal government spending, leaving appropriations work undone as they prepare to leave for summer recess. Fights over abortion are, once again, gumming up the works.
  • In abortion news, Iowa's six-week limit is scheduled to take effect next week, causing rippling problems of abortion access throughout the region. In Louisiana, which added the two drugs used in medication abortions to its list of controlled substances, doctors are difficulty using the pills for other indications. And doctors who oppose abortion are pushing higher-risk procedures, like cesarean sections, in lieu of pregnancy termination when the mother's is in danger — as states with strict bans, like and Louisiana, are a rise in the use of surgeries, including hysterectomies, to end pregnancies.
  • The Government Accountability Office reports that many states incorrectly removed hundreds of thousands of eligible people from the Medicaid rolls during the “unwinding” of the covid-19 public health emergency's coverage protections. The Biden administration has been reluctant to call out those states publicly in an attempt to keep the as apolitical as possible.

Also this week, Rovner interviews Anthony Wright, the new executive director of the consumer health advocacy group Families USA. Wright spent the past two decades in California, working with, among others, now-Vice President Kamala Harris on various health issues.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too: 

Julie Rovner: NPR's “A Study Finds That Dogs Can Smell Your Stress — And Make Decisions Accordingly,” by Rachel Treisman.  

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Alice Miranda Ollstein: Stat's “A Pricey Gilead HIV Drug Could Be Made for Dramatically Less Than the Company Charges,” by Silverman, and Politico's “Federal HIV Program Set To Wind Down,” by Alice Miranda Ollstein and David Lim. 

Stephanie Armour: Vox's “Free Medical School Won't Solve the Doctor Shortage,” by Dylan Scott.  

Rachel Cohrs Zhang: Stat's “How UnitedHealth Harnesses Its Physician Empire To Squeeze Profits out of Patients,” by Bob Herman, Tara Bannow, Casey Ross, and Lizzy Lawrence. 

Also mentioned on this week's podcast:

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Francis Ying
Audio producer

Emmarie Huetteman
Editor

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KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Title: KFF Health News' ‘What the Health?': Harris in the Spotlight
Sourced From: kffhealthnews.org/news/podcast/what-the-health-357-kamala-harris-campaign-health-policy-july-25-2024/
Published Date: Thu, 25 Jul 2024 18:45:00 +0000

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