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"content": "\u003cp>President-elect \u003ca href=\"https://www.kqed.org/news/tag/donald-trump\">Donald Trump’s\u003c/a> choice this week to lead the National Institutes of Health is a controversial Stanford researcher who was highly critical of the COVID-19 pandemic response, drawing pushback from the medical community and some still suffering from the long-term effects of the disease.\u003c/p>\n\u003cp>Dr. Jay Bhattacharya, a professor of health policy and senior fellow at the Stanford Institute for Economic Policy Research, was one of three co-authors of a 2020 letter that challenged policies like lockdowns and mask mandates and called for speeding up herd immunity.\u003c/p>\n\u003cp>The so-called Great Barrington Declaration, which was written before the widespread availability of a vaccine, argued that measures should be taken to protect those who were most vulnerable to dying of COVID-19 but that others “should immediately be allowed to resume life as normal.” Allowing the virus to spread among younger, healthier people would help drive up natural immunity and “minimize mortality and social harm,” it said.\u003c/p>\n\u003cp>The strategy was brought to the attention of then-President Trump by his pandemic adviser, Dr. Scott Atlas — a Stanford colleague of Bhattacharya and Hoover Institution fellow — but the scientific community swiftly excoriated it. Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, dismissed it as “\u003ca href=\"https://www.pbs.org/newshour/health/dr-fauci-criticizes-concept-of-herd-immunity\">total nonsense\u003c/a>,” and many physicians, scientists and other experts said the “fringe” approach was unethical and would endanger millions of people.\u003c/p>\n\u003cp>“Hearing from researchers who were pushing ideas for how a health department should be responding, when they themselves were not responding or seeing patients — to me, I was like, you guys have major gaps in what expertise you’re bringing to the kind of things you’re putting forward,” said Dr. Abraar Karaan, a Stanford infectious-diseases physician who helped lead Massachusetts’ COVID-19 response.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Bhattacharya is not a practicing physician. \u003ca href=\"https://profiles.stanford.edu/jay-bhattacharya\">According to Stanford\u003c/a>, his research “focuses on the economics of health care around the world with a particular emphasis on the health and well-being of vulnerable populations.”\u003c/p>\n\u003cp>“Dr. Bhattacharya, who is a researcher but doesn’t see patients, was not on the front lines the way many of us as clinicians were,” Karaan said.\u003c/p>\n\u003cp>Karaan did point out Bhattacharya’s impressive track record as a researcher, including receiving the highest level of grants from the NIH.\u003c/p>\n\u003cp>The NIH conducts and funds major biomedical and public health research for the United States. If confirmed by the Senate, Bhattacharya would lead the sprawling agency — with a budget pushing $50 billion.\u003c/p>\n\u003cp>Many have concerns over where that research and funding will be directed under the next Trump administration. His choice to lead the NIH’s parent agency, the Department of Health and Human Services, is Robert F. Kennedy Jr., a vaccine skeptic and conspiracy theorist who has also called for turning the government’s public health focus away from infectious disease.\u003c/p>\n\u003cp>“I agree that chronic disease is a big problem; I totally agree with that,” Karaan said. “But we don’t get to decide where the spotlight goes when you have actual health emergencies happening. We don’t get to decide when infectious diseases are no longer something we care about.”\u003c/p>\n\u003cp>For some \u003ca href=\"https://www.kqed.org/news/11950643/screaming-into-a-void-long-covid-patients-have-waited-in-vain-for-years-for-treatments\">Bay Area patients with long COVID\u003c/a> and their advocates, Bhattacharya’s nomination is especially concerning. Millions of Americans are estimated to have had the increasingly widespread chronic condition, whose symptoms often include brain fog and fatigue.[aside postID=news_11950643 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2023/05/RS65622_005_KQED_LongCOVIDCharlieMcCone_05182023-qut.jpg']\u003c/p>\n\u003cp>Much is still unknown about long COVID, including what makes people susceptible to it. Many of those still suffering from its debilitating effects were otherwise young and healthy — the same population that Bhattacharya and his Great Barrington Declaration co-authors proposed allowing to contract and spread COVID-19 during the height of the pandemic.\u003c/p>\n\u003cp>Charlie McCone, 34, has had long COVID since March 2020. The San Francisco resident said many in the long COVID community were already frustrated with how the NIH was prioritizing funding and research, though they had seen recent signs of progress.\u003c/p>\n\u003cp>“Zero diseases in the history of the world have been solved with a one-time investment of funds,” he told KQED. “We have to be serious about having substantial funds on an annual basis to actually get somewhere with this condition.”\u003c/p>\n\u003cp>McCone praised the direction of the NIH’s approach under Dr. Jeanne Marrazzo, who was named director of the National Institute of Allergy and Infectious Diseases last year. However, he noted that advocates are still pushing for annual \u003ca href=\"https://www.kqed.org/news/12006894/bay-areas-long-covid-community-celebrates-moonshot-bill-for-10-billion-in-funding\">funding for long COVID research\u003c/a> and to give it a permanent home in the NIH.\u003c/p>\n\u003cp>“If we had allocated a one-time fund to the NIH for HIV in the mid-’80s … and decided we were going to just stop giving funds because we didn’t see a return on investment, that would have been deemed as completely irrational and completely nonsensical,” McCone said. “And so I think anybody who’s taking that perspective now, I think the same applies.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>KQED’s Keith Mizuguchi contributed to this report.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>President-elect \u003ca href=\"https://www.kqed.org/news/tag/donald-trump\">Donald Trump’s\u003c/a> choice this week to lead the National Institutes of Health is a controversial Stanford researcher who was highly critical of the COVID-19 pandemic response, drawing pushback from the medical community and some still suffering from the long-term effects of the disease.\u003c/p>\n\u003cp>Dr. Jay Bhattacharya, a professor of health policy and senior fellow at the Stanford Institute for Economic Policy Research, was one of three co-authors of a 2020 letter that challenged policies like lockdowns and mask mandates and called for speeding up herd immunity.\u003c/p>\n\u003cp>The so-called Great Barrington Declaration, which was written before the widespread availability of a vaccine, argued that measures should be taken to protect those who were most vulnerable to dying of COVID-19 but that others “should immediately be allowed to resume life as normal.” Allowing the virus to spread among younger, healthier people would help drive up natural immunity and “minimize mortality and social harm,” it said.\u003c/p>\n\u003cp>The strategy was brought to the attention of then-President Trump by his pandemic adviser, Dr. Scott Atlas — a Stanford colleague of Bhattacharya and Hoover Institution fellow — but the scientific community swiftly excoriated it. Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, dismissed it as “\u003ca href=\"https://www.pbs.org/newshour/health/dr-fauci-criticizes-concept-of-herd-immunity\">total nonsense\u003c/a>,” and many physicians, scientists and other experts said the “fringe” approach was unethical and would endanger millions of people.\u003c/p>\n\u003cp>“Hearing from researchers who were pushing ideas for how a health department should be responding, when they themselves were not responding or seeing patients — to me, I was like, you guys have major gaps in what expertise you’re bringing to the kind of things you’re putting forward,” said Dr. Abraar Karaan, a Stanford infectious-diseases physician who helped lead Massachusetts’ COVID-19 response.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Bhattacharya is not a practicing physician. \u003ca href=\"https://profiles.stanford.edu/jay-bhattacharya\">According to Stanford\u003c/a>, his research “focuses on the economics of health care around the world with a particular emphasis on the health and well-being of vulnerable populations.”\u003c/p>\n\u003cp>“Dr. Bhattacharya, who is a researcher but doesn’t see patients, was not on the front lines the way many of us as clinicians were,” Karaan said.\u003c/p>\n\u003cp>Karaan did point out Bhattacharya’s impressive track record as a researcher, including receiving the highest level of grants from the NIH.\u003c/p>\n\u003cp>The NIH conducts and funds major biomedical and public health research for the United States. If confirmed by the Senate, Bhattacharya would lead the sprawling agency — with a budget pushing $50 billion.\u003c/p>\n\u003cp>Many have concerns over where that research and funding will be directed under the next Trump administration. His choice to lead the NIH’s parent agency, the Department of Health and Human Services, is Robert F. Kennedy Jr., a vaccine skeptic and conspiracy theorist who has also called for turning the government’s public health focus away from infectious disease.\u003c/p>\n\u003cp>“I agree that chronic disease is a big problem; I totally agree with that,” Karaan said. “But we don’t get to decide where the spotlight goes when you have actual health emergencies happening. We don’t get to decide when infectious diseases are no longer something we care about.”\u003c/p>\n\u003cp>For some \u003ca href=\"https://www.kqed.org/news/11950643/screaming-into-a-void-long-covid-patients-have-waited-in-vain-for-years-for-treatments\">Bay Area patients with long COVID\u003c/a> and their advocates, Bhattacharya’s nomination is especially concerning. Millions of Americans are estimated to have had the increasingly widespread chronic condition, whose symptoms often include brain fog and fatigue.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Much is still unknown about long COVID, including what makes people susceptible to it. Many of those still suffering from its debilitating effects were otherwise young and healthy — the same population that Bhattacharya and his Great Barrington Declaration co-authors proposed allowing to contract and spread COVID-19 during the height of the pandemic.\u003c/p>\n\u003cp>Charlie McCone, 34, has had long COVID since March 2020. The San Francisco resident said many in the long COVID community were already frustrated with how the NIH was prioritizing funding and research, though they had seen recent signs of progress.\u003c/p>\n\u003cp>“Zero diseases in the history of the world have been solved with a one-time investment of funds,” he told KQED. “We have to be serious about having substantial funds on an annual basis to actually get somewhere with this condition.”\u003c/p>\n\u003cp>McCone praised the direction of the NIH’s approach under Dr. Jeanne Marrazzo, who was named director of the National Institute of Allergy and Infectious Diseases last year. However, he noted that advocates are still pushing for annual \u003ca href=\"https://www.kqed.org/news/12006894/bay-areas-long-covid-community-celebrates-moonshot-bill-for-10-billion-in-funding\">funding for long COVID research\u003c/a> and to give it a permanent home in the NIH.\u003c/p>\n\u003cp>“If we had allocated a one-time fund to the NIH for HIV in the mid-’80s … and decided we were going to just stop giving funds because we didn’t see a return on investment, that would have been deemed as completely irrational and completely nonsensical,” McCone said. “And so I think anybody who’s taking that perspective now, I think the same applies.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>KQED’s Keith Mizuguchi contributed to this report.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>\u003ca href=\"https://www.kqed.org/news/tag/long-covid\">Long COVID\u003c/a> patients and advocates in the \u003ca href=\"https://www.kqed.org/news/tag/bay-area\">Bay Area\u003c/a> have spent years pushing for a concerted effort toward research, prevention and a cure.\u003c/p>\n\u003cp>They’re now hopeful that the increasingly widespread chronic condition that follows many COVID-19 infections will soon be better understood, thanks to legislation introduced Friday in the House of Representatives that would provide $10 billion in funding for long COVID research and education.\u003c/p>\n\u003cp>The Long COVID Research Moonshot Act, proposed by Rep. Ilhan Omar (D-Minn.) and co-sponsored by Rep.\u003ca href=\"https://www.kqed.org/news/11973684\"> Barbara Lee\u003c/a> (D-Oakland), is a companion bill to one that Sen. Bernie Sanders (I-Vt.) \u003ca href=\"https://www.congress.gov/bill/118th-congress/senate-bill/4964/cosponsors?s=2&r=2&q=%7B%22search%22%3A%22bernie+sanders%22%7D\">introduced\u003c/a> in the Senate in August.\u003c/p>\n\u003cp>“It’s huge for us,” said Lisa McCorkell, an Oakland resident who co-founded the Patient-Led Research Collaborative. The PLRC is a group of researchers living with long COVID and other related chronic conditions.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“It really shows that this bill has broad support — as it should — because it’s aiming to address the crisis of long COVID in a way that puts the resources that are necessary behind it,” McCorkell said.\u003c/p>\n\u003cp>The \u003ca href=\"https://www.kqed.org/news/11986724/after-months-long-coma-this-latino-immigrant-worker-is-still-fighting-mysterious-symptoms\">symptoms of long COVID\u003c/a> often include brain fog and fatigue. Many people found to have it have also been diagnosed with conditions like \u003ca href=\"https://solvecfs.org/me-cfs-long-covid/about-the-disease/\">myalgic encephalomyelitis/chronic fatigue syndrome\u003c/a> (ME/CF) and \u003ca href=\"https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots\">postural orthostatic tachycardia syndrome\u003c/a> (POTS). These chronic, complex immune diseases can profoundly limit the wellness and productivity of patients and, like long COVID, are often triggered by an infection.\u003c/p>\n\u003cp>Studies have also found that COVID-19 can cause immune system \u003ca href=\"https://www.yalemedicine.org/news/the-long-covid-puzzle-autoimmunity-inflammation-and-other-possible-causes#:~:text=The%20theory%20is%20that%20COVID,in%20those%20with%20Long%20COVID.\">dysfunction\u003c/a>, allowing dormant infections, like the virus that causes Epstein-Barr disease or the bacteria that causes Lyme disease, to reemerge. And while vaccines have ensured bouts of COVID-19 are less likely to be deadly than they were at the pandemic’s start, every infection makes you more \u003ca href=\"https://www.unmc.edu/healthsecurity/transmission/2023/12/27/every-covid-infection-increases-your-risk-of-long-covid-study-warns/\">susceptible \u003c/a>to contracting long COVID.\u003c/p>\n\u003cp>[aside postID=news_12006600 hero='https://cdn.kqed.org/wp-content/uploads/sites/10/2024/09/GettyImages-1668874864-1020x646.jpg']\u003c/p>\n\u003cp>Dr. Linda Geng, co-director of the Stanford Post-Acute COVID-19 Syndrome Clinic, said long COVID has become a “huge public health problem,” affecting millions of people in the United States long term.\u003c/p>\n\u003cp>Though physicians have an FDA-approved therapeutic toolkit for COVID-19, they currently have “minimal to no evidence-based strategies” to help those who have long COVID or who may develop it in the future, Geng said.\u003c/p>\n\u003cp>The Long COVID Research Moonshot Act would create a new research center within the National Institutes of Health to study the condition and other related illnesses, like ME/CFS and POTS. The center would house a new database tracking long COVID cases, an advisory board, and new grant processes to accelerate clinical trials, according to a report by \u003ca href=\"https://www.motherjones.com/politics/2024/09/ilhan-omar-bernie-long-covid-house-bill/\">\u003cem>Mother Jones\u003c/em>\u003c/a>.\u003c/p>\n\u003cp>The legislation would also fund public health education and clinics dedicated to long COVID care, especially in underserved communities — and would require any new treatments developed through the act to be reasonably priced and accessible to more patients.\u003c/p>\n\u003cp>The Bay Area’s Umoja Health, which serves the COVID-19 and health needs of people of color, was an early sponsor of the Sanders bill. Co-founder Kim Rhoads described how long COVID can transform patients’ lives and contribute to long-term disability.\u003c/p>\n\u003cp>“We’ve heard stories of folks who now have a hospital bed in their house where the family member who was affected by long COVID lives,” Rhoads said. “Folks who do not like to get out of bed, have burning feet and difficulty walking or have exertional malaise, which is basically a fatigue that can come over people after just doing simple things like cooking a meal.\u003c/p>\n\u003cp>Rhoads said the disease has largely been ignored or treated like a seasonal virus, such as the flu. “There are political reasons to deny that there are any long-term effects of COVID,” Rhoads said, “to allow for us to ‘get back to normal.’”\u003c/p>\n\u003cp>In her work, Rhoads has seen firsthand how communities of color and disabled people have been disproportionately harmed by long COVID. Historically marginalized groups are also on the frontlines of infections and suffer from the highest mortality rates.\u003c/p>\n\u003cp>Disabled people \u003ca href=\"https://www.cidrap.umn.edu/covid-19/long-covid-rate-among-disabled-people-double-able-bodied\">are twice as likely\u003c/a> to contract long COVID as nondisabled people, said Sabrina Epstein, a policy analyst with Disability Rights California.\u003c/p>\n\u003cp>“This is deeply an equity and justice issue,” said Epstein, whose disability makes her at risk for long COVID. “The research proposed by this bill has the potential to benefit folks in the disability and chronic illness community.”\u003c/p>\n\u003cp>\u003cem>KQED’s \u003ca href=\"https://www.kqed.org/author/carlysevern\">Carly Severn\u003c/a> contributed to this report. \u003c/em>\u003c/p>\n\u003cp>\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003ca href=\"https://www.kqed.org/news/tag/long-covid\">Long COVID\u003c/a> patients and advocates in the \u003ca href=\"https://www.kqed.org/news/tag/bay-area\">Bay Area\u003c/a> have spent years pushing for a concerted effort toward research, prevention and a cure.\u003c/p>\n\u003cp>They’re now hopeful that the increasingly widespread chronic condition that follows many COVID-19 infections will soon be better understood, thanks to legislation introduced Friday in the House of Representatives that would provide $10 billion in funding for long COVID research and education.\u003c/p>\n\u003cp>The Long COVID Research Moonshot Act, proposed by Rep. Ilhan Omar (D-Minn.) and co-sponsored by Rep.\u003ca href=\"https://www.kqed.org/news/11973684\"> Barbara Lee\u003c/a> (D-Oakland), is a companion bill to one that Sen. Bernie Sanders (I-Vt.) \u003ca href=\"https://www.congress.gov/bill/118th-congress/senate-bill/4964/cosponsors?s=2&r=2&q=%7B%22search%22%3A%22bernie+sanders%22%7D\">introduced\u003c/a> in the Senate in August.\u003c/p>\n\u003cp>“It’s huge for us,” said Lisa McCorkell, an Oakland resident who co-founded the Patient-Led Research Collaborative. The PLRC is a group of researchers living with long COVID and other related chronic conditions.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“It really shows that this bill has broad support — as it should — because it’s aiming to address the crisis of long COVID in a way that puts the resources that are necessary behind it,” McCorkell said.\u003c/p>\n\u003cp>The \u003ca href=\"https://www.kqed.org/news/11986724/after-months-long-coma-this-latino-immigrant-worker-is-still-fighting-mysterious-symptoms\">symptoms of long COVID\u003c/a> often include brain fog and fatigue. Many people found to have it have also been diagnosed with conditions like \u003ca href=\"https://solvecfs.org/me-cfs-long-covid/about-the-disease/\">myalgic encephalomyelitis/chronic fatigue syndrome\u003c/a> (ME/CF) and \u003ca href=\"https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots\">postural orthostatic tachycardia syndrome\u003c/a> (POTS). These chronic, complex immune diseases can profoundly limit the wellness and productivity of patients and, like long COVID, are often triggered by an infection.\u003c/p>\n\u003cp>Studies have also found that COVID-19 can cause immune system \u003ca href=\"https://www.yalemedicine.org/news/the-long-covid-puzzle-autoimmunity-inflammation-and-other-possible-causes#:~:text=The%20theory%20is%20that%20COVID,in%20those%20with%20Long%20COVID.\">dysfunction\u003c/a>, allowing dormant infections, like the virus that causes Epstein-Barr disease or the bacteria that causes Lyme disease, to reemerge. And while vaccines have ensured bouts of COVID-19 are less likely to be deadly than they were at the pandemic’s start, every infection makes you more \u003ca href=\"https://www.unmc.edu/healthsecurity/transmission/2023/12/27/every-covid-infection-increases-your-risk-of-long-covid-study-warns/\">susceptible \u003c/a>to contracting long COVID.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Dr. Linda Geng, co-director of the Stanford Post-Acute COVID-19 Syndrome Clinic, said long COVID has become a “huge public health problem,” affecting millions of people in the United States long term.\u003c/p>\n\u003cp>Though physicians have an FDA-approved therapeutic toolkit for COVID-19, they currently have “minimal to no evidence-based strategies” to help those who have long COVID or who may develop it in the future, Geng said.\u003c/p>\n\u003cp>The Long COVID Research Moonshot Act would create a new research center within the National Institutes of Health to study the condition and other related illnesses, like ME/CFS and POTS. The center would house a new database tracking long COVID cases, an advisory board, and new grant processes to accelerate clinical trials, according to a report by \u003ca href=\"https://www.motherjones.com/politics/2024/09/ilhan-omar-bernie-long-covid-house-bill/\">\u003cem>Mother Jones\u003c/em>\u003c/a>.\u003c/p>\n\u003cp>The legislation would also fund public health education and clinics dedicated to long COVID care, especially in underserved communities — and would require any new treatments developed through the act to be reasonably priced and accessible to more patients.\u003c/p>\n\u003cp>The Bay Area’s Umoja Health, which serves the COVID-19 and health needs of people of color, was an early sponsor of the Sanders bill. Co-founder Kim Rhoads described how long COVID can transform patients’ lives and contribute to long-term disability.\u003c/p>\n\u003cp>“We’ve heard stories of folks who now have a hospital bed in their house where the family member who was affected by long COVID lives,” Rhoads said. “Folks who do not like to get out of bed, have burning feet and difficulty walking or have exertional malaise, which is basically a fatigue that can come over people after just doing simple things like cooking a meal.\u003c/p>\n\u003cp>Rhoads said the disease has largely been ignored or treated like a seasonal virus, such as the flu. “There are political reasons to deny that there are any long-term effects of COVID,” Rhoads said, “to allow for us to ‘get back to normal.’”\u003c/p>\n\u003cp>In her work, Rhoads has seen firsthand how communities of color and disabled people have been disproportionately harmed by long COVID. Historically marginalized groups are also on the frontlines of infections and suffer from the highest mortality rates.\u003c/p>\n\u003cp>Disabled people \u003ca href=\"https://www.cidrap.umn.edu/covid-19/long-covid-rate-among-disabled-people-double-able-bodied\">are twice as likely\u003c/a> to contract long COVID as nondisabled people, said Sabrina Epstein, a policy analyst with Disability Rights California.\u003c/p>\n\u003cp>“This is deeply an equity and justice issue,” said Epstein, whose disability makes her at risk for long COVID. “The research proposed by this bill has the potential to benefit folks in the disability and chronic illness community.”\u003c/p>\n\u003cp>\u003cem>KQED’s \u003ca href=\"https://www.kqed.org/author/carlysevern\">Carly Severn\u003c/a> contributed to this report. \u003c/em>\u003c/p>\n\u003cp>\u003c/p>\n\u003c/div>\u003c/p>",
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"title": "After Months-Long Coma, This Latino Immigrant Worker Is Still Fighting Mysterious Long COVID Symptoms",
"headTitle": "After Months-Long Coma, This Latino Immigrant Worker Is Still Fighting Mysterious Long COVID Symptoms | KQED",
"content": "\u003cp>\u003cem>This story was produced by \u003c/em>\u003ca href=\"https://eltecolote.org/content/en/\">\u003cem>El Tecolote\u003c/em>\u003c/a>\u003cem>, a bilingual publication that documents and amplifies the voices of San Francisco’s Latinx communities.\u003c/em>\u003c/p>\n\u003cp>Osbaldo Varilla-Aguilar rarely worried about his health. As a construction worker, he had enough gigs to earn more than $500 a week under the table, allowing him to rent a studio for $600 a month with two other Latinx construction workers in San Francisco’s Mission District. Despite working nearly full-time, he was barely able to make ends meet. So, when the pandemic hit, Varilla-Aguilar continued working. He got critically sick in December 2020. To this day, Varilla-Aguilar still wonders whether he got COVID-19 on the job or at the grocery store.\u003c/p>\n\u003cp>Either way, it landed him in a coma — for more than three months.\u003c/p>\n\u003cp>“It was such a difficult time,” said his sister, Araceli Aguilar-Perez. “To see him like that, it affected me a lot,” Aguilar-Perez said the doctors recommended disconnecting Varilla-Aguilar from the ventilator after two months. The family refused. Hoping for a miracle, Aguilar-Perez talked to her unconscious brother through a hospital monitor via Zoom calls every week. Then, in March 2021, Varilla-Aguilar woke up. “When I opened my eyes, it felt like a few days [had passed],” Varilla-Aguilar said. “But they told me it had been three months … It was a shock.”\u003c/p>\n\u003cfigure id=\"attachment_11986483\" class=\"wp-caption alignnone\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11986483\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED.jpg\" alt=\"A middle-aged Latino man puts on an oxygen mask at home.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Osbaldo Varilla-Aguilar, 46, puts on the oxygen ventilator he uses every night in San Francisco on Feb. 26, 2024. \u003ccite>(Pablo Unzueta for El Tecolote/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Today, more than three years after he was discharged from the hospital, Varilla-Aguilar still depends on the oxygen respirator next to his bed. He has since moved out from his shared Mission District studio and lives in Sunnydale in a shared home with other Latinx workers.\u003c/p>\n\u003cp>He and his housemates are among the community that COVID-19 hit the hardest in San Francisco: immigrants, especially those working unprotected essential jobs. As the devastating impact of \u003ca href=\"https://ldi.upenn.edu/our-work/research-updates/a-health-equity-voice-from-san-franciscos-latino-covid-pandemic/\">COVID-19 in Latinx communities\u003c/a> in the Mission District and Bayview is increasingly documented, the lingering, and sometimes extreme, symptoms of infection are much less understood.\u003c/p>\n\u003cp>Weeks after being discharged from the hospital, Varilla-Aguilar noticed his vision was going blurry while waiting at a bus stop. Within four hours, his left eye went permanently blind.\u003c/p>\n\u003cfigure id=\"attachment_11986484\" class=\"wp-caption alignnone\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11986484\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED.jpg\" alt=\"A middle-aged Latinx couple, a woman seated and a man standing with his right arm around her as they both look at the camera in their home kitchen with a refrigerator behind them.\" width=\"2000\" height=\"1322\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED-800x529.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED-1020x674.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED-160x106.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED-1536x1015.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED-1920x1269.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Siblings Araceli Aguilar-Perez (left) and Osbaldo Varilla-Aguilar inside Aguilar-Perez’s home in San Francisco on April 25, 2024. \u003ccite>(Pablo Unzueta for El Tecolote/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“[COVID] can cause many things, one of them being thrombosis,” said Dr. Hector Bonilla, a clinical infectious disease expert and associate professor at Stanford University. According to\u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10123679/\"> medical research\u003c/a>, critically ill COVID-19 patients like Varilla-Aguilar are especially at risk for severe health outcomes like thrombosis or blood clots. “It can happen any place [in the body],” Bonilla said. “Maybe this can explain what happened in the eye.”\u003c/p>\n\u003cp>Combined with his deteriorated eyesight, Varilla-Aguilar also endures fatigue, brain fog and depression, which are among the more common symptoms cited by people who experience long COVID. He said he also never fully recovered the strength he lost during his monthslong coma despite a year in physical therapy.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“I don’t have the strength that I used to, and I run out of breath when I try,” Varilla-Aguilar said. “So it’s hard finding steady work.” Despite his physical weaknesses, he continues to take on physically demanding jobs like landscaping and, on occasion, roofing gigs. “I have no choice. I need to pay the rent. If I don’t do it, who else is going to help me?”\u003c/p>\n\u003cp>According to the 46-year-old, doctors have not been able to determine why COVID-19 took an extreme toll on his health. Instead, doctors have prescribed him several prescription pills to help reduce some of his ongoing symptoms. Still, he believes this hasn’t been enough and that the cost of medication is expensive. His experience is one faced by millions of long COVID patients across the country as researchers continue to look for the underlying causes of the mysterious symptoms.\u003c/p>\n\u003cfigure id=\"attachment_11986481\" class=\"wp-caption alignnone\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11986481\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED.jpg\" alt=\"A middle-aged Latino man gestures during a presentation as he talks into a microphone.\" width=\"2000\" height=\"1330\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED-800x532.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED-1020x678.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED-160x106.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED-1536x1021.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED-1920x1277.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Osbaldo Varilla-Aguilar, 46, shares his experience with mysterious symptoms during a ‘Somos Remedios’ event inside the Latino Task Force building in the Mission District in San Francisco on Jan. 13, 2024. \u003ccite>(Pablo Unzueta for El Tecolote/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cfigure id=\"attachment_11986486\" class=\"wp-caption alignnone\" style=\"max-width: 2500px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11986486\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED.jpg\" alt=\"\" width=\"2500\" height=\"821\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED.jpg 2500w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-800x263.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-1020x335.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-160x53.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-1536x504.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-2048x673.jpg 2048w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-1920x631.jpg 1920w\" sizes=\"(max-width: 2500px) 100vw, 2500px\">\u003cfigcaption class=\"wp-caption-text\">Left: (From left) Rosario Ortegón, Martin Rodríguez, and Osbaldo Varilla-Aguilar bag fresh produce during a ‘Somos Remedios’ event at the Latino Task Force building in the Mission District in San Francisco on Jan. 13, 2024. Right: Herbs and remedies on display at a ‘Somos Remedios’ event. \u003ccite>(Pablo Unzueta for El Tecolote/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Amid medical uncertainty, Varilla-Aguilar, like other sufferers of long COVID, has turned elsewhere for solutions. Previously skeptical of alternative medicine, Varilla-Aguilar agreed to his sister’s “baño de pies” after months of coping with numbness in his feet. The foot bath was infused with herbs like Santa Maria, rue, rose buds and eucalyptus, which his sister blended into a bucket of hot water. The effort was meant to reduce stress and inflammation. After a few treatments, he said he was shocked to have gained back sensations in his feet.\u003c/p>\n\u003cp>Since then, Varilla-Aguilar has used and advocated for natural remedies rooted in Indigenous practice, including the consumption of teas, herbs, and whole foods. He is also a member of “Somos Remedios,” a Mission-based grassroots research group that documents Latinx solutions to treating long COVID.\u003c/p>\n\u003cp>Though Varilla-Aguilar now prioritizes his health, he admits that he will never be the same again. “Every day, there is an effort to live, to work, and to have enough money to eat,” Varilla-Aguilar said. “I found [strength] within myself, [when] there was nowhere else to find it.”\u003c/p>\n\u003cfigure id=\"attachment_11986485\" class=\"wp-caption alignnone\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11986485\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED.jpg\" alt=\"A middle-aged Latino man outside of his house, photographed from inside the house, with a car parked on the street outside his house.\" width=\"2000\" height=\"1322\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED-800x529.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED-1020x674.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED-160x106.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED-1536x1015.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED-1920x1269.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Osbaldo Varilla-Aguilar, 46, steps outside of his sister’s home in San Francisco on April 25, 2024. \u003ccite>(Pablo Unzueta for El Tecolote/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003ca href=\"https://eltecolote.org/content/en/long-covid-latino-immigrant-worker/\">\u003cem>El Tecolote’s original version of the story can be found here.\u003c/em>\u003c/a>\u003c/p>\n\u003cp>\u003c/p>\n",
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"excerpt": "Construction worker Osbaldo Varilla-Aguilar is still fighting mysterious symptoms after emerging from a 3-month coma and going blind in his left eye. His experience is just one example of the devastating impact that COVID continues to have on Latinx communities in San Francisco.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cem>This story was produced by \u003c/em>\u003ca href=\"https://eltecolote.org/content/en/\">\u003cem>El Tecolote\u003c/em>\u003c/a>\u003cem>, a bilingual publication that documents and amplifies the voices of San Francisco’s Latinx communities.\u003c/em>\u003c/p>\n\u003cp>Osbaldo Varilla-Aguilar rarely worried about his health. As a construction worker, he had enough gigs to earn more than $500 a week under the table, allowing him to rent a studio for $600 a month with two other Latinx construction workers in San Francisco’s Mission District. Despite working nearly full-time, he was barely able to make ends meet. So, when the pandemic hit, Varilla-Aguilar continued working. He got critically sick in December 2020. To this day, Varilla-Aguilar still wonders whether he got COVID-19 on the job or at the grocery store.\u003c/p>\n\u003cp>Either way, it landed him in a coma — for more than three months.\u003c/p>\n\u003cp>“It was such a difficult time,” said his sister, Araceli Aguilar-Perez. “To see him like that, it affected me a lot,” Aguilar-Perez said the doctors recommended disconnecting Varilla-Aguilar from the ventilator after two months. The family refused. Hoping for a miracle, Aguilar-Perez talked to her unconscious brother through a hospital monitor via Zoom calls every week. Then, in March 2021, Varilla-Aguilar woke up. “When I opened my eyes, it felt like a few days [had passed],” Varilla-Aguilar said. “But they told me it had been three months … It was a shock.”\u003c/p>\n\u003cfigure id=\"attachment_11986483\" class=\"wp-caption alignnone\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11986483\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED.jpg\" alt=\"A middle-aged Latino man puts on an oxygen mask at home.\" width=\"2000\" height=\"1333\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-16-KQED-1920x1280.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Osbaldo Varilla-Aguilar, 46, puts on the oxygen ventilator he uses every night in San Francisco on Feb. 26, 2024. \u003ccite>(Pablo Unzueta for El Tecolote/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Today, more than three years after he was discharged from the hospital, Varilla-Aguilar still depends on the oxygen respirator next to his bed. He has since moved out from his shared Mission District studio and lives in Sunnydale in a shared home with other Latinx workers.\u003c/p>\n\u003cp>He and his housemates are among the community that COVID-19 hit the hardest in San Francisco: immigrants, especially those working unprotected essential jobs. As the devastating impact of \u003ca href=\"https://ldi.upenn.edu/our-work/research-updates/a-health-equity-voice-from-san-franciscos-latino-covid-pandemic/\">COVID-19 in Latinx communities\u003c/a> in the Mission District and Bayview is increasingly documented, the lingering, and sometimes extreme, symptoms of infection are much less understood.\u003c/p>\n\u003cp>Weeks after being discharged from the hospital, Varilla-Aguilar noticed his vision was going blurry while waiting at a bus stop. Within four hours, his left eye went permanently blind.\u003c/p>\n\u003cfigure id=\"attachment_11986484\" class=\"wp-caption alignnone\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11986484\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED.jpg\" alt=\"A middle-aged Latinx couple, a woman seated and a man standing with his right arm around her as they both look at the camera in their home kitchen with a refrigerator behind them.\" width=\"2000\" height=\"1322\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED-800x529.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED-1020x674.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED-160x106.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED-1536x1015.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-33-KQED-1920x1269.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Siblings Araceli Aguilar-Perez (left) and Osbaldo Varilla-Aguilar inside Aguilar-Perez’s home in San Francisco on April 25, 2024. \u003ccite>(Pablo Unzueta for El Tecolote/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“[COVID] can cause many things, one of them being thrombosis,” said Dr. Hector Bonilla, a clinical infectious disease expert and associate professor at Stanford University. According to\u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10123679/\"> medical research\u003c/a>, critically ill COVID-19 patients like Varilla-Aguilar are especially at risk for severe health outcomes like thrombosis or blood clots. “It can happen any place [in the body],” Bonilla said. “Maybe this can explain what happened in the eye.”\u003c/p>\n\u003cp>Combined with his deteriorated eyesight, Varilla-Aguilar also endures fatigue, brain fog and depression, which are among the more common symptoms cited by people who experience long COVID. He said he also never fully recovered the strength he lost during his monthslong coma despite a year in physical therapy.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“I don’t have the strength that I used to, and I run out of breath when I try,” Varilla-Aguilar said. “So it’s hard finding steady work.” Despite his physical weaknesses, he continues to take on physically demanding jobs like landscaping and, on occasion, roofing gigs. “I have no choice. I need to pay the rent. If I don’t do it, who else is going to help me?”\u003c/p>\n\u003cp>According to the 46-year-old, doctors have not been able to determine why COVID-19 took an extreme toll on his health. Instead, doctors have prescribed him several prescription pills to help reduce some of his ongoing symptoms. Still, he believes this hasn’t been enough and that the cost of medication is expensive. His experience is one faced by millions of long COVID patients across the country as researchers continue to look for the underlying causes of the mysterious symptoms.\u003c/p>\n\u003cfigure id=\"attachment_11986481\" class=\"wp-caption alignnone\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11986481\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED.jpg\" alt=\"A middle-aged Latino man gestures during a presentation as he talks into a microphone.\" width=\"2000\" height=\"1330\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED-800x532.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED-1020x678.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED-160x106.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED-1536x1021.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-8-KQED-1920x1277.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Osbaldo Varilla-Aguilar, 46, shares his experience with mysterious symptoms during a ‘Somos Remedios’ event inside the Latino Task Force building in the Mission District in San Francisco on Jan. 13, 2024. \u003ccite>(Pablo Unzueta for El Tecolote/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cfigure id=\"attachment_11986486\" class=\"wp-caption alignnone\" style=\"max-width: 2500px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11986486\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED.jpg\" alt=\"\" width=\"2500\" height=\"821\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED.jpg 2500w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-800x263.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-1020x335.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-160x53.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-1536x504.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-2048x673.jpg 2048w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-DYPTICH-KQED-1920x631.jpg 1920w\" sizes=\"(max-width: 2500px) 100vw, 2500px\">\u003cfigcaption class=\"wp-caption-text\">Left: (From left) Rosario Ortegón, Martin Rodríguez, and Osbaldo Varilla-Aguilar bag fresh produce during a ‘Somos Remedios’ event at the Latino Task Force building in the Mission District in San Francisco on Jan. 13, 2024. Right: Herbs and remedies on display at a ‘Somos Remedios’ event. \u003ccite>(Pablo Unzueta for El Tecolote/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Amid medical uncertainty, Varilla-Aguilar, like other sufferers of long COVID, has turned elsewhere for solutions. Previously skeptical of alternative medicine, Varilla-Aguilar agreed to his sister’s “baño de pies” after months of coping with numbness in his feet. The foot bath was infused with herbs like Santa Maria, rue, rose buds and eucalyptus, which his sister blended into a bucket of hot water. The effort was meant to reduce stress and inflammation. After a few treatments, he said he was shocked to have gained back sensations in his feet.\u003c/p>\n\u003cp>Since then, Varilla-Aguilar has used and advocated for natural remedies rooted in Indigenous practice, including the consumption of teas, herbs, and whole foods. He is also a member of “Somos Remedios,” a Mission-based grassroots research group that documents Latinx solutions to treating long COVID.\u003c/p>\n\u003cp>Though Varilla-Aguilar now prioritizes his health, he admits that he will never be the same again. “Every day, there is an effort to live, to work, and to have enough money to eat,” Varilla-Aguilar said. “I found [strength] within myself, [when] there was nowhere else to find it.”\u003c/p>\n\u003cfigure id=\"attachment_11986485\" class=\"wp-caption alignnone\" style=\"max-width: 2000px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11986485\" src=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED.jpg\" alt=\"A middle-aged Latino man outside of his house, photographed from inside the house, with a car parked on the street outside his house.\" width=\"2000\" height=\"1322\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED.jpg 2000w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED-800x529.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED-1020x674.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED-160x106.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED-1536x1015.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2024/05/FEBMAY2024-LONGCOVID-ET-PU-34-KQED-1920x1269.jpg 1920w\" sizes=\"(max-width: 2000px) 100vw, 2000px\">\u003cfigcaption class=\"wp-caption-text\">Osbaldo Varilla-Aguilar, 46, steps outside of his sister’s home in San Francisco on April 25, 2024. \u003ccite>(Pablo Unzueta for El Tecolote/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003ca href=\"https://eltecolote.org/content/en/long-covid-latino-immigrant-worker/\">\u003cem>El Tecolote’s original version of the story can be found here.\u003c/em>\u003c/a>\u003c/p>\n\u003cp>\u003c/p>\n\u003c/div>\u003c/p>",
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"title": "For Many Long COVID Patients, Qualifying for Disability Is Half the Battle",
"headTitle": "For Many Long COVID Patients, Qualifying for Disability Is Half the Battle | KQED",
"content": "\u003cp>Chris Pham contracted COVID-19 at the onset of the pandemic, in March 2020, and just couldn’t kick it.\u003c/p>\n\u003cp>“I was two weeks in, and the first time that I realized something was really wrong was when I decided to take a run,” said the now-35-year-old, who had been living in the Bay Area in good health and was training for a triathlon. “I was feeling a little bit better. … But after mile 1, I can remember really thinking, ‘Wow, there’s something that’s totally wrong with my body.’ And I broke into a cold sweat and I just couldn’t run anymore.”\u003c/p>\n\u003cp>Pham said his doctors, who at that point still knew very little about the virus, struggled to explain and diagnose his condition, which is now clearly understood to be what’s known as long COVID. “My doctors didn’t have any data really to base a diagnosis off of,” he said. “So, yeah, I was given the runaround or not really believed. And that was a scary, scary thing in and of itself.”[aside postID=news_11950643 hero='https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65622_005_KQED_LongCOVIDCharlieMcCone_05182023-qut-1020x680.jpg']Pham said he generally learned how to manage his symptoms, but was often overwhelmed with paralyzing fatigue. He eventually tried to return to work full-time, as the head of sales of a Bay Area start-up, but found it nearly impossible to get through the day.\u003c/p>\n\u003cp>“I was passing out in the middle of the day after one or two meetings and it would cause and trigger my long COVID symptoms,” he said. “On calls, there was extreme fatigue and then this pain, like heavy sinking pain. Just like someone attached a 50-pound anchor to your face and let it drop to the bottom of the ocean.”\u003c/p>\n\u003cp>Pham had to take medical leave, and was ultimately laid off. But after his initial disability payments petered out, he struggled to secure the long-term disability benefits he needed to pay for basic living expenses and medical care.\u003c/p>\n\u003cp>Fast-forward more than three years: Pham still suffers from debilitating symptoms stemming from his initial infection — among the estimated millions of long COVID patients in the U.S. — and says applying for and receiving the payments has been a constant struggle.\u003c/p>\n\u003cp>“The process was extremely difficult to receive the funds, even though it was approved. The disability company would often come back and say, ‘It needs a review.’ And this happened every single month,” Pham said of his initial efforts to apply for long-term disability, noting that his insurance company often required him to do additional testing to prove his eligibility. “So I had no certainty on how to plan. I was basically chasing down my benefits the whole time.”\u003c/p>\n\u003cfigure id=\"attachment_11952470\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED.jpg\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11952470 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED.jpg\" alt=\"A young Asian man in a gray T-shirt rests on a brown leather couch with his eyes closed.\" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Chris Pham rests on the couch at his parents’ house in Arizona, where he now lives. \u003ccite>(Courtesy Chris Pham)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Pham’s insurance company eventually terminated his long-term benefits, and with no source of income, he was forced to move back in with his parents in Arizona.\u003c/p>\n\u003cp>“If I didn’t have the support of my family, I’d be out on the streets,” he said. “[Insurers] are willing to let all the folks with long COVID who are currently suffering go without the benefits that are rightly owed to them.”\u003c/p>\n\u003cp>His insurance company, Guardian, did not return KQED’s request for comment about his case.\u003c/p>\n\u003cp>A big part of the problem for patients: There’s no single definition of long COVID and no singular test to determine whether someone has it, making it easier for insurance companies to deny claims.[pullquote align=\"right\" size=\"medium\" citation=\"Chris Pham, long COVID patient\"]‘If I didn’t have the support of my family, I’d be out on the streets.’[/pullquote]“I would urge the CDC and the World Health Organization [to] encourage a clinical diagnosis of long COVID,” said David Putrino, a physical therapist at Mount Sinai Health System in New York, who has worked with thousands of long COVID patients over the last three years.\u003c/p>\n\u003cp>“[T]he payers and the people denying benefits to people with long COVID always say the same thing: ‘Oh, you don’t have enough evidence. We don’t have an objective test to prove that you’re sick,’” he said. “Please let us stop asking sick people to prove to us that they’re sick.”\u003c/p>\n\u003cp>Pham spent months fighting with Guardian to reinstate his long-term disability payments, and finally won his appeal in January.\u003c/p>\n\u003cp>Cassie Springer Ayeni, Pham’s attorney who helped wage his protracted legal challenge, says securing such benefits can be a lifesaver for people with long COVID.\u003c/p>\n\u003cfigure id=\"attachment_11952494\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1.jpg\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11952494 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1.jpg\" alt=\"A middle-aged white woman with glasses, wearing a business jacket, holds a large stack of papers. \" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Cassie Springer Ayeni, a disability attorney in San Leandro who works with many long COVID patients, shows a thick stack of her client’s disability claims, on June 5, 2023.\u003c/figcaption>\u003c/figure>\n\u003cp>“These benefits typically do last through age 67 for people who are affected by long COVID or any other disabling condition,” she said, noting that half of her new clients suffer from long COVID. “That’s why they’re so valuable — because this is potentially income for somebody who might not be able to ever return to the workforce.”\u003c/p>\n\u003cp>Springer Ayeni says such uncertainty leaves many people with long COVID in both a physical and financial bind.\u003c/p>\n\u003cp>“People take loans and people take loans from family. And because of the cost of living in the Bay Area, a lot of my clients wind up selling their house, moving somewhere else,” she said. “I’ve had two clients just in the last year have to give up living in the Bay Area because of their disabilities, because they can’t live off of an unreliable source of income.”\u003c/p>\n\u003cp>The true economic cost of long COVID in the United States likely won’t be fully realized for years, if ever, particularly because the U.S. has done a poor overall job of tracking the condition, said Katie Bach, senior fellow at the Brookings Institution.[pullquote align=\"right\" size=\"medium\" citation=\"Katie Bach, senior fellow, Brookings Institution\"]‘My best estimate is that we have millions of full-time-equivalent workers not working and out of the labor force due to long COVID.’[/pullquote]“My best estimate is that we have millions of full-time-equivalent workers not working and out of the labor force due to long COVID. So that’s somewhere between $100 billion and $230 billion a year in lost wages,” she said. “This is not the first post-viral illness that we have seen in the U.S. We’ve just never seen an outbreak of this scale.”\u003c/p>\n\u003cp>But from an insurer’s perspective, long COVID poses a number of major issues, says Linda Bergthold, a health policy consultant and researcher. She says one of the biggest issues is that there have been no diagnostic codes for long COVID. Those codes, which doctors have to denote when requesting coverage for their patients, are a key part of the claims process. And because there are so many symptoms associated with the condition — from fatigue to heart issues — some of the codes don’t necessarily cover the health problems that a long COVID patient might be experiencing.\u003c/p>\n\u003cp>Additionally, she said, insurance companies have a notorious history — one far predating COVID — of denying treatment claims they do not deem a “medical necessity.” That vague benchmark has proved particularly detrimental to long COVID patients seeking new treatments that have not yet been scientifically proven — and that insurance companies often consider unnecessary.\u003c/p>\n\u003cp>Although Chris Pham won his appeal for disability benefits, he says he still struggles on a day-to-day basis.\u003c/p>\n\u003cp>“I don’t have the ability to provide for myself,” he said. “I don’t [even] have the ability to do the dishes.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Chris Pham contracted COVID-19 at the onset of the pandemic, in March 2020, and just couldn’t kick it.\u003c/p>\n\u003cp>“I was two weeks in, and the first time that I realized something was really wrong was when I decided to take a run,” said the now-35-year-old, who had been living in the Bay Area in good health and was training for a triathlon. “I was feeling a little bit better. … But after mile 1, I can remember really thinking, ‘Wow, there’s something that’s totally wrong with my body.’ And I broke into a cold sweat and I just couldn’t run anymore.”\u003c/p>\n\u003cp>Pham said his doctors, who at that point still knew very little about the virus, struggled to explain and diagnose his condition, which is now clearly understood to be what’s known as long COVID. “My doctors didn’t have any data really to base a diagnosis off of,” he said. “So, yeah, I was given the runaround or not really believed. And that was a scary, scary thing in and of itself.”\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Pham said he generally learned how to manage his symptoms, but was often overwhelmed with paralyzing fatigue. He eventually tried to return to work full-time, as the head of sales of a Bay Area start-up, but found it nearly impossible to get through the day.\u003c/p>\n\u003cp>“I was passing out in the middle of the day after one or two meetings and it would cause and trigger my long COVID symptoms,” he said. “On calls, there was extreme fatigue and then this pain, like heavy sinking pain. Just like someone attached a 50-pound anchor to your face and let it drop to the bottom of the ocean.”\u003c/p>\n\u003cp>Pham had to take medical leave, and was ultimately laid off. But after his initial disability payments petered out, he struggled to secure the long-term disability benefits he needed to pay for basic living expenses and medical care.\u003c/p>\n\u003cp>Fast-forward more than three years: Pham still suffers from debilitating symptoms stemming from his initial infection — among the estimated millions of long COVID patients in the U.S. — and says applying for and receiving the payments has been a constant struggle.\u003c/p>\n\u003cp>“The process was extremely difficult to receive the funds, even though it was approved. The disability company would often come back and say, ‘It needs a review.’ And this happened every single month,” Pham said of his initial efforts to apply for long-term disability, noting that his insurance company often required him to do additional testing to prove his eligibility. “So I had no certainty on how to plan. I was basically chasing down my benefits the whole time.”\u003c/p>\n\u003cfigure id=\"attachment_11952470\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED.jpg\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11952470 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED.jpg\" alt=\"A young Asian man in a gray T-shirt rests on a brown leather couch with his eyes closed.\" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/060723-Chris-Pham-KQED-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Chris Pham rests on the couch at his parents’ house in Arizona, where he now lives. \u003ccite>(Courtesy Chris Pham)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Pham’s insurance company eventually terminated his long-term benefits, and with no source of income, he was forced to move back in with his parents in Arizona.\u003c/p>\n\u003cp>“If I didn’t have the support of my family, I’d be out on the streets,” he said. “[Insurers] are willing to let all the folks with long COVID who are currently suffering go without the benefits that are rightly owed to them.”\u003c/p>\n\u003cp>His insurance company, Guardian, did not return KQED’s request for comment about his case.\u003c/p>\n\u003cp>A big part of the problem for patients: There’s no single definition of long COVID and no singular test to determine whether someone has it, making it easier for insurance companies to deny claims.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>“I would urge the CDC and the World Health Organization [to] encourage a clinical diagnosis of long COVID,” said David Putrino, a physical therapist at Mount Sinai Health System in New York, who has worked with thousands of long COVID patients over the last three years.\u003c/p>\n\u003cp>“[T]he payers and the people denying benefits to people with long COVID always say the same thing: ‘Oh, you don’t have enough evidence. We don’t have an objective test to prove that you’re sick,’” he said. “Please let us stop asking sick people to prove to us that they’re sick.”\u003c/p>\n\u003cp>Pham spent months fighting with Guardian to reinstate his long-term disability payments, and finally won his appeal in January.\u003c/p>\n\u003cp>Cassie Springer Ayeni, Pham’s attorney who helped wage his protracted legal challenge, says securing such benefits can be a lifesaver for people with long COVID.\u003c/p>\n\u003cfigure id=\"attachment_11952494\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1.jpg\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11952494 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1.jpg\" alt=\"A middle-aged white woman with glasses, wearing a business jacket, holds a large stack of papers. \" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/06/RS66047_005_KQED_CassieSpringerAyeniLongCovid_06052023-qut-1-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Cassie Springer Ayeni, a disability attorney in San Leandro who works with many long COVID patients, shows a thick stack of her client’s disability claims, on June 5, 2023.\u003c/figcaption>\u003c/figure>\n\u003cp>“These benefits typically do last through age 67 for people who are affected by long COVID or any other disabling condition,” she said, noting that half of her new clients suffer from long COVID. “That’s why they’re so valuable — because this is potentially income for somebody who might not be able to ever return to the workforce.”\u003c/p>\n\u003cp>Springer Ayeni says such uncertainty leaves many people with long COVID in both a physical and financial bind.\u003c/p>\n\u003cp>“People take loans and people take loans from family. And because of the cost of living in the Bay Area, a lot of my clients wind up selling their house, moving somewhere else,” she said. “I’ve had two clients just in the last year have to give up living in the Bay Area because of their disabilities, because they can’t live off of an unreliable source of income.”\u003c/p>\n\u003cp>The true economic cost of long COVID in the United States likely won’t be fully realized for years, if ever, particularly because the U.S. has done a poor overall job of tracking the condition, said Katie Bach, senior fellow at the Brookings Institution.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>“My best estimate is that we have millions of full-time-equivalent workers not working and out of the labor force due to long COVID. So that’s somewhere between $100 billion and $230 billion a year in lost wages,” she said. “This is not the first post-viral illness that we have seen in the U.S. We’ve just never seen an outbreak of this scale.”\u003c/p>\n\u003cp>But from an insurer’s perspective, long COVID poses a number of major issues, says Linda Bergthold, a health policy consultant and researcher. She says one of the biggest issues is that there have been no diagnostic codes for long COVID. Those codes, which doctors have to denote when requesting coverage for their patients, are a key part of the claims process. And because there are so many symptoms associated with the condition — from fatigue to heart issues — some of the codes don’t necessarily cover the health problems that a long COVID patient might be experiencing.\u003c/p>\n\u003cp>Additionally, she said, insurance companies have a notorious history — one far predating COVID — of denying treatment claims they do not deem a “medical necessity.” That vague benchmark has proved particularly detrimental to long COVID patients seeking new treatments that have not yet been scientifically proven — and that insurance companies often consider unnecessary.\u003c/p>\n\u003cp>Although Chris Pham won his appeal for disability benefits, he says he still struggles on a day-to-day basis.\u003c/p>\n\u003cp>“I don’t have the ability to provide for myself,” he said. “I don’t [even] have the ability to do the dishes.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"title": "'Screaming Into a Void': Long COVID Patients Have Waited in Vain for Years for Treatments",
"headTitle": "‘Screaming Into a Void’: Long COVID Patients Have Waited in Vain for Years for Treatments | KQED",
"content": "\u003cp>After contracting COVID-19 at the onset of the pandemic more than three years ago, Charlie McCone is still very much hostage to the disease.\u003c/p>\n\u003cp>“I can shower myself and I can do that stuff, but that’s kind of about it,” said McCone, a previously healthy Bay Area man in his 30s. “If I have to make lunch, I’m laid out for a couple of hours. If I have to make dinner, it’s doomsday. I can’t stand up for longer than five minutes without all of my symptoms going haywire.”\u003c/p>\n\u003cp>McCone is among the millions of Americans with long COVID, a condition broadly defined as a collection of often-debilitating symptoms — everything from brain fog and fatigue to respiratory and heart problems — that can develop or intensify after an initial COVID infection.\u003c/p>\n\u003cp>“This isn’t a mild condition. This is completely life-altering,” said McCone, who notes that many other long COVID patients are in even worse shape than he is. “We have patients who are taking their lives. This is the fastest-growing health crisis in America.”\u003c/p>\n\u003cp>Amid the end of the federal health emergency earlier this month, as the vast majority of people in this country have ditched their masks and resumed their pre-pandemic lives, McCone and other long COVID patients say they feel largely left behind, and see no end to their suffering.\u003c/p>\n\u003cfigure id=\"attachment_11950655\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11950655 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut.jpg\" alt=\"A white man with curly light brown hair and eye glasses sits on a couch with feet up and looks at the camera with head turned to the side.\" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Long COVID patient Charlie McCone at his home in San Francisco on May 18, 2023. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“My biggest frustration right now isn’t in my symptoms,” McCone said. “It’s in the lack of action around doing things we know could help patients right now.”\u003c/p>\n\u003cp>McCone and other long COVID patients and advocates have for years pushed state and federal health agencies to begin trials for long COVID treatments, underscoring the urgency of the situation, but say their efforts have gained little traction.\u003c/p>\n\u003cp>“A lot of times it feels like the patient community is screaming into a void,” said Lisa McCorkell, an Oakland resident who has experienced long COVID symptoms for more than three years, and who now runs a group that advocates for patient-involved research on the condition. “It really feels like [we’re] not being heard a lot of the time.”[aside label=\"Related Stories\" postID=\"news_11948032,news_11946927\"]But the National Institutes of Health, which in 2020 received more than $1 billion to research long COVID, says it’s taking a cautious, big-picture approach.\u003c/p>\n\u003cp>“We are being a little more deliberate. Particularly to try and get something to have a high-effect size in patients and really make a big difference,” said Dr. Walter Koroshetz, co-chair of the NIH’s \u003ca href=\"https://recovercovid.org/\">RECOVER Initiative\u003c/a> (Researching COVID to Enhance Recovery). “[We want to] test therapies which we think might help reduce the symptom burden in people who are suffering.”\u003c/p>\n\u003cp>Koroshetz said he understands the frustration long COVID patients feel, but noted that even though it’s not a new condition, “how it happens in people is not well understood.”\u003c/p>\n\u003cp>Nevertheless, Koroshetz says he’s confident treatments to reduce debilitating symptoms will be available fairly soon.\u003c/p>\n\u003cp>“We’re also hoping to test drugs that go after the main culprit for the biological cause of long COVID,” he added.\u003c/p>\n\u003cp>But so far, the NIH has not started a clinical trial for possible treatments. One of the only official long COVID clinical trials is underway at Stanford University, to determine whether Paxlovid can be an effective treatment. But it isn’t even being led by the NIH, and results aren’t expected until late this year.[pullquote align=\"right\" size=\"medium\" citation=\"Charlie McCone, long COVID patient\"]‘My biggest frustration right now isn’t in my symptoms. It’s in the lack of action around doing things we know could help patients right now.’[/pullquote]Dr. Steven Deeks, an infectious disease specialist at UCSF who has extensively researched long COVID, argues that clinical trials for possible treatments should have started months ago.\u003c/p>\n\u003cp>“Based on the fact there’s anecdotes of people getting better with antiviral therapy, yes, it’s an absolute urgency right now to study, in a controlled manner, all of the antiviral therapies that we have available,” he said.\u003c/p>\n\u003cp>Part of the problem, Deeks argues, is the lack of buy-in from pharmaceutical companies, in stark contrast to their involvement in developing an initial COVID vaccine.\u003c/p>\n\u003cp>“The drug companies realize there’s this great unmet need. They realize there’s this market for a drug and there’s money to be made,” he said. “But right now I think they’re waiting on the sidelines for academic groups to get better clarity.”\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe loading=\"lazy\" frameborder=\"0\" height=\"200\" scrolling=\"no\" src=\"https://playlist.megaphone.fm/?e=KQINC3817112873&light=true\" width=\"100%\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>Hundreds of symptoms have been linked to long COVID, and there is little data tracking how many people actually have it, all of which has made it difficult to clearly define the condition and expedite efforts to treat it, notes David Putrino, a physical therapist at Mount Sinai Health System in New York who has worked with scores of long COVID patients.\u003c/p>\n\u003cp>“Long COVID really is anyone who has contracted an acute COVID infection and at the three-month point is still feeling unwell and worse than they did before their acute COVID infection,” he said.\u003c/p>\n\u003cp>Nevertheless, the apparent lack of urgency from government health agencies is troublesome, says Dr. Monica Verduzco-Gutierrez, chair of rehabilitation medicine at the University of Texas Health Science Center at San Antonio, who runs a long COVID clinic.\u003c/p>\n\u003cfigure id=\"attachment_11950658\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-full wp-image-11950658\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut.jpg\" alt=\"A white man with light brown curly hair and eyeglasses has a steam inhaler in his mouth as he laws reclines against a sofa in his living room.\" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Long COVID patient Charlie McCone uses a steam inhaler at his home in San Francisco on May 18, 2023. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“Part of me is like, ‘OK, they put a lot of effort in vaccines and treatments at the front lines and, yes, that’s wonderful. 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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>After contracting COVID-19 at the onset of the pandemic more than three years ago, Charlie McCone is still very much hostage to the disease.\u003c/p>\n\u003cp>“I can shower myself and I can do that stuff, but that’s kind of about it,” said McCone, a previously healthy Bay Area man in his 30s. “If I have to make lunch, I’m laid out for a couple of hours. If I have to make dinner, it’s doomsday. I can’t stand up for longer than five minutes without all of my symptoms going haywire.”\u003c/p>\n\u003cp>McCone is among the millions of Americans with long COVID, a condition broadly defined as a collection of often-debilitating symptoms — everything from brain fog and fatigue to respiratory and heart problems — that can develop or intensify after an initial COVID infection.\u003c/p>\n\u003cp>“This isn’t a mild condition. This is completely life-altering,” said McCone, who notes that many other long COVID patients are in even worse shape than he is. “We have patients who are taking their lives. This is the fastest-growing health crisis in America.”\u003c/p>\n\u003cp>Amid the end of the federal health emergency earlier this month, as the vast majority of people in this country have ditched their masks and resumed their pre-pandemic lives, McCone and other long COVID patients say they feel largely left behind, and see no end to their suffering.\u003c/p>\n\u003cfigure id=\"attachment_11950655\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"wp-image-11950655 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut.jpg\" alt=\"A white man with curly light brown hair and eye glasses sits on a couch with feet up and looks at the camera with head turned to the side.\" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65641_023_KQED_LongCOVIDCharlieMcCone_05182023-qut-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Long COVID patient Charlie McCone at his home in San Francisco on May 18, 2023. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“My biggest frustration right now isn’t in my symptoms,” McCone said. “It’s in the lack of action around doing things we know could help patients right now.”\u003c/p>\n\u003cp>McCone and other long COVID patients and advocates have for years pushed state and federal health agencies to begin trials for long COVID treatments, underscoring the urgency of the situation, but say their efforts have gained little traction.\u003c/p>\n\u003cp>“A lot of times it feels like the patient community is screaming into a void,” said Lisa McCorkell, an Oakland resident who has experienced long COVID symptoms for more than three years, and who now runs a group that advocates for patient-involved research on the condition. “It really feels like [we’re] not being heard a lot of the time.”\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>But the National Institutes of Health, which in 2020 received more than $1 billion to research long COVID, says it’s taking a cautious, big-picture approach.\u003c/p>\n\u003cp>“We are being a little more deliberate. Particularly to try and get something to have a high-effect size in patients and really make a big difference,” said Dr. Walter Koroshetz, co-chair of the NIH’s \u003ca href=\"https://recovercovid.org/\">RECOVER Initiative\u003c/a> (Researching COVID to Enhance Recovery). “[We want to] test therapies which we think might help reduce the symptom burden in people who are suffering.”\u003c/p>\n\u003cp>Koroshetz said he understands the frustration long COVID patients feel, but noted that even though it’s not a new condition, “how it happens in people is not well understood.”\u003c/p>\n\u003cp>Nevertheless, Koroshetz says he’s confident treatments to reduce debilitating symptoms will be available fairly soon.\u003c/p>\n\u003cp>“We’re also hoping to test drugs that go after the main culprit for the biological cause of long COVID,” he added.\u003c/p>\n\u003cp>But so far, the NIH has not started a clinical trial for possible treatments. One of the only official long COVID clinical trials is underway at Stanford University, to determine whether Paxlovid can be an effective treatment. But it isn’t even being led by the NIH, and results aren’t expected until late this year.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Dr. Steven Deeks, an infectious disease specialist at UCSF who has extensively researched long COVID, argues that clinical trials for possible treatments should have started months ago.\u003c/p>\n\u003cp>“Based on the fact there’s anecdotes of people getting better with antiviral therapy, yes, it’s an absolute urgency right now to study, in a controlled manner, all of the antiviral therapies that we have available,” he said.\u003c/p>\n\u003cp>Part of the problem, Deeks argues, is the lack of buy-in from pharmaceutical companies, in stark contrast to their involvement in developing an initial COVID vaccine.\u003c/p>\n\u003cp>“The drug companies realize there’s this great unmet need. They realize there’s this market for a drug and there’s money to be made,” he said. “But right now I think they’re waiting on the sidelines for academic groups to get better clarity.”\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe loading=\"lazy\" frameborder=\"0\" height=\"200\" scrolling=\"no\" src=\"https://playlist.megaphone.fm/?e=KQINC3817112873&light=true\" width=\"100%\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>Hundreds of symptoms have been linked to long COVID, and there is little data tracking how many people actually have it, all of which has made it difficult to clearly define the condition and expedite efforts to treat it, notes David Putrino, a physical therapist at Mount Sinai Health System in New York who has worked with scores of long COVID patients.\u003c/p>\n\u003cp>“Long COVID really is anyone who has contracted an acute COVID infection and at the three-month point is still feeling unwell and worse than they did before their acute COVID infection,” he said.\u003c/p>\n\u003cp>Nevertheless, the apparent lack of urgency from government health agencies is troublesome, says Dr. Monica Verduzco-Gutierrez, chair of rehabilitation medicine at the University of Texas Health Science Center at San Antonio, who runs a long COVID clinic.\u003c/p>\n\u003cfigure id=\"attachment_11950658\" class=\"wp-caption alignnone\" style=\"max-width: 1920px\">\u003cimg decoding=\"async\" loading=\"lazy\" class=\"size-full wp-image-11950658\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut.jpg\" alt=\"A white man with light brown curly hair and eyeglasses has a steam inhaler in his mouth as he laws reclines against a sofa in his living room.\" width=\"1920\" height=\"1280\" srcset=\"https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut-1020x680.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/10/2023/05/RS65628_011_KQED_LongCOVIDCharlieMcCone_05182023-qut-1536x1024.jpg 1536w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Long COVID patient Charlie McCone uses a steam inhaler at his home in San Francisco on May 18, 2023. \u003ccite>(Beth LaBerge/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“Part of me is like, ‘OK, they put a lot of effort in vaccines and treatments at the front lines and, yes, that’s wonderful. People aren’t dying,’” she said. “But there are now millions of people with long COVID who are suffering tremendously. I’m seeing these patients and they want some treatments now to help them. And so it’s frustrating to not be able to say, ‘OK, let’s try this right away,’ or, ‘Oh, this has been proven.’ We don’t have that, and the patients need it.”\u003c/p>\n\u003cp>Lisa McCorkell, of Oakland, couldn’t agree more.\u003c/p>\n\u003cp>“There’s definitely enough that we know about long COVID for us to be ready for clinical trials,” she said. “And given the scale of the issue, we’re at the point to see if any of those work in resolving long COVID completely or at least managing symptoms.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"slug": "long-covid-in-california-a-pandemic-of-loneliness-and-social-isolation-and-rejection",
"title": "Long COVID in California: 'A Pandemic of Loneliness and Social Isolation and Rejection'",
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"headTitle": "Long COVID in California: ‘A Pandemic of Loneliness and Social Isolation and Rejection’ | KQED",
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"content": "\u003cp>A bout with COVID-19 two years ago left Mindy Lym with such severe sensitivities to light and sound that she and her partner left their San Francisco home and moved to rural Washington, where there were fewer triggers. In the past two months, she has paid more than $7,500 out-of-pocket for medical care. Although she can afford it, she knows few people can do the same.\u003c/p>\n\u003cp>Stephen Mintz gets just $60 per week from state disability insurance, which he began receiving after the chronic fatigue from COVID-19 prevented him from holding a steady job. He spent all of his savings and borrowed money from family. Without more relief payments from the state, he doesn’t know how he’ll pay his bills.[pullquote align=\"right\" size=\"medium\" citation=\"Lisa McCorkell, co-founder, Patient-Led Research Collective\"]‘One of the big issues with long COVID … is that the people who are the most motivated to do something about it have the least amount of energy and ability to cause a scene.’[/pullquote]COVID-19 sent Janine Loftis to the hospital in 2020. She relies on a caretaker after lingering symptoms like brain fog, pain and fatigue have kept her from cooking or cleaning. But when Loftis’ caretaker took a monthlong leave of absence, shortages ravaging the health care workforce made it impossible to find a replacement.\u003c/p>\n\u003cp>These are three out of countless stories of \u003ca href=\"https://calmatters.org/health/coronavirus/2022/03/long-covid-inequities-california/\">Californians afflicted by long COVID\u003c/a>. Recent CDC surveys suggest \u003ca href=\"https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm\">5.5% of California adults — roughly 1.5 million people — currently experience the ill-defined, mysterious and often debilitating collection of symptoms that make up long COVID\u003c/a>. More than 80% of them have some limits on their activity.\u003c/p>\n\u003cp>While most of society rushes eagerly back to pre-pandemic life, these patients, known as “long haulers,” have been largely overlooked, particularly by policymakers and the medical establishment.\u003c/p>\n\u003cp>“It’s a pandemic of loneliness and social isolation and rejection,” said Ibrahim Rashid, a long hauler and founder of \u003ca href=\"https://www.thestronghaulers.com/\">Strong Haulers\u003c/a>, a start-up app designed to make chronic symptom management easier.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>California long haulers can face years-long wait times to get into specialized clinics. Oftentimes they have to fight for disability payments or to be taken seriously by doctors. And state lawmakers, despite holding hearings on the issue last year, have not introduced any proposals this session to assist them.\u003c/p>\n\u003cp>A \u003ca href=\"https://www.meaction.net/wp-content/uploads/2022/04/Budget-Request_Long-COVID-ASM-Quirk.pdf\">budget proposal to increase long COVID clinic capacity at University of California health centers failed (PDF)\u003c/a> last year, and it’s unlikely anything new will make it off the ground now, given the state’s likely budget deficit.\u003c/p>\n\u003cp>Former state Sen. Dr. Richard Pan, the Sacramento Democrat who co-chaired a special hearing on long COVID last year, told CalMatters in February, ahead of the deadline to introduce new bills, that he hoped “people are paying attention to this” because long COVID will put new stressors on the state’s health care, mental health and disability systems.\u003c/p>\n\u003cp>The state Senate Special Committee on Pandemic Emergency Response was not reinstated this year. A spokesperson for Sen. Josh Newman, a Democrat from Fullerton who chaired the committee last session, said there hasn’t been any conversation about long COVID this year.\u003c/p>\n\u003ch2>Patients at the forefront\u003c/h2>\n\u003cp>Instead, the policy legwork has fallen on two people: Lisa McCorkell, co-founder of the Patient-Led Research Collective who has had long COVID since March 2020, and Art Mirin, whose daughter has a \u003ca href=\"https://www.mdpi.com/1648-9144/57/5/418/htm?s=09\">similar post-viral condition\u003c/a> called \u003ca href=\"https://www.cdc.gov/me-cfs/about/index.html\">myalgic encephalomyelitis/chronic fatigue syndrome\u003c/a>. Together, McCorkell and Mirin have drafted budget proposals, solicited letters of support from disability advocacy groups, and met with legislators and staffers. They’re doing the work that political power players pay lobbyists millions of dollars to organize — so far to no avail.\u003c/p>\n\u003cp>“One of the big issues with long COVID … is that the people who are the most motivated to do something about it have the least amount of energy and ability to cause a scene,” McCorkell said.\u003c/p>\n\u003cp>Despite struggling with \u003ca href=\"https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots\">postural orthostatic tachycardia syndrome\u003c/a>, a blood circulation disorder that can cause fatigue and brain fog, as well as other disabling symptoms, McCorkell has \u003ca href=\"https://docs.house.gov/meetings/IF/IF14/20210428/112514/HHRG-117-IF14-Wstate-McCorkellL-20210428.pdf\">testified before Congress on long COVID\u003c/a>, \u003ca href=\"https://patientresearchcovid19.com/publication/\">conducted research\u003c/a> and pushed for California to do more for the population.[aside label=\"related coverage\" tag=\"long-covid\"]She and Mirin wrote last year’s budget proposal for the state to fund research, training and treatment centers at UC medical campuses and other academic centers. Mirin said it has been challenging to find a champion for this issue.\u003c/p>\n\u003cp>“People will say they support one thing or another, but when it comes down to an official public request, other things have a way of coming into play,” Mirin said.\u003c/p>\n\u003cp>Although five UC medical campuses have long COVID clinics, demand far exceeds capacity, said Dr. Anne Foster, chief clinical strategy officer for UC Health Systems.\u003c/p>\n\u003cp>“There are just a lot of patients out there,” she said, noting that UC Health supports McCorkell and Mirin’s proposal, but new state funding isn’t available for it.\u003c/p>\n\u003cp>Officials with the California Department of Public Health plan to create a new COVID-19 Control Branch to monitor variants and outbreaks and support long COVID research, said State Epidemiologist Dr. Erica Pan. The department is using some money from last year as well as seed money from \u003ca href=\"https://calmatters.org/health/coronavirus/2022/02/california-covid-plans/\">the state’s $1.8 billion long-term COVID-19 preparedness plan\u003c/a> to open the branch. However, \u003ca href=\"https://calmatters.org/california-budget/2023/01/california-budget-newsom-deficit/\">proposed budget cuts\u003c/a> make ongoing funding uncertain.\u003c/p>\n\u003cp>“We are looking at that and trying to advocate for ongoing resources,” Pan said.\u003c/p>\n\u003cp>Without additional money from the state, Foster said UC Health has pivoted to developing a \u003ca href=\"https://health.universityofcalifornia.edu/long-covid-education\">free continuing education training program for doctors on best practices to treat long COVID patients\u003c/a>.\u003c/p>\n\u003cp>McCorkell and Mirin say the training modules aren’t perfect, but they’re an important resource for primary care doctors, especially considering most people in the state live too far from a specialized clinic to get help.\u003c/p>\n\u003ch2>Many doctors haven’t heard of long COVID\u003c/h2>\n\u003cp>Stephen Mintz of Fresno is one such patient.\u003c/p>\n\u003cp>Mintz avoided COVID-19 for more than two years, but in August he went to a bar to celebrate his 59th birthday, and tested positive for the virus shortly thereafter. By September, Mintz found he didn’t have the physical or mental stamina to do much of anything. After two-and-a-half hours of activity, his limbs would get heavy and his thoughts would muddle.\u003c/p>\n\u003cp>“You could almost set a clock to it,” Mintz said. “Suddenly it would be very difficult to put one foot in front of the other.”\u003c/p>\n\u003cfigure id=\"attachment_11948034\" class=\"wp-caption alignnone\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01.jpeg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11948034\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01.jpeg\" alt=\"A middle-aged white man with glasses sits on a couch in a dark, shade-drawn room.\" width=\"1568\" height=\"1045\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01.jpeg 1568w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01-800x533.jpeg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01-1020x680.jpeg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01-160x107.jpeg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01-1536x1024.jpeg 1536w\" sizes=\"auto, (max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Stephen Mintz sits at the side of his bed in his apartment in Fresno on March 3, 2023. Mintz was diagnosed with COVID-19 in September and has had chronic fatigue since then. \u003ccite>(Larry Valenzuela, CalMatters/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In January, Mintz was stacking chairs at a local bar where he works as a security guard. Within 10 minutes he got dizzy and couldn’t lift his arms anymore. It’s a common condition associated with long COVID called \u003ca href=\"https://www.jospt.org/doi/10.2519/jospt.2021.0106\">post-exertional malaise\u003c/a> — pushing through the fatigue can worsen symptoms.\u003c/p>\n\u003cp>“I actually cried then. I’ve been depressed over this and frustrated,” Mintz said. “I couldn’t believe I’m so weak.”\u003c/p>\n\u003cp>Mintz went to his primary care doctor in Fresno for help. He said he thought he had long COVID and was met with skepticism.\u003c/p>\n\u003cp>“His first reaction was that he hadn’t really heard of it,” Mintz said.\u003c/p>\n\u003cp>On his disability paperwork, Mintz said the doctor wrote “general malaise and short-term amnesia” because he didn’t know how to diagnose Mintz and told him to call UCSF, nearly 200 miles away, for advice.\u003c/p>\n\u003cp>“The doctor there said, ‘Um, well, if you lived here you could be part of a research study,’” Mintz said.\u003c/p>\n\u003cp>It’s a common experience among people with long COVID-19. Though the pandemic has thrust \u003ca href=\"https://time.com/6240058/post-viral-illnesses-common-long-covid/\">post-viral illnesses\u003c/a> into the spotlight, most doctors still don’t have the experience to treat the collection of \u003ca href=\"https://www.nature.com/articles/s41579-022-00846-2\">more than 200 symptoms\u003c/a> that make up long COVID.\u003c/p>\n\u003cp>Each new variant of COVID-19 also changes \u003ca href=\"https://www.sciencedirect.com/science/article/pii/S1871402121001193\">which symptoms are most common\u003c/a>, making it doubly difficult for the average primary care doctor to diagnose, said Dr. Nisha Viswanathan, a primary care physician at UCLA Health’s long COVID clinic. The “vague nature” of many symptoms like fatigue and insomnia also lead to misdiagnosis and frustration among patients.\u003c/p>\n\u003cp>“It’s really challenging,” Viswanathan said. “If you’re not seeing a certain volume of long COVID patients, it can be difficult to recognize when a patient may be having it versus not.”\u003c/p>\n\u003ch2>‘I knew it had gotten into my brain’\u003c/h2>\n\u003cp>COVID-19 first hit Mindy Lym, a 37-year-old from San Francisco, like a mild flu, causing fever and congestion. But on Day 5 of her illness, she looked at a text from her girlfriend who was isolating in a separate room and couldn’t make sense of the words. It looked like gibberish.\u003c/p>\n\u003cp>“That really scared the shit out of me,” Lym said. “I knew it had gotten into my brain.”\u003c/p>\n\u003cp>She has spent every day since then chasing after an elusive recovery. Like McCorkell, Lym developed \u003ca href=\"https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots\">postural orthostatic tachycardia syndrome\u003c/a> and wears compression garments like stockings and a corset to improve blood circulation. She also has \u003ca href=\"https://www.aaaai.org/conditions-treatments/related-conditions/mcas\">mast cell activation syndrome\u003c/a>, which causes an immune response similar to a severe allergic reaction as well as chronic inflammation.\u003c/p>\n\u003cp>For three months, Lym, who formerly worked as a music teacher and theater performer in San Francisco, could barely walk and needed a full-time caretaker to dress and bathe. Even soft noises and dim lights caused her to feel “unbearable pain.” When construction outside her house led to weeks of jackhammering, Lym developed PTSD.\u003c/p>\n\u003cp>“We moved because of my long COVID,” Lym said. “Being in a city with city noises … was completely untenable.”\u003c/p>\n\u003cfigure id=\"attachment_11948036\" class=\"wp-caption alignnone\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18.jpeg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11948036 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18.jpeg\" alt=\"A woman with long dark hair and glasses sits on a couch, looking out the window. \" width=\"1568\" height=\"1045\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18.jpeg 1568w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18-800x533.jpeg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18-1020x680.jpeg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18-160x107.jpeg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18-1536x1024.jpeg 1536w\" sizes=\"auto, (max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Mindy Lym has been living with long COVID since the summer of 2022. \u003ccite>(Celeste Noche/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In September 2022, before moving out of state to rural Washington, Lym called the Post-Acute COVID-19 Syndrome clinic at Stanford Health Care. The clinic scheduled an appointment for her for October 2023.\u003c/p>\n\u003cp>“The demand has been extremely high,” said Dr. Linda Geng, co-director of Stanford’s long COVID clinic. The clinic sees about 12 to 15 new patients each week and has an eight-month average wait time.\u003c/p>\n\u003cp>Yet even as patients like Mintz and Lym struggle to get into a specialized clinic, UCLA physician Viswanathan said she has heard from multiple colleagues at other facilities that are considering closing their long COVID care clinics or reducing hours. Health systems are strapped for cash and facing a dire workforce shortage, said Dr. Anil Keswani, chief medical officer at Scripps Health in San Diego.\u003c/p>\n\u003cp>“We have increased supply costs. We have increased pharmacy costs. We have increased labor costs,” Keswani said. “How do health care systems invest in programs like long COVID clinics, like hiring more clinicians? Health care organizations have been battered over the last few years, but I don’t see any government relief.”\u003c/p>\n\u003cfigure id=\"attachment_11948037\" class=\"wp-caption alignnone\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25.jpeg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11948037\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25.jpeg\" alt=\"Lots of medications in bottles on a table.\" width=\"1568\" height=\"1045\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25.jpeg 1568w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25-800x533.jpeg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25-1020x680.jpeg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25-160x107.jpeg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25-1536x1024.jpeg 1536w\" sizes=\"auto, (max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Some of the many medications and supplements Mindy Lym takes for her long COVID symptoms. \u003ccite>(Celeste Noche/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch2>Janine’s story\u003c/h2>\n\u003cp>A patient navigator could help someone like Janine Loftis, who has fought for nearly 2 1/2 years to be seen by a long COVID specialist.\u003c/p>\n\u003cp>The Elk Grove resident turned 73 in January, but physically, she feels much older. In November 2020, after laying in “the house for two weeks not knowing what to do,” Loftis called an ambulance. It was the middle of the night, she had COVID, and her oxygen level dropped. Family and caretakers couldn’t check on her for fear of infection. By the time Loftis was admitted to the hospital, she had viral and bacterial pneumonia and blood clots forming deep in her veins.\u003c/p>\n\u003cp>Loftis was already disabled from previous spinal injuries, but the persistent aftereffects of COVID-19 have floored her.\u003c/p>\n\u003cp>“It’s embarrassing how little I can do on my own,” Loftis said. “My body gives out on me. Things are just lost to my mind.”\u003c/p>\n\u003cfigure id=\"attachment_11948038\" class=\"wp-caption alignnone\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01.jpeg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11948038 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01.jpeg\" alt=\"An older white woman with neat, white, shoulder-length hair wearing a purple floral long-sleeved blouse poses outside her house.\" width=\"1568\" height=\"1045\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01.jpeg 1568w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01-800x533.jpeg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01-1020x680.jpeg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01-160x107.jpeg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01-1536x1024.jpeg 1536w\" sizes=\"auto, (max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Janine Loftis, 73, at her home in Elk Grove on April 26, 2023. Loftis has long COVID, including lingering symptoms from the original infection such as brain fog and chronic fatigue. \u003ccite>(Rahul Lal/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The chronic fatigue and brain fog prevent her from going to in-person church services, and she recently gave her dog of nine years to an adoption agency after caring for her got too hard. When Loftis’ home caregiver took a leave of absence for four weeks, she couldn’t find a replacement, due to \u003ca href=\"https://laist.com/news/health/millions-of-californians-need-home-care-industry-in-crisis-ucla-labor-center-report\">long-standing workforce shortages that intensified during the pandemic\u003c/a>. Without anyone to help her, Loftis “struggled really horribly” to manage daily tasks, she said.\u003c/p>\n\u003cp>Juggling doctors’ appointments and navigating the byzantine health insurance system is an added obstacle for Loftis.\u003c/p>\n\u003cp>“My head is spinning just trying to talk about it again,” she said. “I don’t know how lay people, especially disabled ones with a lot of distractions like pain or like me, with brain fog … understand it.”[pullquote align=\"right\" size=\"medium\" citation=\"Mindy Lym\"]‘I feel like I have my personality back. My fatigue is no longer limiting how I express myself … which is amazing.’[/pullquote]Two months ago, Loftis finally convinced her primary care doctor to refer her to the UC Davis long COVID clinic, but she said her paperwork is now “lost in a pile of things that need authorization.”\u003c/p>\n\u003cp>“It takes everything just to keep up with anything,” Loftis said. “When things get ignored or I don’t know the process, I just have to wait for it to play out. I’m the middle man. I can’t do anything.”\u003c/p>\n\u003cp>No one from UC Davis Health’s long COVID clinic responded to a request for an interview. When asked about clinic capacity, the media relations division said that its post-COVID clinic has the ability to treat “an infinite number of patients.”\u003c/p>\n\u003ch2>Hope … with some caveats\u003c/h2>\n\u003cp>There is a decent chance of at least a partial recovery from long COVID within a year. Anecdotally, long COVID specialists interviewed by CalMatters said even if patients don’t make a full recovery, most see significant improvement over time.\u003c/p>\n\u003cp>“You look a year or 18 months out and the majority of people have had improvement if not complete resolution,” said Dr. Caitlin McAuley, a primary care physician at the USC Keck COVID Recovery Clinic.\u003c/p>\n\u003cp>A large study out of Israel found that \u003ca href=\"https://www.bmj.com/content/380/bmj-2022-072529\">among patients with mild COVID-19 infections, most symptoms resolved within one year\u003c/a>.\u003c/p>\n\u003cp>Other studies, however, paint \u003ca href=\"https://www.nature.com/articles/s41467-022-33415-5\">a less rosy picture\u003c/a>, with \u003ca href=\"https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(22)00127-8/fulltext\">few patients reporting full recovery\u003c/a>. One study on French patients found \u003ca href=\"https://www.nature.com/articles/s41467-022-29513-z\">85% still reported long COVID symptoms\u003c/a> a year after onset.\u003c/p>\n\u003cp>On the plus side, Mintz, who has had long COVID for eight months, has slowly regained his energy over time. He can go five or six hours without crashing, compared to two hours in January.\u003c/p>\n\u003cp>And Lym, who has had long COVID for nine months, has also seen a marked improvement. In February, she enrolled in a private long COVID research and treatment clinic. Together with her doctor, Lym discovered certain foods exacerbated her most severe symptoms. Now, she has an 18-page list of foods she can’t eat and takes a medley of antihistamines, blood thinners and supplements daily. Though Lym is still disabled, her sensory issues are 95% better and her energy has steadily improved, she said.\u003c/p>\n\u003cp>“I feel like I have my personality back. My fatigue is no longer limiting how I express myself … which is amazing,” Lym said.\u003c/p>\n\u003cp>But Lym’s clinic isn’t covered by insurance, and costs $1,000 per month, plus the cost of any tests the doctor orders.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“It’s not accessible,” Lym said. “I know there are so many people going through what I’m going through but don’t have the resources.”\u003c/p>\n\n",
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"excerpt": "There are currently no legislative proposals in California to help residents suffering from the debilitating effects of long COVID, despite long wait times for care and often unaffordable treatment options.",
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"title": "Long COVID in California: 'A Pandemic of Loneliness and Social Isolation and Rejection' | KQED",
"description": "There are currently no legislative proposals in California to help residents suffering from the debilitating effects of long COVID, despite long wait times for care and often unaffordable treatment options.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>A bout with COVID-19 two years ago left Mindy Lym with such severe sensitivities to light and sound that she and her partner left their San Francisco home and moved to rural Washington, where there were fewer triggers. In the past two months, she has paid more than $7,500 out-of-pocket for medical care. Although she can afford it, she knows few people can do the same.\u003c/p>\n\u003cp>Stephen Mintz gets just $60 per week from state disability insurance, which he began receiving after the chronic fatigue from COVID-19 prevented him from holding a steady job. He spent all of his savings and borrowed money from family. Without more relief payments from the state, he doesn’t know how he’ll pay his bills.\u003c/p>\u003c/div>",
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"content": "‘One of the big issues with long COVID … is that the people who are the most motivated to do something about it have the least amount of energy and ability to cause a scene.’",
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"content": "\u003cdiv class=\"post-body\">\u003cp>COVID-19 sent Janine Loftis to the hospital in 2020. She relies on a caretaker after lingering symptoms like brain fog, pain and fatigue have kept her from cooking or cleaning. But when Loftis’ caretaker took a monthlong leave of absence, shortages ravaging the health care workforce made it impossible to find a replacement.\u003c/p>\n\u003cp>These are three out of countless stories of \u003ca href=\"https://calmatters.org/health/coronavirus/2022/03/long-covid-inequities-california/\">Californians afflicted by long COVID\u003c/a>. Recent CDC surveys suggest \u003ca href=\"https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm\">5.5% of California adults — roughly 1.5 million people — currently experience the ill-defined, mysterious and often debilitating collection of symptoms that make up long COVID\u003c/a>. More than 80% of them have some limits on their activity.\u003c/p>\n\u003cp>While most of society rushes eagerly back to pre-pandemic life, these patients, known as “long haulers,” have been largely overlooked, particularly by policymakers and the medical establishment.\u003c/p>\n\u003cp>“It’s a pandemic of loneliness and social isolation and rejection,” said Ibrahim Rashid, a long hauler and founder of \u003ca href=\"https://www.thestronghaulers.com/\">Strong Haulers\u003c/a>, a start-up app designed to make chronic symptom management easier.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>California long haulers can face years-long wait times to get into specialized clinics. Oftentimes they have to fight for disability payments or to be taken seriously by doctors. And state lawmakers, despite holding hearings on the issue last year, have not introduced any proposals this session to assist them.\u003c/p>\n\u003cp>A \u003ca href=\"https://www.meaction.net/wp-content/uploads/2022/04/Budget-Request_Long-COVID-ASM-Quirk.pdf\">budget proposal to increase long COVID clinic capacity at University of California health centers failed (PDF)\u003c/a> last year, and it’s unlikely anything new will make it off the ground now, given the state’s likely budget deficit.\u003c/p>\n\u003cp>Former state Sen. Dr. Richard Pan, the Sacramento Democrat who co-chaired a special hearing on long COVID last year, told CalMatters in February, ahead of the deadline to introduce new bills, that he hoped “people are paying attention to this” because long COVID will put new stressors on the state’s health care, mental health and disability systems.\u003c/p>\n\u003cp>The state Senate Special Committee on Pandemic Emergency Response was not reinstated this year. A spokesperson for Sen. Josh Newman, a Democrat from Fullerton who chaired the committee last session, said there hasn’t been any conversation about long COVID this year.\u003c/p>\n\u003ch2>Patients at the forefront\u003c/h2>\n\u003cp>Instead, the policy legwork has fallen on two people: Lisa McCorkell, co-founder of the Patient-Led Research Collective who has had long COVID since March 2020, and Art Mirin, whose daughter has a \u003ca href=\"https://www.mdpi.com/1648-9144/57/5/418/htm?s=09\">similar post-viral condition\u003c/a> called \u003ca href=\"https://www.cdc.gov/me-cfs/about/index.html\">myalgic encephalomyelitis/chronic fatigue syndrome\u003c/a>. Together, McCorkell and Mirin have drafted budget proposals, solicited letters of support from disability advocacy groups, and met with legislators and staffers. They’re doing the work that political power players pay lobbyists millions of dollars to organize — so far to no avail.\u003c/p>\n\u003cp>“One of the big issues with long COVID … is that the people who are the most motivated to do something about it have the least amount of energy and ability to cause a scene,” McCorkell said.\u003c/p>\n\u003cp>Despite struggling with \u003ca href=\"https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots\">postural orthostatic tachycardia syndrome\u003c/a>, a blood circulation disorder that can cause fatigue and brain fog, as well as other disabling symptoms, McCorkell has \u003ca href=\"https://docs.house.gov/meetings/IF/IF14/20210428/112514/HHRG-117-IF14-Wstate-McCorkellL-20210428.pdf\">testified before Congress on long COVID\u003c/a>, \u003ca href=\"https://patientresearchcovid19.com/publication/\">conducted research\u003c/a> and pushed for California to do more for the population.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>She and Mirin wrote last year’s budget proposal for the state to fund research, training and treatment centers at UC medical campuses and other academic centers. Mirin said it has been challenging to find a champion for this issue.\u003c/p>\n\u003cp>“People will say they support one thing or another, but when it comes down to an official public request, other things have a way of coming into play,” Mirin said.\u003c/p>\n\u003cp>Although five UC medical campuses have long COVID clinics, demand far exceeds capacity, said Dr. Anne Foster, chief clinical strategy officer for UC Health Systems.\u003c/p>\n\u003cp>“There are just a lot of patients out there,” she said, noting that UC Health supports McCorkell and Mirin’s proposal, but new state funding isn’t available for it.\u003c/p>\n\u003cp>Officials with the California Department of Public Health plan to create a new COVID-19 Control Branch to monitor variants and outbreaks and support long COVID research, said State Epidemiologist Dr. Erica Pan. The department is using some money from last year as well as seed money from \u003ca href=\"https://calmatters.org/health/coronavirus/2022/02/california-covid-plans/\">the state’s $1.8 billion long-term COVID-19 preparedness plan\u003c/a> to open the branch. However, \u003ca href=\"https://calmatters.org/california-budget/2023/01/california-budget-newsom-deficit/\">proposed budget cuts\u003c/a> make ongoing funding uncertain.\u003c/p>\n\u003cp>“We are looking at that and trying to advocate for ongoing resources,” Pan said.\u003c/p>\n\u003cp>Without additional money from the state, Foster said UC Health has pivoted to developing a \u003ca href=\"https://health.universityofcalifornia.edu/long-covid-education\">free continuing education training program for doctors on best practices to treat long COVID patients\u003c/a>.\u003c/p>\n\u003cp>McCorkell and Mirin say the training modules aren’t perfect, but they’re an important resource for primary care doctors, especially considering most people in the state live too far from a specialized clinic to get help.\u003c/p>\n\u003ch2>Many doctors haven’t heard of long COVID\u003c/h2>\n\u003cp>Stephen Mintz of Fresno is one such patient.\u003c/p>\n\u003cp>Mintz avoided COVID-19 for more than two years, but in August he went to a bar to celebrate his 59th birthday, and tested positive for the virus shortly thereafter. By September, Mintz found he didn’t have the physical or mental stamina to do much of anything. After two-and-a-half hours of activity, his limbs would get heavy and his thoughts would muddle.\u003c/p>\n\u003cp>“You could almost set a clock to it,” Mintz said. “Suddenly it would be very difficult to put one foot in front of the other.”\u003c/p>\n\u003cfigure id=\"attachment_11948034\" class=\"wp-caption alignnone\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01.jpeg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11948034\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01.jpeg\" alt=\"A middle-aged white man with glasses sits on a couch in a dark, shade-drawn room.\" width=\"1568\" height=\"1045\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01.jpeg 1568w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01-800x533.jpeg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01-1020x680.jpeg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01-160x107.jpeg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/040323-Long-Covid-LV_CM-01-1536x1024.jpeg 1536w\" sizes=\"auto, (max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Stephen Mintz sits at the side of his bed in his apartment in Fresno on March 3, 2023. Mintz was diagnosed with COVID-19 in September and has had chronic fatigue since then. \u003ccite>(Larry Valenzuela, CalMatters/CatchLight Local)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In January, Mintz was stacking chairs at a local bar where he works as a security guard. Within 10 minutes he got dizzy and couldn’t lift his arms anymore. It’s a common condition associated with long COVID called \u003ca href=\"https://www.jospt.org/doi/10.2519/jospt.2021.0106\">post-exertional malaise\u003c/a> — pushing through the fatigue can worsen symptoms.\u003c/p>\n\u003cp>“I actually cried then. I’ve been depressed over this and frustrated,” Mintz said. “I couldn’t believe I’m so weak.”\u003c/p>\n\u003cp>Mintz went to his primary care doctor in Fresno for help. He said he thought he had long COVID and was met with skepticism.\u003c/p>\n\u003cp>“His first reaction was that he hadn’t really heard of it,” Mintz said.\u003c/p>\n\u003cp>On his disability paperwork, Mintz said the doctor wrote “general malaise and short-term amnesia” because he didn’t know how to diagnose Mintz and told him to call UCSF, nearly 200 miles away, for advice.\u003c/p>\n\u003cp>“The doctor there said, ‘Um, well, if you lived here you could be part of a research study,’” Mintz said.\u003c/p>\n\u003cp>It’s a common experience among people with long COVID-19. Though the pandemic has thrust \u003ca href=\"https://time.com/6240058/post-viral-illnesses-common-long-covid/\">post-viral illnesses\u003c/a> into the spotlight, most doctors still don’t have the experience to treat the collection of \u003ca href=\"https://www.nature.com/articles/s41579-022-00846-2\">more than 200 symptoms\u003c/a> that make up long COVID.\u003c/p>\n\u003cp>Each new variant of COVID-19 also changes \u003ca href=\"https://www.sciencedirect.com/science/article/pii/S1871402121001193\">which symptoms are most common\u003c/a>, making it doubly difficult for the average primary care doctor to diagnose, said Dr. Nisha Viswanathan, a primary care physician at UCLA Health’s long COVID clinic. The “vague nature” of many symptoms like fatigue and insomnia also lead to misdiagnosis and frustration among patients.\u003c/p>\n\u003cp>“It’s really challenging,” Viswanathan said. “If you’re not seeing a certain volume of long COVID patients, it can be difficult to recognize when a patient may be having it versus not.”\u003c/p>\n\u003ch2>‘I knew it had gotten into my brain’\u003c/h2>\n\u003cp>COVID-19 first hit Mindy Lym, a 37-year-old from San Francisco, like a mild flu, causing fever and congestion. But on Day 5 of her illness, she looked at a text from her girlfriend who was isolating in a separate room and couldn’t make sense of the words. It looked like gibberish.\u003c/p>\n\u003cp>“That really scared the shit out of me,” Lym said. “I knew it had gotten into my brain.”\u003c/p>\n\u003cp>She has spent every day since then chasing after an elusive recovery. Like McCorkell, Lym developed \u003ca href=\"https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots\">postural orthostatic tachycardia syndrome\u003c/a> and wears compression garments like stockings and a corset to improve blood circulation. She also has \u003ca href=\"https://www.aaaai.org/conditions-treatments/related-conditions/mcas\">mast cell activation syndrome\u003c/a>, which causes an immune response similar to a severe allergic reaction as well as chronic inflammation.\u003c/p>\n\u003cp>For three months, Lym, who formerly worked as a music teacher and theater performer in San Francisco, could barely walk and needed a full-time caretaker to dress and bathe. Even soft noises and dim lights caused her to feel “unbearable pain.” When construction outside her house led to weeks of jackhammering, Lym developed PTSD.\u003c/p>\n\u003cp>“We moved because of my long COVID,” Lym said. “Being in a city with city noises … was completely untenable.”\u003c/p>\n\u003cfigure id=\"attachment_11948036\" class=\"wp-caption alignnone\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18.jpeg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11948036 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18.jpeg\" alt=\"A woman with long dark hair and glasses sits on a couch, looking out the window. \" width=\"1568\" height=\"1045\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18.jpeg 1568w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18-800x533.jpeg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18-1020x680.jpeg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18-160x107.jpeg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-18-1536x1024.jpeg 1536w\" sizes=\"auto, (max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Mindy Lym has been living with long COVID since the summer of 2022. \u003ccite>(Celeste Noche/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In September 2022, before moving out of state to rural Washington, Lym called the Post-Acute COVID-19 Syndrome clinic at Stanford Health Care. The clinic scheduled an appointment for her for October 2023.\u003c/p>\n\u003cp>“The demand has been extremely high,” said Dr. Linda Geng, co-director of Stanford’s long COVID clinic. The clinic sees about 12 to 15 new patients each week and has an eight-month average wait time.\u003c/p>\n\u003cp>Yet even as patients like Mintz and Lym struggle to get into a specialized clinic, UCLA physician Viswanathan said she has heard from multiple colleagues at other facilities that are considering closing their long COVID care clinics or reducing hours. Health systems are strapped for cash and facing a dire workforce shortage, said Dr. Anil Keswani, chief medical officer at Scripps Health in San Diego.\u003c/p>\n\u003cp>“We have increased supply costs. We have increased pharmacy costs. We have increased labor costs,” Keswani said. “How do health care systems invest in programs like long COVID clinics, like hiring more clinicians? Health care organizations have been battered over the last few years, but I don’t see any government relief.”\u003c/p>\n\u003cfigure id=\"attachment_11948037\" class=\"wp-caption alignnone\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25.jpeg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11948037\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25.jpeg\" alt=\"Lots of medications in bottles on a table.\" width=\"1568\" height=\"1045\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25.jpeg 1568w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25-800x533.jpeg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25-1020x680.jpeg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25-160x107.jpeg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/041423-Long-COVID-Mindy-Lym-CN-CM-25-1536x1024.jpeg 1536w\" sizes=\"auto, (max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Some of the many medications and supplements Mindy Lym takes for her long COVID symptoms. \u003ccite>(Celeste Noche/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch2>Janine’s story\u003c/h2>\n\u003cp>A patient navigator could help someone like Janine Loftis, who has fought for nearly 2 1/2 years to be seen by a long COVID specialist.\u003c/p>\n\u003cp>The Elk Grove resident turned 73 in January, but physically, she feels much older. In November 2020, after laying in “the house for two weeks not knowing what to do,” Loftis called an ambulance. It was the middle of the night, she had COVID, and her oxygen level dropped. Family and caretakers couldn’t check on her for fear of infection. By the time Loftis was admitted to the hospital, she had viral and bacterial pneumonia and blood clots forming deep in her veins.\u003c/p>\n\u003cp>Loftis was already disabled from previous spinal injuries, but the persistent aftereffects of COVID-19 have floored her.\u003c/p>\n\u003cp>“It’s embarrassing how little I can do on my own,” Loftis said. “My body gives out on me. Things are just lost to my mind.”\u003c/p>\n\u003cfigure id=\"attachment_11948038\" class=\"wp-caption alignnone\" style=\"max-width: 1568px\">\u003ca href=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01.jpeg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11948038 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01.jpeg\" alt=\"An older white woman with neat, white, shoulder-length hair wearing a purple floral long-sleeved blouse poses outside her house.\" width=\"1568\" height=\"1045\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01.jpeg 1568w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01-800x533.jpeg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01-1020x680.jpeg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01-160x107.jpeg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/042623-Long-Covid-Portraits-Janine-Loftis-RL-CM-01-1536x1024.jpeg 1536w\" sizes=\"auto, (max-width: 1568px) 100vw, 1568px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Janine Loftis, 73, at her home in Elk Grove on April 26, 2023. Loftis has long COVID, including lingering symptoms from the original infection such as brain fog and chronic fatigue. \u003ccite>(Rahul Lal/CalMatters)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The chronic fatigue and brain fog prevent her from going to in-person church services, and she recently gave her dog of nine years to an adoption agency after caring for her got too hard. When Loftis’ home caregiver took a leave of absence for four weeks, she couldn’t find a replacement, due to \u003ca href=\"https://laist.com/news/health/millions-of-californians-need-home-care-industry-in-crisis-ucla-labor-center-report\">long-standing workforce shortages that intensified during the pandemic\u003c/a>. Without anyone to help her, Loftis “struggled really horribly” to manage daily tasks, she said.\u003c/p>\n\u003cp>Juggling doctors’ appointments and navigating the byzantine health insurance system is an added obstacle for Loftis.\u003c/p>\n\u003cp>“My head is spinning just trying to talk about it again,” she said. “I don’t know how lay people, especially disabled ones with a lot of distractions like pain or like me, with brain fog … understand it.”\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Two months ago, Loftis finally convinced her primary care doctor to refer her to the UC Davis long COVID clinic, but she said her paperwork is now “lost in a pile of things that need authorization.”\u003c/p>\n\u003cp>“It takes everything just to keep up with anything,” Loftis said. “When things get ignored or I don’t know the process, I just have to wait for it to play out. I’m the middle man. I can’t do anything.”\u003c/p>\n\u003cp>No one from UC Davis Health’s long COVID clinic responded to a request for an interview. When asked about clinic capacity, the media relations division said that its post-COVID clinic has the ability to treat “an infinite number of patients.”\u003c/p>\n\u003ch2>Hope … with some caveats\u003c/h2>\n\u003cp>There is a decent chance of at least a partial recovery from long COVID within a year. Anecdotally, long COVID specialists interviewed by CalMatters said even if patients don’t make a full recovery, most see significant improvement over time.\u003c/p>\n\u003cp>“You look a year or 18 months out and the majority of people have had improvement if not complete resolution,” said Dr. Caitlin McAuley, a primary care physician at the USC Keck COVID Recovery Clinic.\u003c/p>\n\u003cp>A large study out of Israel found that \u003ca href=\"https://www.bmj.com/content/380/bmj-2022-072529\">among patients with mild COVID-19 infections, most symptoms resolved within one year\u003c/a>.\u003c/p>\n\u003cp>Other studies, however, paint \u003ca href=\"https://www.nature.com/articles/s41467-022-33415-5\">a less rosy picture\u003c/a>, with \u003ca href=\"https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(22)00127-8/fulltext\">few patients reporting full recovery\u003c/a>. One study on French patients found \u003ca href=\"https://www.nature.com/articles/s41467-022-29513-z\">85% still reported long COVID symptoms\u003c/a> a year after onset.\u003c/p>\n\u003cp>On the plus side, Mintz, who has had long COVID for eight months, has slowly regained his energy over time. He can go five or six hours without crashing, compared to two hours in January.\u003c/p>\n\u003cp>And Lym, who has had long COVID for nine months, has also seen a marked improvement. In February, she enrolled in a private long COVID research and treatment clinic. Together with her doctor, Lym discovered certain foods exacerbated her most severe symptoms. Now, she has an 18-page list of foods she can’t eat and takes a medley of antihistamines, blood thinners and supplements daily. Though Lym is still disabled, her sensory issues are 95% better and her energy has steadily improved, she said.\u003c/p>\n\u003cp>“I feel like I have my personality back. My fatigue is no longer limiting how I express myself … which is amazing,” Lym said.\u003c/p>\n\u003cp>But Lym’s clinic isn’t covered by insurance, and costs $1,000 per month, plus the cost of any tests the doctor orders.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“It’s not accessible,” Lym said. “I know there are so many people going through what I’m going through but don’t have the resources.”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Lost careers. Broken marriages. Family and friends who dismiss and don’t believe.\u003c/p>\n\u003cp>These are some of the emotional and financial struggles long COVID patients face years after their infections. Physically, they are debilitated and in pain: unable to walk up stairs, focus on a project or hold down a job. Facing the end of the federal public health emergency in May, many people experiencing lingering effects of the virus say they feel angry and abandoned by policymakers eager to move on.\u003c/p>\n\u003cp>“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.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The Centers for Disease Control and Prevention estimated in March that \u003ca href=\"https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm\">6% of U.S. adults\u003c/a>, or about 16 million people, 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 people, have symptoms that have significantly reduced their ability to carry out day-to-day activities.\u003c/p>\n\u003cp>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 fatigue and depression, are linked to long COVID, said Linda Geng, a physician who treats patients at Stanford Medicine’s \u003ca href=\"https://stanfordhealthcare.org/medical-clinics/post-covid-clinic.html\">Post-Acute COVID-19 Syndrome Clinic\u003c/a>.\u003c/p>\n\u003cp>[pullquote size=\"medium\" align=\"right\" citation=\"Shelby Hedgecock, long COVID survivor\"]‘Patients are losing hope. We feel swept under the rug.’[/pullquote]\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cp>“When you don’t have any tests that show that anything’s abnormal, it can be quite invalidating and anxiety-provoking,” Geng said.\u003c/p>\n\u003cp>The physical and emotional toll have left some feeling hopeless. A 2022 study of adults in Japan and Sweden found that those with post-COVID conditions were \u003ca href=\"https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-022-03874-7\">more than twice as likely to develop mental health issues\u003c/a>, including depression, anxiety and post-traumatic stress, as people without them.\u003c/p>\n\u003cfigure id=\"attachment_11946940\" class=\"wp-caption aligncenter\" style=\"max-width: 744px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11946940\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_4.jpg\" alt='A woman stands in front of a billboard pictured in the distance. It reads, \"I was a healthy person before this. Shelby, age 29, covid-19 survivor.\"' width=\"744\" height=\"726\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_4.jpg 744w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_4-160x156.jpg 160w\" sizes=\"auto, (max-width: 744px) 100vw, 744px\">\u003cfigcaption class=\"wp-caption-text\">Shelby Hedgecock stands in front of a billboard from a Los Angeles County public health campaign that features her as a long COVID patient. \u003ccite>(Courtesy Gustavo Sosa)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“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.”\u003c/p>\n\u003cp>In Los Angeles County, 46% of adults who contracted COVID had fully recovered a month later, but the rest — a majority — reported one or more continuing symptoms, according to a \u003ca href=\"https://californiahealthline.org/wp-content/uploads/sites/3/2023/03/Long-Covid-Study-Graphic.jpg\">675-patient study\u003c/a> by the University of Southern California’s COVID-19 Pandemic Research Center. The researchers found that chronic fatigue topped the list of health issues, followed by brain fog and a persistent cough, all of which affect people’s daily lives.\u003c/p>\n\u003cp>Among the respondents who identified as living with long COVID, 77% said their condition limited daily activities such as going to school or work or socializing. One-quarter reported experiencing severe limitations.\u003c/p>\n\u003cp>Taking antivirals cuts the risk of developing long COVID in people who are newly infected. But for people already suffering, medical science is trying to catch up.\u003c/p>\n\u003cp>Here’s a look at Hedgecock and two other patients who have had long COVID for years.\u003c/p>\n\u003ch2>A debilitating brain injury\u003c/h2>\n\u003cp>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 having trouble breathing.\u003c/p>\n\u003cp>“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.’”\u003c/p>\n\u003cfigure id=\"attachment_11946939\" class=\"wp-caption aligncenter\" style=\"max-width: 744px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11946939 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_3.jpg\" alt=\"A white woman in a blue mask lies in a hospital bed with monitors stuck to her chest alongside a floral shoulder tattoo and a small gold chain with a white gemstone pendant.\" width=\"744\" height=\"906\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_3.jpg 744w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_3-160x195.jpg 160w\" sizes=\"auto, (max-width: 744px) 100vw, 744px\">\u003cfigcaption class=\"wp-caption-text\">Shelby Hedgecock, a personal trainer, was about to launch an online wellness business before contracting COVID in spring 2020. \u003ccite>(Courtesy Shelby Hedgecock)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>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.\u003c/p>\n\u003cp>Her condition kept her from one of her favorite hobbies, reading, for 19 months.\u003c/p>\n\u003cp>“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.”[pullquote size=\"medium\" align=\"right\" citation=\"Shelby Hedgecock, long COVID survivor\"]‘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. It was the strangest, most discouraging thing ever.’[/pullquote]Months later, under the direction of a specialist, Hedgecock underwent a test measuring electrical activity in the brain. It revealed that her brain had been starved of oxygen for months, damaging the section controlling memory and language.\u003c/p>\n\u003cp>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 \u003ca href=\"https://californiahealthline.org/news/article/medicaid-unwinding-coverage-loss-california-post-pandemic/\">Medicaid pandemic protections expire\u003c/a>, while others remain unable to work.\u003c/p>\n\u003cp>“A lot of them have lost their life savings. Some are experiencing homelessness,” she said.\u003c/p>\n\u003ch2>In bed for a year\u003c/h2>\n\u003cp>Julia Landis led a fulfilling life as a therapist before contracting COVID in spring 2020.\u003c/p>\n\u003cp>“I was really able to help 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.\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cp>“I just stayed in bed for about a year,” she said.\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cfigure id=\"attachment_11946941\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11946941 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/LongCovid.jpg\" alt=\"A photo spread of three images of women's faces: one smiles with long, gray hair and a pink and purple floral top; one has short, brown hair and cat eye glasses and a blue blouse; the last woman has a shoulder of floral tattoos exposed as she wears a black workout tank top as she smiles at the camera with earbuds in and her hair pulled back.\" width=\"1920\" height=\"1280\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/LongCovid.jpg 1920w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/LongCovid-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/LongCovid-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/LongCovid-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/LongCovid-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Linda Rosenthal, Julia Landis and Shelby Hedgecock share their stories of long COVID. \u003ccite>(California Healthline)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“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.”[pullquote size=\"medium\" align=\"right\" citation=\"Julia Landis, long COVID survivor\"]‘It’s terrifying because there’s just no way of knowing if this is going to be for the rest of my existence.’[/pullquote]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 it can take days to recover.\u003c/p>\n\u003cp>“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.\u003c/p>\n\u003ch2>‘I felt betrayed’\u003c/h2>\n\u003cp>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.[aside label='More on Health' tag='health']She called and set up a treatment plan with a local cardiologist near her home in Laguna Woods, Orange County, 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.\u003c/p>\n\u003cp>“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.”\u003c/p>\n\u003cp>Rosenthal found another cardiologist willing to do telehealth visits and who has staff wear masks in the office even though the state rule has expired. The practice, however, is more than an hour’s drive from where she lives.\u003c/p>\n\u003cp>\u003ci>\u003cspan style=\"font-weight: 400\">California Healthline is a service of the California Health Care Foundation produced by Kaiser Health News.\u003c/span>\u003c/i>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Lost careers. Broken marriages. Family and friends who dismiss and don’t believe.\u003c/p>\n\u003cp>These are some of the emotional and financial struggles long COVID patients face years after their infections. Physically, they are debilitated and in pain: unable to walk up stairs, focus on a project or hold down a job. Facing the end of the federal public health emergency in May, many people experiencing lingering effects of the virus say they feel angry and abandoned by policymakers eager to move on.\u003c/p>\n\u003cp>“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.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The Centers for Disease Control and Prevention estimated in March that \u003ca href=\"https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm\">6% of U.S. adults\u003c/a>, or about 16 million people, 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 people, have symptoms that have significantly reduced their ability to carry out day-to-day activities.\u003c/p>\n\u003cp>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 fatigue and depression, are linked to long COVID, said Linda Geng, a physician who treats patients at Stanford Medicine’s \u003ca href=\"https://stanfordhealthcare.org/medical-clinics/post-covid-clinic.html\">Post-Acute COVID-19 Syndrome Clinic\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cp>“When you don’t have any tests that show that anything’s abnormal, it can be quite invalidating and anxiety-provoking,” Geng said.\u003c/p>\n\u003cp>The physical and emotional toll have left some feeling hopeless. A 2022 study of adults in Japan and Sweden found that those with post-COVID conditions were \u003ca href=\"https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-022-03874-7\">more than twice as likely to develop mental health issues\u003c/a>, including depression, anxiety and post-traumatic stress, as people without them.\u003c/p>\n\u003cfigure id=\"attachment_11946940\" class=\"wp-caption aligncenter\" style=\"max-width: 744px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-11946940\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_4.jpg\" alt='A woman stands in front of a billboard pictured in the distance. It reads, \"I was a healthy person before this. Shelby, age 29, covid-19 survivor.\"' width=\"744\" height=\"726\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_4.jpg 744w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_4-160x156.jpg 160w\" sizes=\"auto, (max-width: 744px) 100vw, 744px\">\u003cfigcaption class=\"wp-caption-text\">Shelby Hedgecock stands in front of a billboard from a Los Angeles County public health campaign that features her as a long COVID patient. \u003ccite>(Courtesy Gustavo Sosa)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“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.”\u003c/p>\n\u003cp>In Los Angeles County, 46% of adults who contracted COVID had fully recovered a month later, but the rest — a majority — reported one or more continuing symptoms, according to a \u003ca href=\"https://californiahealthline.org/wp-content/uploads/sites/3/2023/03/Long-Covid-Study-Graphic.jpg\">675-patient study\u003c/a> by the University of Southern California’s COVID-19 Pandemic Research Center. The researchers found that chronic fatigue topped the list of health issues, followed by brain fog and a persistent cough, all of which affect people’s daily lives.\u003c/p>\n\u003cp>Among the respondents who identified as living with long COVID, 77% said their condition limited daily activities such as going to school or work or socializing. One-quarter reported experiencing severe limitations.\u003c/p>\n\u003cp>Taking antivirals cuts the risk of developing long COVID in people who are newly infected. But for people already suffering, medical science is trying to catch up.\u003c/p>\n\u003cp>Here’s a look at Hedgecock and two other patients who have had long COVID for years.\u003c/p>\n\u003ch2>A debilitating brain injury\u003c/h2>\n\u003cp>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 having trouble breathing.\u003c/p>\n\u003cp>“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.’”\u003c/p>\n\u003cfigure id=\"attachment_11946939\" class=\"wp-caption aligncenter\" style=\"max-width: 744px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11946939 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_3.jpg\" alt=\"A white woman in a blue mask lies in a hospital bed with monitors stuck to her chest alongside a floral shoulder tattoo and a small gold chain with a white gemstone pendant.\" width=\"744\" height=\"906\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_3.jpg 744w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/Long_covid_Shelby_Hedgecock_3-160x195.jpg 160w\" sizes=\"auto, (max-width: 744px) 100vw, 744px\">\u003cfigcaption class=\"wp-caption-text\">Shelby Hedgecock, a personal trainer, was about to launch an online wellness business before contracting COVID in spring 2020. \u003ccite>(Courtesy Shelby Hedgecock)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>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.\u003c/p>\n\u003cp>Her condition kept her from one of her favorite hobbies, reading, for 19 months.\u003c/p>\n\u003cp>“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.”\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>Months later, under the direction of a specialist, Hedgecock underwent a test measuring electrical activity in the brain. It revealed that her brain had been starved of oxygen for months, damaging the section controlling memory and language.\u003c/p>\n\u003cp>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 \u003ca href=\"https://californiahealthline.org/news/article/medicaid-unwinding-coverage-loss-california-post-pandemic/\">Medicaid pandemic protections expire\u003c/a>, while others remain unable to work.\u003c/p>\n\u003cp>“A lot of them have lost their life savings. Some are experiencing homelessness,” she said.\u003c/p>\n\u003ch2>In bed for a year\u003c/h2>\n\u003cp>Julia Landis led a fulfilling life as a therapist before contracting COVID in spring 2020.\u003c/p>\n\u003cp>“I was really able to help 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.\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cp>“I just stayed in bed for about a year,” she said.\u003c/p>\n\u003cp>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.\u003c/p>\n\u003cfigure id=\"attachment_11946941\" class=\"wp-caption aligncenter\" style=\"max-width: 1920px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"wp-image-11946941 size-full\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2023/04/LongCovid.jpg\" alt=\"A photo spread of three images of women's faces: one smiles with long, gray hair and a pink and purple floral top; one has short, brown hair and cat eye glasses and a blue blouse; the last woman has a shoulder of floral tattoos exposed as she wears a black workout tank top as she smiles at the camera with earbuds in and her hair pulled back.\" width=\"1920\" height=\"1280\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/LongCovid.jpg 1920w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/LongCovid-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/LongCovid-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/LongCovid-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2023/04/LongCovid-1536x1024.jpg 1536w\" sizes=\"auto, (max-width: 1920px) 100vw, 1920px\">\u003cfigcaption class=\"wp-caption-text\">Linda Rosenthal, Julia Landis and Shelby Hedgecock share their stories of long COVID. \u003ccite>(California Healthline)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“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.”\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>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 it can take days to recover.\u003c/p>\n\u003cp>“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.\u003c/p>\n\u003ch2>‘I felt betrayed’\u003c/h2>\n\u003cp>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.\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>She called and set up a treatment plan with a local cardiologist near her home in Laguna Woods, Orange County, 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.\u003c/p>\n\u003cp>“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.”\u003c/p>\n\u003cp>Rosenthal found another cardiologist willing to do telehealth visits and who has staff wear masks in the office even though the state rule has expired. The practice, however, is more than an hour’s drive from where she lives.\u003c/p>\n\u003cp>\u003ci>\u003cspan style=\"font-weight: 400\">California Healthline is a service of the California Health Care Foundation produced by Kaiser Health News.\u003c/span>\u003c/i>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>President Biden faced criticism from many in the medical community this week after saying “the pandemic is over” during a wide-ranging CBS “60 Minutes” interview that aired Sunday.\u003c/p>\n\u003cp>“We still have a problem with COVID,” Biden said. “We’re still doing a lot of work on it, but the pandemic is over.”\u003c/p>\n\u003cp>The surprise declaration struck many experts as inaccurate and irresponsible, as each day, some 300 to 400 people in the U.S. still die from the virus and tens of thousands of others are newly infected.\u003c/p>\n\u003cp>[aside label=\"Related Stories\" postID=\"news_11926261,science_1980220,forum_2010101889939\"]\u003c/p>\n\u003cp>“When you have the president of the U.S. saying the pandemic is over, why would people line up for their boosters? Why would Congress allocate additional funding for these other strategies and tools?” Dr. Céline Gounder, an epidemiologist and senior fellow with the Kaiser Family Foundation, told NPR. “I am profoundly disappointed. I think this is a real lack of leadership.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>But Dr. Bob Wachter, chair of the Department of Medicine at UCSF, took a more tempered approach in his interview Tuesday with The California Report’s Madi Bolaños.\u003c/p>\n\u003cp>“There’s no bright line that separates the pandemic from what follows the pandemic,” he said. “I think it’s reasonable to look at the situation now and say that the acute threat is far lower than it was, that the situation is relatively stable and probably … a facsimile of what we’re going to be facing for the next several years.”\u003c/p>\n\u003cp>Wachter said the president’s comments could prompt people to pay less attention to the virus, particularly at a moment when his administration is making a hard push for Americans to get the latest, updated booster shot.\u003c/p>\n\u003cp>But the real concern, he added, is that Americans are “just going to stop listening unless they believe we’re giving them an accurate assessment. And the accurate assessment is COVID is a real threat.”\u003c/p>\n\u003cp>But Wachter also said Biden was not being unreasonable in underscoring the many tools now available to help protect people from the virus, while allowing them to safely resume much of their pre-pandemic life.\u003c/p>\n\u003cp>“How do we shift toward an ongoing strategy for ourselves and as a society that has us keep ourselves as safe as possible while also beginning to get back to a more normal life?” he said.\u003c/p>\n\u003cp>Wachter — who has become one of the nation’s go-to experts on COVID, in part due to his Twitter threads in which he shares his strategies for personal risk assessment — \u003ca href=\"https://twitter.com/Bob_Wachter/status/1571601224864268289\">posted this week that he would now be willing to eat indoors at a restaurant in the Bay Area\u003c/a> if outdoor dining wasn’t an option. That call was based on a number of factors, including his age, health status, local transmission rates and the fact that he’d recently received the new booster.\u003c/p>\n\u003cp>https://twitter.com/Bob_Wachter/status/1571601224864268289\u003c/p>\n\u003cp>“I did a lot of math and I came out with a calculation that the chances that any individual person — for example, my waiter or someone sitting (with) me … (at) dinner — has COVID and feels fine is about 1 in 100. It’s not zero. So there’s a risk there,” he said. “But the chances that I will get COVID from going out to dinner are probably 1 in 100 or lower.”\u003c/p>\n\u003cp>Wachter’s main concern, he added, remains the risk of so-called long COVID — a condition his wife has — which can include fatigue, brain fog, respiratory issues and other symptoms of the virus that persist several months after being infected. It’s estimated that nearly \u003ca href=\"https://www.npr.org/transcripts/1114375163\">20 million Americans suffer from long COVID\u003c/a>, according to Census Bureau data.\u003c/p>\n\u003cp>But based on his calculations, the risk of getting long COVID is about 1 in 1,000, and the risk of dying from COVID is about 1 in 200,000, he said.\u003c/p>\n\u003cp>“Those are levels of risk that I’m willing to accept if I want to go out with friends or family and it’s too cold to eat outside,” Wachter said. “I’d still prefer to eat outside, over inside. I think it’s safer. It’s not like I’m saying it’s perfectly safe, but it has crossed my threshold to say the risk is low enough that I’m now willing to do it.”\u003c/p>\n\u003cp>But, he added, people need to make their own informed choices.\u003c/p>\n\u003cp>“I’m \u003cspan data-pm-slice='1 1 [\"paragraph-wrapper\",null,\"paragraph\",{\"id\":\"p9-0\"}]'>not telling anybody it should cross their threshold or not,” he said. \u003c/span>“When I go in a restaurant, it’s packed, bars are packed. So a lot of people have already made this choice long ago.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003ci>KQED’s Emma Silvers contributed reporting to this story.\u003c/i>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But Dr. Bob Wachter, chair of the Department of Medicine at UCSF, took a more tempered approach in his interview Tuesday with The California Report’s Madi Bolaños.\u003c/p>\n\u003cp>“There’s no bright line that separates the pandemic from what follows the pandemic,” he said. “I think it’s reasonable to look at the situation now and say that the acute threat is far lower than it was, that the situation is relatively stable and probably … a facsimile of what we’re going to be facing for the next several years.”\u003c/p>\n\u003cp>Wachter said the president’s comments could prompt people to pay less attention to the virus, particularly at a moment when his administration is making a hard push for Americans to get the latest, updated booster shot.\u003c/p>\n\u003cp>But the real concern, he added, is that Americans are “just going to stop listening unless they believe we’re giving them an accurate assessment. And the accurate assessment is COVID is a real threat.”\u003c/p>\n\u003cp>But Wachter also said Biden was not being unreasonable in underscoring the many tools now available to help protect people from the virus, while allowing them to safely resume much of their pre-pandemic life.\u003c/p>\n\u003cp>“How do we shift toward an ongoing strategy for ourselves and as a society that has us keep ourselves as safe as possible while also beginning to get back to a more normal life?” he said.\u003c/p>\n\u003cp>Wachter — who has become one of the nation’s go-to experts on COVID, in part due to his Twitter threads in which he shares his strategies for personal risk assessment — \u003ca href=\"https://twitter.com/Bob_Wachter/status/1571601224864268289\">posted this week that he would now be willing to eat indoors at a restaurant in the Bay Area\u003c/a> if outdoor dining wasn’t an option. That call was based on a number of factors, including his age, health status, local transmission rates and the fact that he’d recently received the new booster.\u003c/p>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\n\u003cp>“I did a lot of math and I came out with a calculation that the chances that any individual person — for example, my waiter or someone sitting (with) me … (at) dinner — has COVID and feels fine is about 1 in 100. It’s not zero. So there’s a risk there,” he said. “But the chances that I will get COVID from going out to dinner are probably 1 in 100 or lower.”\u003c/p>\n\u003cp>Wachter’s main concern, he added, remains the risk of so-called long COVID — a condition his wife has — which can include fatigue, brain fog, respiratory issues and other symptoms of the virus that persist several months after being infected. It’s estimated that nearly \u003ca href=\"https://www.npr.org/transcripts/1114375163\">20 million Americans suffer from long COVID\u003c/a>, according to Census Bureau data.\u003c/p>\n\u003cp>But based on his calculations, the risk of getting long COVID is about 1 in 1,000, and the risk of dying from COVID is about 1 in 200,000, he said.\u003c/p>\n\u003cp>“Those are levels of risk that I’m willing to accept if I want to go out with friends or family and it’s too cold to eat outside,” Wachter said. “I’d still prefer to eat outside, over inside. I think it’s safer. It’s not like I’m saying it’s perfectly safe, but it has crossed my threshold to say the risk is low enough that I’m now willing to do it.”\u003c/p>\n\u003cp>But, he added, people need to make their own informed choices.\u003c/p>\n\u003cp>“I’m \u003cspan data-pm-slice='1 1 [\"paragraph-wrapper\",null,\"paragraph\",{\"id\":\"p9-0\"}]'>not telling anybody it should cross their threshold or not,” he said. \u003c/span>“When I go in a restaurant, it’s packed, bars are packed. So a lot of people have already made this choice long ago.”\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003ci>KQED’s Emma Silvers contributed reporting to this story.\u003c/i>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Angela Meriquez Vázquez initially experienced mild cold symptoms when she was diagnosed with COVID in March 2020. This acute phase lasted three months until Vázquez began to develop increasingly worrying symptoms which included blood clots, mini strokes, seizures, and newly developed food allergies.\u003c/p>\n\u003cp>Her symptoms were dismissed by medical professionals leading Vázquez to question her trust in the health care system. “I have to believe that my identity as a Latina and a young woman played no small role in that” she says, “and I imagine, you know, if I had been white, I may have been offered more investigative testing at the beginning of my illness and more supportive care up front that really could have mitigated the trajectory of my symptoms.”\u003c/p>\n\u003cp>Now, more than a year and a half after her initial COVID diagnosis, Vázquez says she’s nowhere near back to normal. Once an avid runner, she now suffers from chronic fatigue syndrome, bouts of confusion, sleep apnea, heart palpitations, and severe migraines.\u003c/p>\n\u003cp>After the National Institute of Health’s $1 billion initiative to gather more data on the long-term consequences of COVID in early 2021, reports of long COVID-19 have been on the rise. This November, KQED Forum’s Lesley McClurg\u003ca href=\"https://www.kqed.org/forum/2010101886578/what-science-tells-us-about-the-mysteries-of-long-covid\" target=\"_blank\" rel=\"noopener noreferrer\"> spoke with experts and a patient on what is currently known and being researched about the long-term effects of the virus\u003c/a>:\u003c/p>\n\u003cul>\n\u003cli>\u003cstrong>Angela Meriquez Vázquez,\u003c/strong> long-haul COVID patient\u003c/li>\n\u003cli>\u003cstrong>Juliet Morgan,\u003c/strong> neurologist and chief resident of psychiatry at UCSF\u003c/li>\n\u003cli>\u003cstrong>Upinder Singh,\u003c/strong> infectious disease expert at Stanford University\u003c/li>\n\u003cli>\u003cstrong>Zackary Berger,\u003c/strong> associate professor at Johns Hopkins Institute of Bioethics\u003c/li>\n\u003c/ul>\n\u003cp>\u003cem>The following interview has been edited for length and clarity.\u003c/em>\u003c/p>\n\u003ch3>\u003cstrong>What do we know about long COVID-19? \u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>Upinder Singh:\u003c/strong> We’re at the beginning of a long road. We only know some things about long COVID. We know that it’s a real condition, and that people feel terrible and they have multiple symptoms. We know that everybody with long COVID can present differently. We also know that people who had mild disease with COVID can get long COVID. It’s not limited just to people who had severe illness in the ICU.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>We know the vaccines are effective and safe, and they decrease the symptoms that people get even if they have breakthrough infections. So anybody who’s vaccinated and gets a breakthrough infection is more likely to have milder symptoms and prevent hospitalization and death. We do think that people who have breakthrough infections may still be able to get long COVID, but the hope is that their symptoms are milder and that their resolution is faster.\u003c/p>\n\u003cp>\u003cstrong>Zackary Berger:\u003c/strong> There’s some indication that vaccinated individuals who have COVID symptoms have a lesser chance of developing long COVID. But a lot of the literature is difficult to interpret, and it’s still in the early days.\u003c/p>\n\u003cp>We have to see the right kind of evidence, and then when a patient needs answers, we try to get them answers. But long COVID is very difficult clinically. 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Many people who had anxiety and depression before they had long COVID have experienced worsened symptoms.\u003c/p>\n\u003cfigure id=\"attachment_11899907\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11899907\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut-800x533.jpg\" alt=\"A nurse in PPE rests their hands on a railing inside of a triage center.\" width=\"800\" height=\"533\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Registered nurse Angelo Daulat at Kaiser Permanente in Richmond where patients with respiratory symptoms are being triaged, on Thursday, Mar. 19, 2020. \u003ccite>(Beth LaBerge)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>\u003cstrong>What is the best approach to long COVID-19 care?\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>Upinder Singh:\u003c/strong> Now, a year and a half into the pandemic, we have an understanding that there is a very real, very physical condition called long COVID. I would really encourage individuals to talk to their primary care physicians, and if their primary care physicians are not comfortable with or don’t have the experience with long COVID, seek out a long COVID clinic.\u003c/p>\n\u003cp>Although two different long COVID patients can experience some overlap, their symptoms are often quite distinct. So you do really need a multidisciplinary approach where you can have a central provider who has some expertise in long COVID, who can then call in a neurologist if you’re having neurological issues or call in a cardiologist if you’re having cardiac issues. This is a very tough disease to go through alone.\u003c/p>\n\u003cp>\u003cstrong>Juliet Morgan:\u003c/strong> Along with Dr. Jobs, a palliative care physician at UCSF, I run a long COVID integrative medicine skills group for recovery, so we’ve seen a lot of long COVID patients.\u003cbr>\nUnfortunately, Angela’s story is nothing rare. I wish that we heard stories that were different from hers, but we had many, many participants who have been suffering and felt invisible, unheard and really invalidated.\u003c/p>\n\u003cp>We bring people together with knowledgeable physicians to think about how we’re going to tackle long COVID together. We looked at what interventions have worked in other chronic conditions where people have increased inflammation or an over-activated, sympathetic nervous system, and we decided we wanted to emphasize interventions like mindfulness, coping strategies, and cognitive behavioral therapy.\u003c/p>\n\u003cp>The most important part of this recipe was bringing people with long COVID together into the same space so they could teach each other.\u003c/p>\n\u003ch3>\u003cstrong>What is causing long COVID-19?\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>Zackary Berger:\u003c/strong> We must understand long COVID as a multi-domain phenomenon. So there’s the individual body of the person that undergoes a variety of symptoms which can be really unique from person to person. Then there’s the social body; the collective. The collective is more than just the sum of individuals.\u003c/p>\n\u003cp>COVID has been a social phenomenon that has affected many groups in our society. So, COVID and long COVID acts on multiple levels at once, which makes it hard to define and to treat. This means that these symptoms of long COVID are exacerbated by social phenomena, which people tend to overlook as outside the realm of medicine, and that’s completely false. This leads us to a concentration on biomedical solutions when there’s a lot that needs to be done for patients suffering from long COVID that’s not made in a lab or found in a lab test.\u003c/p>\n\u003ch3>\u003cstrong>Will long COVID-19 care affect care for other chronic illnesses?\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>Juliet Morgan:\u003c/strong> Long COVID is bringing all of these other long-haul illnesses out from the shadows. However, our medical system has had difficulty with understanding how we treat this population, and I am very hopeful that all of this research and all of this thought being put into long COVID will help us to expand how we can help people who’ve identified with post-viral post-infectious syndromes for 20 or 30 years and have felt really abandoned by our medical system.\u003c/p>\n\u003ch3>\u003cstrong>Long COVID-19 moving forward\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>Zackary Berger:\u003c/strong> Because long COVID as a disease that develops in time differently from person to person, it requires a multidisciplinary team of people. Relief of pain is really important. Physical activity is really important, and providing specific treatment for symptoms like myocarditis and lung conditions associated with long COVID is really important. Unfortunately, there isn’t one specific answer to long COVID, but there are treatments out for their very specific things. Sometimes what works best is an incremental approach to chronic symptoms.\u003c/p>\n\u003cp>\u003cstrong>Juliet Morgan:\u003c/strong> There isn’t a one size fits all approach to long COVID; it’s about finding a provider, a practitioner that you feel is hearing you and that you develop with that person a plan for each of the issues going on with you.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cstrong>Upinder Singh:\u003c/strong> We want to be careful that we aren’t too quick to diagnose people who develop symptoms after having an episode of COVID as having long COVID. Part of engaging with a primary care provider is to make sure there’s no underlying issue. We’ve been in a pandemic for 18 months and people have developed hypothyroidism or other cardiac issues during that time that may be causing their symptoms.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Angela Meriquez Vázquez initially experienced mild cold symptoms when she was diagnosed with COVID in March 2020. This acute phase lasted three months until Vázquez began to develop increasingly worrying symptoms which included blood clots, mini strokes, seizures, and newly developed food allergies.\u003c/p>\n\u003cp>Her symptoms were dismissed by medical professionals leading Vázquez to question her trust in the health care system. “I have to believe that my identity as a Latina and a young woman played no small role in that” she says, “and I imagine, you know, if I had been white, I may have been offered more investigative testing at the beginning of my illness and more supportive care up front that really could have mitigated the trajectory of my symptoms.”\u003c/p>\n\u003cp>Now, more than a year and a half after her initial COVID diagnosis, Vázquez says she’s nowhere near back to normal. Once an avid runner, she now suffers from chronic fatigue syndrome, bouts of confusion, sleep apnea, heart palpitations, and severe migraines.\u003c/p>\n\u003cp>After the National Institute of Health’s $1 billion initiative to gather more data on the long-term consequences of COVID in early 2021, reports of long COVID-19 have been on the rise. This November, KQED Forum’s Lesley McClurg\u003ca href=\"https://www.kqed.org/forum/2010101886578/what-science-tells-us-about-the-mysteries-of-long-covid\" target=\"_blank\" rel=\"noopener noreferrer\"> spoke with experts and a patient on what is currently known and being researched about the long-term effects of the virus\u003c/a>:\u003c/p>\n\u003cul>\n\u003cli>\u003cstrong>Angela Meriquez Vázquez,\u003c/strong> long-haul COVID patient\u003c/li>\n\u003cli>\u003cstrong>Juliet Morgan,\u003c/strong> neurologist and chief resident of psychiatry at UCSF\u003c/li>\n\u003cli>\u003cstrong>Upinder Singh,\u003c/strong> infectious disease expert at Stanford University\u003c/li>\n\u003cli>\u003cstrong>Zackary Berger,\u003c/strong> associate professor at Johns Hopkins Institute of Bioethics\u003c/li>\n\u003c/ul>\n\u003cp>\u003cem>The following interview has been edited for length and clarity.\u003c/em>\u003c/p>\n\u003ch3>\u003cstrong>What do we know about long COVID-19? \u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>Upinder Singh:\u003c/strong> We’re at the beginning of a long road. We only know some things about long COVID. We know that it’s a real condition, and that people feel terrible and they have multiple symptoms. We know that everybody with long COVID can present differently. We also know that people who had mild disease with COVID can get long COVID. It’s not limited just to people who had severe illness in the ICU.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>We know the vaccines are effective and safe, and they decrease the symptoms that people get even if they have breakthrough infections. So anybody who’s vaccinated and gets a breakthrough infection is more likely to have milder symptoms and prevent hospitalization and death. We do think that people who have breakthrough infections may still be able to get long COVID, but the hope is that their symptoms are milder and that their resolution is faster.\u003c/p>\n\u003cp>\u003cstrong>Zackary Berger:\u003c/strong> There’s some indication that vaccinated individuals who have COVID symptoms have a lesser chance of developing long COVID. But a lot of the literature is difficult to interpret, and it’s still in the early days.\u003c/p>\n\u003cp>We have to see the right kind of evidence, and then when a patient needs answers, we try to get them answers. But long COVID is very difficult clinically. People want answers, and sometimes they don’t even have a doctor to go to and can’t even get testing, and that’s where we need to work just as hard as we do determining which tests to do.\u003c/p>\n\u003ch3>\u003cstrong>Is Long COVID-19 psychosomatic?\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>Juliet Morgan:\u003c/strong> We have to be very humble when discussing mental health and long COVID because, at least from the patients I’ve taken care of, I can’t imagine that this is entirely generated by a primary psychiatric illness. We also know that there are these abnormal markers when we are looking at research studies that suggest that there’s more going on beyond psychiatric manifestations.\u003c/p>\n\u003cp>It’s hard for an ailing body not to then generate an ailing emotional response. I haven’t taken care of a long COVID patient who doesn’t have anxiety and depression. Many people who had anxiety and depression before they had long COVID have experienced worsened symptoms.\u003c/p>\n\u003cfigure id=\"attachment_11899907\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-11899907\" src=\"https://ww2.kqed.org/app/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut-800x533.jpg\" alt=\"A nurse in PPE rests their hands on a railing inside of a triage center.\" width=\"800\" height=\"533\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut-800x533.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut-1020x680.jpg 1020w, https://cdn.kqed.org/wp-content/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut-160x107.jpg 160w, https://cdn.kqed.org/wp-content/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut-1536x1024.jpg 1536w, https://cdn.kqed.org/wp-content/uploads/sites/10/2021/12/RS42205_004_KQED_Richmond_Kaiser_03192020_-qut.jpg 1920w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Registered nurse Angelo Daulat at Kaiser Permanente in Richmond where patients with respiratory symptoms are being triaged, on Thursday, Mar. 19, 2020. \u003ccite>(Beth LaBerge)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003ch3>\u003cstrong>What is the best approach to long COVID-19 care?\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>Upinder Singh:\u003c/strong> Now, a year and a half into the pandemic, we have an understanding that there is a very real, very physical condition called long COVID. I would really encourage individuals to talk to their primary care physicians, and if their primary care physicians are not comfortable with or don’t have the experience with long COVID, seek out a long COVID clinic.\u003c/p>\n\u003cp>Although two different long COVID patients can experience some overlap, their symptoms are often quite distinct. So you do really need a multidisciplinary approach where you can have a central provider who has some expertise in long COVID, who can then call in a neurologist if you’re having neurological issues or call in a cardiologist if you’re having cardiac issues. This is a very tough disease to go through alone.\u003c/p>\n\u003cp>\u003cstrong>Juliet Morgan:\u003c/strong> Along with Dr. Jobs, a palliative care physician at UCSF, I run a long COVID integrative medicine skills group for recovery, so we’ve seen a lot of long COVID patients.\u003cbr>\nUnfortunately, Angela’s story is nothing rare. I wish that we heard stories that were different from hers, but we had many, many participants who have been suffering and felt invisible, unheard and really invalidated.\u003c/p>\n\u003cp>We bring people together with knowledgeable physicians to think about how we’re going to tackle long COVID together. We looked at what interventions have worked in other chronic conditions where people have increased inflammation or an over-activated, sympathetic nervous system, and we decided we wanted to emphasize interventions like mindfulness, coping strategies, and cognitive behavioral therapy.\u003c/p>\n\u003cp>The most important part of this recipe was bringing people with long COVID together into the same space so they could teach each other.\u003c/p>\n\u003ch3>\u003cstrong>What is causing long COVID-19?\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>Zackary Berger:\u003c/strong> We must understand long COVID as a multi-domain phenomenon. So there’s the individual body of the person that undergoes a variety of symptoms which can be really unique from person to person. Then there’s the social body; the collective. The collective is more than just the sum of individuals.\u003c/p>\n\u003cp>COVID has been a social phenomenon that has affected many groups in our society. So, COVID and long COVID acts on multiple levels at once, which makes it hard to define and to treat. This means that these symptoms of long COVID are exacerbated by social phenomena, which people tend to overlook as outside the realm of medicine, and that’s completely false. 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"info": "KQED’s new podcast, Bay Curious, gets to the bottom of the mysteries — both profound and peculiar — that give the Bay Area its unique identity. And we’ll do it with your help! You ask the questions. You decide what Bay Curious investigates. And you join us on the journey to find the answers.",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Bay-Curious-Podcast-Tile-703x703-1.jpg",
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"officialWebsiteLink": "/news/series/baycurious",
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"source": "kqed",
"order": 3
},
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}
},
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"id": "bbc-world-service",
"title": "BBC World Service",
"info": "The day's top stories from BBC News compiled twice daily in the week, once at weekends.",
"airtime": "MON-FRI 9pm-10pm, TUE-FRI 1am-2am",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/BBC-World-Service-Podcast-Tile-360x360-1.jpg",
"officialWebsiteLink": "https://www.bbc.co.uk/sounds/play/live:bbc_world_service",
"meta": {
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"source": "BBC World Service"
},
"link": "/radio/program/bbc-world-service",
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"rss": "https://podcasts.files.bbci.co.uk/p02nq0gn.rss"
}
},
"californiareport": {
"id": "californiareport",
"title": "The California Report",
"tagline": "California, day by day",
"info": "KQED’s statewide radio news program providing daily coverage of issues, trends and public policy decisions.",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/The-California-Report-Podcast-Tile-703x703-1.jpg",
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"officialWebsiteLink": "/californiareport",
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"source": "kqed",
"order": 8
},
"link": "/californiareport",
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}
},
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"title": "The California Report Magazine",
"tagline": "Your state, your stories",
"info": "Every week, The California Report Magazine takes you on a road trip for the ears: to visit the places and meet the people who make California unique. The in-depth storytelling podcast from the California Report.",
"airtime": "FRI 4:30pm-5pm, 6:30pm-7pm, 11pm-11:30pm",
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"officialWebsiteLink": "/californiareportmagazine",
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"order": 10
},
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"google": "https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM3NjkwNjk1OTAz",
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},
"city-arts": {
"id": "city-arts",
"title": "City Arts & Lectures",
"info": "A one-hour radio program to hear celebrated writers, artists and thinkers address contemporary ideas and values, often discussing the creative process. Please note: tapes or transcripts are not available",
"imageSrc": "https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/05/cityartsandlecture-300x300.jpg",
"officialWebsiteLink": "https://www.cityarts.net/",
"airtime": "SUN 1pm-2pm, TUE 10pm, WED 1am",
"meta": {
"site": "news",
"source": "City Arts & Lectures"
},
"link": "https://www.cityarts.net",
"subscribe": {
"tuneIn": "https://tunein.com/radio/City-Arts-and-Lectures-p692/",
"rss": "https://www.cityarts.net/feed/"
}
},
"closealltabs": {
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"info": "Close All Tabs breaks down how digital culture shapes our world through thoughtful insights and irreverent humor.",
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"officialWebsiteLink": "/podcasts/closealltabs",
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"source": "kqed",
"order": 1
},
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"id": "code-switch-life-kit",
"title": "Code Switch / Life Kit",
"info": "\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />",
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"meta": {
"site": "radio",
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},
"link": "/radio/program/code-switch-life-kit",
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},
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"id": "commonwealth-club",
"title": "Commonwealth Club of California Podcast",
"info": "The Commonwealth Club of California is the nation's oldest and largest public affairs forum. As a non-partisan forum, The Club brings to the public airwaves diverse viewpoints on important topics. The Club's weekly radio broadcast - the oldest in the U.S., dating back to 1924 - is carried across the nation on public radio stations and is now podcasting. Our website archive features audio of our recent programs, as well as selected speeches from our long and distinguished history. This podcast feed is usually updated twice a week and is always un-edited.",
"airtime": "THU 10pm, FRI 1am",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Commonwealth-Club-Podcast-Tile-360x360-1.jpg",
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"meta": {
"site": "news",
"source": "Commonwealth Club of California"
},
"link": "/radio/program/commonwealth-club",
"subscribe": {
"apple": "https://itunes.apple.com/us/podcast/commonwealth-club-of-california-podcast/id976334034?mt=2",
"google": "https://podcasts.google.com/feed/aHR0cDovL3d3dy5jb21tb253ZWFsdGhjbHViLm9yZy9hdWRpby9wb2RjYXN0L3dlZWtseS54bWw",
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},
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"id": "forum",
"title": "Forum",
"tagline": "The conversation starts here",
"info": "KQED’s live call-in program discussing local, state, national and international issues, as well as in-depth interviews.",
"airtime": "MON-FRI 9am-11am, 10pm-11pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Forum-Podcast-Tile-703x703-1.jpg",
"imageAlt": "KQED Forum with Mina Kim and Alexis Madrigal",
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"meta": {
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"source": "kqed",
"order": 9
},
"link": "/forum",
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"google": "https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM5NTU3MzgxNjMz",
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"freakonomics-radio": {
"id": "freakonomics-radio",
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"imageSrc": "https://ww2.kqed.org/news/wp-content/uploads/sites/10/2018/05/freakonomicsRadio.png",
"officialWebsiteLink": "http://freakonomics.com/",
"airtime": "SUN 1am-2am, SAT 3pm-4pm",
"meta": {
"site": "radio",
"source": "WNYC"
},
"link": "/radio/program/freakonomics-radio",
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"apple": "https://itunes.apple.com/us/podcast/freakonomics-radio/id354668519",
"tuneIn": "https://tunein.com/podcasts/WNYC-Podcasts/Freakonomics-Radio-p272293/",
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},
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"id": "fresh-air",
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"link": "/radio/program/fresh-air",
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"apple": "https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=214089682&at=11l79Y&ct=nprdirectory",
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"info": "A live production of NPR and WBUR Boston, in collaboration with stations across the country, Here & Now reflects the fluid world of news as it's happening in the middle of the day, with timely, in-depth news, interviews and conversation. Hosted by Robin Young, Jeremy Hobson and Tonya Mosley.",
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},
"hidden-brain": {
"id": "hidden-brain",
"title": "Hidden Brain",
"info": "Shankar Vedantam uses science and storytelling to reveal the unconscious patterns that drive human behavior, shape our choices and direct our relationships.",
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"airtime": "SUN 7pm-8pm",
"meta": {
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"source": "NPR"
},
"link": "/radio/program/hidden-brain",
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},
"how-i-built-this": {
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"title": "How I Built This with Guy Raz",
"info": "Guy Raz dives into the stories behind some of the world's best known companies. How I Built This weaves a narrative journey about innovators, entrepreneurs and idealists—and the movements they built.",
"imageSrc": "https://ww2.kqed.org/news/wp-content/uploads/sites/10/2018/05/howIBuiltThis.png",
"officialWebsiteLink": "https://www.npr.org/podcasts/510313/how-i-built-this",
"airtime": "SUN 7:30pm-8pm",
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"source": "npr"
},
"link": "/radio/program/how-i-built-this",
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"apple": "https://itunes.apple.com/us/podcast/how-i-built-this-with-guy-raz/id1150510297?mt=2",
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},
"hyphenacion": {
"id": "hyphenacion",
"title": "Hyphenación",
"tagline": "Where conversation and cultura meet",
"info": "What kind of no sabo word is Hyphenación? For us, it’s about living within a hyphenation. Like being a third-gen Mexican-American from the Texas border now living that Bay Area Chicano life. Like Xorje! Each week we bring together a couple of hyphenated Latinos to talk all about personal life choices: family, careers, relationships, belonging … everything is on the table. ",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2025/03/Hyphenacion_FinalAssets_PodcastTile.png",
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"officialWebsiteLink": "/podcasts/hyphenacion",
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"order": 15
},
"link": "/podcasts/hyphenacion",
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},
"jerrybrown": {
"id": "jerrybrown",
"title": "The Political Mind of Jerry Brown",
"tagline": "Lessons from a lifetime in politics",
"info": "The Political Mind of Jerry Brown brings listeners the wisdom of the former Governor, Mayor, and presidential candidate. Scott Shafer interviewed Brown for more than 40 hours, covering the former governor's life and half-century in the political game – and Brown has some lessons he'd like to share. ",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/The-Political-Mind-of-Jerry-Brown-Podcast-Tile-703x703-1.jpg",
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"officialWebsiteLink": "/podcasts/jerrybrown",
"meta": {
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"source": "kqed",
"order": 18
},
"link": "/podcasts/jerrybrown",
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}
},
"latino-usa": {
"id": "latino-usa",
"title": "Latino USA",
"airtime": "MON 1am-2am, SUN 6pm-7pm",
"info": "Latino USA, the radio journal of news and culture, is the only national, English-language radio program produced from a Latino perspective.",
"imageSrc": "https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/latinoUsa.jpg",
"officialWebsiteLink": "http://latinousa.org/",
"meta": {
"site": "news",
"source": "npr"
},
"link": "/radio/program/latino-usa",
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"apple": "https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=79681317&at=11l79Y&ct=nprdirectory",
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"rss": "https://feeds.npr.org/510016/podcast.xml"
}
},
"marketplace": {
"id": "marketplace",
"title": "Marketplace",
"info": "Our flagship program, helmed by Kai Ryssdal, examines what the day in money delivered, through stories, conversations, newsworthy numbers and more. Updated Monday through Friday at about 3:30 p.m. PT.",
"airtime": "MON-FRI 4pm-4:30pm, MON-WED 6:30pm-7pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Marketplace-Podcast-Tile-360x360-1.jpg",
"officialWebsiteLink": "https://www.marketplace.org/",
"meta": {
"site": "news",
"source": "American Public Media"
},
"link": "/radio/program/marketplace",
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"rss": "https://feeds.publicradio.org/public_feeds/marketplace-pm/rss/rss"
}
},
"masters-of-scale": {
"id": "masters-of-scale",
"title": "Masters of Scale",
"info": "Masters of Scale is an original podcast in which LinkedIn co-founder and Greylock Partner Reid Hoffman sets out to describe and prove theories that explain how great entrepreneurs take their companies from zero to a gazillion in ingenious fashion.",
"airtime": "Every other Wednesday June 12 through October 16 at 8pm (repeats Thursdays at 2am)",
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"officialWebsiteLink": "https://mastersofscale.com/",
"meta": {
"site": "radio",
"source": "WaitWhat"
},
"link": "/radio/program/masters-of-scale",
"subscribe": {
"apple": "http://mastersofscale.app.link/",
"rss": "https://rss.art19.com/masters-of-scale"
}
},
"mindshift": {
"id": "mindshift",
"title": "MindShift",
"tagline": "A podcast about the future of learning and how we raise our kids",
"info": "The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg",
"imageAlt": "KQED MindShift: How We Will Learn",
"officialWebsiteLink": "/mindshift/",
"meta": {
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"source": "kqed",
"order": 12
},
"link": "/podcasts/mindshift",
"subscribe": {
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"google": "https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5",
"npr": "https://www.npr.org/podcasts/464615685/mind-shift-podcast",
"stitcher": "https://www.stitcher.com/podcast/kqed/stories-teachers-share",
"spotify": "https://open.spotify.com/show/0MxSpNYZKNprFLCl7eEtyx"
}
},
"morning-edition": {
"id": "morning-edition",
"title": "Morning Edition",
"info": "\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. Hosts Steve Inskeep, David Greene and Rachel Martin bring you the latest breaking news and features to prepare you for the day.",
"airtime": "MON-FRI 3am-9am",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Morning-Edition-Podcast-Tile-360x360-1.jpg",
"officialWebsiteLink": "https://www.npr.org/programs/morning-edition/",
"meta": {
"site": "news",
"source": "npr"
},
"link": "/radio/program/morning-edition"
},
"onourwatch": {
"id": "onourwatch",
"title": "On Our Watch",
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