The deadly cost of long Covid

Presented by PhRMA: Delivered daily by 10 a.m., Pulse examines the latest news in health care politics and policy.

Dec 14, 2022 View in browser   By Krista Mahr and Daniel Payne Presented by Driving the Day A new report from the CDC has found at least 3,500 American deaths have been related to long Covid. | Go Nakamura/Getty Images LONG COVID'S TOLL — More than 3,500 Americans have died due, at least in part, to long Covid , according to new data from the CDC released early this morning, Krista reports. The new analysis, published by the CDC's Center for National Health Statistics , found that 3,544 death certificates between January 2020 and June 2022 listed Covid-19 as a cause of death in addition to citing such terms as "chronic Covid" or "long haul Covid." The report also found that the vast majority — or 78.5 percent — of the deaths attributed to long Covid were among white Americans. Black people accounted for just over 10 percent of long Covid deaths, and Hispanic people accounted for nearly 8 percent, despite those groups having higher rates of Covid-19 infection and death than white Americans over the pandemic's course. Why it matters: The window into long Covid mortality, while comprising less than 1 percent of Covid-19 deaths, is the latest evidence of the ongoing threat that the complex, hard-to-diagnose condition poses to Americans' health and the stressed U.S. health care system even as Biden administration officials say Covid-19 will continue to circulate for years to come. It also raises important questions about who can access care for a condition that impacts as many as 23 million Americans. A death can be attributed to long Covid only if a patient is diagnosed with having it. And though a recent CDC National Center for Health Statistics survey found nearly one in five U.S. adults who say they've had Covid-19 also have long Covid symptoms, it remains prohibitively difficult for patients to get treatment for the condition. Doctors say that's due to low levels of awareness about the condition, lack of funding for specialized clinics and the time-consuming process of getting diagnosed and treated for a condition that can have dozens of symptoms. On the ground: The long Covid clinics that have cropped up across the country continue to have monthslong waiting lists for new patients. The relatively few patients who get treated are overwhelmingly white and affluent enough to be able to find the time to take off from work to go to multiple appointments or search online for care and support groups, doctors say. In primary care settings, many patients continue to face hurdles in getting doctors to believe that long Covid is a real problem. Doctors say the federal government could help by providing funding to support clinics and doing a better job of messaging patients and doctors about the condition. WELCOME TO WEDNESDAY PULSE — We are loving this nerdy gripe about the White Lotus finale: The birds singing in the Sicilian countryside are, evidently, North American hermit thrushes, nowhere to be found in Europe. Don't send us any spoilers because we haven't seen it yet, but keep those news and tips coming to kmahr@politico.com and dpayne@politico.com . TODAY ON OUR PULSE CHECK PODCAST , Ben Leonard talks with Krista about new data from the CDC that reports at least 3,500 Americans have died due, at least in part, to long Covid. Listen to today's Pulse Check podcast   A message from PhRMA: Costly out-of-pocket expenses tied to deductible and coinsurance requirements are a leading concern for patients with commercial insurance. These harmful practices put in place by insurers and pharmacy benefit managers (PBMs) are even causing patients to abandon their medicines. New IQVIA data break down how insurers and their PBMs are impacting how patients access and afford their medicines.   At the Agencies SAMHSA wants to make it easier for patients to access drugs that treat opioid use disorder. | Ted S. Warren/AP Photo SAMHSA MOVES ON BUPRENORPHINE — HHS' Substance Abuse and Mental Health Services Administration proposed to permanently allow the prescribing of buprenorphine to treat opioid use disorder via telehealth without requiring an in-person visit, POLITICO's Ben Leonard reports. SAMHSA issued a notice of proposed rulemaking that would allow certified opioid treatment programs to begin prescribing the drug via audio-only or video-enabled telehealth. If finalized, the rule would be a big win for advocates of virtual buprenorphine treatment, who have been pushing to make pandemic waivers allowing prescribing without an in-person visit permanent. GLOBAL HEALTH REORG AT STATE — The State Department notified Congress on Tuesday that it plans to establish a Bureau of Global Health Security and Diplomacy headed by Global AIDS Coordinator John Nkengasong, POLITICO's Carmen Paun reports. The bureau will bring together several offices that deal with global health issues: the Office of International Health and Biodefense, now part of the Bureau of Oceans and International Environmental and Scientific Affairs; the functions of the coordinator for global Covid-19 response and health security; and the Office of the U.S. Global AIDS Coordinator, which leads the President's Emergency Plan for AIDS Relief. The big picture: The reorganization marks a rethinking of how the State Department operates on global health security following the coronavirus pandemic. What's next: Congress has 15 days to raise objections. WHILE WE'RE ON THE SUBJECT … The GAO published a report this week on PEPFAR, which has provided more than $100 billion for combating HIV/AIDS worldwide since 2003. The report notes that while progress has been made to create better coordination between the State Department and federal officials implementing the program overseas, longstanding staff vacancies are creating problems. It found that 70 percent of the Office of the U.S. Global AIDS Coordinator and Health Diplomacy headquarters positions are open and nearly 90 percent of key overseas positions are filled on an "acting" basis only.   POLITICO AT CES 2023 : We are bringing a special edition of our Digital Future Daily newsletter to Las Vegas to cover CES 2023. The newsletter will take you inside the largest and most influential technology event on the planet, featuring every major and emerging industry in the technology ecosystem gathered in one place. The newsletter runs from Jan. 5-7 and will focus on the public policy related aspects of the event. Sign up today to receive exclusive coverage of CES 2023.     Public Health MATERNAL DEATH RATES HIGHER IN STATES WITH ABORTION BANS — A report published today by the Commonwealth Fund finds that individuals giving birth and their babies in states that have recently restricted abortion access have dramatically higher death rates than those in states where abortion is easily accessed. Among the key findings: — In 2020, maternal death rates were 62 percent higher across racial and ethnic groups in states with restrictive abortion laws than in states where abortions are accessible. — In 2019, infant mortality in the first 27 days was 30 percent higher in states with restrictions. — Between 2018 and 2020, death rates for women of reproductive age were 34 percent higher in abortion-restriction states.   A message from PhRMA:   In the States DESANTIS ASKS FOR VACCINE PROBE — Gov. Ron DeSantis on Tuesday asked the Florida Supreme Court to empanel a grand jury to investigate "wrongdoing" linked to Covid-19 vaccines , including spreading false and misleading claims about their efficacy, POLITICO's Arek Sarkissian reports. Most of the medical community, including the CDC, the FDA and Johns Hopkins, have emphasized that the Covid vaccine is safe and effective in preventing the virus and protecting against serious symptoms. But DeSantis said during a livestreamed round table discussion with Florida Surgeon General Joseph Ladapo that it's against Florida law to mislead the public, especially when it comes to drug safety. He sought to undermine the vaccine's efficacy and said vaccine manufacturers have made a fortune on Covid-19 mandates. In response to DeSantis, Sharon J. Castillo, a Pfizer spokesperson, wrote in an email that Pfizer's vaccine has been approved by regulatory agencies across the world and that authorizations "are based on robust and independent evaluation of the scientific data on quality, safety and efficacy." Officials with Moderna did not immediately respond to a request for comment.   JOIN THURSDAY FOR A CONVERSATION ON FAMILY CARE IN AMERICA : Family caregivers are among our most overlooked and under-supported groups in the United States. The Biden Administration's new national strategy for supporting family caregivers outlines nearly 350 actions the federal government is committed to taking. Who will deliver this strategy? How should different stakeholders divide the work? Join POLITICO on Dec. 15 to explore how federal action can improve the lives of those giving and receiving family care across America. REGISTER HERE .     Names in the News Kevin Segura is now special assistant in the office of global affairs at HHS. He most recently was an advance associate for the Office of the First Lady. What We're Reading The mpox public health emergency is due to expire , but the suffering is not, according to this op-ed in MedPage Today . The New York Times reports on why doctors continue to dismiss reports of women's pain from endometriosis , a chronic gynecological disease. And Moderna's cancer vaccine shows promise in an early study , The Wall Street Journal reports.   A message from PhRMA: Every day, patients at the pharmacy counter discover their commercial insurance coverage does not provide the level of access and affordability they need. New data from a study by IQVIA reveal the harmful practices of insurers and their pharmacy benefit managers (PBMs) can lead to significantly higher out-of-pocket costs for medicines — causing some patients to abandon their medicines completely.  Learn more.     Follow us on Twitter Dan Goldberg @dancgoldberg Katherine Ellen Foley @katherineefoley Lauren Gardner @Gardner_LM Ben Leonard @_BenLeonard_ David Lim @davidalim Krista Mahr @kristamahr Megan Messerly @meganmesserly Alice Miranda Ollstein @aliceollstein Carmen Paun @carmenpaun Megan R. Wilson @misswilson Daniel Payne @_daniel_payne Ruth Reader @RuthReader   Follow us

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