Latest news with #Seeger
Time of India
19 hours ago
- Health
- Time of India
NIH cuts spotlight a hidden crisis facing patients with experimental brain implants
Carol Seeger finally escaped her debilitating depression with an experimental treatment that placed electrodes in her brain and a pacemaker-like device in her chest. But when its batteries stopped working, insurance wouldn't pay to fix the problem and she sank back into a dangerous darkness. She worried for her life, asking herself: "Why am I putting myself through this?" Seeger 's predicament highlights a growing problem for hundreds of people with experimental neural implants, including those for depression, quadriplegia and other conditions. Although these patients take big risks to advance science, there's no guarantee that their devices will be maintained - particularly after they finish participating in clinical trials - and no mechanism requiring companies or insurers to do so. A research project led by Gabriel Lazaro-Munoz, a Harvard University scientist, aimed to change that by creating partnerships between players in the burgeoning implant field to overcome barriers to device access and follow-up care. But the cancellation of hundreds of National Institutes of Health grants by the Trump administration this year left the project in limbo, dimming hope for Seeger and others like her who wonder what will happen to their health and progress. An ethical quagmire Unlike medications, implanted devices often require parts, maintenance, batteries and surgeries when changes are needed. Insurance typically covers such expenses for federally approved devices considered medically necessary, but not experimental ones. A procedure to replace a battery alone can cost more than $15,000 without insurance, Lazaro-Munoz said. While companies stand to profit from research, "there's really nothing that helps ensure that device manufacturers have to provide any of these parts or cover any kind of maintenance," said Lazaro-Munoz. Some companies also move on to newer versions of devices or abandon the research altogether, which can leave patients in an uncertain place. Medtronic, the company that made the deep brain stimulation, or DBS, technology Seeger used, said in a statement that every study is different and that the company puts patient safety first when considering care after studies end. People consider various possibilities when they join a clinical trial. The Food and Drug Administration requires the informed consent process to include a description of "reasonably foreseeable risks and discomforts to the participant," a spokesperson said. However, the FDA doesn't require trial plans to include procedures for long-term device follow-up and maintenance, although the spokesperson stated that the agency has requested those in the past. While some informed consent forms say devices will be removed at a study's end, Lazaro-Munoz said removal is ethically problematic when a device is helping a patient. Plus, he said, some trial participants told him and his colleagues that they didn't remember everything discussed during the consent process, partly because they were so focused on getting better. Brandy Ellis , a 49-year-old in Boynton Beach, Florida, said she was desperate for healing when she joined a trial testing the same treatment Seeger got, which delivers an electrical current into the brain to treat severe depression. She was willing to sign whatever forms were necessary to get help after nothing else had worked. "I was facing death," she said. "So it was most definitely consent at the barrel of a gun, which is true for a lot of people who are in a terminal condition." Patients risk losing a treatment of last resort Ellis and Seeger, 64, both turned to DBS as a last resort after trying many approved medications and treatments. "I got in the trial fully expecting it not to work because nothing else had. So I was kind of surprised when it did," said Ellis, whose device was implanted in 2011 at Emory University in Atlanta. "I am celebrating every single milestone because I'm like: This is all bonus life for me." She's now on her third battery. She needed surgery to replace two single-use ones, and the one she has now is rechargeable. She's lucky her insurance has covered the procedures, she said, but she worries it may not in the future. "I can't count on any coverage because there's nothing that says even though I've had this and it works, that it has to be covered under my commercial or any other insurance," said Ellis, who advocates for other former trial participants. Even if companies still make replacement parts for older devices, she added, "availability and accessibility are entirely different things," given most people can't afford continued care without insurance coverage. Seeger, whose device was implanted in 2012 at Emory, said she went without a working device for around four months when the insurance coverage her wife's job at Emory provided wouldn't pay for battery replacement surgery. Neither would Medicare, which generally only covers DBS for FDA-approved uses. With her research team at Emory advocating for her, Seeger ultimately got financial help from the hospital's indigent care program and paid a few thousand dollars out of pocket. She now has a rechargeable battery, and the device has been working well. But at any point, she said, that could change. Federal cuts stall solutions Lazaro-Munoz hoped his work would protect people like Seeger and Ellis. "We should do whatever we can as a society to be able to help them maintain their health," he said. Lazaro-Munoz's project received about $987,800 from the National Institute of Mental Health in the 2023 and 2024 fiscal years and was already underway when he was notified of the NIH funding cut in May. He declined to answer questions about it. Ellis said any delay in addressing the thorny issues around experimental brain devices hurts patients. Planning at the beginning of a clinical trial about how to continue treatment and maintain devices, she said, would be much better than depending on the kindness of researchers and the whims of insurers. "If this turns off, I get sick again. Like, I'm not cured," she said. "This is a treatment that absolutely works, but only as long as I've got a working device."
Winnipeg Free Press
3 days ago
- Health
- Winnipeg Free Press
NIH cuts spotlight a hidden crisis facing patients with experimental brain implants
Carol Seeger finally escaped her debilitating depression with an experimental treatment that placed electrodes in her brain and a pacemaker-like device in her chest. But when its batteries stopped working, insurance wouldn't pay to fix the problem and she sank back into a dangerous darkness. She worried for her life, asking herself: 'Why am I putting myself through this?' Seeger's predicament highlights a growing problem for hundreds of people with experimental neural implants, including those for depression, quadriplegia and other conditions. Although these patients take big risks to advance science, there's no guarantee that their devices will be maintained — particularly after they finish participating in clinical trials — and no mechanism requiring companies or insurers to do so. A research project led by Gabriel Lázaro-Muñoz, a Harvard University scientist, aimed to change that by creating partnerships between players in the burgeoning implant field to overcome barriers to device access and follow-up care. But the cancellation of hundreds of National Institutes of Health grants by the Trump administration this year left the project in limbo, dimming hope for Seeger and others like her who wonder what will happen to their health and progress. An ethical quagmire Unlike medications, implanted devices often require parts, maintenance, batteries and surgeries when changes are needed. Insurance typically covers such expenses for federally approved devices considered medically necessary, but not experimental ones. A procedure to replace a battery alone can cost more than $15,000 without insurance, Lázaro-Muñoz said. While companies stand to profit from research, 'there's really nothing that helps ensure that device manufacturers have to provide any of these parts or cover any kind of maintenance,' said Lázaro-Muñoz. Some companies also move on to newer versions of devices or abandon the research altogether, which can leave patients in an uncertain place. Medtronic, the company that made the deep brain stimulation, or DBS, technology Seeger used, said in a statement that every study is different and that the company puts patient safety first when considering care after studies end. People consider various possibilities when they join a clinical trial. The Food and Drug Administration requires the informed consent process to include a description of 'reasonably foreseeable risks and discomforts to the participant,' a spokesperson said. However, the FDA doesn't require trial plans to include procedures for long-term device follow-up and maintenance, although the spokesperson stated that the agency has requested those in the past. While some informed consent forms say devices will be removed at a study's end, Lázaro-Muñoz said removal is ethically problematic when a device is helping a patient. Plus, he said, some trial participants told him and his colleagues that they didn't remember everything discussed during the consent process, partly because they were so focused on getting better. Brandy Ellis, a 49-year-old in Boynton Beach, Florida, said she was desperate for healing when she joined a trial testing the same treatment Seeger got, which delivers an electrical current into the brain to treat severe depression. She was willing to sign whatever forms were necessary to get help after nothing else had worked. 'I was facing death,' she said. 'So it was most definitely consent at the barrel of a gun, which is true for a lot of people who are in a terminal condition.' Patients risk losing a treatment of last resort Ellis and Seeger, 64, both turned to DBS as a last resort after trying many approved medications and treatments. 'I got in the trial fully expecting it not to work because nothing else had. So I was kind of surprised when it did,' said Ellis, whose device was implanted in 2011 at Emory University in Atlanta. 'I am celebrating every single milestone because I'm like: This is all bonus life for me.' She's now on her third battery. She needed surgery to replace two single-use ones, and the one she has now is rechargeable. She's lucky her insurance has covered the procedures, she said, but she worries it may not in the future. 'I can't count on any coverage because there's nothing that says even though I've had this and it works, that it has to be covered under my commercial or any other insurance,' said Ellis, who advocates for other former trial participants. Even if companies still make replacement parts for older devices, she added, 'availability and accessibility are entirely different things,' given most people can't afford continued care without insurance coverage. Seeger, whose device was implanted in 2012 at Emory, said she went without a working device for around four months when the insurance coverage her wife's job at Emory provided wouldn't pay for battery replacement surgery. Neither would Medicare, which generally only covers DBS for FDA-approved uses. With her research team at Emory advocating for her, Seeger ultimately got financial help from the hospital's indigent care program and paid a few thousand dollars out of pocket. She now has a rechargeable battery, and the device has been working well. But at any point, she said, that could change. Federal cuts stall solutions Lázaro-Muñoz hoped his work would protect people like Seeger and Ellis. 'We should do whatever we can as a society to be able to help them maintain their health,' he said. Lázaro-Muñoz's project received about $987,800 from the National Institute of Mental Health in the 2023 and 2024 fiscal years and was already underway when he was notified of the NIH funding cut in May. He declined to answer questions about it. Ellis said any delay in addressing the thorny issues around experimental brain devices hurts patients. Planning at the beginning of a clinical trial about how to continue treatment and maintain devices, she said, would be much better than depending on the kindness of researchers and the whims of insurers. 'If this turns off, I get sick again. Like, I'm not cured,' she said. 'This is a treatment that absolutely works, but only as long as I've got a working device.' ____ The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute's Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.
Hamilton Spectator
3 days ago
- Health
- Hamilton Spectator
NIH cuts spotlight a hidden crisis facing patients with experimental brain implants
Carol Seeger finally escaped her debilitating depression with an experimental treatment that placed electrodes in her brain and a pacemaker-like device in her chest. But when its batteries stopped working, insurance wouldn't pay to fix the problem and she sank back into a dangerous darkness. She worried for her life, asking herself: 'Why am I putting myself through this?' Seeger's predicament highlights a growing problem for hundreds of people with experimental neural implants, including those for depression, quadriplegia and other conditions. Although these patients take big risks to advance science, there's no guarantee that their devices will be maintained — particularly after they finish participating in clinical trials — and no mechanism requiring companies or insurers to do so. A research project led by Gabriel Lázaro-Muñoz, a Harvard University scientist, aimed to change that by creating partnerships between players in the burgeoning implant field to overcome barriers to device access and follow-up care. But the cancellation of hundreds of National Institutes of Health grants by the Trump administration this year left the project in limbo, dimming hope for Seeger and others like her who wonder what will happen to their health and progress. An ethical quagmire Unlike medications, implanted devices often require parts, maintenance, batteries and surgeries when changes are needed. Insurance typically covers such expenses for federally approved devices considered medically necessary, but not experimental ones. A procedure to replace a battery alone can cost more than $15,000 without insurance, Lázaro-Muñoz said. While companies stand to profit from research, 'there's really nothing that helps ensure that device manufacturers have to provide any of these parts or cover any kind of maintenance,' said Lázaro-Muñoz. Some companies also move on to newer versions of devices or abandon the research altogether, which can leave patients in an uncertain place. Medtronic, the company that made the deep brain stimulation, or DBS, technology Seeger used, said in a statement that every study is different and that the company puts patient safety first when considering care after studies end. People consider various possibilities when they join a clinical trial. The Food and Drug Administration requires the informed consent process to include a description of 'reasonably foreseeable risks and discomforts to the participant,' a spokesperson said. However, the FDA doesn't require trial plans to include procedures for long-term device follow-up and maintenance, although the spokesperson stated that the agency has requested those in the past. While some informed consent forms say devices will be removed at a study's end, Lázaro-Muñoz said removal is ethically problematic when a device is helping a patient. Plus, he said, some trial participants told him and his colleagues that they didn't remember everything discussed during the consent process, partly because they were so focused on getting better. Brandy Ellis, a 49-year-old in Boynton Beach, Florida, said she was desperate for healing when she joined a trial testing the same treatment Seeger got, which delivers an electrical current into the brain to treat severe depression. She was willing to sign whatever forms were necessary to get help after nothing else had worked. 'I was facing death,' she said. 'So it was most definitely consent at the barrel of a gun, which is true for a lot of people who are in a terminal condition.' Patients risk losing a treatment of last resort Ellis and Seeger, 64, both turned to DBS as a last resort after trying many approved medications and treatments . 'I got in the trial fully expecting it not to work because nothing else had. So I was kind of surprised when it did,' said Ellis, whose device was implanted in 2011 at Emory University in Atlanta. 'I am celebrating every single milestone because I'm like: This is all bonus life for me.' She's now on her third battery. She needed surgery to replace two single-use ones, and the one she has now is rechargeable. She's lucky her insurance has covered the procedures, she said, but she worries it may not in the future. 'I can't count on any coverage because there's nothing that says even though I've had this and it works, that it has to be covered under my commercial or any other insurance,' said Ellis, who advocates for other former trial participants. Even if companies still make replacement parts for older devices, she added, 'availability and accessibility are entirely different things,' given most people can't afford continued care without insurance coverage. Seeger, whose device was implanted in 2012 at Emory, said she went without a working device for around four months when the insurance coverage her wife's job at Emory provided wouldn't pay for battery replacement surgery. Neither would Medicare, which generally only covers DBS for FDA-approved uses. With her research team at Emory advocating for her, Seeger ultimately got financial help from the hospital's indigent care program and paid a few thousand dollars out of pocket. She now has a rechargeable battery, and the device has been working well. But at any point, she said, that could change. Federal cuts stall solutions Lázaro-Muñoz hoped his work would protect people like Seeger and Ellis. 'We should do whatever we can as a society to be able to help them maintain their health,' he said. Lázaro-Muñoz's project received about $987,800 from the National Institute of Mental Health in the 2023 and 2024 fiscal years and was already underway when he was notified of the NIH funding cut in May. He declined to answer questions about it. Ellis said any delay in addressing the thorny issues around experimental brain devices hurts patients. Planning at the beginning of a clinical trial about how to continue treatment and maintain devices, she said, would be much better than depending on the kindness of researchers and the whims of insurers. 'If this turns off, I get sick again. Like, I'm not cured,' she said. 'This is a treatment that absolutely works, but only as long as I've got a working device.' ____ The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute's Department of Science Education and the Robert Wood Johnson Foundation. The AP is solely responsible for all content.
San Francisco Chronicle
3 days ago
- Health
- San Francisco Chronicle
NIH cuts spotlight a hidden crisis facing patients with experimental brain implants
Carol Seeger finally escaped her debilitating depression with an experimental treatment that placed electrodes in her brain and a pacemaker-like device in her chest. But when its batteries stopped working, insurance wouldn't pay to fix the problem and she sank back into a dangerous darkness. She worried for her life, asking herself: 'Why am I putting myself through this?' Seeger's predicament highlights a growing problem for hundreds of people with experimental neural implants, including those for depression, quadriplegia and other conditions. Although these patients take big risks to advance science, there's no guarantee that their devices will be maintained — particularly after they finish participating in clinical trials — and no mechanism requiring companies or insurers to do so. A research project led by Gabriel Lázaro-Muñoz, a Harvard University scientist, aimed to change that by creating partnerships between players in the burgeoning implant field to overcome barriers to device access and follow-up care. But the cancellation of hundreds of National Institutes of Health grants by the Trump administration this year left the project in limbo, dimming hope for Seeger and others like her who wonder what will happen to their health and progress. An ethical quagmire Unlike medications, implanted devices often require parts, maintenance, batteries and surgeries when changes are needed. Insurance typically covers such expenses for federally approved devices considered medically necessary, but not experimental ones. A procedure to replace a battery alone can cost more than $15,000 without insurance, Lázaro-Muñoz said. While companies stand to profit from research, 'there's really nothing that helps ensure that device manufacturers have to provide any of these parts or cover any kind of maintenance,' said Lázaro-Muñoz. Some companies also move on to newer versions of devices or abandon the research altogether, which can leave patients in an uncertain place. Medtronic, the company that made the deep brain stimulation, or DBS, technology Seeger used, said in a statement that every study is different and that the company puts patient safety first when considering care after studies end. People consider various possibilities when they join a clinical trial. The Food and Drug Administration requires the informed consent process to include a description of 'reasonably foreseeable risks and discomforts to the participant,' a spokesperson said. However, the FDA doesn't require trial plans to include procedures for long-term device follow-up and maintenance, although the spokesperson stated that the agency has requested those in the past. While some informed consent forms say devices will be removed at a study's end, Lázaro-Muñoz said removal is ethically problematic when a device is helping a patient. Plus, he said, some trial participants told him and his colleagues that they didn't remember everything discussed during the consent process, partly because they were so focused on getting better. Brandy Ellis, a 49-year-old in Boynton Beach, Florida, said she was desperate for healing when she joined a trial testing the same treatment Seeger got, which delivers an electrical current into the brain to treat severe depression. She was willing to sign whatever forms were necessary to get help after nothing else had worked. 'I was facing death,' she said. 'So it was most definitely consent at the barrel of a gun, which is true for a lot of people who are in a terminal condition.' Patients risk losing a treatment of last resort Ellis and Seeger, 64, both turned to DBS as a last resort after trying many approved medications and treatments. 'I got in the trial fully expecting it not to work because nothing else had. So I was kind of surprised when it did,' said Ellis, whose device was implanted in 2011 at Emory University in Atlanta. 'I am celebrating every single milestone because I'm like: This is all bonus life for me.' She's now on her third battery. She needed surgery to replace two single-use ones, and the one she has now is rechargeable. She's lucky her insurance has covered the procedures, she said, but she worries it may not in the future. 'I can't count on any coverage because there's nothing that says even though I've had this and it works, that it has to be covered under my commercial or any other insurance,' said Ellis, who advocates for other former trial participants. Even if companies still make replacement parts for older devices, she added, 'availability and accessibility are entirely different things,' given most people can't afford continued care without insurance coverage. Seeger, whose device was implanted in 2012 at Emory, said she went without a working device for around four months when the insurance coverage her wife's job at Emory provided wouldn't pay for battery replacement surgery. Neither would Medicare, which generally only covers DBS for FDA-approved uses. With her research team at Emory advocating for her, Seeger ultimately got financial help from the hospital's indigent care program and paid a few thousand dollars out of pocket. She now has a rechargeable battery, and the device has been working well. But at any point, she said, that could change. Federal cuts stall solutions Lázaro-Muñoz hoped his work would protect people like Seeger and Ellis. 'We should do whatever we can as a society to be able to help them maintain their health,' he said. Lázaro-Muñoz's project received about $987,800 from the National Institute of Mental Health in the 2023 and 2024 fiscal years and was already underway when he was notified of the NIH funding cut in May. He declined to answer questions about it. Ellis said any delay in addressing the thorny issues around experimental brain devices hurts patients. Planning at the beginning of a clinical trial about how to continue treatment and maintain devices, she said, would be much better than depending on the kindness of researchers and the whims of insurers. 'If this turns off, I get sick again. Like, I'm not cured,' she said. 'This is a treatment that absolutely works, but only as long as I've got a working device.'
Yahoo
15-05-2025
- Entertainment
- Yahoo
Folk music legend loving life in 'iconic' village
"I rent in an iconic village in south east Oxford and I've become part of the community." Folk music legend Peggy Seeger, 89, is about to hit the road for one last tour of the UK and Ireland with her 25th solo album Teleology. She said while she misses the stage, she now enjoys walks in Iffley, Oxfordshire, where she has been living since 2013. After more than 70 years of music-making and activism, Seeger said she "never tried to be famous" but just "do what I do, as good as possible". "I've had some absolutely wonderful feedback from people and they seem to really know how to listen to it because it's not an easy album," she said of her latest album. Teleology contains nine new songs and two reinterpretations, one of which is The First Time Ever I Saw Your Face - a timeless love song that folk singer, broadcaster and activist Ewan MacColl wrote for her in 1956. The pair went on to make more than 40 albums together, marry and have children. She said: "It's a strange thing because people think that my husband and I both fell disastrously in love with each other, but we didn't. "I ran away from him for three years, he was not my idea of what I wanted to do with my life." But despite her resistance and a 20-year age difference, they got together and Seeger said the truth about it was written in her memoir. "The first kiss I got from him just curled my toes," she said. Peggy Seeger on her husband Ewan MacColl Peggy Seeger: The First Time Ever I Saw Your Face How Folk Songs Should Be Sung But in a Radio 4 interview, she said she had become "weary" of talking about the past. After MacColl's death in 1989, she moved back to America where she decided that "really, my true home where I wanted to live until I die, was the UK". "My children and my grandchildren are here and I know this country better than I know the United States," she said. "I love this country - all four nations of it." She said that in Iffley, it was the "first time I've been really part of a community", adding: "I'm now on the village committee and my job is to raise money." She also continues to be involved in environmental concerns, joining a campaign against building on two green fields. She has made a film called The Mother, which she said will be shown around Oxford "because it's important to save as much of Oxford's green land that we can". Seeger said she "loves" walking along the River Thames, going down to the Iffley lock, meeting "some absolutely wonderful friends" and visiting the village shop. "But I don't get up to much in Oxford because I'm not very fit," she said. "I love the Christ Church garden but, generally, I will go outside of Oxford because I can't park [in the city], so I'll maybe go out to Waterperry Gardens or drive up to Burford." Seeger said her upcoming tour "is going to be fabulous". She said: "Part of it grieves me because there's going to be so many friends there and I won't have time to see them. "I miss the stage but I'm not physically up to it anymore." Her message to budding musicians, she said, would be: "Examine your reasons. "It's almost impossible to make living from it - venues closed down one after the other when Covid hit ... the competition is fierce and you have to really be something different to capture the audience." Seeger said that when she came to the UK, she had "the right combination of who I was". "I was female, young, reasonably good-looking," she said. "I was American and I played a longneck banjo and I was greeted by one of the main folklorists in the world. "I've never tried to be famous, I don't want to be, I just want to do what I do as good as possible." You can follow BBC Oxfordshire on Facebook, X (Twitter), or Instagram. Fishing industry play inspired by 1960s radio show Folk anthem's lost verse to be revealed after 75 years The trespass and the folk legend
