Latest news with #NationalMultipleSclerosisSociety
Khaleej Times
28-06-2025
- Health
- Khaleej Times
UAE: How extreme summer heat can trigger underlying diseases, worsen symptoms
Other than sunstroke or dehydration, soaring temperatures can set off a range of medical conditions that remain dormant or manageable in cooler weather. From neurological flare-ups to cardiovascular strain, doctors say intense heat can act as a powerful trigger, unmasking symptoms in people who may not even know they're at risk. Among the most vulnerable are individuals with multiple sclerosis (MS), a neurological condition that affects the central nervous system and has no known cure. It's estimated that 19 out of every 100,000 people in the UAE live with MS, and for them, the heat can be deeply disruptive. 'Studies show that between 60 and 80 percent of people with multiple sclerosis experience a worsening of symptoms such as fatigue, mobility issues, and visual disturbances when body temperature rises,' said Professor Anu Jacob, Director of Multiple Sclerosis and Autoimmune Neurology at Cleveland Clinic Abu Dhabi, and member of the National Multiple Sclerosis Society Medical Advisory Committee. 'This is worse in those with pre-existing impairment.' This phenomenon, known as Uhthoff's phenomenon, occurs when the rise in body temperature slows signal transmission in already damaged nerves. 'While the worsening of symptoms is not permanent, they can significantly impact a person's daily functioning and wellbeing. Symptoms usually improve by cooling down and resting. It is important to distinguish this from a true flare-up that usually lasts for more than 24 hours,' Jacob explained. To mitigate these effects, experts recommend staying hydrated, using cooling tools like vests and fans, avoiding peak heat hours, and adjusting routines to include rest periods. 'Hydration helps people with MS by supporting the body's natural cooling system, regulating internal temperature, and reducing the risk of heat-induced flare-ups. It also helps manage bladder function and cognitive performance,' said Jacob. The UAE has already made strides in creating more accessible environments for people with chronic conditions. 'The UAE is fortunate to already offer thoughtfully designed environments such as shaded public spaces and accessible indoor cooling zones; these features play a critical role in protecting people living with chronic conditions like MS,' he said. To build on this momentum, the National MS Society recently launched the Universal Design for Inclusion Programme, partnering with six leading UAE universities to engage students and faculty in developing accessibility-first solutions across campuses. Emergency physicians are also observing the toll of the heatwave on a broader scale. 'With rising temperatures, we're seeing a notable surge in heat-related cases in the emergency department, particularly dehydration, heat exhaustion, and in more severe instances, heat stroke and acute kidney injury,' said Dr Pradeep, Emergency Medicine Specialist at Medcare Royal Speciality Hospital in Al Qusais. 'Patients with chronic illnesses like multiple sclerosis (MS), heart disease and kidney disease are especially at risk. Heat can exacerbate fatigue and neurological symptoms in MS. In cardiac patients, the added strain on the heart due to dehydration and electrolyte imbalances can trigger serious complications. Similarly, those with impaired kidney function may struggle to regulate fluid and sodium levels, increasing the risk of acute kidney stress or failure,' he added. The ER team urges people to avoid outdoor activities between 11am and 4pm, wear breathable clothing, and ensure their indoor environment stays cool. 'In the event of a heat-related emergency such as confusion, fainting, rapid heartbeat or cessation of sweating, it's crucial to seek immediate medical help,' said Dr Pradeep. While adults are the primary focus of many public health alerts, children with chronic neurological conditions are also at risk. Layla, a mother of a 10-year-old boy with epilepsy, says she plans their entire summer around avoiding the Gulf's extreme heat. 'In the UAE summer, I wouldn't let him stay outdoors much, even though he wants to play and be active. His seizures get worse when he's overheated,' she said. 'For the past few years, we've made it a point to travel somewhere cooler every July or August, just so he can enjoy being outside without us constantly worrying.' Experts say early intervention and preventive habits are critical for vulnerable groups. As climate-related health challenges continue to rise globally, public awareness and inclusive city planning may become as essential as medicine itself.
Miami Herald
04-06-2025
- Business
- Miami Herald
Two patients faced chemo. The one survivor demanded a test to see if it was safe
JoEllen Zembruski-Ruple, while in the care of New York City's renowned Memorial Sloan Kettering Cancer Center, swallowed the first three chemotherapy pills to treat her squamous cell carcinoma on Jan. 29, her family members said. They didn't realize the drug could kill her. Six days later, Zembruski-Ruple went to Sloan Kettering's urgent care department to treat sores in her mouth and swelling around her eyes. The hospital diagnosed oral yeast infection and sent her home, her sister and partner said. Two days later, they said, she returned in agony — with severe diarrhea and vomiting — and was admitted. 'Enzyme deficiency,' Zembruski-Ruple texted a friend. The 65-year-old, a patient advocate who had worked for the National Multiple Sclerosis Society and other groups, would never go home. Covered in bruises and unable to swallow or talk, she eventually entered hospice care and died March 25 from the very drug that was supposed to extend her life, said her longtime partner, Richard Khavkine. Zembruski-Ruple was deficient in the enzyme that metabolizes capecitabine, the chemotherapy drug she took, said Khavkine and Susan Zembruski, one of her sisters. Zembruski-Ruple was among about 1,300 Americans each year who die from the toxic effects of that pill or its cousin, the IV drug fluorouracil known as 5-FU. Doctors can test for the deficiency — and then either switch drugs or lower the dosage if patients have a genetic variant that carries risk. The FDA approved an antidote in 2015, but it's expensive and must be administered within four days of the first chemotherapy treatment. Newer cancer drugs sometimes include a companion diagnostic to determine whether a drug works with an individual patient's genetics. But 5-FU went on the market in 1962 and sells for about $17 a dose; producers of its generic aren't seeking approval for toxicity tests, which typically cost hundreds of dollars. Doctors have only gradually understood which gene variants are dangerous in which patients, and how to deal with them, said Alan Venook, a colorectal and liver cancer specialist at the University of California-San Francisco. By the time Zembruski-Ruple's doctors told her she had the deficiency, she had been on the drug for eight days, said Khavkine, who watched over his partner with her sister throughout the seven-week ordeal. Khavkine said he 'would have asked for the test' if he had known about it, but added 'nobody told us about the possibility of this deficiency.' Zembruski-Ruple's sister also said she wasn't warned about the fatal risks of the chemo, or told about the test. 'They never said why they didn't test her,' Zembruski said. 'If the test existed, they should have said there is a test. If they said, 'Insurance won't cover it,' I would have said, 'Here's my credit card.' We should have known about it.' Guidance moves at a glacial pace Despite growing awareness of the deficiency, and an advocacy group made up of grieving friends and relatives who push for routine testing of all patients before they take the drug, the medical establishment has moved slowly. A panel of the National Comprehensive Cancer Network, or NCCN — specialists from Sloan Kettering and other top research centers — until recently did not recommend testing, and the FDA does not require it. In response to a query from KFF Health News about its policy, Sloan Kettering spokesperson Courtney Nowak said the hospital treats patients 'in accordance with NCCN guidelines.' She said the hospital would not discuss a patient's care. On Jan. 24, the FDA issued a warning about the enzyme deficiency in which it urged health care providers to 'inform patients prior to treatment' about the risks of taking 5-FU and capecitabine. On March 31 — six days after Zembruski-Ruple's death — the network's expert panel for most gastrointestinal cancers took a first step toward recommending testing for the deficiency. Worried that President Donald Trump's FDA might do nothing, Venook said, the panel — whose guidance shapes the practices of oncologists and health insurers — recommended that doctors consider testing before dosing patients with 5-FU or capecitabine. However, its guidance stated that 'no specific test is recommended at this time,' citing a lack of data to 'inform dose adjustments.' Sloan Kettering 'will consider this guidance in developing personalized treatment plans for each patient,' Nowak told KFF Health News. The new NCCN guidance was 'not the blanket recommendation we were working toward, but it is a major step toward our ultimate goal,' said Kerin Milesky, a public health official in Brewster, Massachusetts, who's part of an advocacy group for testing. Her husband, Larry, died two years ago at age 73 after a single treatment of capecitabine. European drug regulators began urging oncologists to test patients for deficiency in May 2020. Patients with potentially risky genetics are started on a half-dose of the cancer drug. If they suffer no major toxicity, the dose is increased. A lifesaving ultimatum? Emily Alimonti, a 42-year-old biotech salesperson in upstate New York, chose that path before starting capecitabine treatment in December. She said her doctors — including an oncologist at Sloan Kettering — told her they didn't do deficiency testing, but Alimonti insisted. 'Nope,' she said. 'I'm not starting it until I get the test back.' The test showed that Alimonti had a copy of a risky gene variant, so doctors gave her a lower dose of the drug. Even that has been hard to tolerate; she's had to skip doses because of low white blood cell counts, Alimonti said. She still doesn't know whether her insurer will cover the test. Around 300,000 people are treated with 5-FU or capecitabine in the United States each year, but its toxicity could well have prevented FDA approval were it up for approval today. Short of withdrawing a drug, however, U.S. regulators have little power to manage its use. And 5-FU and capecitabine are still powerful tools against many cancers. At a January workshop that included FDA officials and cancer specialists, Venook, the NCCN panel's co-chair, asked whether it was reasonable to recommend that doctors obtain a genetic test 'without saying what to do with the result.' But Richard Pazdur, the FDA's top cancer expert, said it was time to end the debate and commence testing, even if the results could be ambiguous. 'If you don't have the information, how do you have counseling?' he asked. Two months later, Venook's panel changed course. The price of tests has fallen below $300 and results can be returned as soon as three days, Venook said. Doubts about the FDA's ability to further confront the issue spurred the panel's change of heart, he said. 'I don't know if FDA is going to exist tomorrow,' Venook told KFF Health News. 'They're taking a wrecking ball to common sense, and that's one of the reasons we felt we had to go forward.' On May 20, the FDA posted a Federal Register notice seeking public input on the issue, a move that suggested it was considering further action. Venook said he often tests his own patients, but the results can be fuzzy. If the test finds two copies of certain dangerous gene variants in a patient, he avoids using the drug. But such cases are rare — and Zembruski-Ruple was one of them, according to her sister and Khavkine. Many more patients have a single copy of a suspect gene, an ambiguous result that requires clinical judgment to assess, Venook said. A full-gene scan would provide more information but adds expense and time, and even then the answer may be murky, Venook said. He worries that starting patients on lower doses could mean fewer cures, especially for newly diagnosed colon cancer patients. Power should rest with patients Scott Kapoor, a Toronto-area emergency room physician whose brother Anil, a much-loved urologist and surgeon, died of 5-FU toxicity at age 58 in 2023, views Venook's arguments as medical paternalism. Patients should decide whether to test and what to do with the results, he said. 'What's better — don't tell the patient about the test, don't test them, potentially kill them in 20 days?' he said. 'Or tell them about the testing while warning that potentially the cancer will kill them in a year?' 'People say oncologists don't know what to do with the information,' said Karen Merritt, whose mother died after an infusion of 5-FU in 2014. 'Well, I'm not a doctor, but I can understand the Mayo Clinic report on it.' The Mayo Clinic recommends starting patients on half a dose if they have one suspect gene variant. And 'the vast majority of patients will be able to start treatment without delays,' Daniel Hertz, a clinical pharmacologist from the University of Michigan, said at the January meeting. Some hospitals began testing after patients died because of the deficiency, said Lindsay Murray, of Andover, Massachusetts, who has advocated for widespread testing since her mother was treated with capecitabine and died in 2021. In some cases, Venook said, relatives of dead patients have sued hospitals, leading to settlements. Kapoor said his brother — like many patients of non-European origin — had a gene variant that hasn't been widely studied and isn't included in most tests. But a full-gene scan would have detected it, Kapoor said, and such scans can also be done for a few hundred dollars. The cancer network panel's changed language is disappointing, he said, though 'better than nothing.' In video tributes to Zembruski-Ruple, her friends, colleagues, and clients remembered her as kind, helpful, and engaging. 'JoEllen was beautiful both inside and out,' said Barbara McKeon, a former colleague at the MS Society. 'She was funny, creative, had a great sense of style.' 'JoEllen had this balance of classy and playful misbehavior,' psychotherapist Anastatia Fabris said. 'My beautiful, vibrant, funny, and loving friend JoEllen.' KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Yahoo
03-06-2025
- Business
- Yahoo
Two patients faced chemo. The one who survived got a test to see if it was safe.
JoEllen Zembruski-Ruple, while in the care of New York City's renowned Memorial Sloan Kettering Cancer Center, swallowed the first three chemotherapy pills to treat her squamous cell carcinoma on Jan. 29, her family members said. They didn't realize the drug could kill her. Six days later, Zembruski-Ruple went to Sloan Kettering's urgent care department to treat sores in her mouth and swelling around her eyes. The hospital diagnosed oral yeast infection and sent her home, her sister and partner said. Two days later, they said, she returned in agony — with severe diarrhea and vomiting — and was admitted. 'Enzyme deficiency,' Zembruski-Ruple texted a friend. The 65-year-old, a patient advocate who had worked for the National Multiple Sclerosis Society and other groups, would never go home. Covered in bruises and unable to swallow or talk, she eventually entered hospice care and died March 25 from the very drug that was supposed to extend her life, said her longtime partner, Richard Khavkine. Zembruski-Ruple was deficient in the enzyme that metabolizes capecitabine, the chemotherapy drug she took, said Khavkine and Susan Zembruski, one of her sisters. Zembruski-Ruple was among about 1,300 Americans each year who die from the toxic effects of that pill or its cousin, the IV drug fluorouracil known as 5-FU. Doctors can test for the deficiency — and then either switch drugs or lower the dosage if patients have a genetic variant that carries risk. The FDA approved an antidote in 2015, but it's expensive and must be administered within four days of the first chemotherapy treatment. Newer cancer drugs sometimes include a companion diagnostic to determine whether a drug works with an individual patient's genetics. But 5-FU went on the market in 1962 and sells for about $17 a dose; producers of its generic aren't seeking approval for toxicity tests, which typically cost hundreds of dollars. Doctors have only gradually understood which gene variants are dangerous in which patients, and how to deal with them, said Alan Venook, a colorectal and liver cancer specialist at the University of California-San Francisco. By the time Zembruski-Ruple's doctors told her she had the deficiency, she had been on the drug for eight days, said Khavkine, who watched over his partner with her sister throughout the seven-week ordeal. Khavkine said he 'would have asked for the test' if he had known about it, but added 'nobody told us about the possibility of this deficiency.' Zembruski-Ruple's sister also said she wasn't warned about the fatal risks of the chemo, or told about the test. 'They never said why they didn't test her,' Zembruski said. 'If the test existed, they should have said there is a test. If they said, 'Insurance won't cover it,' I would have said, 'Here's my credit card.' We should have known about it.' Despite growing awareness of the deficiency, and an advocacy group made up of grieving friends and relatives who push for routine testing of all patients before they take the drug, the medical establishment has moved slowly. A panel of the National Comprehensive Cancer Network, or NCCN — specialists from Sloan Kettering and other top research centers — until recently did not recommend testing, and the FDA does not require it. In response to a query from KFF Health News about its policy, Sloan Kettering spokesperson Courtney Nowak said the hospital treats patients 'in accordance with NCCN guidelines.' She said the hospital would not discuss a patient's care. On Jan. 24, the FDA issued a warning about the enzyme deficiency in which it urged health care providers to 'inform patients prior to treatment' about the risks of taking 5-FU and capecitabine. On March 31 — six days after Zembruski-Ruple's death — the network's expert panel for most gastrointestinal cancers took a first step toward recommending testing for the deficiency. Worried that President Donald Trump's FDA might do nothing, Venook said, the panel — whose guidance shapes the practices of oncologists and health insurers — recommended that doctors consider testing before dosing patients with 5-FU or capecitabine. However, its guidance stated that 'no specific test is recommended at this time,' citing a lack of data to 'inform dose adjustments.' Sloan Kettering 'will consider this guidance in developing personalized treatment plans for each patient,' Nowak told KFF Health News. The new NCCN guidance was 'not the blanket recommendation we were working toward, but it is a major step toward our ultimate goal,' said Kerin Milesky, a public health official in Brewster, Massachusetts, who's part of an advocacy group for testing. Her husband, Larry, died two years ago at age 73 after a single treatment of capecitabine. European drug regulators began urging oncologists to test patients for deficiency in May 2020. Patients with potentially risky genetics are started on a half-dose of the cancer drug. If they suffer no major toxicity, the dose is increased. Emily Alimonti, a 42-year-old biotech salesperson in upstate New York, chose that path before starting capecitabine treatment in December. She said her doctors — including an oncologist at Sloan Kettering — told her they didn't do deficiency testing, but Alimonti insisted. 'Nope,' she said. 'I'm not starting it until I get the test back.' The test showed that Alimonti had a copy of a risky gene variant, so doctors gave her a lower dose of the drug. Even that has been hard to tolerate; she's had to skip doses because of low white blood cell counts, Alimonti said. She still doesn't know whether her insurer will cover the test. Around 300,000 people are treated with 5-FU or capecitabine in the United States each year, but its toxicity could well have prevented FDA approval were it up for approval today. Short of withdrawing a drug, however, U.S. regulators have little power to manage its use. And 5-FU and capecitabine are still powerful tools against many cancers. At a January workshop that included FDA officials and cancer specialists, Venook, the NCCN panel's co-chair, asked whether it was reasonable to recommend that doctors obtain a genetic test 'without saying what to do with the result.' But Richard Pazdur, the FDA's top cancer expert, said it was time to end the debate and commence testing, even if the results could be ambiguous. 'If you don't have the information, how do you have counseling?' he asked. Two months later, Venook's panel changed course. The price of tests has fallen below $300 and results can be returned as soon as three days, Venook said. Doubts about the FDA's ability to further confront the issue spurred the panel's change of heart, he said. 'I don't know if FDA is going to exist tomorrow,' Venook told KFF Health News. 'They're taking a wrecking ball to common sense, and that's one of the reasons we felt we had to go forward.' On May 20, the FDA posted a Federal Register notice seeking public input on the issue, a move that suggested it was considering further action. Venook said he often tests his own patients, but the results can be fuzzy. If the test finds two copies of certain dangerous gene variants in a patient, he avoids using the drug. But such cases are rare — and Zembruski-Ruple was one of them, according to her sister and Khavkine. Many more patients have a single copy of a suspect gene, an ambiguous result that requires clinical judgment to assess, Venook said. A full-gene scan would provide more information but adds expense and time, and even then the answer may be murky, Venook said. He worries that starting patients on lower doses could mean fewer cures, especially for newly diagnosed colon cancer patients. Power Should Rest With Patients Scott Kapoor, a Toronto-area emergency room physician whose brother Anil, a much-loved urologist and surgeon, died of 5-FU toxicity at age 58 in 2023, views Venook's arguments as medical paternalism. Patients should decide whether to test and what to do with the results, he said. 'What's better — don't tell the patient about the test, don't test them, potentially kill them in 20 days?' he said. 'Or tell them about the testing while warning that potentially the cancer will kill them in a year?' 'People say oncologists don't know what to do with the information,' said Karen Merritt, whose mother died after an infusion of 5-FU in 2014. 'Well, I'm not a doctor, but I can understand the Mayo Clinic report on it.' The Mayo Clinic recommends starting patients on half a dose if they have one suspect gene variant. And 'the vast majority of patients will be able to start treatment without delays,' Daniel Hertz, a clinical pharmacologist from the University of Michigan, said at the January meeting. Some hospitals began testing after patients died because of the deficiency, said Lindsay Murray, of Andover, Massachusetts, who has advocated for widespread testing since her mother was treated with capecitabine and died in 2021. In some cases, Venook said, relatives of dead patients have sued hospitals, leading to settlements. Kapoor said his brother — like many patients of non-European origin — had a gene variant that hasn't been widely studied and isn't included in most tests. But a full-gene scan would have detected it, Kapoor said, and such scans can also be done for a few hundred dollars. The cancer network panel's changed language is disappointing, he said, though 'better than nothing.' In video tributes to Zembruski-Ruple, her friends, colleagues, and clients remembered her as kind, helpful, and engaging. 'JoEllen was beautiful both inside and out,' said Barbara McKeon, a former colleague at the MS Society. 'She was funny, creative, had a great sense of style.' 'JoEllen had this balance of classy and playful misbehavior,' psychotherapist Anastatia Fabris said. 'My beautiful, vibrant, funny, and loving friend JoEllen.' This article was originally published on
NBC News
03-06-2025
- Business
- NBC News
Two patients faced chemo. The one who survived got a test to see if it was safe.
JoEllen Zembruski-Ruple, while in the care of New York City's renowned Memorial Sloan Kettering Cancer Center, swallowed the first three chemotherapy pills to treat her squamous cell carcinoma on Jan. 29, her family members said. They didn't realize the drug could kill her. Six days later, Zembruski-Ruple went to Sloan Kettering's urgent care department to treat sores in her mouth and swelling around her eyes. The hospital diagnosed oral yeast infection and sent her home, her sister and partner said. Two days later, they said, she returned in agony — with severe diarrhea and vomiting — and was admitted. 'Enzyme deficiency,' Zembruski-Ruple texted a friend. The 65-year-old, a patient advocate who had worked for the National Multiple Sclerosis Society and other groups, would never go home. Covered in bruises and unable to swallow or talk, she eventually entered hospice care and died March 25 from the very drug that was supposed to extend her life, said her longtime partner, Richard Khavkine. Zembruski-Ruple was deficient in the enzyme that metabolizes capecitabine, the chemotherapy drug she took, said Khavkine and Susan Zembruski, one of her sisters. Zembruski-Ruple was among about 1,300 Americans each year who die from the toxic effects of that pill or its cousin, the IV drug fluorouracil known as 5-FU. Doctors can test for the deficiency — and then either switch drugs or lower the dosage if patients have a genetic variant that carries risk. The FDA approved an antidote in 2015, but it's expensive and must be administered within four days of the first chemotherapy treatment. Newer cancer drugs sometimes include a companion diagnostic to determine whether a drug works with an individual patient's genetics. But 5-FU went on the market in 1962 and sells for about $17 a dose; producers of its generic aren't seeking approval for toxicity tests, which typically cost hundreds of dollars. Doctors have only gradually understood which gene variants are dangerous in which patients, and how to deal with them, said Alan Venook, a colorectal and liver cancer specialist at the University of California-San Francisco. By the time Zembruski-Ruple's doctors told her she had the deficiency, she had been on the drug for eight days, said Khavkine, who watched over his partner with her sister throughout the seven-week ordeal. Khavkine said he 'would have asked for the test' if he had known about it, but added 'nobody told us about the possibility of this deficiency.' Zembruski-Ruple's sister also said she wasn't warned about the fatal risks of the chemo, or told about the test. 'They never said why they didn't test her,' Zembruski said. 'If the test existed, they should have said there is a test. If they said, 'Insurance won't cover it,' I would have said, 'Here's my credit card.' We should have known about it.' Guidance moves at a glacial pace Despite growing awareness of the deficiency, and an advocacy group made up of grieving friends and relatives who push for routine testing of all patients before they take the drug, the medical establishment has moved slowly. A panel of the National Comprehensive Cancer Network, or NCCN — specialists from Sloan Kettering and other top research centers — until recently did not recommend testing, and the FDA does not require it. In response to a query from KFF Health News about its policy, Sloan Kettering spokesperson Courtney Nowak said the hospital treats patients 'in accordance with NCCN guidelines.' She said the hospital would not discuss a patient's care. On Jan. 24, the FDA issued a warning about the enzyme deficiency in which it urged health care providers to 'inform patients prior to treatment' about the risks of taking 5-FU and capecitabine. On March 31 — six days after Zembruski-Ruple's death — the network's expert panel for most gastrointestinal cancers took a first step toward recommending testing for the deficiency. Worried that President Donald Trump's FDA might do nothing, Venook said, the panel — whose guidance shapes the practices of oncologists and health insurers — recommended that doctors consider testing before dosing patients with 5-FU or capecitabine. However, its guidance stated that 'no specific test is recommended at this time,' citing a lack of data to 'inform dose adjustments.' Sloan Kettering 'will consider this guidance in developing personalized treatment plans for each patient,' Nowak told KFF Health News. The new NCCN guidance was 'not the blanket recommendation we were working toward, but it is a major step toward our ultimate goal,' said Kerin Milesky, a public health official in Brewster, Massachusetts, who's part of an advocacy group for testing. Her husband, Larry, died two years ago at age 73 after a single treatment of capecitabine. European drug regulators began urging oncologists to test patients for deficiency in May 2020. Patients with potentially risky genetics are started on a half-dose of the cancer drug. If they suffer no major toxicity, the dose is increased. A lifesaving ultimatum? Emily Alimonti, a 42-year-old biotech salesperson in upstate New York, chose that path before starting capecitabine treatment in December. She said her doctors — including an oncologist at Sloan Kettering — told her they didn't do deficiency testing, but Alimonti insisted. 'Nope,' she said. 'I'm not starting it until I get the test back.' The test showed that Alimonti had a copy of a risky gene variant, so doctors gave her a lower dose of the drug. Even that has been hard to tolerate; she's had to skip doses because of low white blood cell counts, Alimonti said. She still doesn't know whether her insurer will cover the test. Around 300,000 people are treated with 5-FU or capecitabine in the United States each year, but its toxicity could well have prevented FDA approval were it up for approval today. Short of withdrawing a drug, however, U.S. regulators have little power to manage its use. And 5-FU and capecitabine are still powerful tools against many cancers. At a January workshop that included FDA officials and cancer specialists, Venook, the NCCN panel's co-chair, asked whether it was reasonable to recommend that doctors obtain a genetic test 'without saying what to do with the result.' But Richard Pazdur, the FDA's top cancer expert, said it was time to end the debate and commence testing, even if the results could be ambiguous. 'If you don't have the information, how do you have counseling?' he asked. Two months later, Venook's panel changed course. The price of tests has fallen below $300 and results can be returned as soon as three days, Venook said. Doubts about the FDA's ability to further confront the issue spurred the panel's change of heart, he said. 'I don't know if FDA is going to exist tomorrow,' Venook told KFF Health News. 'They're taking a wrecking ball to common sense, and that's one of the reasons we felt we had to go forward.' On May 20, the FDA posted a Federal Register notice seeking public input on the issue, a move that suggested it was considering further action. Venook said he often tests his own patients, but the results can be fuzzy. If the test finds two copies of certain dangerous gene variants in a patient, he avoids using the drug. But such cases are rare — and Zembruski-Ruple was one of them, according to her sister and Khavkine. Many more patients have a single copy of a suspect gene, an ambiguous result that requires clinical judgment to assess, Venook said. A full-gene scan would provide more information but adds expense and time, and even then the answer may be murky, Venook said. He worries that starting patients on lower doses could mean fewer cures, especially for newly diagnosed colon cancer patients. Power Should Rest With Patients Scott Kapoor, a Toronto-area emergency room physician whose brother Anil, a much-loved urologist and surgeon, died of 5-FU toxicity at age 58 in 2023, views Venook's arguments as medical paternalism. Patients should decide whether to test and what to do with the results, he said. 'What's better — don't tell the patient about the test, don't test them, potentially kill them in 20 days?' he said. 'Or tell them about the testing while warning that potentially the cancer will kill them in a year?' 'People say oncologists don't know what to do with the information,' said Karen Merritt, whose mother died after an infusion of 5-FU in 2014. 'Well, I'm not a doctor, but I can understand the Mayo Clinic report on it.' The Mayo Clinic recommends starting patients on half a dose if they have one suspect gene variant. And 'the vast majority of patients will be able to start treatment without delays,' Daniel Hertz, a clinical pharmacologist from the University of Michigan, said at the January meeting. Some hospitals began testing after patients died because of the deficiency, said Lindsay Murray, of Andover, Massachusetts, who has advocated for widespread testing since her mother was treated with capecitabine and died in 2021. In some cases, Venook said, relatives of dead patients have sued hospitals, leading to settlements. Kapoor said his brother — like many patients of non-European origin — had a gene variant that hasn't been widely studied and isn't included in most tests. But a full-gene scan would have detected it, Kapoor said, and such scans can also be done for a few hundred dollars. The cancer network panel's changed language is disappointing, he said, though 'better than nothing.' In video tributes to Zembruski-Ruple, her friends, colleagues, and clients remembered her as kind, helpful, and engaging. 'JoEllen was beautiful both inside and out,' said Barbara McKeon, a former colleague at the MS Society. 'She was funny, creative, had a great sense of style.' 'JoEllen had this balance of classy and playful misbehavior,' psychotherapist Anastatia Fabris said. 'My beautiful, vibrant, funny, and loving friend JoEllen.'
Gulf Today
01-06-2025
- Health
- Gulf Today
Erth Zayed Philanthropies donates Dhs25m to NMSS
The National Multiple Sclerosis Society (NMSS) has signed a strategic agreement with Erth Zayed Philanthropies to advance its national multiple sclerosis (MS) agenda. As part of this agreement, Erth Zayed Philanthropies will contribute Dhs25 million to support NMSS in delivering its core priorities, including advancing UAE's first National Coalition for MS, a multi-sector platform to improve care, research, and inclusion across the country. The agreement was signed by Dr. Fatima Al Kaabi, Vice Chair of the National Multiple Sclerosis Society, and a representative from Erth Zayed Philanthropies during a formal ceremony in Abu Dhabi. The announcement of this strategic agreement coincides with World MS Day, marked this year under the global theme 'My MS Diagnosis: Navigating MS Together,' which highlights the importance of early detection and community support. This year, Erth Zayed Philanthropies joins the National Coalition for MS as a founding partner, marking a pivotal step in the UAE's efforts to advance equitable MS care and inclusion. This strategic partnership reinforces the UAE's commitment to enhancing MS care, accelerating research, and advancing equity, catalysing broader multi-sector engagement to shape a more inclusive and transformative national response. Coalition members include Sanofi, Axios International, PureHealth and Manzil Healthcare Services, each playing a vital role in advancing care, awareness, and system-wide impact. Dr. Fatima Al Kaabi said, 'The establishment of the National Coalition for MS is a defining step in our mission to drive equitable access to MS care. This work is inspired by the legacy of our Founding Father, the late Sheikh Zayed bin Sultan Al Nahyan, whose vision was rooted in dignity, inclusion, and access to quality care for all. It is sustained by the leadership of President His Highness Sheikh Mohamed Bin Zayed Al Nahyan, whose commitment continues to shape the future of health and reinforce the UAE's position as a global leader in innovative, people-centered healthcare.' 'On World MS Day, we are proud to join the international community, not only in raising awareness, but in taking meaningful, coordinated action that has the potential to transform outcomes for people living with MS. Today, we are laying the foundations for long-term impact rooted in compassion, powered by collaboration, and guided by a shared responsibility to ensure that every member of our community has the opportunity to live a full and dignified life.' WAM
