Latest news with #NIH
Daily Mail
5 hours ago
- Health
- Daily Mail
RFK Jr blasts 'broken' vaccine injury program and pledges 'fix' as public health overhaul continues
US Health Secretary Robert F. Kennedy Jr has announced a major vaccine policy overhaul. In a post on X, Kennedy, a long-time vaccine skeptic and former vaccine injury plaintiff lawyer, said he will work to 'fix' the program that compensates victims of vaccine injuries, the National Vaccine Injury Compensation Program (VICP). The VICP is a no-fault federal program designed to compensate individuals who are found to have been injured by vaccines. Kennedy said that to date, the program has paid out $5.4 billion in government funds to 12,000 people who have filed claims, alleging they suffered from various injuries after receiving a vaccine dating back to 1986. As of June 1, 2025, the VICP has compensated 12,019 claims that were deemed compensable from the 25,026 petitions that have been ruled on since its formation. The VICP was created in the 1980s, after lawsuits against vaccine companies and health care providers threatened to cause vaccine shortages and reduce US vaccination rates, which could have caused a resurgence of vaccine preventable diseases. Any individual, of any age, who received a covered vaccine and believes he or she was injured as a result can file a petition. Parents, legal guardians and legal representatives also can file on behalf of children, disabled adults, and individuals who are deceased. But Kennedy complained that the VICP 'routinely dismisses meritorious cases outright or drags them out for years'. As a longtime outspoken critic of the VICP, Kennedy went on to slam it and its 'Vaccine Court' for being corrupt and inefficient, referring to the nine voting members who make executive decisions on compensation cases. 'I will not allow the VICP to continue to ignore its mandate and fail its mission of quickly and fairly compensating vaccine-injured individuals,' he wrote, adding he was working with Attorney General Pam Bondi on the matter. 'Together, we will steer the Vaccine Court back to its original congressional intent.' He continued: 'Instead of 'quickly and fairly' awarding compensation, Special Masters dismiss over half of the cases. 'Most of those that proceed typically take five-plus years to resolve, with many languishing for more than 10 years as parents struggle to care for children suffering with often extreme disabilities.' He added, alleging: 'Expert witnesses for injured children complain that they suffer intimidation and even threats that they will lose professional status or NIH funding if they testify for injured children. 'The government pays its own medical expert witnesses promptly while simultaneously slow-walking payments for petitioners' experts—sometimes for years.' RFK Jr said the VICP's structure works against claimants because the Department of Health and Human Services - which he now leads - stands as the accused, as opposed to makers of the vaccines at the center of the accusation. And because of this, Kennedy claims that the VICP decisionmakers prioritize the financial health of the HHS Trust Fund, 'over their duty to compensate victims'. He added: 'The structure itself hobbles claimants. The defendant is HHS, not the vaccine makers; and claimants are therefore facing the monumental power and bottomless pockets of the U.S. government represented by the Department of Justice. 'Furthermore, most of the Special Masters [judging panel] come from government, legal, or political posts, and typically display an extreme bias that favors the government side.' Kennedy did not give specific details on how he would change the VICP. His X post concluded: 'The VICP is broken, and I intend to fix it. I will not allow the VICP to continue to ignore its mandate and fail its mission of quickly and fairly compensating vaccine-injured individuals. 'I am grateful to be working with @AGPamBondi and HHS staff to fix the VISP. Together, we will steer the Vaccine Court back to its original Congressional intent.' Changing the VICP would be the latest in a series of actions by Kennedy to reshape US regulation of vaccines, food and medicine. In June, he fired all 17 members of the CDC's Advisory Committee on Immunization Practices, a panel of vaccine experts, replacing them with seven handpicked members, including known vaccine skeptics. One of them earned thousands of dollars as an expert witness in litigation against Merck's, Gardasil vaccine, court records show. Kennedy himself played an instrumental role in organizing mass litigation over the vaccine. He also is planning to remove all the members of another advisory panel that determines what preventive health measures insurers must cover, the Wall Street Journal reported on Friday. An HHS spokesperson said Kennedy had not yet made a decision regarding the 16-member US Preventive Services Task Force. RFK Jr has for years sown doubt about the safety and efficacy of vaccines, despite research determining the shots are safe. He has a history of clashing with the medical establishment and spreading misinformation about vaccines, including promoting a debunked link between vaccines and autism despite scientific evidence to the contrary. Recently it emerged that a major 20-year study of over 1million children found no association between aluminum in vaccines and conditions like autism and ADHD. Findings in the sweeping investigation provide a rebuttal to oft-debunked claims about the use of aluminum salts in vaccines, which bolster the body's immune response, and purported ties to asthma, autoimmune diseases, and autism. Danish researchers looked at 50 potential health effects in children taking a vaccine containing aluminum salts, including 36 immune system disorders like diabetes and celiac disease, nine allergy-related conditions, such as asthma and eczema, and five neurodevelopmental disorders, including autism and ADHD. They found no increased risk of autism, ADHD, asthma, or autoimmune disorders from the small amounts of aluminum in vaccines. In fact, vaccinated children showed slightly lower rates of neurodevelopmental conditions – a seven percent lower autism risk and a 10 percent lower ADHD risk – with no connection to allergic or immune problems. Aluminum adjuvants are safely used in several common childhood vaccines, including those protecting against diphtheria-tetanus-pertussis (DTaP/Tdap), hepatitis A and B, Haemophilus influenzae type b (Hib), and pneumococcal disease.
The Hill
20 hours ago
- Health
- The Hill
Cutting animal testing will jeopardize human health
The Food and Drug Administration and National Institutes of Health held a joint workshop July 7 on reducing animal testing in research, strikingly announcing that 'NIH will no longer seek proposals exclusively for animal models.' This change follows the FDA's plan to phase out the requirement for animal testing of drugs, which marked the beginning of an overall shift away from animal research to what the new leadership refers to as 'more effective, human-relevant methods.' What this means is the FDA intends to allow new drugs to be trialed in people without prior animal tests, and that the NIH will restrict funding for the very kind of research that has led to transformative medical discoveries. As a biomedical researcher using mouse models and other tools to better understand and treat human disease, I am deeply concerned. Eliminating animal testing will make our drug supply less safe and set us back decades in making groundbreaking biomedical discoveries. Let's look first at drug regulation. Identifying potential new therapies first depends heavily on knowledge gained from preclinical studies in animals. These studies form the basis of biological discovery, including assessing a drug's relevance, safety and potential efficacy before it's ever given to humans. Without this critical step, discovering new drugs will be far more difficult to begin with and their effects far less predictable. Only after these initial studies do drugs move into clinical testing — involving progressively larger human cohorts across three phases before approval. Animal models are a crucial component of biomedical research because they allow us to test unpredictable biological effects between different organs and systems within a living body. For example, a cancer drug might successfully kill tumor cells in a dish, but in a whole organism, it could cause unexpected heart damage or trigger a harmful immune response affecting other organs. An animal test is the closest possible test of the utility and safety of any drug before it's given to humans. If drug developers are allowed to skip this step, it will mean that, in the near future, the first living body a new drug is ever tested in will be a human body. Researchers also use animals to understand diseases and develop completely new therapies. Laboratory mice, the most commonly used animal model, have been likened to the Rosetta Stone of immunology. Much of what we now know about the immune system has been deciphered through them. Think of immunotherapies for cancer, immunosuppressive drugs for autoimmune conditions, or treatments for allergies and infectious diseases. None of these life-saving medicines would exist today without decades of foundational research in animal models. Nearly half of NIH-funded grants involve animal use. So why would the world's largest public funder of biomedical research decide to make such drastic changes? The argument is that new human-based approaches can serve as a better alternative. These include lab-grown human models, computational tools and other approaches. And these can certainly complement animal models, as my colleagues and I have long worked toward. But it is premature to treat them as viable replacements. One of the main criticisms of animal research is that the findings don't always translate directly to humans. That is true, but there's little evidence that the proposed alternatives yield more reliable or predictive results. Instead of abandoning animal research, we should focus on improving existing models to better reflect human biology. And it's true that some mice need improving. For example, in 2006, a new drug that acts on immune cells passed through animal testing and reached the human clinical trial phase, yet it left six healthy volunteers in a critical condition. Researchers later realized that laboratory mice had less activated immune systems compared with adult humans, because the abnormally hygienic environment of the lab prevented proper immune growth. (Germs are actually essential in teaching the immune system how to protect us.) Researchers confirmed that adding mice from a pet-store (living under less sterile and more natural conditions with diverse germs) to the same cages as laboratory mice helped the latter's immune systems more closely resemble those of humans. When researchers tested the same drug from the 2006 trial in mice with more natural immune systems, they found that the mice experienced similar inflammatory complications. More recently, researchers using such mice were also able to better understand the causes of side effects from cancer immunotherapies. And work has been under way using these improved mice for many other studies that can advance human health. This discovery helped launch a whole new field, in which researchers like myself are working to improve mouse models and accelerate biomedical discoveries. After the announcement, the People for the Ethical Treatment of Animals called it a 'groundbreaking move' that is 'a crucial first step to modernizing science and sparing millions of animals from miserable lives and deaths in laboratories.' But it's possible to care for animals ethically without eliminating their scientific use. Indeed, the NIH has had animal welfare policies dating back to the beginning of the 1900s. And for at least a decade, all grant proposals have had to include consideration of alternative approaches, scientific justification of animal use and detailed protocols to minimize their distress. Institutions' protocols are also regularly reviewed for accreditation. We still need animal testing to find new treatments. Take the story of one-week-old baby KJ that was in the news in May. KJ was born with a severe genetic disorder that kills nearly half of affected babies in early life. But, through extensive medical efforts, which included the use of a mouse model modified with the diseased gene portion specific to KJ, a customized therapy was developed and successfully administered within eight months. The list of biomedical successes that used animal models spans centuries — from first defining the functions of the brain and heart, to the discovery of insulin, to the development of 'miracle' cancer drugs. Human health is a shared priority, and now more than ever, it demands meaningful collaboration between scientists and physicians, policymakers and the public to protect the research systems that have enabled medicine's greatest breakthroughs. To borrow the recent words of Nobel laureate Ardem Patapoutian, 'Now is the time for all of us to speak up — because protecting American science means protecting our future shared prosperity.' The FDA and NIH are welcoming public feedback on this and likely future workshops, and I urge everyone to make their voices heard. Anis Barmada is a biomedical researcher at Yale School of Medicine, P.D. Soros Fellow, and Public Voices Fellow of The OpEd Project. His research combines animal models with human-based and computational tools to better understand and treat human disease.
Medscape
21 hours ago
- Health
- Medscape
How Cuts to Research Funding Could Affect Medical Students
Joseph Alisch took a gap year after his third year of medical school to do research on clustered regularly interspaced short palindromic repeats gene editing at the National Institutes of Health (NIH) as part of the Medical Research Scholars Program. In early 2025, he began to experience some of the research cuts at the NIH. While he got to do research in his area of interest, pediatric neurology, some of the cuts and other policy changes dampened his experience. The first was a travel ban, which prevented him from attending the conference where he had planned to present his research findings. He was ultimately able to present virtually, 'though it was never quite the same experience, because you like to go there and interact with all the people,' he said. Next was a pause on purchasing laboratory products, which was problematic for him because his research required a variety of reagents. 'And so, for a while we kind of had to ration things,' he said. Then things became even more difficult. 'So, there were moments we're like, 'Okay, we can purchase things.' And then that policy was pulled back, saying, 'Actually, we can't purchase things right now.'' He recalls thinking, 'I just don't know what's going to happen, but I hope for the best and that we can continue working on these projects with minimal disruptions.' But the shifting policies and delays ultimately interfered with his research. 'I was able to come out with something towards the end, but not the end product that I had envisioned when I did, when I started that gap year,' he told Medscape Medical News . Many premed and medical students pursue research opportunities to bolster their applications to medical school or residency. However, based on the current national landscape, these opportunities are now more limited. This year, the Trump administration made policy changes that limited federal research funding. For example, NIH capped reimbursement for indirect research expenses such as lab maintenance and operations at 15% for current and new grants. Comparatively, average indirect funding reported by NIH generally ranged between 27% and 28%. In announcing the cap in February, NIH said in a statement on its website that, 'Although cognizant that grant recipients, particularly 'new or inexperienced organizations,' use grant funds to cover indirect costs like overhead, NIH is obligated to carefully steward grant awards to ensure taxpayer dollars are used in ways that benefit the American people and improve their quality of life.' The statement went on to say that many private foundations that fund academic research provide substantially lower funding for indirect expenses, yet 'universities readily accept grants from these foundations.' The idea, the statement said, is 'the United States should have the best medical research in the world. It is accordingly vital to ensure that as many funds as possible go towards direct scientific research costs rather than administrative overhead.' Medscape Medical News reached out to the White House Office of Science and Technology Policy for comment on how the Trump administration's policy changes and federal funding cuts may affect medical trainees. The office did not respond. Several state attorneys general, higher education associations, and research universities have filed lawsuits in protest. A US district judge blocked the 15% cap. However, the Trump administration appealed, and the fate of the policy remains in flux. Some Physician Researchers Are Nervous 'NIH has been very steady and very reliable, in fact much more reliable than industry funding…,' said Srihari S. Naidu, MD, an interventional cardiologist and professor of medicine at New York Medical College in Valhalla, New York. 'This is the first time where…we're all on edge that money may not come through.' Srihari S. Naidu, MD Overall, 'this is the kind of thing that will have…downstream consequences that affect the health of our country because these new discoveries and the research are what have evolved health care,' said Bobby Mukkamala, MD, president of the American Medical Association. The government is probably trying to save money, but how they're doing it is 'very drastic,' Naidu said. And in his view, the consequences may be chilling for students interested in doing research. 'We know that a lot of graduate programs, as well as programs that fund research opportunities for medical students, have had delays in or cuts in funding,' added Kenira Thompson, PhD, MBA, director of research at Ponce Research Institute in Ponce, Puerto Rico. 'And that's resulted in, particularly in graduate programs, either delayed or limited new admissions because there are reduced funding pipelines.' Students will still get into medical school, Naidu said, but there'll just be fewer research opportunities. 'And if you have less research opportunities for them, you have a workforce that is less savvy about research and…with less abilities towards research, which ultimately limits…their options as a career,' Naidu said. '…And then you'll also have less innovation in that field because there's less minds, less brainpower in that field doing research,' he said. And there are probably more cuts to come. In President Trump's proposed 2026 budget, NIH faces a budget cut of almost $18 billion, or about a 40% cut in funding. According to reporting by The New York Times , a new analysis by the American Association for the Advancement of Science found that President Trump's budget proposals for fiscal year 2026 include a 34% drop in basic science research from $45 billion to $30 billion and a 22% drop for overall science funding from $198 billion to $154 billion. 'The bottom line is that yes, everything is trickling down to impact students,' Thompson said. Implications for Medical Trainees 'The students are going to see either reduced [research] slots or an increase in the competition for the slots that are available,' Thompson said. 'Certainly, if the students don't have sufficient research under their belt, then potentially it will limit their possibility of getting into a medical program.' Naidu is also worried that the quality of research opportunities will suffer. What are the other options? There are registries that students can learn to use for research, but this is not going to be on the same magnitude or caliber as basic science research or clinical research, he said. 'It won't be clearly as innovative because the innovative thing takes a lot of money.' Research Options in New Reality A research vacuum could form where philanthropy, private equity, and industry players may 'pour more money to make up the difference.' However, this increase in profit-driven research would create its own set of problems, Naidu said. One is that this type of research has a bias in favor of trying to prove something. 'And number two, all the money goes towards things that can be commercialized rather than things that might be important,' he said. For example, in his field of interventional cardiology, 'if you have a new stent, industry just wants to prove that the new stent is better than the old stent. But we might want to know if no stents are better than having a stent altogether… And an industry that makes stents is not going to do a trial about whether it's better to not have stents at all.' 'NIH is where you go when you need money to [address] the real important questions that society needs to know,' Naidu said. For example, interventional cardiologists may want to know which is better: stents vs bypass surgery, and stents vs medical therapy. 'Most of those big trials are done through NIH funding.' Given the new research realities, medical students and residents may have to consider research that is industry- or private-equity-sponsored, if those options are even available to them, Naidu said. Most of the industry research doesn't usually use medical students, residents, or fellows 'because they're tightly controlled,' he said. Kenira Thompson, PhD, MBA If the research you do is private sector-driven — based on the research agenda of a particular company that needs to focus on getting a particular medication out the door to the market as opposed to you being in a research setting where there's more independence, where you can do a deep dive into new discoveries and new ideas and sort of build on innovation — then certainly there will be an impact down the line,' Thompson said. Naidu and Thompson also envision some premed and medical students seeking research opportunities abroad. 'The greatest concern is that…there will be great inequity in terms of the opportunities available to students and that some really great students may be sort of left behind,' Thompson said. Bobby Mukkamala, MD Naturally, some students will pursue a research opportunity in other countries, Mukkamala said, but 'there's a huge expense to that as a medical student as if medical school isn't expensive enough….' 'But then, trying to figure out how am I going to get to Germany, as in this example, to collaborate with people whose funding isn't threatened on the exact same topic that I could have done here in my backyard.' Advice to Medical Students Naidu wants medical students to know that research is still a very valuable pursuit, 'both in terms of helping you get to the next stage of your career, but also in and of itself, because it might stimulate you to go into a field of research, (in) a fabulous field that can allow you to be part of scientific progress in the world.' But with decreasing funding opportunities, students may need to 'cast their net wider,' he said, and be open to different topics than they might not have considered. Naidu is trying to do his part to help with providing research opportunities. He created the Medical Research Fund at Brown University School of Medicine, his alma mater in Providence, Rhode Island, to support summer research opportunities for three medical students per year. Students may also want to ask at interviews about the status of grant funding in a given lab they're interested in working in, Mukkamala said. 'There's less opportunities, but the best and the brightest will be able to find opportunities to still do research and…learn about the process and be competitive to move on in their careers,' he said. 'But it's going to be a little harder because overall there'll be less opportunities in total.' '…This is a time in history we're making major cuts to something that has been sustainable for a long time, Naidu said, adding later, 'We would be basically going back 30 years in terms of research funding.' Alisch, now a fourth-year medical student at Brown University School of Medicine, is taking a wait-and-see approach. Despite the delays he experienced as a researcher at NIH during his gap year, Alisch said he was still quite hopeful about his future as a medical science researcher. We are only about 6-7 months into this, he said. 'We have a lot more time to go through before we can see how this is actually going to play out.'
CNN
a day ago
- Health
- CNN
A researcher with hearing loss got a grant to study restoring hearing. The Trump administration cancelled it because of DEI
Disability issues Homes Diversity and equity Relationships FacebookTweetLink Dr. Uri Manor feels like much of his early life was blessed by fate. Born with genetic hearing loss that enables him to hear only about 10% of what others might, Manor was diagnosed at age 2, when he happened to be living in Wichita, Kansas – the home of what he describes as 'one of the most advanced schools for children with hearing loss, maybe in the world.' 'It wasn't clear if I would ever learn language, if I would ever be able to speak clearly,' said Manor, now 45. 'So I was very lucky, really weirdly lucky, that we were living in Wichita, Kansas, at the time.' Working in Wichita with experts at the Institute of Logopedics, now called Heartspring, Manor learned to speak. That same sort of serendipity led Manor into an unexpected career studying hearing loss himself, first at the US National Institutes of Health and, now, leading his own lab at the University of California, San Diego, where his research into ways to restore hearing was supported by a major five-year NIH grant. But that's where Manor's luck ran out. His grant was terminated in May by the Trump administration as part of its policies targeting diversity, equity and inclusion, or DEI, initiatives; Manor's funding had been awarded through a program that aimed to promote workforce diversity, for which he qualified because he has hearing loss. Now, Manor's research is in limbo, like that of thousands of other scientists whose work is supported in large part by the federal government and who've been affected by grant terminations. And the halt comes as research into hearing loss, which affects as many as 15% of American adults and 1 in 400 children at birth, had recently shown signs of rapid advancement. It was intense curiosity about the world that led Manor into a career in science, where early on, fate seemed to strike again. As a researcher at the NIH and Johns Hopkins working toward his Ph.D., Manor hoped to find an adviser interested in how magnetic fields could influence cells – an obsession that stemmed from a fascination with animals' ability to navigate using magnetic fields of the Earth. 'I was describing that to a physicist PI [primary investigator] at the NIH, and he goes, 'Yeah, I can't support that project, but what you're describing sounds a lot like the hair cells of the inner ear. You should go talk to this PI, who studies hair cells,'' Manor recalled. Despite spending much of his time at the audiologist's office, he said, 'I'd never thought about the ear.' That PI, Dr. Bechara Kachar, showed him microscope images of hair cells in the inner ear, which enable us to hear, and Manor remembers being stunned. 'I fell in love with the hair cell, these mysterious cells in our ear, because the system was so amazing, how it all comes together and how it all works,' Manor said. 'I got goosebumps. I have hearing loss, and I never thought about studying it. But now I was in this room falling in love with this system. I was like, 'What if this is like my destiny? What if this is what I'm supposed to be doing?'' In 2023, Manor received his first R01 grant from the NIH, a major five-year award that would support his lab's work on ways to restore hearing. Again, serendipity had struck; the R01 grant process is intensely competitive, funding only a fraction of the applications the biomedical research agency gets. Young researchers are advised to apply to research funding programs where they may have a unique edge, to improve their odds, Manor said. There was one that seemed a perfect fit; he was encouraged by mentors to apply to a program at the National Institute on Deafness and Other Communication Disorders that aimed to promote workforce diversity. It was specifically designed to support early-stage researchers 'from diverse backgrounds, including those from underrepresented groups,' such as people with disabilities. Manor qualified because he has 'congenital severe-to-profound hearing loss,' he said. 'It felt right.' Even at the time, Manor said, he acknowledged the risk that government initiatives supporting DEI may not always be popular. His biggest concern, though, was that he might not be able to renew his grant through the same program after its five years were up. But his luck turned. In late May, he received notification from the NIH that, only two years in, his five-year grant had been canceled. The reason: The Trump administration was targeting programs promoting DEI. 'Research programs based primarily on artificial and non-scientific categories, including amorphous equity objectives, are antithetical to the scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment, and ultimately do not enhance health, lengthen life, or reduce illness,' the notice read. 'It is the policy of NIH not to prioritize such research programs.' No more funding would be awarded, it continued, and all future years on the grant had been removed. 'No one ever imagined that a grant could be canceled in the middle of an award period,' Manor said. 'It might be naïve and incorrect, but when you get a five-year grant from the NIH, that's a five-year contract, and you make plans based on five years. … That's really kind of rocked our world.' A spokesperson for the NIH told CNN: 'The study itself has value, however unfortunately it was funded under an ideologically driven DEI program under the Biden Administration. In the future, NIH will review, and fund research based on scientific merit rather than on DEI criteria.' Manor spent the next two weeks sleeping two to three hours a night, writing new grant proposals to try to replace the lost funds. But the termination meant his lab had to stop experiments, some of which had taken years to set up. Manor took that measure in an attempt to avoid having to lay off staff members – which he ultimately had to do as well. Hearing loss affects more than 30 million people in the US, with prevalence rising as people age. Recently, the field has taken leaps forward, with trials of gene therapies, which deliver working copies of genes to make up for mutated ones that cause deafness, helping children hear for the first time. 'We're at the threshold of a brave new world, so to speak,' said Dr. Charles Liberman, a senior scientist and former director of the Eaton-Peabody Laboratories at Mass Eye and Ear, one of the largest hearing research laboratories in the world. 'It's pretty incredible, the progress that's been made in the last 10 or 15 years, on understanding what goes wrong in the ear and having a pretty good handle on what kinds of approaches might work to cure sensorineural hearing loss.' Liberman anticipates breakthroughs in the next five to 10 years in slowing age-related hearing loss as well and, 'perhaps farther in the future, to actually reverse age-related hearing loss.' Liberman said Manor – with whom he's collaborated in the past – is contributing to the field's advancements. 'He has not been in the field for terribly long, but he's already made a big impression because of the incredible sort of computational approaches he takes to analyzing data from the inner ear,' he said. 'His grant got cut because it was a diversity initiative,' Liberman continued, 'but Uri's research is top quality, and I'm sure it would have been funded just on its own merit.' Manor's was one of thousands of NIH grants cut by the Trump administration, amounting to almost $3.8 billion in lost funding, according to the Association of American Medical Colleges. Others canceled under the banner of combating DEI ideology include those focused on HIV, where researchers reported receiving notification identical to Manor's. But recently, Manor's fortunes seemed to have changed again. A federal judge ruled in June that it was illegal for the Trump administration to cancel several hundred research grants in areas including racial health disparities and transgender health. Manor's is among the grants included, and he received notice that the funding should come through. Still, he said he worries about whether that decision will hold through future court challenges. And he, like so many other scientists affected by the administration's drastic cuts to research funding, warns about the effects on scientific progress. 'No matter what your political leanings are, you have a 1 in 400 chance of having a child with hearing loss,' he said. Anyone dealing with medical conditions 'will benefit from the amazing advances of science and our biomedical research force.' But he also emphasized the importance of recognizing that research like his is supported by taxpayers, some of whom 'are struggling to pay their own bills, who are struggling to pay their kids' doctors bills.' 'And some of their taxpayer dollars are coming to my lab,' he said. 'That's a huge responsibility and privilege, and we have to make sure we're doing good with it. For me, that's a really powerful motivating factor, and I would like to believe that we're doing it.'
CNN
a day ago
- Health
- CNN
A researcher with hearing loss got a grant to study restoring hearing. The Trump administration cancelled it because of DEI
Disability issues Homes Diversity and equity RelationshipsFacebookTweetLink Follow Dr. Uri Manor feels like much of his early life was blessed by fate. Born with genetic hearing loss that enables him to hear only about 10% of what others might, Manor was diagnosed at age 2, when he happened to be living in Wichita, Kansas – the home of what he describes as 'one of the most advanced schools for children with hearing loss, maybe in the world.' 'It wasn't clear if I would ever learn language, if I would ever be able to speak clearly,' said Manor, now 45. 'So I was very lucky, really weirdly lucky, that we were living in Wichita, Kansas, at the time.' Working in Wichita with experts at the Institute of Logopedics, now called Heartspring, Manor learned to speak. That same sort of serendipity led Manor into an unexpected career studying hearing loss himself, first at the US National Institutes of Health and, now, leading his own lab at the University of California, San Diego, where his research into ways to restore hearing was supported by a major five-year NIH grant. But that's where Manor's luck ran out. His grant was terminated in May by the Trump administration as part of its policies targeting diversity, equity and inclusion, or DEI, initiatives; Manor's funding had been awarded through a program that aimed to promote workforce diversity, for which he qualified because he has hearing loss. Now, Manor's research is in limbo, like that of thousands of other scientists whose work is supported in large part by the federal government and who've been affected by grant terminations. And the halt comes as research into hearing loss, which affects as many as 15% of American adults and 1 in 400 children at birth, had recently shown signs of rapid advancement. It was intense curiosity about the world that led Manor into a career in science, where early on, fate seemed to strike again. As a researcher at the NIH and Johns Hopkins working toward his Ph.D., Manor hoped to find an adviser interested in how magnetic fields could influence cells – an obsession that stemmed from a fascination with animals' ability to navigate using magnetic fields of the Earth. 'I was describing that to a physicist PI [primary investigator] at the NIH, and he goes, 'Yeah, I can't support that project, but what you're describing sounds a lot like the hair cells of the inner ear. You should go talk to this PI, who studies hair cells,'' Manor recalled. Despite spending much of his time at the audiologist's office, he said, 'I'd never thought about the ear.' That PI, Dr. Bechara Kachar, showed him microscope images of hair cells in the inner ear, which enable us to hear, and Manor remembers being stunned. 'I fell in love with the hair cell, these mysterious cells in our ear, because the system was so amazing, how it all comes together and how it all works,' Manor said. 'I got goosebumps. I have hearing loss, and I never thought about studying it. But now I was in this room falling in love with this system. I was like, 'What if this is like my destiny? What if this is what I'm supposed to be doing?'' In 2023, Manor received his first R01 grant from the NIH, a major five-year award that would support his lab's work on ways to restore hearing. Again, serendipity had struck; the R01 grant process is intensely competitive, funding only a fraction of the applications the biomedical research agency gets. Young researchers are advised to apply to research funding programs where they may have a unique edge, to improve their odds, Manor said. There was one that seemed a perfect fit; he was encouraged by mentors to apply to a program at the National Institute on Deafness and Other Communication Disorders that aimed to promote workforce diversity. It was specifically designed to support early-stage researchers 'from diverse backgrounds, including those from underrepresented groups,' such as people with disabilities. Manor qualified because he has 'congenital severe-to-profound hearing loss,' he said. 'It felt right.' Even at the time, Manor said, he acknowledged the risk that government initiatives supporting DEI may not always be popular. His biggest concern, though, was that he might not be able to renew his grant through the same program after its five years were up. But his luck turned. In late May, he received notification from the NIH that, only two years in, his five-year grant had been canceled. The reason: The Trump administration was targeting programs promoting DEI. 'Research programs based primarily on artificial and non-scientific categories, including amorphous equity objectives, are antithetical to the scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment, and ultimately do not enhance health, lengthen life, or reduce illness,' the notice read. 'It is the policy of NIH not to prioritize such research programs.' No more funding would be awarded, it continued, and all future years on the grant had been removed. 'No one ever imagined that a grant could be canceled in the middle of an award period,' Manor said. 'It might be naïve and incorrect, but when you get a five-year grant from the NIH, that's a five-year contract, and you make plans based on five years. … That's really kind of rocked our world.' A spokesperson for the NIH told CNN: 'The study itself has value, however unfortunately it was funded under an ideologically driven DEI program under the Biden Administration. In the future, NIH will review, and fund research based on scientific merit rather than on DEI criteria.' Manor spent the next two weeks sleeping two to three hours a night, writing new grant proposals to try to replace the lost funds. But the termination meant his lab had to stop experiments, some of which had taken years to set up. Manor took that measure in an attempt to avoid having to lay off staff members – which he ultimately had to do as well. Hearing loss affects more than 30 million people in the US, with prevalence rising as people age. Recently, the field has taken leaps forward, with trials of gene therapies, which deliver working copies of genes to make up for mutated ones that cause deafness, helping children hear for the first time. 'We're at the threshold of a brave new world, so to speak,' said Dr. Charles Liberman, a senior scientist and former director of the Eaton-Peabody Laboratories at Mass Eye and Ear, one of the largest hearing research laboratories in the world. 'It's pretty incredible, the progress that's been made in the last 10 or 15 years, on understanding what goes wrong in the ear and having a pretty good handle on what kinds of approaches might work to cure sensorineural hearing loss.' Liberman anticipates breakthroughs in the next five to 10 years in slowing age-related hearing loss as well and, 'perhaps farther in the future, to actually reverse age-related hearing loss.' Liberman said Manor – with whom he's collaborated in the past – is contributing to the field's advancements. 'He has not been in the field for terribly long, but he's already made a big impression because of the incredible sort of computational approaches he takes to analyzing data from the inner ear,' he said. 'His grant got cut because it was a diversity initiative,' Liberman continued, 'but Uri's research is top quality, and I'm sure it would have been funded just on its own merit.' Manor's was one of thousands of NIH grants cut by the Trump administration, amounting to almost $3.8 billion in lost funding, according to the Association of American Medical Colleges. Others canceled under the banner of combating DEI ideology include those focused on HIV, where researchers reported receiving notification identical to Manor's. But recently, Manor's fortunes seemed to have changed again. A federal judge ruled in June that it was illegal for the Trump administration to cancel several hundred research grants in areas including racial health disparities and transgender health. Manor's is among the grants included, and he received notice that the funding should come through. Still, he said he worries about whether that decision will hold through future court challenges. And he, like so many other scientists affected by the administration's drastic cuts to research funding, warns about the effects on scientific progress. 'No matter what your political leanings are, you have a 1 in 400 chance of having a child with hearing loss,' he said. Anyone dealing with medical conditions 'will benefit from the amazing advances of science and our biomedical research force.' But he also emphasized the importance of recognizing that research like his is supported by taxpayers, some of whom 'are struggling to pay their own bills, who are struggling to pay their kids' doctors bills.' 'And some of their taxpayer dollars are coming to my lab,' he said. 'That's a huge responsibility and privilege, and we have to make sure we're doing good with it. For me, that's a really powerful motivating factor, and I would like to believe that we're doing it.'
