Health Equity in Uncertain Times
Share Your Story
🚨 Some grants for Long COVID pathobiology research in the National Institutes of Health’s RECOVER program are among those rescinded by the federal government this week under a new order to cut all funding for COVID-related research. Up to 45 grants awarded in 2022 and 2023 may have been revoked, as well as more recent grants not yet publicly announced, sources told The Sick Times. While other aspects of the vast RECOVER program — including its clinical trials initiative — remain in place for now, its overall status is uncertain as the Trump administration targets COVID-19 and Long COVID research. Researchers in this field are facing a climate of fear and uncertainty. Read more from Betsy Ladyzhets and Miles Griffis (@confettiwesterns) at the link in our bio. ID: Jay Bhattacharya, the newly-confirmed director of the NIH, during his confirmation hearing on March 5, 2025. The text reads, “The Sick Times. RECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive. By Betsy Ladyzhets and Miles W. Griffis.” The following slides feature quotes from the story at The Sick Times.
Research words we’re not allowed to say anymore if we want federal grant funding: “vaccine hesitancy.” @matthewfacciani
Grateful to Katie Wu at The Atlantic for being responsive, thorough, and reflective when I asked if she'd tackle this story. In the hours since publication, however, our work has entirely changed... I originally felt compelled to speak out in a climate where fear stifles many voices. As Katie quoted me saying, none of my grants had been terminated at the time of our last interview. While I had a lot to lose, this story had to come to light—not just for the LGBTQ community, but for all Americans. However, I just received a "termination" letter for one of my large-scale NIH grants. Our research is now halted on revealing how discriminatory laws (e.g., 'Don't Say Gay' bills) lead to depression and suicide among LGBTQ teens. This "termination" letter is unprecedented as NIH grants are reviewed and approved in a highly competitive grant process and rarely are forced to stop. But now our grants are being terminated solely because the work is "in conflict" with various executive orders (e.g., “gender ideology,” DEI). LGBTQ health is not an obscure, fringe, or ideological issue. The latest data show that 1 in 10 Americans identify as LGBTQ and the number is twice as high among young people. We’re not trying to advance any radical ideology. We’re scientists, trying to keep people healthy. This should be a goal that everyone can get behind. And it is frightening to see our research being cancelled without cause. Our science shows political rhetoric targeting the LGBTQ community causes real, painful harms. Talk isn’t “just” talk — it causes devastating health impacts. Having our NIH-funded research halted is a double whammy. It’s not just that the administration is shutting down research designed to improve health. They are also harming health with rhetoric that seeks to erase our entire community from existence. We desperately need foundations and individual philanthropists to sustain our research. Many of our studies have been ongoing for decades and are in jeopardy of being permanently destroyed. And at the same time, while we need philanthropy, it cannot entirely fill the gap. The NIH is the world's largest funder of biomedical research; it must continue to fund a broad range of rigorous science to improve health and well-being for every member of our society. Read the full piece 👇 lnkd.in/ec3Yb2AU
Our NIH grant was officially cut this week by the government with nearly no explanation of why. My first R01 as a lab. We were doing some exciting stuff on how sex chromosomes and hormones impact the immune system and how they can cause a rare disease. This was directly impacting rare diseases and women's health. This grant was reviewed by leading experts and considered to be transformative and needed. It was a special program of funding to bring equity to all and to push ahead our knowledge of sex differences for diseases. I am heartbroken and really hurt that the science I dedicate my life to is being targeted because of words and not scientific impact. For more context you can read the grants description here: lnkd.in/g6-JAE7C
ACTION ALERT: Urge your members of Congress to reverse the CDC Epilepsy Program staff cuts and protect funding for the CDC Epilepsy program—and all epilepsy research and programs—moving forward. Your engagement in this effort will be critical. Act NOW: bit.ly/pcdcep
The attacks on university research funded by NIH will have ripple effects. One likely outcome will be tuition increases and added student debt from the massive decrease in indirect costs alone. This week’s termination of NIH grants will only further increase tuition costs and rob us of a generation of scientists and innovative treatments for both chronic and infectious diseases. The newest infographic of data released by my team is below and the full list of universities and likely tuition/ debt increases can be found at the following link: lnkd.in/ebGcdfYJ
Based on data generated from a CURE Epilepsy funded project, Dr. Avtar Roopra from the University of Wisconsin-Madison was awarded a $3M NIH grant to continue his work. That grant was up for review last month but the meetings were canceled. Now, his breakthrough discoveries on blocking seizures could be held up by a potential gap in federal funding. NIH investment is critical to the continued progress of so many lines of important neurological research. Learn more in this news clip: lnkd.in/ggX7CW4h
"The National Institutes of Health has terminated dozens of grants for scientific research projects related to vaccine use and hesitancy, informing researchers that their studies no longer aligned with the Trump administration’s priorities. Ali Rogin speaks with Sophia Newcomer, one of the researchers whose grant was cancelled, whose work focuses on health care access in rural communities." lnkd.in/dGHK2nUP
May is Lupus Awareness Month, a time to shine a light on the challenges of living with lupus, an autoimmune disease that affects many of us in different ways. For me, it’s a reminder of the daily strength required to manage the symptoms and cope with the ups and downs of the condition. The pain is progressing very fast and the doctors are still trying to find the right treatment plan. While lupus can be unpredictable, I’m doing my best to stay positive, advocate for myself, and stay hopeful as I continue to live my life with strength and adaption. Awareness is key, and by sharing my journey, I hope to help others feel less alone in their own battles.
Along with ours, funds to Drs. Pamela Bjorkman of Caltech and Nevan Krogan of UCSF, and of many others, were also axed. lnkd.in/gJ7UtNmN
May is Lupus Awareness Month. Here I am with my bag full of medications! I take 30 pills/day! Some are for lupus, others are for the other 5 autoimmune diseases that I have (yes, I have 6 in all--this is common for people who have lupus). I also take medications for asthma, a pituitary adenoma, and side effects of the brain injury. Clearly, I'm competitive in all aspects of my life. ; ) Will you please consider donating to the Virtual Walk to End Lupus Now 2021 or better yet, joining my team? Below is the link. The money goes to lupus research, to help patients with lupus, to run informative summits and other programs, and other important work. ¡Gracias! support.lupus.org/site/TR...... #lupus #lupusawareness #lupusawarenessmonth #chronicillness #lupuswarrior #meditation #medicine Lupus Foundation of America, Northeast Region Lupus Foundation of America
🚨 Some grants for Long COVID pathobiology research in the National Institutes of Health’s RECOVER program are among those rescinded by the federal government this week under a new order to cut all funding for COVID-related research. Up to 45 grants awarded in 2022 and 2023 may have been revoked, as well as more recent grants not yet publicly announced, sources told The Sick Times. While other aspects of the vast RECOVER program — including its clinical trials initiative — remain in place for now, its overall status is uncertain as the Trump administration targets COVID-19 and Long COVID research. Researchers in this field are facing a climate of fear and uncertainty. Read more from Betsy Ladyzhets and Miles Griffis (@confettiwesterns) at the link in our bio. ID: Jay Bhattacharya, the newly-confirmed director of the NIH, during his confirmation hearing on March 5, 2025. The text reads, “The Sick Times. RECOVER grants for Long COVID pathobiology research are among those cut under new NIH directive. By Betsy Ladyzhets and Miles W. Griffis.” The following slides feature quotes from the story at The Sick Times.
Research words we’re not allowed to say anymore if we want federal grant funding: “vaccine hesitancy.” @matthewfacciani
Grateful to Katie Wu at The Atlantic for being responsive, thorough, and reflective when I asked if she'd tackle this story. In the hours since publication, however, our work has entirely changed... I originally felt compelled to speak out in a climate where fear stifles many voices. As Katie quoted me saying, none of my grants had been terminated at the time of our last interview. While I had a lot to lose, this story had to come to light—not just for the LGBTQ community, but for all Americans. However, I just received a "termination" letter for one of my large-scale NIH grants. Our research is now halted on revealing how discriminatory laws (e.g., 'Don't Say Gay' bills) lead to depression and suicide among LGBTQ teens. This "termination" letter is unprecedented as NIH grants are reviewed and approved in a highly competitive grant process and rarely are forced to stop. But now our grants are being terminated solely because the work is "in conflict" with various executive orders (e.g., “gender ideology,” DEI). LGBTQ health is not an obscure, fringe, or ideological issue. The latest data show that 1 in 10 Americans identify as LGBTQ and the number is twice as high among young people. We’re not trying to advance any radical ideology. We’re scientists, trying to keep people healthy. This should be a goal that everyone can get behind. And it is frightening to see our research being cancelled without cause. Our science shows political rhetoric targeting the LGBTQ community causes real, painful harms. Talk isn’t “just” talk — it causes devastating health impacts. Having our NIH-funded research halted is a double whammy. It’s not just that the administration is shutting down research designed to improve health. They are also harming health with rhetoric that seeks to erase our entire community from existence. We desperately need foundations and individual philanthropists to sustain our research. Many of our studies have been ongoing for decades and are in jeopardy of being permanently destroyed. And at the same time, while we need philanthropy, it cannot entirely fill the gap. The NIH is the world's largest funder of biomedical research; it must continue to fund a broad range of rigorous science to improve health and well-being for every member of our society. Read the full piece 👇 lnkd.in/ec3Yb2AU
Our NIH grant was officially cut this week by the government with nearly no explanation of why. My first R01 as a lab. We were doing some exciting stuff on how sex chromosomes and hormones impact the immune system and how they can cause a rare disease. This was directly impacting rare diseases and women's health. This grant was reviewed by leading experts and considered to be transformative and needed. It was a special program of funding to bring equity to all and to push ahead our knowledge of sex differences for diseases. I am heartbroken and really hurt that the science I dedicate my life to is being targeted because of words and not scientific impact. For more context you can read the grants description here: lnkd.in/g6-JAE7C
ACTION ALERT: Urge your members of Congress to reverse the CDC Epilepsy Program staff cuts and protect funding for the CDC Epilepsy program—and all epilepsy research and programs—moving forward. Your engagement in this effort will be critical. Act NOW: bit.ly/pcdcep
The attacks on university research funded by NIH will have ripple effects. One likely outcome will be tuition increases and added student debt from the massive decrease in indirect costs alone. This week’s termination of NIH grants will only further increase tuition costs and rob us of a generation of scientists and innovative treatments for both chronic and infectious diseases. The newest infographic of data released by my team is below and the full list of universities and likely tuition/ debt increases can be found at the following link: lnkd.in/ebGcdfYJ
Based on data generated from a CURE Epilepsy funded project, Dr. Avtar Roopra from the University of Wisconsin-Madison was awarded a $3M NIH grant to continue his work. That grant was up for review last month but the meetings were canceled. Now, his breakthrough discoveries on blocking seizures could be held up by a potential gap in federal funding. NIH investment is critical to the continued progress of so many lines of important neurological research. Learn more in this news clip: lnkd.in/ggX7CW4h
"The National Institutes of Health has terminated dozens of grants for scientific research projects related to vaccine use and hesitancy, informing researchers that their studies no longer aligned with the Trump administration’s priorities. Ali Rogin speaks with Sophia Newcomer, one of the researchers whose grant was cancelled, whose work focuses on health care access in rural communities." lnkd.in/dGHK2nUP
May is Lupus Awareness Month, a time to shine a light on the challenges of living with lupus, an autoimmune disease that affects many of us in different ways. For me, it’s a reminder of the daily strength required to manage the symptoms and cope with the ups and downs of the condition. The pain is progressing very fast and the doctors are still trying to find the right treatment plan. While lupus can be unpredictable, I’m doing my best to stay positive, advocate for myself, and stay hopeful as I continue to live my life with strength and adaption. Awareness is key, and by sharing my journey, I hope to help others feel less alone in their own battles.
Along with ours, funds to Drs. Pamela Bjorkman of Caltech and Nevan Krogan of UCSF, and of many others, were also axed. lnkd.in/gJ7UtNmN
May is Lupus Awareness Month. Here I am with my bag full of medications! I take 30 pills/day! Some are for lupus, others are for the other 5 autoimmune diseases that I have (yes, I have 6 in all--this is common for people who have lupus). I also take medications for asthma, a pituitary adenoma, and side effects of the brain injury. Clearly, I'm competitive in all aspects of my life. ; ) Will you please consider donating to the Virtual Walk to End Lupus Now 2021 or better yet, joining my team? Below is the link. The money goes to lupus research, to help patients with lupus, to run informative summits and other programs, and other important work. ¡Gracias! support.lupus.org/site/TR...... #lupus #lupusawareness #lupusawarenessmonth #chronicillness #lupuswarrior #meditation #medicine Lupus Foundation of America, Northeast Region Lupus Foundation of America