Lisa Jarvis: The very idea of LGBTQ health is under attack
Published in Op Eds
Amid the turmoil at the country’s federal agencies, a disturbing pattern has emerged: research addressing differences in the health and well-being of LGBTQ Americans is being acutely targeted.
The Trump administration’s aim appears twofold: to deny the existence of disparities affecting nearly one in 10 Americans and to ensure there’s no paper trail proving the harm caused by policies that target the community.
According to a Bloomberg Opinion analysis, more than half of the 550 grants terminated over the last six weeks by the National Institutes of Health — collectively estimated to be worth billions of dollars — addressed LGBTQ health somehow. (Columbia University’s grants were excluded from our tally because they all were canceled or frozen amid Trump’s claims of antisemitism at the school.)
Scientists typically were told their work “no longer effectuates agency priorities.” The form letter many of them received called their work — all of which had undergone months of rigorous evaluation to obtain federal funding — “non-scientific.” Some researchers were told their studies “ignore, rather than seriously examine, biological realities.” At the same time, other letters claimed the projects “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 administration’s denial of documented disparities in health outcomes across different populations defies reason. The NIH recognized that LGBTQ health deserved resources and attention in 2015 when it created the Sexual and Gender Minority Research Office. Though it operated with a tiny staff, the office was critical in identifying and fostering research to address disparities.
Now, the office’s entire staff has been reassigned, and its website has been pulled. The massive cuts in NIH funding disproportionately targeted the research it helped cultivate.
The funding loss has sidelined efforts to document and address an array of disparities, including the increased risk for alcohol and substance use and poorer perinatal health among sexual and gender minorities. NIH has also diverted resources away from efforts aimed at preventing sexually transmitted infections. HIV research, which lives at the intersection of minority and sexual minority health, was particularly hard hit by the purge. Experts warn that the changes could upend decades of progress against the virus and will cost lives.
Many of the canceled grants focused on establishing evidence-backed approaches to supporting LGBTQ kids and their families. Teens who identify as a sexual minority are more than twice as likely to report poor mental health and three times as likely to have considered suicide than their heterosexual peers, a reality that researchers have been working hard to understand and change.
Much of that work is now gone, including research on interventions to help LGBTQ kids cope with adversity and discrimination at school, to understand the factors that lead to parental acceptance of children’s sexuality, and to determine why there is increased alcohol and substance use among queer youth of color.
Brittany Charlton, founding director of the LGBTQ Health Center of Excellence (a partnership of the Harvard Chan School of Public Health and Harvard Pilgrim Health Care Institute), lost a five-year grant to explore how LGBTQ-related legislation — discriminatory and supportive —affects mental health.
“More than 500 bills just last year were proposed across states, so it’s important that this work happens now,” said Charlton, whose entire grant portfolio was eliminated. Now that rigorous study can’t be completed, making it harder to document the harm caused by these laws.
The upheaval also broke the hard-won trust of the people researchers sought to help. There are real lives at the other end of these grants. People volunteered their time and, in some cases, made themselves vulnerable by sharing their stories, all in service of advancing science and improving the health of their community. According to our analysis, roughly 30% of the canceled LGBTQ-related health grants had a clinical component, and it’s a serious breach to simply end them.
“This is an ethical disaster,” says Aniruddha Hazra, an infectious disease specialist at the University of Chicago, which lost nearly a dozen grants that supported a center dedicated to eliminating HIV. “You can’t enroll individuals in a clinical trial with the expectation you will follow them and take care of them through its duration and then leave these participants — often from extremely marginalized communities — to fend for themselves.”
Washington University of St. Louis professor Jeremy Goldbach, who lost eight of the 10 grants he led or collaborated on, told me some study participants have asked if their personal data is safe. Some worry, “‘Am I going to be on a roster somewhere?’” Researchers try to allay their concerns, but the climate of fear engendered by two months of targeted attacks by the Trump administration makes it hard.
Two recent lawsuits — one brought by NIH-funded scientists and the other by attorneys general from 16 states — are challenging the legality of the grant terminations. And while the suits provide some hope that funding could be restored, the damage wrought is vast. Researchers worry that LGBTQ people will be reluctant to raise their hands for future research. “I don’t think we have community partners willing to work with us anymore because of how unconscionable the impact is that we’ve seen in the last few weeks,” Hazra says.
And that feels like the point: The Trump administration is rapidly breaking down the research infrastructure for these communities and doing so in a manner that guarantees it can’t be restored. Meanwhile, health disparities will only worsen, and people will suffer for it.
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—With assistance from Carolyn Silverman and Elaine He.
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This column does not necessarily reflect the opinion of the editorial board or Bloomberg LP and its owners.
Lisa Jarvis is a Bloomberg Opinion columnist covering biotech, health care and the pharmaceutical industry. Previously, she was executive editor of Chemical & Engineering News.
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