A fundraiser in which firefighters collect donations for muscular dystrophy research was canceled this year.

ZUMA Press Inc./Alamy Stock Photo

Sciences COVID-19 reporting is supported by the Pulitzer Center.

Early this year, University of Colorado, Denver, cancer researcher Patricia Ernst was thrilled when her postdoc Therese Vu won a grant from the Leukemia & Lymphoma Society, a nonprofit that has pumped more than $1.2 billion into blood cancer research since its founding in 1949. The funding would allow the scientists to launch studies using a technique to generate malignant leukemia from immature blood cells—an approach that Ernst had been eager to try for more than a decade. To hit the ground running, they journeyed to Vancouver, Canada, for 1 week to learn the technique, and developed a pipeline for novel reagents through a University of Michigan lab. Then, last month, the pair got bad news: The philanthropy organization canceled the grant, citing “unprecedented” revenue losses caused by the COVID-19 pandemic.

“I did anticipate there would be cutbacks,” Ernst says. “But I didn’t think it would be that serious, and I didn’t think it would happen to us.”

Many researchers are having similar experiences. Foundations that fund biomedical research in the United States, the United Kingdom, and elsewhere are reporting record revenue drops because of the pandemic. One major factor: It has forced them to cancel key fundraising events, including glitzy galas, sponsored walks, Broadway partnerships, and even an event that sends thousands of U.S. firefighters into the streets, asking passersby to support medical research by dropping donations into a rubber boot. Many groups are trying to stem the losses by cutting staff and delaying, trimming, or outright canceling grants to researchers.

The chaos imperils a small, but pivotal, part of the scientific ecosystem. Although nonprofits provide just 5% of overall U.S. research funding, they often support small, high-risk pilot studies that later enable researchers to attract larger grants from government funders—what Ross Levine, chair of leukemia research at Memorial Sloan Kettering Cancer Center, calls “training wheels grants.” And many of the grants go to young researchers, helping them launch their careers. “If you’re in a room with researchers of vascular disease, almost all of them will say their first grant came from [us],” says Mariell Jessup, chief science and medical officer at the American Heart Association (AHA).

So far, Jessup says, AHA has been fortunate: Although donations have dropped, the $890 million organization hasn’t had to lay people off or rescind grants—but it has postponed awarding a new round of grants.

The red ink is drowning other U.S. groups. At the National Multiple Sclerosis Society, which last year spent about $40 million of its $190 million budget on research, officials forecast a $60 million shortfall in 2020; they’ve given 78 of their 198 grantees a 15% “haircut.” Susan G. Komen, the largest nonprofit funder of breast cancer research, has laid off about 20% of its 211 employees, closed 30 of its 61 local affiliates, and tabled future grant cycles. The Muscular Dystrophy Association, which counts on its annual “Fill the Boot” fundraiser with firefighters for 25% of its annual revenue, has furloughed many of its development staff and canceled plans to award new grants. At the $724 million American Cancer Society (ACS), a $200 million drop in revenue has prompted it to lay off 1000 of its some 3300 employees. “If current trends continue,” chief medical officer William Cance says, ACS could temporarily cut research funding by half.

Smaller organizations, like Parent Project Muscular Dystrophy (PPMD), have not been spared: PPMD is facing a 35% budgetary gap, says CEO Pat Furlong. Such mom-and-pop organizations occupy a critical niche, catalyzing research on some 7000 rare diseases, and helping develop new treatments for populations often overlooked by larger funders, Furlong says. Because of COVID-19, PPMD has warned grantees that funding is “a day by day process” that might “entail some trimming,” Furlong says, and the group has suspended future funding rounds.

The cutbacks hit close to home for Furlong, whose two sons died from muscular dystrophy in their teens. “In rare diseases, [families] are on this finite path, to change the trajectory for [their] child,” she says. “Even a single day’s delay [for research] can exclude them from the trial [they’ve] been desperate to participate in.”

In the United Kingdom, the Association of Medical Research Charities (AMRC), whose members last year sent £1.9 billion to biomedical researchers (compared with £1.8 billion in funding provided by the U.K. government), is reporting an average 38% drop in fundraising revenue. Organizations that rely on thrift stores and other businesses to raise funds have lost more than 90% of their income. Although the U.K. government has provided financial support to some nonprofits, none of it is available for medical research, and charities also cannot access government support for commercial R&D.

The shortfalls are forcing groups to withdraw or defer grants, says AMRC CEO Aisling Burnand. Cancer Research UK, which funds half of the country’s noncommercial cancer research, has cut its funding by about 10%, or £44 million, says CEO Michelle Mitchell. The cuts will get deeper if charities do not receive more support from the government, she adds, given the nonprofit’s projected shortfall of £150 million. And the crisis could have long-lasting ripple effects on the next generation of research. “We’re in danger of destroying a decade’s worth of work, infrastructure, and future talent,” Mitchell says.

Vu, for example, had hoped to have gathered enough data from her pilot study by October to apply for a grant from the National Institutes of Health (NIH). Now, even if she can find replacement funding, she thinks it will be an additional 12 to 18 months before she can apply to NIH. And because the leukemia researcher is from Australia, a funding cutoff could imperil her U.S. work visa. “I don’t want to be all ‘woe is me,’ but the junior people, we’ve copped it the worst,” she added. “That’s Aussie slang—hammered, we junior people have gotten hammered.”

The loss of nonprofit grants could also hurt researchers seeking funding for high-risk ideas that can’t get support from government funders, says Maryrose Franko, CEO of the Health Research Alliance, which represents 85 nonprofit research funders. “We derisk research for the government, and we embrace failure,” Franko says. “If we’re not funding it, who will?”

With reporting by Cathleen O’Grady.



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