- Scientists say the focus on COVID-19 research is having a devastating impact on research into other diseases.
- They say research funds have dwindled, and some laboratories have been forced to close.
- They’re concerned about the long-term impacts of this disruption, and if scientists will leave certain fields to find employment in other areas.
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As 2020 began, lab researchers and philanthropic organizations looking to better treat and cure diseases were flush with hope.
Pushed by a hearty economy, donor funding for research was strong.
In labs, new ideas were blossoming, longtime projects showing promise, and in everything from cancer and diabetes to Parkinson’s disease, breakthroughs felt imminent.
COVID-19 put the brakes on all that.
Officials say the result has been a plunge in donations and the canceling of in-person, high-revenue fundraisers.
In addition, the outbreak has caused the closure of some labs.
Perhaps most importantly, the focus on finding treatments and a vaccine for COVID-19 has taken away attention and money on research for other diseases and illnesses.
The impact, researchers and others say, could be long lasting.
“This could really delay treatment into a next generation,” Carol O’Keefe Hamilton, senior director of development of the ALS Therapy Development Institute in Cambridge, Massachusetts, told Healthline.
“It’s heartbreaking to know that all this research out there is not progressing,” added Rana Herro, PhD, an assistant professor at the University of Cincinnati Department of Pediatrics and a researcher focused in the field of fibrosis. “We are going to see the effect in 2 years, and it’s not going to be good.”
Herro, who moved from Lebanon to Paris to the United States to pursue her passion in finding solutions for fibrosis, had just accepted her position in Cincinnati and moved her lab from California to Ohio just days before the COVID-19 shutdowns stopped most research.
“All my stuff is still in boxes. I lost a year without even starting. I keep asking myself every day, ‘Do I even have my lab anymore?’” Herro told Healthline.
She knows she’s not alone.
“I know of researchers who had to euthanize their mice,” she said.
At the JDRF (formerly the Juvenile Diabetes Research Foundation), 2020 looked to be an extension of what was a successful 2019, according to Aaron Kowalski, the organization’s president and CEO.
The organization, with 45-plus years of investigational research under its belt, had been seeing more breakthroughs, particularly in treatment choices.
“Truly a renaissance time in diabetes research,” Kowalski told Healthline.
The progress included smarter insulin pumps coming to the market, a drug to delay and even prevent the onset of type 1 diabetes nearing the end of successful clinical trials, and the sale of JDRF-supported Semma Therapeutics to a major biopharma company.
Kowalski says the foundation was teed up for a spring series of fundraisers, such as walks and galas, that would bring in tens of millions of dollars.
Then the pandemic hit.
“That’s what was so devastating,” Kowalski said. “We were in a period of amazing progress.”
About 45 percent of JDRF’s funded research has slowed down due to the pandemic, says Sanjoy Dutta, PhD, vice president of research at the organization.
“I expect a lot of [funding organizations] will dedicate their core funding to COVID-19,” Dutta told Healthline. “Even the NIH [National Institutes of Health]. Many types of research could take a hit.”
For Hamilton and her ALS research team, the impact was felt quickly.
The pandemic led to the cancellation or modification of nearly 150 events, including the organization’s signature Tri-State Trek.
“We watched a significant portion of our revenue stream go out the window in 10 days,” Hamilton said.
She notes that shutting down and restarting a laboratory can be expensive.
“The cost of ramping back up has its own unique start-up costs,” she said. “It’s really scary.”
Hamilton says her team had a number of projects that were leaning toward breakthroughs.
They were learning more about ALS by leveraging data from their first-in-kind Precision Medicine Program for people with ALS.
Investigators were also studying familial genetic ALS as well as sequencing genomes.
Her organization opted to send out an email blast, alerting donors in a frank manner.
“We’ve been dying since before Lou Gehrig and we haven’t seen spectacular sums of money thrown in to save us. Does the fact that ALS isn’t contagious make our lives any less valuable?” the donor request reads.
Hamilton knows it was worded strongly and makes no apologies.
“I cannot allow our progress to fall back,” she said. “We will do what we have to.”
Dr. Gwen Nichols, the chief medical officer of the Leukemia & Lymphoma Society, says that 2020 was set up to be a banner research year for her organization, too.
“We could clearly see the impact of our $1.3 billion invested since our founding 70 years ago,” Nichols told Healthline. “People were excited about CAR-T therapy and new immunotherapies for blood cancer. People were excited about the Beat AML master trial, bringing new therapies to acute myeloid leukemia. We were excited by the first research suggesting we are finding ways to predict the onset of blood cancers with the eventual goal of prevention.”
She notes her organization was also having a “banner fundraising year.”
Now, she said, “Many, if not most, labs are shut down with very little hands-on activity.”
“With very few labs open and very slow return to the labs, we know that research progress will be slowed,” she added. “The process of restarting labs, once and where it is safe to return, will also be slow.”
The Michael J. Fox Foundation had set records this past year, funding more than $100 million in new research for treatments and a cure for Parkinson’s disease.
Mark Frasier, PhD, the foundation’s senior vice president of research programs, told Healthline his organization anticipates challenges now in their funding, but its working hard to make it through.
Besides fundraising, he says, the organization is focused on keeping its researchers in the loop and focused.
They’ve created a FAQ program for researchers and are looking at extending terms on funded projects.
They’re also helping researchers find ways to focus while their labs are closed. This includes working on the foundation’s “Fox Insight” platform, an online survey that collects data on health, symptoms, and lifestyle factors.
The Parkinson’s Foundation has updated information on research on its website. The organization also has an information hotline at 1-800-4PD-INFO.
For some researchers, particularly those with projects more challenging to fund, some difficult changes are being considered.
Nicole Prause, a neuroscientist researching human sexual behavior, sexual addiction, and the physiology of sexual response as well as founder of Liberos LLC, an independent research institute, was looking forward to 2020.
Prause had won funding to launch a study on men who experience illness from sexual activity, a condition she says is “a rare and incredibly disruptive thing to life and relationships.”
She had brought in her first participant when the COVID-19 pandemic shut everything down.
“This has so much potential and is so important to many,” Prause told Healthline.
With her research shut down and no plan or pathway to reopen, friends are pushing her to find another project.
That, Prause says, is hard to accept.
“People say, ‘Oh, just do something else,’” she said. “But this matters. I do it because the science is important. If it wasn’t, I’d bail on it.”
For Maribeth O’Connor, the vice president of medical application, business, and product development at SoRSE Technology, the solution may be to simply move.
The company’s research on cannabidiol and how it may help treat cancer and other diseases is one where research funding and progress regularly hits “hiccups.”
Now, the pandemic has brought angst.
“We are exploring going to Australia or Ireland, where they’ve weathered COVID-19 better than we have,” O’Connor told Healthline.
If her company can enter into an agreement elsewhere, she says, they may only see a slowdown of 6 months to a year for their research.
Others are concerned the research disruption could sway scientists to head into different fields where jobs are more plentiful.
Herro explains why it’s heartbreaking to her.
“I left my family to study and work for this,” she said. “This work matters to me. And yet, at times I feel like if I tell people I have not [switched to] working on COVID-19, then they are like, ‘Huh. Why?’ It can really make you feel judged. But you know, I care about the people I research for.”
Herro admits she’s pondering a switch but wavering. One adviser reminded her to focus on why she does what she does and to “not follow the money.”
But when you have a lab to run, a staff to pay, and bills to cover, she realizes she might have to pivot.
“I want to do the science, not try to do the science,” Herro said.
If she does have to look for work in COVID-19 for now, she says, she’s trying to come to terms with what that means.
“Overall, I tried my best to contribute,” Herro said. “I need to accept that what I think is a priority is not always for others. COVID-19 is the priority and not COPD (chronic obstructive pulmonary disease) and other things I work on, and it’s haunting me. But I have to step back and accept that COVID-19 is the priority.”
That could have a longstanding impact on other diseases, as researchers may be forced to make the same shift to survive.
“We could be losing researchers from this,” Dutta said. “Even without COVID-19, it’s hard enough to attract researchers to diabetes. We are at very, very high risk of losing the people we need in the pipeline.”
Hamilton says her group’s strongly worded email brought in a tide of donations for ALS research.
“There was a tremendous response,” she said. “The community really stepped up.”
But, she wonders, is that a sustainable solution?
“This is a community that spends as much as $250,000 a year just to keep their loved one alive,” she said. “We will figure this out, though. I cannot allow this (slowdown) to happen long term.”
In the end, Kowalski says, research-funding groups such as JDRF have no option but to find a solution that keeps diabetes research chugging forward.
“Yesterday, I had to send a note to a family whose 12-year-old child died of (undiagnosed type 1 diabetes),” he said. “In the future, with screening and prevention, that will never have to happen again. So when we ask for donations or for people to fundraise, some say, ‘Why are you doing this now?’ Not everyone can lean in now, and we truly understand that. But if you can, you should.”
“As dark is this sometimes feels, we will come out of this, and I hope we will as an organization stronger than ever,” Dutta said.
“Cancer doesn’t stop because of COVID-19, and the Leukemia & Lymphoma Society continues to do everything we possibly can to keep fueling our mission,” Nichols said. “We cannot afford to lose a generation of researchers because funding is no longer available. These are the very scientists who are helping us get through this crisis. We run the risk of jeopardizing our children’s future by not supporting scientists now as the labs reopen.”
One researcher who has been fighting to keep his scientists, research students, and projects afloat offers a silver lining.
Stephen N. Waggoner, PhD, an assistant professor at the University of Cincinnati Department of Pediatrics, points out that the public is now learning about research and science every day due to the COVID-19 pandemic.
“Perhaps now we will move away from this general mistrust of medicine that had been growing in the world,” he told Healthline. “I mean, one can hope, right?”