This is a terrible time for the nation’s 22,000 medical nonprofits.
Fundraisers that support research and activism have been canceled since March with no end in sight. Small-scale donors are struggling to make ends meet. Consumer-based companies have cut way back on sponsorship.
By one estimate, nonprofit income has fallen 70% since the pandemic began.
Kathy Giusti has a plan for that.
Giusti co-founded the Multiple Myeloma Research Foundation in 1998 after being diagnosed with the blood cancer herself. She spent the next two decades building up the foundation, getting donors and funding drug development to combat her disease.
For the last four years, she’s also worked through a grant at Harvard Business School to help gather lessons the MMRF and 300 other medical nonprofits learned through experience and hard work.
“Disease advocates don’t talk to each other,” Giusti said on a recent call.
“No one has enough money, enough people or enough time,” added professor Richard Hamermesh, the other co-chair of the Harvard Business School Kraft Precision Medicine Accelerator.
Now, the duo have published a “playbook” to share these lessons with thousands more.
Advocates can learn a lot from each other, they said. Some are good at collecting the kind of patient data that researchers and companies need to run clinical trials on potential drug candidates. Others are expert at raising venture capital or setting a strategic vision.
And all of America’s disease-related nonprofits now have to rethink what they’re doing in light of COVID-19.
“There’s no better time than now to be understanding how to start your business – but also to reset,” Giusti said.
Nonprofits invest up to about $7 billion a year to advance medical research, according to the National Health Council. But raising that money isn’t easy, and doesn’t always come naturally to people who may never have heard of a disease before they or a loved one was diagnosed with it.
That was how Nicola Mendelsohn first learned about follicular lymphoma – in 2016 when she was diagnosed with the incurable blood cancer. Mendelsohn said Giusti’s guidance has “saved us years” in the formation of the Follicular Lymphoma Foundation.
“Navigating the ecosystem is complicated,” said Mendelsohn, who now considers herself a patient scientist. “This has helped simplify that journey.”
Mendelsohn runs Facebook in Europe, the Middle East and Africa, so she obviously understands people and social media. Her expertise can help other nonprofits that might not be as skilled at communicating with patients and potential funders.
Michael Hund, CEO of the EB Research Partnership, which aims to cure a group of rare, inherited and life-threatening skin diseases called epidermolysis bullosa, has a different skill set. He’s an expert in getting “venture philanthropy,” investors who promote social good with their money.
“Just because you’re a nonprofit doesn’t mean you can’t act like a business,” Hund said. His foundation has started four companies and helped shepherd 30 potential epidermolysis bullosa treatments into clinical trials.
So, at meetings at Harvard Business School and virtually, he has helped draw up advice to other nonprofits looking to access venture philanthropy. At the same time, by being part of the group, he has been able to learn from nonprofits that may have led hundreds of trials instead of 30.
“What can we learn about clinical trial efficiency and innovation that we can apply now?” Hund said. “We’re bringing to the table and getting reciprocal value.”
Such sharing can allow nonprofits to pick up the pace of medical progress, helping people who can’t wait the decades it might otherwise take to come up with an effective treatment or cure.
Giusti said COVID-19 has presented some opportunities for medical nonprofits, such as advances in telemedicine that are allowing more aspects of clinical trials to move online.
The collaborations and focus that have enabled candidate COVID-19 vaccines and treatments to advance faster than ever before are also inspiring, she said.
“I honestly think we won’t ever go back to the way we were” before COVID-19, she said. “If we’re smart, we’ll understand from the COVID-19 world what we can do.”
Contact Karen Weintraub at [email protected]
Health and patient safety coverage at USA TODAY is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.
This article originally appeared on USA TODAY: COVID: Harvard Business School offers roadmap for medical nonprofits