COVID-19 Has Threatened the Important Work of Disease Foundations—but Nonprofits Are Adapting

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Power of Ideas

COVID-19 Has Threatened the Important Work of Disease Foundations—but Nonprofits Are Adapting

Author(s)
Members of FasterCures Changemakers
Members of FasterCures Changemakers

Each day, the numbers tell a harrowing story of COVID-19’s path of destruction through our communities: hundreds of thousands of new cases, an utterly devastating death count, and thousands of shuttered businesses. The impact of COVID-19 is unquestionably a crisis for countless systems and sectors.  

For disease-focused foundations, the story is much the same. Revenues are dwindling, employees have been furloughed, and missions put on hold. These organizations are a critical source of patient support, services, and funding to advance a range of research and treatments. But today, disease foundations' important work has been paused, and with it, hope for numerous patients suspended.

We must contribute to a future where access to the most innovative research and the best care is available to all.

As leaders of nonprofit patient-driven foundations, so many of us have undeniably felt the impacts:

  • Revenues are plunging. The cancellation of in-person events has had a catastrophic effect on nonprofit fundraising that online efforts have not come close to replacing. Unfortunately, this steep decline is simply the first domino in a chain reaction that will impact patient care today and cures tomorrow.  

  • Critical medical research is being stalled or even stopped. Foundations are having to retract promised grants to researchers—and even when grants remain in place, work on most non-COVID projects has been slowed or stopped as access to labs has been curtailed. Restarting those projects will take not only time but additional money.  

  • Clinical trials have been put on hold. For patients with conditions for which no Food and Drug Administration-approved treatment exists, clinical trials become the only hope. To date, more than 1,800 non-COVID clinical trials have been stopped during the pandemic. These disruptions not only take away care options for today but the potential of new treatments for tomorrow.

  • The patients we serve are having their care disrupted. A recent survey by the World Health Organization found that more than half of countries are experiencing partial or complete disruptions in care for hypertension, diabetes, cancer, and cardiovascular emergencies. The impacts of care delayed or denied will likely be felt for years to come.  

At the same time, this crisis has made us reach deep into our wells of creativity and resilience. We are experimenting with new fundraising methods and considering innovative business models for our organizations. We are finding ways to serve our patients’ needs in virtual forums. And we are learning some key lessons that will have an impact on our missions and activities into the future.

  1. We can innovate in ways that speed the process of medical innovation when we have to. COVID-19 has shown us that we can make medical research faster and more people-centered at the same time if we work collaboratively and with urgency. Treatments and vaccines are being developed at a record pace. Governments are enabling innovative approaches in areas like telemedicine, informed consent, and remote participation in trials that have been talked about for years. 

  2. Mental health is the tie that binds us all together. Living through this pandemic has exposed for all of us the centrality of mental wellness and its link to physical health. Anxiety and depression go hand-in-hand with and exacerbate all of the primary conditions that we seek to address. We all need to work together to improve mental health research and outcomes for our patients and collaborate to support more and better research and care in this area.  

  3. Racial and ethnic inequities in research and care have been graphically laid bare. We must all do better at considering how we can engage underserved communities in everything we do. We must make sure the information and services we provide are reaching those who need them most. We need to partner with community-based individuals and organizations and integrate them into our activities and decision making. We should consider whether the research we support is representative of those who bear the burden of the disease. And we can support young scientists who are disadvantaged by traditional funding bodies and mechanisms.  

Conditions for nonprofit organizations are undeniably dire right now, and much important work is under threat. Federal leaders must continue to extend all relief provisions to nonprofit organizations as employers and service providers. Tax benefits for charitable contributions should be increased, as should required annual payouts by private foundations and donor-advised funds. Regulatory flexibilities should be extended that help provide care for patients disrupted by COVID, and additional funding provided to agencies like the National Institutes of Health to enable the rapid restart of research. 

At the same time, we in the nonprofit medical research community should seize this opportunity to reconsider and reimagine our work in some fundamental ways. We should identify the ways in which the COVID-19 crisis has enabled us to accelerate progress in disease research and product development and work to ensure those ways of doing business are preserved and improved. We should prioritize more effective treatment approaches for mental health conditions. And we must contribute to a future where access to the most innovative research and the best care is available to all.  

FasterCures Changemakers: 

Randy Beranek
CEO, National Psoriasis Foundation

Kathy Giusti
Executive Chairman, Multiple Myeloma Research Foundation

Michael Kaplan
President and CEO, Melanoma Research Alliance

David Panzirer
Trustee, The Leona M. and Harry B. Helmsley Charitable Trust

Mark Roithmayr
CEO, Alzheimer’s Drug Discovery Foundation

Paula Schneider
President and CEO, Susan G. Komen®

Todd Sherer
CEO, Michael J. Fox Foundation for Parkinson’s Research

Alex Silver
Co-Founder and Chairman, EB Research Partnership

Garen Staglin
Chairman, One Mind

Published December 9, 2020