Things are looking up for sufferers of Lyme disease, at least in terms of awareness and grantmaking in the philanthrosphere. It's about time, too.
We recently looked into Lyme disease, and were surprised to find that it's actually one of the fastest-growing infectious diseases in the U.S.—not, as we thought, a relatively obscure problem restricted to the northeastern part of the country, where it was first identified. Lyme now infects over 300,000 Americans each year and leaves up to 20 percent with persistent, life-altering symptoms.
That's a pretty high toll, and yet major private grants for research on Lyme tend to be few and far between. Which makes this a great niche for philanthropists seeking a cause where their money can be indispensable.
Enter the hedge fund billionaire Steve Cohen and his wife Alexandra, who've just given Bay Area Lyme Foundation a $6.5 million grant—the largest private donation ever for Lyme disease research. The gift supports Bay Area Lyme’s mission of using new scientific research and innovations to make Lyme disease easy to diagnose and simple to cure.
Getting the attention of the Cohens was an important advance for Bay Area Lyme. Cohen has given away more than a quarter of a billion dolllars in the last decade, much of it to healthcare and research. Now, the Cohen Foundation Lyme Initiative is investing to cure Lyme.
Why is this wealthy couple so interested in Lyme disease? Well, as is so often the case in these situations, there's a personal dimension. Alexandra Cohen has suffered from Lyme disease.
But, whatever the reason for the gift, it's a big deal for the field. “This is a truly meaningful donation as it will help us continue our efforts to encourage collaboration among researchers, and significantly increase the amount of research currently being conducted,” said Linda Giampa, executive director of Bay Area Lyme Foundation, in a press release. “A great amount of research is needed to understand the bacteria that cause Lyme disease. This philanthropic grant will help us continue to fund innovative Lyme disease projects and, more importantly, attract new research talent into the field of Lyme.”
That last point, bringing in new talent, is key. As we've discussed elsewhere, one way that philanthropy can make big advances on tough health challenges is underwriting efforts that incentivize research on these challenges—particularly by younger researchers still deciding where to focus their work. The Sandler Foundation, for example, did this successfully through the American Asthma Foundation.
In addition to their big gift to Bay Area Lyme, the Cohens have supported scholarships for doctors and researchers through the Lyme Disease Association that aim to bridge the gap between research and clinical practice. Sharing information is especially critical with so many tick-borne diseases now in circulation—at least 16 of them.
If diagnosed correctly and soon after infection, a tick-borne infection can usually be cleared by antibiotics. Unfortunately, there's no medically certain way to diagnose it, and its early symptoms (rash, fever, joint pain) resemble other, more common problems. And awareness and understanding of Lyme—on the part of both the public and the medical community—has been pretty low, contributing to missed diagnoses and inadequate treatment. Untreated, Lyme can take hold in the joints and lead to a lifetime of pain and serious problems for its sufferers, including severe arthritis and other health issues.
Even with the Cohens' substantial infusion of cash, there is nowhere near the level of philanthropy on Lyme needed to educate, ensure better care, or fund the research needed for a cure. But Lyme awareness and funding is building from such low levels that the Cohen gift could be transformative.