PHOTO: HEIKO BARTH/SHUTTERSTOCK

PHOTO: HEIKO BARTH/SHUTTERSTOCK

It was 18 increasingly unpleasant months between Alex Cohen‘s first symptom—a pain in the sole of her foot—and her diagnosis of Lyme disease. Along the way, she was told she had everything from lupus to fibromyalgia to multiple sclerosis to mercury poisoning from her fillings. “I had none of the above,” she said. “Finally, I met this doctor in New York who treated me for Lyme and it was a new day.” That was about 12 years ago, but it wasn’t the end of her journey with Lyme disease.

In fact, it led to the Steven and Alexandra Cohen Foundation‘s transformation into the leading private funder of research for Lyme and tickborne illnesses, now among the fastest-growing infectious diseases in the United States. As Alex’s symptoms persisted and diversified in the years after her infection, the Cohens learned what they could about the state of treatment and research for Lyme. They found mostly gaps; against the backdrop of all the other pressing health concerns facing the country, Lyme simply hadn’t been a major priority for either private or federal funders.

“There were four or five organizations out there, but their budgets (for Lyme) were maybe a few million each,” recalled Jeanne Melino, Cohen Foundation Executive Director. “But you’re looking at a disease that needs hundreds of millions of dollars to help solve.”

Unfamiliar Territory

The Cohen Foundation, fueled by a portion of Steven Cohen’s $13 billion in hedge-fund wealth, had deep pockets but it didn’t have deep experience with medical research. It has funded education, veterans, the arts, and underserved communities, and children’s hospitals. Foundation leaders knew they couldn’t just throw money at the problem. So how did a relatively small organization that hadn’t previously been a big funder of research, become the country’s strategic and financial pace-setter for in the complex world of Lyme and tickborne diseases?

Around 2014, the Cohen foundation engaged the Bridgespan Group, the philanthropy consulting group that has offices in the U.S., India, and South Africa. Bridgespan didn’t have much experience with Lyme or tick-borne disease either, but they did have background surveying fields in medical research for philanthropists and foundations.

“Bridgespan helped lay out the landscape and how you’d attack the problem,” said Melino. “It became apparent that it was underfunded and that there wasn’t a lot of researchers.” Following several months of input from Bridgespan about research funding generally, and Lyme specifically, the Cohen Foundation team put together a scientific review board to provide guidance on funding and specific grant requests; their review board consists of about two dozen researchers and physicians. At Bridgespan’s recommendation, they also hired Bennett Nemser as senior program officer, overseeing the Lyme and tickborne disease portfolio; Nemser is an epidemiologist whose background includes consulting for the World Health Organization and co-authored research papers on malaria, HIV and other global health threats.

In the five years since deciding to address Lyme and tickborne conditions, the foundation says it has given a total of $60 million in this area and now has programs supporting development of diagnostic tools, treatment, human vaccination, awareness and education, big data, and ecological prevention. It funds researchers at several universities, including Tufts, Northeastern, Columbia, Tulane, UCLA, and Johns Hopkins. Cohen has partnered with the California-based Bay Area Lyme Foundation to create a biorepository of samples for research. Its LymeLight Foundation assists low-income families with children that have tick-borne conditions. The foundation also runs an annual, two-day scientific conference.

Building Lyme-literacy

In the years since the Cohen foundation has built up its Lyme initiatives, the federal government has also boosted its focus on research into these illnesses, says Cohen. But funding through the National Institutes of Health remains low—only around $30 million a year—and current medical diagnostics, treatments, and health insurance coverage are nowhere near adequate. The biggest gaps are still in the area of treatment. In short, when people get sick with Lyme or the related diseases, going to the doctor is often just the start of a long, frustrating and expensive journey.

“Research takes a long time—it could take ten years for something to come to fruition, if you’re lucky—and in the meantime, patients are suffering,” said Melino. “It’s the one area where we don’t have time to waste.”

Now, while it continues to fund scientific research, the Cohen Foundation has moved to create a model for best practices in care for people suffering from tick-borne diseases—a Clinical Center of Excellence (CCE), to be based in the New York City area. The foundation called for proposals, including plans for caregiver training, patient affordability, as well as research; they’re currently reviewing the proposals and will announce grant decisions early next year.

“One of the biggest hurdles we have is the shortage of doctors who are Lyme literate,” said Nemser. Because many doctors are unfamiliar with Lyme and its signs, which can mimic many other conditions, incorrect diagnoses are common, leading to incorrect or delayed treatments. When treatments—including antibiotics—are delivered soon after infection, most patients are successfully cured. But 10 to 20 percent of patients never fully clear the disease and remain at risk for lifelong chronic and even debilitating symptoms.

The Cohen Foundation team hopes the CCE, once established and running, will become a model that can be replicated throughout the country.

The diseases can affect any number of tissues, organs, or systems in the body, said Cohen. “It’s a complicated disease and there’s not a one-size-fits-all approach to care.” Care for these patients can require extra focus from doctors willing to take on the large constellations of symptoms, from severe joint pain to mental health issues. “We are working to educate more doctors about Lyme. We’ve met a lot of patients who cannot find clinicians to treat them, or have to travel long distances.”

Lyme Used to be the Zebra

According to the CDC, the number of confirmed and probable cases of Lyme disease annually has increased sharply. But in the last 23 years, researchers have identified seven new pathogens in ticks. But the other diseases must be treated differently than Lyme: now it’s known that ticks carry bacterial, parasitic and viral pathogens. And Cohen foundation leaders say each disease requires devoted research programs to develop diagnostic tools, treatments, and vaccines.

Some of the increase in Lyme diagnoses may be a positive sign, the Cohen team points out, theorizing that doctors are diagnosing more cases of Lyme and other tick-borne illnesses because they’re finally looking for them and are more likely to know them when they see them.

But scientists say the disease is indeed a growing problem, fueled in part by a warming climate that is boosting the number of ticks in the environment, lengthening their life cycle, and giving them more opportunity to bite and infect people. Nemser put it this way: “Doctors used to say, ‘when you hear hoofbeats, think horses, not zebras.’ Lyme used to be the zebra. Now it’s the horse.”

Cohen’s Long—and Expensive—Road to Lyme Treatment

After her first Lyme diagnosis, doctors determined that Cohen had other tickborne co-infections. But getting care wasn’t easy—even for Cohen, who is rich, and can afford any medical test and any doctor. She even went to Germany for treatment—Europe is also a Lyme disease hotspot. Cohen spends about $1,500 per month on supplements and estimates she has spent $150,000 over the years on her Lyme-related medical care. But Cohen and the others in the foundation know that most people can’t afford these sorts of costs; their goal for the Center for Excellence is to help bring tickborne disease into mainstream healthcare.

Nowadays, though Cohen is generally much better, she isn’t cured. But at least she knows what she’s up against. That kind of awareness is possibly the most important development to come out of the Cohen foundation’s work to date: until more doctors know about tickborne diseases when they see sick patients, too many people will risk life-altering health problems.

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