Lyme disease, the nasty tick-borne illness that causes fevers, joint pain and other debilitating symptoms, is one of the fastest growing infectious diseases in the U.S. But it remains virtually ignored by public or private health research funders.
Until recently, it was considered a relatively minor health threat, a problem largely restricted to the northeastern U.S. The actual bummer of Lyme disease is quite a bit bigger.
About 300,000 new cases are diagnosed each year, in 49 of 50 states, not to mention the 65 other countries around the world. It's 10 times more common in the U.S. than the CDC previously estimated.
"Lyme isn't yet on the large foundation radar at all, and the total amount of money that goes into Lyme from NIH is about $29 million per year, which is a paltry amount," said Linda Giampa, executive director of the Bay Area Lyme Foundation.
Just four years old, Bay Area Lyme Foundation is already the largest of the few philanthropies focused on the disease. It's still not very big—it has raised $4 million, so far, for research and education—but it's growing, and bringing about some long-awaited progress for a condition that desperately needs medical advances.
Diagnosed and treated early, Lyme is usually cleared with a course of antibiotics. Problem is, it's hard to diagnose. Current diagnostic tests are weak, and miss up to 60 percent of acute cases. Additionally, symptoms—including fatigue, rash, fever, and joint pain—can resemble other diseases, sending doctors down incorrect treatment paths.
As a result, many people simply never received the right treatment, and the disease takes up more or less permanent residence in their bodies, sometimes dormant for years before flaring to cause severe arthritis or other symptoms.
"If you catch it early, you have a good chance of wiping it out of your body," said Giampa. "If you don't treat it early, it's an insidious bacteria that hides in your joints, and so far there's no cure."
Those with late-stage or post-treatment Lyme can suffer crippling joint and muscular pain, migraines, light or sound sensitivity, cognitive impairment, nausea, fatigue, and even heart or breathing issues. About 500,000 people in the U.S. have chronic forms of the disease.
Lyme receives less than 2 percent of public funding that goes to West Nile virus, for example, a disease that's 50 times less common in this country.
In the last few years, however, a handful of private foundations have managed to turn the spotlight on Lyme, and with it, increasing focus by the research communities.
Bay Area Lyme Foundation's Emerging Leader Award, which provides $100,000 to young researchers, has begun attracting new scientific talent to the field. The group recently announced its RFP for 2015 award recipients. As with most young investigator grants, the award is designed to fund small studies that can generate data necessary to win larger NIH grants.
Bay Area Lyme Foundation has also been working to get Lyme disease on the radar of the big health-focused private foundations, whose deep pockets can really transform the field. "It has been somewhat difficult to do, but we have created programs and are moving some of those larger foundations into Lyme," said Giampa.
Major research centers are also starting to prioritize Lyme research. Just a few months ago, the Johns Hopkins Lyme Disease Clinical Research Center opened its doors. Its director, John Aucott, M.D., is one of the top Lyme experts; he's also on the Bay Area Lyme Foundation's advisory board. Research into Lyme and other tick-borne illnesses is being conducted at Massachusetts General Hospital, in Boston. And Bay Area Lyme Foundation is working with other institutions to establish new research programs.
Among the most pressing needs is the development of a dependable diagnostic that can determine early if someone has the infection.
Want some more bad news? Climate and ecological change are speeding the increase in Lyme disease, assisting in the spread of ticks that carry Lyme and several other co-infections that you also don't want to get. It's definitely time for progress on Lyme.