Federal funding for Lyme disease research has stagnated in recent years.

As the Threat of Lyme Disease Rises, Why Hasn’t Research Funding Followed Suit?

Federal funding for Lyme disease research has stagnated in recent years. Visual: NIH NIAID/Flickr

In 1987, Sherrill Franklin was pregnant and living in Delaware County, Pennsylvania, when she discovered a rash on her leg as big as a dinner plate. She had been bitten by a tick. She soon began to suffer fatigue, a sore throat, and severe arthritis that made her hands feel “like claws.” It took almost two years, and a three-week course of intravenous antibiotics, for her to get back on her feet.

Two decades later, Franklin got a second tick bite, and this time she developed more extensive neurological symptoms. She lost weight, experienced heart complications, and had to be rushed to the hospital by ambulance. She was eventually diagnosed with Graves’ disease, an immune disorder that her endocrinologist said could have been triggered by Lyme disease. Today, Franklin is still experiencing symptoms. After countless visits to health care experts, she says she’s spent $50,000 of her own money on medical help.

Partner content, op-eds, and Undark editorials.

“The best thing about Lyme disease is you usually don’t die,” Franklin says. “The worst thing about it is that you don’t die.”

Franklin is not alone. According to the U.S. Centers for Disease Control and Prevention (CDC), annual cases of Lyme disease and other tick-borne illnesses in the U.S. have skyrocketed to more than 300,000 — up from just 50,000 three decades ago. And those totals are thought to underestimate the true tally of patients who suffer from chronic tick-borne illnesses. A Johns Hopkins study estimates that Americans now spend up to $1.3 billion a year battling Lyme disease alone. Yet, the research that could help us better understand, treat, and prevent the disease remains woefully underfunded. That needs to change.

The recent explosion in Lyme disease cases stems from a perfect storm of climate and environmental change: Global warming has made northern latitudes more hospitable to the tiny blacklegged ticks that transmit the disease, and rapid deforestation and development have left large populations exposed to the wooded areas that harbor the ticks. The CDC reports that the number of tickborne illnesses in the U.S. has doubled from 2004 to 2016, and a new study finds that Lyme disease, once primarily a scourge of the northeast, has now spread to all 50 states. Economist Marcus Davidsson predicts that as many as one million Americans will be infected in 2018. And experts say it will only get worse.

The growing medical crisis has exacted not only a physical but a financial toll as well. Policy experts say that, after accounting for lost productivity and hard-to-detect chronic conditions, the real costs of Lyme disease could be many times more than the $1.3 billion estimated in the Johns Hopkins study.

Laurie Johnson, executive director of the Climate Cost Project, and co-founder Sieren Ernst are working to home in on the true societal costs of Lyme disease. The team has been collecting surveys from Lyme disease patients to create a database of the patients’ medical expenses. So far, the results are astounding. Half of the respondents reported more than $30,000 in out-of-pocket expenditures on Lyme disease treatments, with some reporting more than $200,000. “We believe the data is just the tip of the iceberg,” Ernst says.

What’s more, the rising threat of tick-borne disease has led Americans to take fewer trips outdoors — up to a billion fewer trips annually in the northeastern U.S. alone, according to a Yale study published last year. The authors of that study estimate that the economic burden associated with the lost trips could amount to as much as $5 billion annually.

As the societal costs of Lyme disease soar, funding for Lyme disease research remains in a rut. An unpublished draft report by the U.S. Department of Health and Human Services Tick-Borne Disease Working Group finds that, while the National Institutes of Health and the CDC spend $53,571 and $14,054 respectively for each new case of HIV/AIDS, they spend just $90 and $35 per new case of Lyme disease. “Federal funding for tick-borne disease today is orders of magnitude lower, compared to other health threats, and it has failed to increase as the problem has grown,” the report states.

Dr. John Aucott, chair of the working group and director of the Johns Hopkins Lyme Disease Research Center, says the federal research community is not doing enough to find an accurate test and a cure for Lyme disease. He adds that the problem is compounded by controversies surrounding the symptoms of chronic Lyme disease, which makes it difficult for patients to get proper medical care. 

In late August came a ray of hope from Capitol Hill. Senate Minority Leader Charles Schumer announced that, after five years of stagnant funding, the Senate had authorized a 12 percent increase for the CDC’s research on Lyme disease and other tick-borne illnesses for the 2019 fiscal year. The measure would raise allocations from $10.7 million to $12 million.

Still, patients like Sherrill Franklin say that’s sorely inadequate, and that the measure would do little to address chronic conditions that afflict millions like her. As the planet warms and populations grow, tick-borne illnesses are skyrocketing. It’s time for politicians to mount a serious response to the rising threat.

William “Rocky” Kistner is a multimedia journalist who writes about environmental issues and climate change. He publishes stories at www.TheRockyFiles.com and lives near Washington, D.C.

UPDATE: Figures cited in the Tick-Borne Disease Working Group’s 2018 report to Congress were finalized following publication of this piece. According to the final report, the National Institutes of Health and the CDC spend $77,355 and $20,293, respectively, for each new case of HIV/AIDS, while they spend $768 and
$302 per new case of Lyme disease.

Rocky Kistner is a multimedia journalist reporting on environmental topics near Washington, D.C. He has worked for network television, radio, print, and online media for more than 30 years. His website is therockyfiles.com