Estimating the Cost of Lyme Disease in the United States
Climate Cost Project offers new economic data on Lyme disease
AMHERST—Laurie T. Johnson, the executive director and co-founder of the Climate Cost Project, said increased rates of Lyme disease have been linked to climate change, and are one of the more serious and least understood of its costs.
Her organization, the Climate Cost Project, is a new data and documentary project that is helping to uncover, understand and visualize the costs of climate change to American communities.
“We know very little about uninsured costs people across America are experiencing from climate change impacts. Having seen friends and families devastated both personally and financially by Lyme disease, we felt it was important to start understanding the real costs of the disease to individuals,” Johnson said.
She added that because insurance covers little to none of patients’ treatment costs, experts have no idea how much the disease actually costs individuals and society. But between medical treatment and lost work time, Johnson notes they can easily add up to hundreds of thousands of dollars in health care expenses and lost income.
Johnson, who holds a doctoral degree in economics, co-founded the project because, as an environmental economist and instructor at the University of Massachusetts, she understood how little data there was on the immediate costs of climate change to the American economy.
The project has created a data portal to allow individuals to report their climate costs on a range of climate issues, from flooding to tick-borne illness. Its other major mission is creating the Witnessing Change Video Competition, which invites documentarians to tell the stories of climate change from their own community in short video format.
According to the Center for Disease Control, the number of reported cases of Lyme disease—transmitted by ticks—has more than tripled in the United States since the late 1990s.
“Right now, the disease is highly regional, with 14 states in the Northeast and upper Midwest accounting for 95 percent of confirmed cases,” Johnson said, noting the disease is starting to spread rapidly, with ticks carrying Lyme disease in almost half of all counties across the country.
With few treatment options, and so few covered by insurance, patients are left on their own to find alternative treatments and pay for them, she said.
Consider Dana Carnegie’s story, for example.
Carnegie is a long-time resident of Amherst and works as the communications manager for Girl Scouts of Central & Western Massachusetts.
She contracted Lyme disease in 2006. A standard three-week course of antibiotics eliminated her classic flu-like symptoms at the time, but nine years later, new and more severe symptoms appeared, including debilitating joint pain, numbness, chronic exhaustion and memory loss.
Carnegie tested positive again for Lyme in 2015. This time her treatment took over two years, and much of it was not covered by insurance. She estimates she spent anywhere from $10,000 to $20,000, but feels lucky that she could afford it, had plenty of sick time to cover missed work, and feels fully recovered.
“Unfortunately, Dana’s story is not unique,” Johnson said, explaining that preliminary data from a new survey on Lyme disease costs from the Climate Cost Project finds over half of respondents spending at least $30,000.
Almost one-third spent over $75,000, some more than $200,000, Johnson said. But out of all this spending, only a handful reported experiencing no chronic symptoms at all over the last year. More than half also reported missing work, on average more than four years.
For context, according to the Kaiser Family Foundation, average uncovered costs for some of the most expensive out-of-pocket conditions cap out at around $2,000 per year. For an analysis of who is most vulnerable for out-of-pocket expenses, visit https://www.healthsystemtracker.org/brief/who-is-most-at-risk-for-high-out-of-pocket-health-spending/#item-start.
“We’ve heard from patients and physicians across the country with stories like Dana’s, many significantly worse. We believe the data is just the tip of the iceberg,” said Sieren Ernst, CEO and co-founder of the Climate Cost Project. “Compared to other diseases, out-of-pocket spending may be orders of magnitude higher for tick-borne illness than other diseases. The more data we are able to get from the survey, the clearer the picture we will have.”
The Climate Cost Project is currently looking for people impacted by tick-borne illness and flooding to complete its surveys. You can visit their surveys at www.climatecostproject.org/cic, and learn more about the tick-borne illness survey at https://www.climatecostproject.org/about-tick-borne-illness-survey.