"It's a plague! It really is," asserted Howard Stern in an interview with Daryl Hall, who suffers from Lyme disease along with his wife and two step-children. "A lot of people don't know this, but it's a serious problem." Stern went on to say, as Hall agreed, that Lyme disease is a plague. As two New Yorkers who are surrounded by whole communities being struck with the disease, Stern and Hall are not alone in recognizing that Lyme disease is the silent epidemic that's taken over their city.
Jane Marke, MD believes that Lyme disease is the new AIDS epidemic in New York. "I encounter so many people here who either have Lyme disease or have a family member afflicted with the disease. It's become a serious issue, but nobody is talking about it," Marke said.
Actress Karen Allen (Raiders of the Lost Ark), who was struck with Lyme 12 years ago, describes the scope of the problem. "I hardly know anyone whose life, their own or family members, is not being impacted by Lyme disease," Allen said. "It is a devastating disease that has reached epidemic proportions. We must report accurately on the scope of Lyme and other tick-borne diseases."
Desperate Lyme patients who have been crippled by the disease gathered in front of The New York Times building in Manhattan on September 17, to call for greater coverage of the Lyme disease pandemic. Over 150 people including 30 wheelchair users lined the sidewalks. Activists traveled from Quebec, Missouri, Texas, Washington State, Washington, DC, and surrounding Northeastern states. Patients held a silent, candlelight vigil, to shed light on the silent epidemic and invisibility of the disease. Signs were held saying, "Lyme Disease is a Pandemic. Where's the Coverage?" and "Silence Won't Stop an Epidemic."
Seven Butoh dancers from the Vangeline Theater performed in silence to represent the silent suffering of Lyme patients. "Vangeline Theater is very proud to support this protest today, offering our silent Butoh dance in the hope of bringing greater awareness to the public about this devastating disease," according to a press statement from the theater.
Activists used The New York Times as a symbol of the media as a whole and implored the press to bring greater coverage to this disease.
"Increased media coverage will mean the difference between crippling debilitation and a normal life for hundreds of thousands of people. Greater public awareness can lead to prevention and increased funding for research, and that's our goal with this event," said Jill Auerbach, chairperson of the Hudson Valley Lyme Disease Association.
Rates of Lyme disease have rapidly escalated in recent years with the Centers for Disease Control and Prevention (CDC) announcing in 2013 that rather than 30,000 new Lyme cases annually, there's an estimated 300,000.
Despite the rapidly escalating rates, the media has given Lyme significantly less coverage than other diseases that are less prevalent in the United States.
A Google news archives search shows 12,100 results for "Lyme disease" in contrast to 117,000 for "HIV."
Annual rates of Lyme disease far exceed annual rates of HIV in the United States by sixfold. Dr. Marc Conant, who was at the forefront of the AIDS movement, said that we are repeating past mistakes with Lyme disease made previously when handling the AIDS epidemic. "In the early days of the AIDS crisis, there was little effort made to do public awareness and consequently the epidemic escalated to disastrous proportions," Conant said.
Unlike the AIDS epidemic of the 1980s, where many able-bodied people took to the streets on behalf of sick AIDS patients, those struggling with Lyme disease have been primarily waging this battle alone.
Kathleen Hanna, feminist activist and former lead singer of Bikini Kill, describes the struggle:
Late stage Lyme disease has wreaked havoc in my life and stolen much of my career. I know at least 10 people personally who have it and hundreds of fans have written me emails and letters about their experiences. Most of us are too sick to protest so we need help from our friends who are able-bodied. This is an epidemic at its tipping point.
Sick Lyme patients are fighting a David and Goliath war against the CDC and HMOs who assert that a two- to four-week course of antibiotics cures all patients. But people like 34-year-old Josh Cutler, who is still severely ill after taking the recommended treatment, insist that a short course of antibiotics does not work for many: "We're dealing with an all-profit, no-care attitude by HMOs and it's having a serious impact on families and our economy."
Four-time Academy Award nominee Jane Alexander also believes that the recommended treatment does not always work. "Right now, one of my grandsons is being treated for Lyme disease. I have had it three times and many of my family and friends have also had it in the past 40 years," Alexander said. "We are the lucky ones; we had doctors who diagnosed it quickly and gave us adequate medicine. Those I know who were not so lucky have terrible debilitating sickness of one kind or another, which lasts for years, perhaps a lifetime. Lyme disease is a scourge which is only going to get worse with climate change."
Recent studies have found that even with early detected and treated cases, a significant number of patients go on to have mild to severe symptoms. Researcher John Aucott, MD at Johns Hopkins University has found that more than one-third of people who are early diagnosed and treated continue to have ongoing illness.
Attorney Lorraine Johnson, executive director for LymeDisease.org, describes the financial impact of Lyme disease:
Eighty-four percent [of Lyme patients] are not diagnosed within four months; 65 percent of those with chronic Lyme have had to cut back on or quit work or school. . . . One thing that is certain is that ignoring this problem is costly and grows more costly every day that we fail to intervene.
Richard Horowitz, MD explains the long-term consequences on future generations. "We're talking about a worldwide epidemic that is affecting the future generations of this country, dumbing down America," Horowitz said. "This lowers down your IQ; it affects your memory and concentration . . . These organisms will get into pregnant women and get into children . . . There's got to be an awakening soon because this epidemic is spreading."