The mailers arrived in late September, courtesy of the Romney campaign—glossy and full color, with a photo of a smiling doctor easing the concerns of a middle-aged white couple. Inside was a promise: “Romney and Ryan will do more to fight the spread of Lyme disease.” It rattled off a list of steps the Republican ticket would take to thwart a “massive epidemic,” and promised to protect doctors from malpractice cases.
The initial response from political observers was bemusement, followed by derision. As the Washington Examiner‘s Philip Klein put it, “We may look back at this as epitomizing the smallness of the Romney campaign.”
But from his perch in the exurbs of Northern Virginia, Michael Farris knew better. Romney wasn’t just microtargeting about microbes; he’d taken a side in one of the most contentious debates in American medicine—a heated dispute complete with antitrust investigations, congressional hearings, and allegations of criminal malpractice on both sides. “I’ve worked in AIDS and other infectious diseases,” says Dr. Gary Wormser, lead author of the Infectious Diseases Society of America’s 2006 guidelines on Lyme. “I’ve never seen anything like Lyme disease.”
Few people have done more to fan those flames than Farris, a homeschooling advocate, constitutional lawyer, and evangelical power broker who founded the arch-conservative Patrick Henry College in Purcellville, Virginia, 12 years ago to prepare Christian homeschoolers for careers in politics.
“In Western Loudoun County, it’s almost 100 percent of families that have been touched by Lyme disease,” Farris says when we meet in his office in early October, offering up a figure he concedes is based on speculation. “Who’s gonna win Virginia? Loudoun’s gonna be the bellwether. You change 5, 6, 7 percent of the vote, that’s a big deal in the presidential race.”
If Farris is right, the GOP may have struck electoral gold with the unlikeliest of strategies. But in his rush to court swing state voters, is Romney playing politics with public health? (The Romney campaign did not respond to requests for comment.)
Named for the Connecticut town where it was first identified 35 years ago, Lyme disease is a bacterial infection transmitted to humans by black-and-red, sesame-seed-size deer ticks that embed themselves in your skin.
Most cases of Lyme disease are detected early—often by a tell-tale bull’s-eye-shaped rash—and treated by antibiotics with little cost or damage. It is not—according to the Centers for Disease Control and Prevention, the Infectious Disease Society of America (IDSA, a leading professional organization), and just about every researcher who’s studied it—chronic by nature. But in some cases, as the CDC notes, people who have been diagnosed with Lyme disease will continue to experience Lyme-like symptoms after they’ve been cured. There’s no one perfect explanation for this, but experts attribute it to a combination of residual damage and other unrelated maladies. It so happens that many of the most notable Lyme symptoms, such as joint pain, paralysis, and fatigue, are also symptoms of much more common ailments like depression and arthritis.
But advocates for patients who experience long-term symptoms aren’t buying it. They believe that those lingering symptoms are, in fact, signs of something more malignant—”chronic Lyme.” What’s more, because the Lyme disease tests produce a high percentage of false negatives in the early stages (they approach 100 percent accuracy after about four weeks), they believe thousands of patients are going untreated for years. These Lyme activists, along with a small group of doctors that bill themselves as “Lyme literate,” believe the way to treat these cases is through costly long-term antibiotics, which aren’t covered by insurance companies. In the eyes of the medical community, this form of treatment is at best ineffective and at worst deadly.
Skeptics believe there’s an obvious reason why the CDC and the IDSA are willfully ignoring evidence of chronic Lyme.
“As in most things, it’s about money,” Farris contends. “They’re protecting their backsides. If they admit they’ve been doing the wrong thing for these patients all these years, I think they’re afraid of major malpractice judgments against them.”
Farris’ emergence as a full-fledged Lyme crusader represents a second act of sorts. A veteran of the Reagan-era Moral Majority, he cut his teeth as a homeschooling activist, founding the Home School Legal Defense Association in 1983.
With Farris’ help, homeschooling went from a fringe concept to a viable alternative for more than a million mostly conservative Christian families—big enough for its own ivory tower. In 2000, he opened Patrick Henry in an elegant brick-and-white-columned colonial building on a 40-acre plot across from a shopping center. He brought evangelical luminaries like John Ashcroft and Left Behind coauthor Tim LaHaye to campus to speak, and implemented a strict code of conduct that prohibits drinking, smoking, and homosexual conduct—all with the goal of grooming a “Joshua Generation” to lead the nation into the promised land.
He discovered Lyme disease in 2009. Leaning forward intensely in his office, an enormous elk’s head mounted on the wall behind him (“hunting now is a patriotic duty of every loyal Loudoun person,” he declares), a wood-carved presidential seal over his left shoulder (a gift from a former federal police officer), and two mounted quills from his first and only Supreme Court oral argument (in 1986) over his right, Farris explains how he became a Lyme activist.
“All my life I’ve fought for the underdogs in politics,” he says. “Homeschoolers were underdogs being beaten up by the teachers unions and the establishment—I just fight for the underdogs, it’s what I do. And so I realized that these people were getting hammered by the political process, because it was not science that was behind these decisions; it was politics.”
It started close to home. For 22 years, Farris’ wife, Vickie, had periodically battled fatigue and aches and pains. With a healthy diet and a routine of four-mile walks, she’d been able to cope. “But about three years ago, she crashed,” Farris says. Vickie tested positive for Lyme. So, eventually, did 7 of the couple’s 10 children, whom Farris speculates received the disease in utero—something the CDC says it has no evidence is even possible.
These days, Farris sees Lyme everywhere he looks. RAs at Patrick Henry get a briefing on the subject from Farris, and he sometimes informally diagnoses students himself. After a member of the school’s celebrated moot court team told him she couldn’t eat the cookies he’d bought them because she’d developed a gluten intolerance, he immediately told her to get tested, noting that gluten intolerance may be a symptom of Lyme. (The student did, in fact, have Lyme, according to Farris, although the IDSA says there’s no evidence the two are connected.)
Two years ago, he distributed a survey to every member of the Home School Legal Defense Fund’s insurance plan, asking if they had been clinically diagnosed with Lyme disease. Seventeen percent of about 250 respondents said yes—never mind that the CDC confirmed just 756 cases of Lyme in the entire state last year, an incidence rate of 0.01 percent. “It’s the best study that’s been done in the whole country on it, which is remarkably horrible, because it wasn’t much of a study,” Farris says.
He sees Loudoun’s “epidemic” as a product of zoning, hunting restrictions, and basic geography. As he puts it, “We’re in the northernmost county and we’re being invaded by the damn Yankee ticks!” To Farris, the real-world consequences of maintaining the status quo are impossible to ignore.
“A little girl in Lovettsville had her brain explode and she died when doctors following the IDSA guidelines gave her steroids. Steroids is like giving jet fuel to the Lyme bacteria. And her brain exploded!”
But experts aren’t buying it. Wormser describes the Lovettsville scenario as implausible, noting that steroids (to be used sparingly) are designed to relieve pressure on the brain. Durland Fish, a professor of epidemiology at Yale who, like Wormser, analogizes Lyme skeptics to members of the Flat Earth Society, says the real malpractice is committed by doctors who ignore the established treatment methods. “Nobody’s died of Lyme disease. They’ve died of Lyme disease treatments,” he says. (A 2010 study led by the CDC examined 114 deaths that had been attributed to Lyme disease, and found that only 1 could be confirmed.)
But what chronic Lyme disease activists lack in medical training and peer-reviewed studies, they’ve made up for in organizational energy and political clout. They have launched their own professional guild, the International Lyme and Associated Diseases Society (ILADS), appointing as its vice president Raphael Stricker, a former director of a penis enlargement clinic who’d been fired by the University of California-San Francisco for falsifying lab data.
ILADS hasn’t made much of a dent in the scientific debate. But they’ve found a foothold in Washington. When New Jersey Rep. Chris Smith (R-N.J.) and Rep. Frank Wolf, the Virginia Republican who represents Loudoun County, held hearings in July on what they called the “hidden epidemic,” they invited Stricker to testify. Lyme skepticism has proven to be a bipartisan affair. In 2006, then-Connecticut Attorney General Richard Blumenthal (now a Democratic senator) launched an investigation into the IDSA, alleging the group was deliberately distorting science so as to continue profiting from patents relating to Lyme. (Blumenthal found that the organization had ignored conflicts of interest; the IDSA agreed to revisit its guidelines for the treatment of Lyme disease, but made no noticeable changes to them).
In Virginia, Farris and Wolf, friends since a trip to the Soviet Union together in the ’80s, have succeeded in flipping the script entirely. Shortly after Republican Bob McDonnell was sworn in as governor in 2010, Farris’ asked his office to investigate Lyme disease. McDonnell commissioned a task force with $50,000 to spend as it pleased, and appointed Farris as its chair.
Farris held hearings across the state, from Fairfax to Roanoke, and last June submitted a 19-page report (PDF) with the backing of the state department of public health. Although carefully worded, it breaks with the scientific consensus on several key points—suggesting, for instance, that long-term antibiotics may be a viable treatment for patients suffering from chronic Lyme. It also explicitly instructed the state’s Department of Health Professions not to discipline doctors who employ treatment methods other than those suggested by the CDC.
One year later, the Loudoun County Board of Supervisors followed suit with a report of its own. No fewer than three members of the all-Republican board have made Lyme disease part of their campaigns, including Farris’ local representative, Janet Clarke, whom he has counseled on the issue. The report lamented that “patients are often misdiagnosed with more familiar conditions” such as ALS and multiple sclerosis, and called for more “‘Lyme literate’ physicians” to practice in Loudoun. The author flagged a compelling statistic that is often highlighted by chronic Lyme activists: “The CDC estimates that only 10% of Lyme disease cases are actually reported.”
But according to Wormser and the IDSA, that’s the opposite of what’s happening. They say patients, egged on by activists like Farris, are self-diagnosing and then seeking out sympathetic doctors who are more than happy to confirm their suspicions. “I’ve seen autism being treated as Lyme disease, ALS patients have been treated as Lyme disease, MS patients have been treated as Lyme disease,” Wormser says. And it’s unclear where the 10 percent figure comes from. “There is no scientific basis for applying a 10x multiplier to the total number of cases currently reported to CDC,” says an agency spokeswoman.
Lyme’s centrality to the political debate in Loudoun County made it an appealing subject for the Romney campaign. In August, the candidate penned a letter to Wolf and Smith commending them for their work, and stating: “We need to ensure that all scientific viewpoints concerning this illness can be heard.” (Smith, in 2008, said that there has been “a significant…cover-up of the fact that chronic Lyme exists.”)
When the Romney campaign reached out to him in August to ask for his support, Farris said he wanted to meet with the candidate before he made up his mind. In September, they met for 15 minutes aboard Romney’s bus after a rally in Fairfax City. They talked about the United Nations Convention on the Rights of the Child, which Farris opposes on the grounds that it will infringe on the rights of parents to, among other things, spank their kids. (Romney gave him his assurance that he would block any such treaty.) And then Farris broached the subject of Lyme disease.
“I told him that there were real concerns with how the CDC was handling it, and that we needed to get real science behind the disease and not be letting politics overrule science,” Farris recalls. “He started asking me about some of the scientific details. It was really interesting to watch his mind work. I was very cognizant that we were running out of time, and I didn’t want to try to download a whole governor’s report, but he was eating it up.”
A few hours after his summit with the candidate was over, Farris got a follow-up email from the Romney campaign. They were planning on sending out a mailer on Lyme disease, and they wanted his advice. “They basically said, ‘Can you make sure this looks okay?'” he says. He suggested a few tweaks, and a few weeks later, the mailers went out. Farris appreciated the gesture, but it wasn’t enough to win his endorsement. In a lengthy posting on his Facebook page, he explained that he would vote for Romney but not encourage others to do the same.
Romney’s involvement has only fueled the controversy. Chronic Lyme advocates fear it will cause observers to view the issue through a partisan lens (see: climate change). After I first reported on the Romney mailer in early October, Deb Pagnotta was one of the dozen or so so-called chronic Lyme disease sufferers to reach out to me.
A former New York state assistant attorney general and currently a communications professor at Iona College, she became seriously ill in 2010. When long-term antibiotics did little to alleviate her symptoms, she found a doctor who identified as “Lyme literate” and went on a five-month course of a different antibiotic Rocephin, taken every day by IV. It seemed to work. But her health care provider flooded her with letters—upwards of 130—demanding that Pagnotta reimburse them for the treatment, which it had covered only by accident. Only after she reached out to her congresswoman, senator, and state attorney general did the insurance company back off.
“The frustrating piece for me, and many people who do indeed face serious health issues relating to Lyme, is that precisely because Romney has touched the issue, it will be dismissed as ridiculous,” Pagnotta said.
“He clearly has no idea what a firestorm of political controversy he was dipping his toe into.”
Wormser and the IDSA wouldn’t comment on the Romney mailer, citing a desire to avoid being entangled in electoral politics, but Fish, the Yale professor, had no such reservations. “It’s really disturbing for me to see these politicians dismiss science and go against the established scientific community for political gain,” he says.
“People believe the Earth is flat and all kinds of crazy beliefs out there,” he adds. “I don’t pretend to understand why people have those beliefs. I think it’s kind of an indictment of the poor quality of science education that we have in this country. But they don’t have to believe in science. No one’s forcing them to believe in science.”
Patrick Henry, the school Farris founded, is one of those institutions that’s been accused of rejecting science. Ten years ago, it was denied accreditation and roiled by a minor faculty revolt because it taught creationism instead of evolution. (It is now a member of the Transnational Association of Christian Colleges and Schools.) But Farris sees no irony in his newfound role as a Galileo.
“I believe that the people who believe in evolution don’t know science,” Farris says. But that’s beside the point. He believes the medical evidence for chronic Lyme is so obvious even an evolutionary biologist could see it. “A person who believes in evolution and a person who believes in creation can both take your temperature.”