Mark Rohrbaugh and his son Luke give their chickens a snack at their Paeonian Springs home. Rohrbaugh, who was diagnosed with Lyme in 2012, is taking his health insurance company to court for not fully covering his treatment of the disease.
Posted: Thursday, June 4, 2015 10:12 am
Loudoun County long has been at the forefront in efforts to spread the word about how to prevent Lyme disease. But it also is breaking down barriers in the diagnosis and treatment of the debilitating illness.
The county claims one of the highest rates of infection in the nation from the tick-borne illness with nearly 200 confirmed cases a year, prompting the Board of Supervisors to form the Lyme Disease Commission four years ago to try to curb the epidemic.
Through the Loudoun Targets Lyme initiative, signs are now posted in county parks encouraging people to wear bug spray and diligently check themselves for the blacklegged ticks that transmit the disease. Brochures promoting a similar message have been handed out at schools and animated commercials now air before the start of movies in area theaters.
Surveys of residents show the message has successfully gotten out.
“People are much more aware now,” said Loudoun County Health Department Director Dr. David Goodfriend, who provides staff support to the Lyme commission.
But some in the local medical community and among those who have been infected with Lyme say the next front in the battle against the disease is how to improve detection and treatment. The public outreach effort quiets when it comes to helping patients navigate a complicated course to get long-term treatment, in large part because there’s disagreement over how Lyme can affect people.
Mark Rohrbaugh’s journey to get treatment for Lyme is moving to U.S. District Court next week. He’s filed a lawsuit against Cigna Health Insurance in an effort to raise awareness about the obstacles many patients face to get ongoing treatment covered by health insurance.
Rohrbaugh says it took almost three years after he was diagnosed with Lyme before he could get intravenous antibiotics, the treatment that has improved his health. Most insurance companies do not fully cover the costly treatment because the Centers for Disease Control and Prevention says it is not proven to help Lyme victims.
Rohrbaugh was first prescribed intravenous antibiotics in 2012, but he had to decline because he couldn’t afford to pay its $300-a-week cost. His insurance agreed to cover two months of oral antibiotics, but as soon as the prescription was up, his symptoms—debilitating headaches, joint pains and fatigue—returned.
In late 2012, he quit his job as an assistant mortgage manager after he collapsed during a work trip, and he could no longer care for his son on his own because he’d suddenly forget how to do simple tasks. He eventually moved with his wife and son to a smaller home in Paeonian Springs to help afford the intravenous antibiotics, which he took from last November through March when the worst of his symptoms finally subsided.
“This is the best I’ve felt in two and a half years,” Rohrbaugh said.
He considers the bulk of the past three years unnecessary time lost and believes the right treatment after he tested positive for Lyme could have changed that.
“Insurance companies are telling doctors how to treat their patients,” Rohrbaugh said. “Of course we could definitely use the money, but that’s not why I filed this lawsuit. Someone needs to shine a light on this.”
The Lyme Divide
When it comes to Lyme, there is general agreement among doctors and government officials on several key factors—how to prevent it and what a person should do if they find a tick on them. But there is bitter infighting over how best to detect and treat the disease and how long the symptoms can linger.
There are two schools of thought, according to Dr. Samuel M. Shor, chairman of the Loudoun Lyme Disease Commission.
Guidelines set by the Infectious Diseases Society of America and the CDC take the position that diagnostic testing generally is reliable and that the large majority of patients should recover after given a course of antibiotics.
“Any symptoms after that they say is something else,” Shor said.
On the other hand, guidelines published by the International Lyme Associated Disease Society, of which Shor is president-elect, say that Lyme can be a chronic illness that can have severe lasting impacts if not treated. The society also lauds Shor’s research that shows that the two diagnostic tests pushed by the CDC fail to detect the bacteria that causes Lyme about half the time.
“Unfortunately, because of the insensitivities of these tests, people who’ve tested negative but still have these symptoms of chronic Lyme disease are being battered and bounced around [in search of treatment],” Shor said.
Even though there are two sets of published guidelines, most health insurance companies and health departments at the state and county levels adhere to the CDC’s.
That’s meant patients with Lyme are left to pay out of pocket for any long-term treatment, Shor added.
“Their guidelines are held as law—as dogma—so the CDC, the NIH and the general medical community follow those guidelines,” he said, “and for whatever reason, their guidelines for Lyme disease are profoundly flawed.”
Loudoun’s Role
Even with Shor at its helm, Loudoun’s Lyme commission has not formally taken a stand on the debate over how to treat the disease, and likely won’t, according to Goodfriend.
“The current Board of Supervisors have given us a charge and the current charge is to provide education to the public primarily in the form of prevention,” Goodfriend said. “It really is about those daily steps that people can take. Reminding people to protect themselves, protect their family—that we can do.”
Shor agrees that the most cost effective approach is to push prevention. But, he added, it’s still worth the effort—one he described as a David-versus-Goliath task—to convince the general medical community to consider alternatives to improve the health of those who have Lyme.
“I think awareness is first and foremost, but then what do you do about the people who are sick,” he asked. “So I am hoping that the wider medical community will be more accepting of a balanced interpretation of the literature and a more balanced approach.”
There have been recent small victories.
George Mason University researchers—with the help of a clinical trial through Shor’s office, Internal Medicine of Northern Virginia in Reston—developed a new diagnostic “nanotrap” test that literally traps the bacteria that causes Lyme, allowing earlier and more accurate detection. The test is expected to be commercially available soon through Ceres Nanosciences Inc.
Progress also is slowly being made on the treatment side. A couple of months ago, Anthem Blue Cross and Blue Shield authorized the use of an azithromycin antibiotic at a more-than-standard dosage to treat one of Shor’s patients.
“That’s a small step,” he said. “But it’s something.”