When will Pennsylvania, one of the states affected most by Lyme, stop doing so little about it?
Anyone familiar with Lyme Disease knows that getting correctly diagnosed and sufficiently treated is a crapshoot, even here in Pennsylvania, where local health officials recently announced the number of Lyme cases has increased for the fifth straight year—an estimated 80,000 cases statewide—with most concentrated in Southeastern Pa.
As someone repeatedly misdiagnosed despite presenting a classic constellation of symptoms, I can tell you most local doctors couldn’t identify a case of Lyme if it bit them in the face. And since the standard test boasts an accuracy rating about as effective as a coin toss, it’s often left to drill deeper into the nervous system, where it can cause crippled limbs, impaired cognition and constant nerve pain. It can be fatal.
It’s difficult and expensive to find treatment that helps chronic Lyme. I drove an hour an a half to visit a “Lyme-literate” medical doctor (LLMD) because Philadelphia has a notorious dearth of LLMDs, and my doctor was willing to prescribe the only treatment course I’m aware of that can help: long-term antibiotics.
Some doctors believe long-term antibiotics help eradicate advanced or chronic cases of Lyme and common tick-borne co-infections. Others believe that chronic Lyme doesn’t exist at all and that long-term antibiotics has no benefit.
Two separate medical associations exist because of the divergent views: The Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS). The Lyme and Tick-Borne Diseases Center at Columbia University wrote, “Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles.”
Here’s the core of the problem: The IDSA, the camp that says chronic Lyme doesn’t really exist and long-term antibiotics don’t help, writes the guidelines that most doctors follow. So doctors like mine risk their medical licenses for prescribing long-term antibiotics, even though they see patients regain health.
The debate can be gussied up in the rhetoric of scientific rigor, but it’s about money: Insurance companies often use these guidelines to deny coverage.
Then there’s the fact that at least three independent investigations concluded that IDSA board members have financial conflicts of interest with tests and the insurance industry.
It’s a vicious whirlpool of suck, with patients drowning in the middle.
But there’s a glimmer of hope in Pennsylvania. Two weeks ago, for the first time, Harrisburg hosted public hearings for a landmark piece of legislation that could help Lyme patients.
Senate Bill 1199 would establish a task force toward prevention and education of doctors and the public. It would also protect doctors prescribing longer-term antibiotics from sanctions and mandate that insurance companies cover the treatment they determine is best.
It’s a big deal. Lyme legislation has never made it this far; similar bills have died in Committee for years. Issues were aired, but ultimately progress was hamstrung by a flagrant display of politics.
The room was packed to standing-room-only with jilted Lyme patients. One by one, they stood up and testified how Lyme shattered their lives, how they spent their life savings seeking treatment.
State Sen. Donald White, chair of the Banking & Insurance Committee, had the reaction most people have when they first enter the rabbit hole, learn how serious and complicated Lyme Disease can be and that patients are so underserved.
“I’m just amazed,” he said. “This is very eye-opening to me.”
Next up was Stephen Ostroff, acting physican general for Pennsylvania. Ostroff is chief advisor to the Department of Health on medical matters relevant to Pennsylvanians.
Thing is, he had nothing to say. Right upfront, he announced that due to conflicts of interest he would not testify in any meaningful way (though he was happy to keep talking).
Ostroff essentially said that his role on a committee with the Institute of Medicine was more important.
“While the committee is doing its work, members are expected to refrain from expressing opinions that could affect the outcome of this particular committee,” he said.
“The second issue is that I am a member of the state Board of Medicine and one of the sections of the bill deals with imposing restrictions on the authority and functions of the state board of medicine … I have an inherent conflict,” he added.