Lyme Policy Wonk

Although most people believe that a "good" physician licensure board is a "tough" one that protects people from bad doctors, medical boards that abuse their tremendous power, can persecutes or even destroy good doctors. Those in the Lyme community are aware of the relentless prosecution of Dr. Charles Ray Jones in Connecticut. The case which has dragged on for years and cost an enormous amount of money seems specifically designed to accomplish only one purpose–to put Dr. Jones out of business. The case is particularly disturbing because the Connecticut Department of Public Health had previously said that it recognized two standards of care in the treatment of Lyme disease and would not prosecute physicians solely because they followed a standard of care that provided for longer term treatment of Lyme disease. This is abuse of power by a medical board, pure and simple.

A recent article in Lancet written primarily by authors of the IDSA Lyme guidelines aims ”to blow apart the world of the Lyme disease advocates”–a goal that sounds more appropriate to warfare than medical journalism. Most of the authors of the article were under investigation by the Connecticut Attorney General for violation of antitrust laws in connection with the development process for the IDSA Lyme guidelines. The opinion piece is included in Lancet’s “personal view” section and reads like a personal vendetta from those named in the antitrust investigation, referring to patient advocacy groups as “antiscience” and making ad hominem attacks on physicians who treat chronic Lyme disease.

Drs. Macauda and colleagues (including Peter Krause) conducted a survey of residents in the New England area and found: “The majority of our survey respondents believe that the Lyme disease spirochete can persist following antibiotic treatment, that a standard course of treatment for 2 to 4 weeks is often not curative, and that long-term antibiotic therapy of >2 months is sometimes useful.” The authors of the study recommend that state and federal agencies increase efforts to educate the public to curtail the “widespread belief in chronic Lyme”. But surely something’s wrong with this conclusion. The survey population was HIGHLY educated—almost half had a graduate degree and an additional third had a BA. They had extensive knowledge about the disease. Should we then assume, as the authors did, that their views reflect ignorance? Or should we assume that they actually just disagree with the IDSA claim that all patients are cured in 30 days, that persistent symptoms reflect “some other disease”, and that “chronic Lyme” doesn’t exist? Disagreement is not ignorance. Almost all of the participants knew at least one person with Lyme disease. Essentially, these people are saying what those of us in the Lyme community have known for some time: The IDSA guidelines are out of sync with reality.

This is a terrific resource that explains what made the AIDS patient advocacy movement successful. It's is available for free. Here's an excerpt: "Change is possible. But in order to
create change, the focused voices of advocates must be heard through the din. Individuals and organizations must do the hard work of becoming ready to question the status quo, and be smart enough to present well-founded alternatives. Strong leaders in government must pave the path and prepare to stay the course. Specific strategies with clear goals must be established in order to hold people accountable."

A new study, "Bartonella and intraocular inflammation: a series of cases and review of literature looks at inflammation of the eye caused by bartonella", by Dr. Kalogeropoulos and colleagues looks at the role of Bartonella in eye inflammation. Eight patients with the diagnosis of Bartonella henselae and two patients with B. quintana intraocular inflammation were identified. Intraocular involvement caused not only by B. henselae but also by B. quintana is being diagnosed with increasing frequency. A high index of suspicion is needed because the spectrum of Bartonella intraocular inflammation is very large.

There is a lot to like about the Virginia Governor’s Task Force on Lyme Disease findings, which were unanimously adopted on June 30th after a number of public hearings. The report totals 19 pages and it is remarkably balanced. Congratulations to all involved! I want to share with you what I like about the report by highlighting key points from the findings on Diagnosis, Treatment, Public Education and Prevention, and Children.

In 2009 prior to the IDSA hearing, CALDA wanted patient voices to be heard and conducted a survey that drew over 4,000 responses. It ended up being the largest survey of Lyme patients ever conducted in the United States. Today, the results of this survey were published in Health Policy in a study by Johnson, Aylward and Stricker. Health Policy is a highly regarded peer-reviewed journal that explores health policy issues. This survey focused on 2,424 respondents whose clinical diagnosis was supported by positive test results. The study examines problems with access to healthcare and burden of illness, and it found that although patients with Lyme disease suffered a substantial burden of illness, they had significant barriers to healthcare access. Specifically, patients with Lyme disease had difficulty obtaining diagnosis and treatment for their illness, traveled great distances to receive healthcare, were turned down for health insurance based on their illness, and had difficulty receiving care at local hospitals.

Dr. Matthew Liang from Harvard made an interesting presentation at the Institute of Medicine Lyme Workshop. I have excerpted important points for those who don’t have the time to wade through the full report. Although I think his tick transmission times are too long for comfort, the balance of his presentation is worth of look.