Feeling the pressure: An update on Dr. Charles Ray Jones

dr_jones_and_marlena.jpg Many people ask us, What’s happening with Dr. Jones? For those of you unfamiliar with the history of Dr. Charles Ray Jones, the Lyme pediatrician featured in UNDER OUR SKIN, you may want to watch this 2-minute interview with Dr. Jones before you read on. Dr. Charles Ray Jones, a 79-year old Connecticut pediatrician, has treated more than 10,000 children with Lyme disease over the course of his career. In addition to seeing patients six days a week, Dr. Jones has spent the last four years and hundreds of thousands of dollars defending himself against state medical board charges of “inappropriate” treatment of children with Lyme and other tick-borne diseases. In late 2005, a divorced Nevada father who disputed having to pay half of his children’s Lyme disease medical bills filed a complaint with the Connecticut Department of Public Health (CT DPH) against Dr. Jones. After investigating the complaint, CT DPH brought charges to the state medical board, alleging that Jones diagnosed Lyme disease in the children without examining them; that he failed to consider other causes for their symptoms; and that he improperly prescribed antibiotics. According to the mother, who is also a registered nurse, Dr. Jones never diagnosed her children before their in-person exam: After an in-depth phone consultation, he simply agreed to renew her son’s azithromycin prescription for the chronic cough that was preventing him from going to school, until she was able to fly the children out to Connecticut for an exam. Long story short, Dr. Jones treated the two children for Lyme disease, and they got better. Dr. Jones got dragged through the courts for months. After two years of hearings and untold expenditures of taxpayer money, the CT DPH issued Dr. Jones a reprimand; placed him on probation for two years; and ordered that he pay a civil penalty of $10,000. This ruling is currently in appeal because of alleged bias with one of the medical board members. On January 6, 2009, a second round of medical board hearings began, this time questioning one of Dr. Jones’s clinical diagnoses of babesiosis, a Lyme co-infection caused by the malaria-like parasite Babesia. Expert testimony against Dr. Jones was provided by Dr. Peter Krause, who testified that a babesiosis diagnosis ideally should be made only after a positive blood test. Dr. Jones and many other tick-borne disease specialists base their diagnoses on test results, history, and symptoms, because the tests don’t always detect all of the Babesia strains and patients with suppressed immune systems don’t always test positive. It’s important to note that Dr. Krause has a patent pending on a Babesia diagnostic procedure, and an excerpt from his patent application says “presently, no optimal test is available for the diagnosis of babesia.” By supporting a standard of care that requires a confirmatory test before treatment, Dr. Krause stands to earn more royalties from his “invention.” What’s more, Dr. Krause is also an author of the 2006 Infectious Disease Society of America (IDSA) Lyme disease guidelines, which are currently being re-reviewed by a conflict-free panel upon orders from the CT attorney general’s office. For a summary of the IDSA Lyme panel’s financial conflicts, see clip #2 here. Dr. Jones supporters and Lyme disease patient advocates claim that the CT medical board hearings are politically motivated, and largely driven, behind the scenes, by the IDSA and insurance companies. They emphasize that none of the children in these cases were harmed; in fact all of them got better under Dr. Jones’s care. The CT medical board, based in Hartford, CT, the “Insurance Capital of the World” sought to impose a four-part Lyme standard of care after the hearings had ended. This standard would make it very difficult for physicians to diagnose and treat Lyme disease based on clinical criteria, and for patients to get insurance coverage for those treatments. Advocates cite the ILADS treatment guidelines, which present evidence that Lyme is a complex multi-systemic disease that must be diagnosed based on exposure, history, symptoms, and tests, given that the currently available Lyme tests miss well over half the positive cases. They also believe that if Dr. Jones is driven out of practice, it will send a chilling message to the mainstream medical community – it’s not safe to treat Lyme patients – and this will result in more truly sick patients being denied care. In the meantime, Dr. Jones wishes to convey his sincerest appreciation to all of his supporters. Because of generous donations to his legal defense fund, he has been able to continue treating desperately sick children during the four years of legal proceedings. Feeling the pressure of the 37% increase in Lyme disease cases from 2006 to 2007, Dr. Jones’s office is averaging three new patient calls a day, in addition to training new Lyme-literate pediatricians through the Turn the Corner Physicians Training Program. [Photo caption: Dr. Charles Ray Jones examining Marlena, the young ballet dancer featured in UNDER OUR SKIN.]