Protesters ask Pallone to support Lyme bill BY CHRISTINE VARNO Staff Writer LONG BRANCH - Protesters gathered outside Congressman Frank Pallone Jr.'s office on Broadway in Long Branch last week to call attention to a Lyme disease bill currently being considered by the Legislature. The protesters are demanding action on HR-721, which if passed would appropriate $100 million over a course of five years for tick-borne diseases research. Monmouth County resident Pat Smith rallied the crowd of approximately 150 people at the protest onMay 7 where the group was asking Pallone to support the bill. "The time has come for Lyme patients to be heard and seen," Smith said. "They need to provide a face for this invisible epidemic sweeping this great country of ours. "Lyme patients have no more patience for being told, 'you are not sick, you never had Lyme disease, you need psychiatric help.' "Research and education hold the key to unraveling this disease, yet Congress will not even allowour voices or the voices of our treating physicians to be heard," she said. Some of the protesters accuse Pallone of not supporting the bill. Pallone is the chairman of the Energy and Commerce Health Subcommittee, which has control over the health legislation in the House. "Congressman Pallone . . . has not listened to the patients," said Joan Wire, a New Jersey resident whose 15-year-old son has been wheelchair-bound for two years due to Lyme disease. "Other diseases have money and a federal focus, and other diseases allow patients to be part of the process to find a cure for their disease. Mr. Pallone has outright ignored our sick children." Pallone said in a press release that he is awaiting an expert review panel's recommendations to determine the appropriate course of action on Lyme disease. The review panel was created as part of an agreement between the Infectious Diseases Society of America (IDSA) and Connecticut Attorney General Richard Blumenthal to revisit guidelines established in 2006 for the diagnosis and treatment for Lyme disease. In order to avoid conflicts of interest, an independent ombudsman was appointed to ensure that the review panel's recommendations provide accurate information based on the best available scientific and medical findings, according to the press release from Pallone's office. In a letter to Blumenthal, Pallone wrote, "There appear to be some strong differences of opinion in the treatment of Lyme disease and I appreciate that all interested stakeholders will have an opportunity to have their points of view heard through planned public presentations and submission of information as part of the review panel." A minority group of physicians support the theory of chronic Lyme disease and long-term antibiotic treatments, while the IDSA, with a membership of 8,000 medical specialists, established the guidelines that concluded Lyme disease was not chronic. Instead, IDSAfound that Lyme disease is a short-term illness treatable over a six- to eight-week period, according to Pallone's press release. "I am committed to working with my colleagues in Congress to take the appropriate action to assist in the prevention, diagnosis and treatment of this devastating disease," Pallone said. "At a time when significant disagreements exist on treatment, I am hopeful that the panel's final recommendations will give us guidance on how best to proceed so that we can help all of those suffering from Lyme disease." Pallone is also working with the Centers for Disease Control and Prevention to evaluate current programs on prevention, testing and treatment for Lyme disease. The rally was planned in the wake of Blumenthal'sMay 1 announcement that he concluded an investigation of the IDSA. Blumenthal said he had reached a settlement, which forces IDSA to re-examine its Lyme disease guidelines, according to a press release from the local Lyme Rights group. "The settlement shows patients are right," the Lyme Rights group said in the release. "The IDSA is biased against chronic Lyme. "The IDSA panel, which created Lyme disease treatment guidelines, said there is no chronic Lyme and no treatment should be given to patients. "This settlement makes IDSA go back to the drawing board with an unbiased panel in a public manner, and the ramifications are enormous to Lyme patient care everywhere," the group says in the release. Protesters at the rally said that despite Blumenthal's decision, the federal Lyme bills have not been placed on either the Senate or House Health Committee agendas. "Patients are angry and frustrated at this stonewalling by Congress, who they believe has listened to the IDSA lobbying intensely against the bill," the Lyme Rights group said. For more information on Lyme disease and the Lyme bill, visit www.LymeDiseaseAssociation. org.