lyme article 5/08 NJ protest

Discussion in 'Lyme Disease Archives' started by bakeman, May 7, 2008.

  1. bakeman

    bakeman New Member

    i was searching news looking to find info on the recent cfs conferences in the UK and i stumbled on this so i thought i would post it.


    Protest calls attention to Lyme disease bill
    Pallone: Health panel focused on food and drug safety


    LONG BRANCH - A "Lyme Disease Rights" protest was planned to be held yesterday outside Rep. Frank Pallone's office on Broadway in Long Branch from noon to 2 p.m.

    The protest was organized by Lyme Rights, a grass-roots group that is seeking to have HR 741, the Lyme bill, put on the Energy & Commerce Health Subcommittee agenda for a hearing.

    According to a press release from Lyme Rights, the Lyme Disease Association (LDA) spearheaded a patient campaign to see that the bill be posted for a hearing before the health committee.

    The House Energy and Commerce Committee told the LDA that the bill had been posted and the patients'message had been heard, according to the release, but the LDA said the bill was never posted.

    Lyme Rights members decided to take matters into their own hands and planned the protest to be held outside Pallone's office, the release states.

    "Congressman Pallone is deliberately ignoring tens of thousands of sick patients nationwide," said JoanWire, 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," Wire said, adding, "Every day we read about Mr. Pallone's concern about fish in New Jersey, yet he ignores our sick children."

    "This is an important issue, but right now the Health Subcommittee has over 700 bills before it that are awaiting a hearing," Pallone said in a prepared statement Monday. "Currently, the subcommittee is focused on food and drug safety legislation, and protectingMedicaid and the Children's Health Insurance Program from harmful attacks from the Bush Administration."

    Patients from across the country are mobilizing in New Jersey under the Lyme Rights banner to demand action on HR 741, according to the release, which states that Pallone is chairman of the Energy & Commerce Health Subcommittee and has direct control over the Lyme legislation.

    "It appears Congress and Mr. Pallone are listening to the Infectious Diseases Society of America [IDSA]," the Lyme Rights group states in the release. "IDSAhas paid lobbyists and opposes the bill and all patient initiated Lyme legislation.

    "IDSA says there is no chronic Lyme disease. IDSA published guidelines that are against all treatment beyond a few weeks for Lyme disease, are against alternative treatments for Lyme disease, are against supplements for Lyme and are against allowing doctors to have any discretion in diagnosing the disease," the release states.

    The Lyme Rights group further says that the IDSA is being investigated by the attorney general of Connecticut, Richard Blumenthal, for violations of the anti-trust law in development of the IDSAguidelines.

    HR 741, the Lyme and Tick-Borne Disease Prevention, Education & ResearchAct of 2007, authorizes $100 million to be appropriated for tick-borne diseases research over five years, according to the press release.

    The funding will support several goals, including improving diagnostic testing and outcomes research, enhancing public health surveillance systems, and improving public education to prevent new cases of Lyme and other tick-borne diseases.

    The funds would also help create an advisory committee on Lyme and other tickborne diseases where patients would have a voice in Lyme disease for the first time, the release states.

    Lyme is the most prevalent vectorborne disease in the country and it has been joined by other tick-borne infections, including babesiosis, anaplasmosis/ehrlichiosis and tick-borne Bartonella, transmitted by the bite of the same deer ticks that carry the Lyme disease bacteria.

    Lyme has been reported in all 50 states and is found in 65 countries worldwide. Lyme disease is often misdiagnosed as multiple sclerosis, amyotrophic lateral sclerosis (ALS, also called Lou Gehrig's disease), chronic fatigue syndrome, fibromyalgia,Alzheimer's and lupus, and if it goes underdiagnosed or is improperly treated, itmay cause patients to suffer persistent health problems.

    For more information on Lyme disease and on HR 741, visit www.LymeDiseaseAssociation. org.