Time is ticking away for Lyme bill to be heard
Those affected by the disease angered over congressman's inaction
BY JENNIFER AMATO Staff Writer
Adults and their children who are sick with Lyme disease are calling on New Jersey Rep. Frank Pallone (D-6th District), chair of the Health Subcommittee of the House Energy and Commerce Committee, to move forward with a congressional hearing for a Lyme disease research bill.

However, despite his initial support of the bill, Pallone has recently announced he is holding off on the bill because of a controversy over whether Lyme is chronic.

This has deeply angered and frustrated patients, who say that HR741: Lyme & Tick-borne Disease Prevention, Education and Research Act of 2007 - which if passed would appropriate $100 million over a course of five years for tick-borne disease research - is a much-needed legislation in the battle against the pain and suffering that Lyme disease causes.

"We have this massive population of Lyme disease patients and tickborne disease patients that are the new AIDS of our future generation," said Jeannine Phillips, chairwoman of the LymeQuest Support Group and Advocacy Project, New Brunswick.

Protesters marched in front of the Long Branch office of Rep. Frank Pallone recently, requesting a Lyme disease research bill be heard before the House of Representatives.

The issue dates back to January 2007, when Rep. Christopher Smith introduced HR741 into the House of Representatives. The bill was identical to the previous year's House bill HR3427, which had died. Then, the Senate version, S1708, was introduced in June 2007.

The bill has since been sitting in the House Committee on Energy & Commerce Health Subcommittee and the Health, Education, Labor & Pensions (HELP) Committee of the Senate. The bill must be heard by the end of June 2008 before summer recess because the bill will die Dec. 31, and there must be sufficient time to have it go through all the appropriate legal stages.

Therefore, patients are urging Pallone to move the bill forward.

However, a major roadblock has been the control of diagnosis, treatment and insurance reimbursement by the Infectious Diseases Society of America (IDSA), according to Pat Smith, president of the national Lyme Disease Association (LDA), which has an office in Jackson, and former vice president of the International Lyme andAssociated Diseases Society.

Actual size of deer ticks

In 2000, the IDSA issued a set of treatment guidelines, and in an October 2006 update, the association stated that Lyme was easily treated with a single (and occasionally a second) course of antibiotics and was not as severe as patients made it seem. Smith said physicians' treatments that had proved to be effective became prohibited, and patients were being steered away from physicians by their insurance companies. Doctors who were thought not to follow IDSA standards often would not treat their patients for Lyme, because they were fearful of repercussions. The IDSA believed that most patients who were thought to have chronic Lyme disease actually had other medical problems.

"Every year we have more and more [patients] and we have less physicians [willing to treat them]," said Smith, who has had the disease for 22 years.

Eighteen months ago, Connecticut Attorney General Richard Blumenthal - from the state that gave Lyme disease its name after a cluster of patients was documented in the mid-'70s - launched an investigation into the IDSA because of allegations by Lyme disease support groups about unethical practices by the IDSA.

On May 1 of this year, Blumenthal announced an agreement stating that the IDSA guidelines were developed by a panel that had conflicts of interest. These guidelines stated that Lyme is not a chronic illness and urged against long-term antibiotics as well as alternative or supplemental treatments.

Blumenthal found that members of the IDSA panel had affiliations with testing, vaccine and product manufacturers, and these conflicts undercut the credibility of the panel that developed the guidelines.

Blumenthal stipulated that an entirely new review panel was needed and that it must examine all of the previous guidelines in a scientific and public manner. He said there must be a line-by-line consideration of the rules, with 75 percent ratification by members of the new panel.

"My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guidelines panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science," Blumenthal said in a press release.

"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests - in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies - to exclude divergent medical evidence and opinion. In today's health care system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards," he added.

In the meantime, over the past six to eight months, the LDAset up a Lyme caucus briefing in front of both House and Senate staffers. However, after the New England Journal published the IDSA guidelines, Smith said Sen. Edward Kennedy, the chair of the HELP Committee, and Pallone - who Smith and Phillips claim personally assured the bill would be heard - did not post the bill.

After a grassroots organization, Lyme Rights, rallied in front of Pallone's office, LymeQuest went to his New Brunswick office April 24 to do the same.

"I still believed if he had the science in front of him … and we could plead our case for our children and for our family members who are so deathly sick, that he would have had no choice but to move the bill to a hearing," Smith said.

The members of advocacy groups then worked against an IDSA rally on May 2, logging in 2,000 calls in one day to the government. They were angered because they said that as soon as IDSA representatives visited Pallone's committee, Pallone backed down from the bill.

"Not only is that unacceptable, that is inappropriate. Here is an elected official endorsing a society that was just investigated for 18 months," Smith said. "Congressman Pallone knew this. The patients are outraged."

Phillips, of LymeQuest, said that the Lyme bill has nothing to do with the IDSA guidelines/review panel, which is why the Lyme activist groups are puzzled about why Pallone will not support the bill. The bill is merely going toward education and research, Phillips said.

Pallone issued a statement in response to a May 7 protest in front of his Long Branch office, saying that "conflicting opinions exist on the diagnosis of Lyme disease" and that "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."

He said he is currently working with the Centers for Disease Control and Prevention to evaluate current programs on prevention, testing and treatment for Lyme.

Also, in a letter addressed to Blumenthal, Pallone said that he does recognize the high incidence rate in New Jersey, and said he is "committed to working with my colleagues in Congress to take the appropriate actions to assist in the prevention, diagnosis and treatment of this devastating disease."

What makes the advocates most confused is the fact that they simply want a hearing on the bill, and money for education, research and prevention. Smith said they are not looking for treatment but instead just need help moving forward.

Phillips added that the groups are not asking the committee to make a decision and they are not asking Pallone to make a decision, they are asking Pallone to "not be the only one who knows about the testimony in the hearing."

"Pallone is saying, 'I don't care if you're sick, I don't care if you're in a wheelchair, I don't care if your kid has been out of school for four or five years. What I care about is that your rallying is tarnishing my image,' " Smith said.

However, Smith said there is some positive news for patients, as the first Lyme and Tick Borne Diseases Research Center opened at Columbia University Medical Center in New York in April 2007 under the direction of Dr. Brian A. Fallon.

Also, the documentary "Under Our Skin," produced by Andy Abrahams Wilson, recently debuted at New York's Tribeca Film Festival and will be featured at other upcoming film festivals.

For more information, visit LymeDiseaseAssociation. org.

Pallone's office may be contacted at 202-225-4671.

Lyme disease

How to remove a tick

• Don t panic.
'
• Get the tick off; try brushing it off first.
• If the tick is firmly attached:
Grasp the tick as close to the skin as possible.
Use rounded forceps or fine-point tweezers.
'
• Don t touch the tick because fluid can be transmitted
through the skin.
• Pull upward slowly and steadily until tick lets go.
'
• Don't use home remedies to remove ticks; they
don t really work.
'
• A kit is now on the market with a specially machined
tool that grasps the tick and pulls it out by rotating it.

If you have been bitten by a tick

• After removing the tick, put it in a jar of alcohol;
write down the date of bite.
• With alcohol or Betadine, disinfect the area
where the tick bite occurred.
• Wash hands thoroughly.
• Watch the area where you were bitten for a month.
• If mouth parts remain in the skin or a rash develops,
consult your doctor and take the tick with you.

Some Lyme-disease symptoms

'
• May get a bull's-eye rash.
• Flu-like symptoms may occur -
fever, headache, fatigue, stiff neck, muscle and
joint pain.
• Weeks or months later -
more severe symptoms may appear involving
heart or nervous system.

Information

www.lymediseaseassociation.org
Lyme Disease Association Inc.
P.O. Box 1438, Jackson, NJ 08527
888-366-6611
Source: New Jersey Department of Health