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Bills

Federal and State Bills on Lyme Disease
http://www.geocities.com/HotSprings/Oasis/6455/politics-links.html

Lyme and Infectious Disease Information and Fairness in Treatment  (LIFT)  Act

Senate Bill - S.969                                                   House
Bill - HR.2118

Put the “Public” back in Public Health!  


ACTION NEEDED

The Lyme Disease Foundation, other Lyme groups, and public policy experts
worked very hard with Congressional members to craft LIFT.  LIFT provides a
needed public voice into Federal tick-borne disease programs.  

We need your support because the bills have an excellent chance of passage if
you act now! 

Have your Senators sign-on to S. 969 by having them contact Christie Onoda
(202-224-2823) in Senator Chris Dodd’s office or Sen. Rick Santorum.  Have
your Representative sign-on to HR. 2118 by having him/her contact Alan
Eisenberg (202-225-4276) in Rep. Greenwood's office or Chris Kukla
(202-225-6506) in Rep. Lowey's office.

Congress email addresses: www.Senate.gov, www.House.gov. Or call the Capital
Hill Operator 202-224-3121.

Encourage others to get their Congressional members to sign-on too!

ADVANTAGES OF THE BILL(s)

1. The new legislation was crafted, as agreed upon by members of Congress, to
respond to current needs and the General Accounting Office’s recent review of
Federal tick-borne activity.
2. It covers activity in all states and is not limited to just the top 10
states with LD cases.
3. The content is streamlined and passes through only 1 committee in the
Senate and 1 in the House before going to the floor for approval.  This
significantly increases the bills chance for passage.
4.  It establishes a Tick-Borne Advisory Committee in the Office of the
Director of the Department of Health and Human Services (DHHS) which:

• Provides Committee Reports on the governments actions balanced with public
need regarding: testing, misuse of the LD surveillance definition,
physician/public awareness, access to disability benefits, and problems
arising with insurer & medical licensing boards.
• Adheres to the Federal statutes required to establish such committees.
Other disease groups have found this type of committee a very effective
method for groups to work with government officials.
• Increases government responsiveness to public need and coordination of
activities.
• Has oversight and input into DHHS agency efforts. e.g. NIH, CDC, Social
Security Administration, FDA.
• Assures that a public voice and broad scientific opinion will be
represented in government actions.
• Includes uniform appointment method for committee members, with: 3
scientific community members with experience working with patient groups; 3
nonprofit advocate members; 3 clinicians with long-term experience working
with patients & groups; and 2 patient representatives.
• Includes diverse nonvoting government advisors from specific areas with
extensive experience.

5. Lists Findings that address: the severity of these diseases and costs to
society; patient problems with insurance and obtaining medical care;
physician retaliation for treating difficult cases; lack of a perfect test
hindering real solutions; and problems of adverse events for Lyme disease
vaccine volunteers.
6. Appropriates $7 million for the Department of Defense to establish a
research unit to protect our troops.
7. Appropriates $14 million for the Centers for Disease Control and
Prevention, doubling its tick disease budget to: develop improved tests,
include other tick-borne diseases, and reeducate others about the
inappropriate use of the LD case surveillance definition for diagnosis and
treatment decisions.  
8. Adheres to the wishes of Congress to not specify money for the National
Institutes of Health. This increases the bills chance of passing.

Thanks,
Karen V-Forschner

Karen Vanderhoof-Forschner, BS, MBA, CPCU, CLU
Lyme Disease Foundation, One Financial Plaza, Hartford, CT 06103    
860-525-2000   www.Lyme.org

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Please write Letters

New York Times Magazine

In the New York Times Magazine June 18, 2001 edition, distributed Saturday17, there is an article entitled Stalking Dr. Steere by David Grann. (read it below) It is imperative that everyone nationwide immediately respond (no later than Monday 19) preferably by email or if not possible, by fax. ACTION Responses should include some of the following: · short and carefully worded so as not to be inflammatory which would validate the article's premise that the Lyme community is irrational and prone to violence. · Do not mention your doctors' names · Letters should not personally attack Steere or the author but should be factually based and directed at the issue. · Emphasize that it is improbable that many who get Lyme are treated and cured but continue with the same symptoms.

CC: Governor Pataki (gov.pataki@chamber.state.ny.us Gov. George Pataki State Capital Albany, NY 12224) Send to: NY Times Magazine E-mail magazine@NY Times.com FAX: 212 556-3830 NY Times Magazine 229 W. 43rd Street NY, NY 10036

http://www.nytimes.com/2001/06/17/magazine/17LYMEDISEASE.html

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Conferences/ Events

The Lyme Disease Association's Third Annual National Lyme Disease Conference, Princeton, NJ,  Saturday, November 10, 2001 (CME'S pending) 

LDF 2002 Conference Dates - April 5th and 6th, Farmington, Connecticut, Marriott

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In The Headlines

Fri Jul 13, 2001  9:55 pm
THE NEW YORK OBSERVER

Ticked at The Times: I Had Lyme!
by Bruce Feirstein


The worst thing I've ever been told came from the lips of a doctor at the State University of New York at Stony Brook Medical Center in June 1998. "You have neurological damage," said Patricia Coyle, a neurologist in her mid-40's who specializes in Lyme disease. She seemed tired and overworked as she read from my latest medical tests and 10-year history of misdiagnoses. "The Lyme spirochete has crossed into your central nervous system and affected the blood flow in your brain," she said. "It's affected your ability to think, speak, reason and remember."

http://www.observer.com/pages/story.asp?ID=4549

Fri Jul 13, 2001 
Different views of Lyme Disease

Different views of Lyme Disease from those afflicted by Laurie E. Leavy

The many facets to the story of Lyme Disease continue to evolve as new studies, new treatments and new controversies emerge. There are physicians, patients, HMO's, advocating agencies and legislators mixed in the fray.

http://www.northcountynews.com/sports2.htm

Boston Globe Online - Metro Region - Ticked off

Ticked off

Long-term sufferers of Lyme disease fight for help

By Anne Barnard, Globe Staff, 7/10/2001

The diagnosis - Lyme disease - was almost a relief. Finally, Linda Hilliard had an explanation for many, if not all, of the odd symptoms that had racked her body for seven years: fatigue, chills, headaches, arthritis, asthma, heart trouble.
''I had finally figured out what was the problem,'' recalled Hilliard, who quit her nursing job at a Boston teaching hospital because of her illness.
http://www.boston.com/dailyglobe2/191/metro/Ticked_off+.shtml

Doctors rethink Lyme disease 

By Marjory Sherman Eagle-Tribune Writer     July 8, 2001

The tiny deer tick, no bigger than a poppy seed, is causing a huge conflict in medicine. The controversy -- pitting doctors against patients, and dividing some doctors into opposing camps -- swirls over how to diagnose and treat Lyme disease, a serious illness spread by the tick.

http://www.eagletribune.com/framesets/searcharch.htm

In Lyme Disease Debate, Some Patients Feel Lost

By Jane Gross    July 7, 2001

HYDE PARK, N.Y. — Sandy Samelson could barely lift her head from her husband's shoulder when it was her turn to speak at a Lyme disease support group here in Dutchess County, where per capita incidence of the tick-borne infection is among the highest in the world.

 http://www.nytimes.com/2001/07/07/health/07LYME.html

Certainty and Uncertainty in Treatment of Lyme Disease

By PHILIP J. HILTS Keith Meyers/The New York Times

Deer and white-footed mice are carriers of the bacteria that cause Lyme disease. Deer ticks feed on the blood of those animals and can spread the disease to humans they bite.

http://www.nytimes.com/2001/07/10/health/10LYME.html?searchpv=nytToday

The Bitter Feud over LYMErix Big Pharma Takes on the Wrong Little Osp

by Pamela Weintraub Posted July 6, 2001 · Issue 106

Abstract: While Glaxo insists that LYMErix is safe and effective, the questions continue to mount. Is the vaccine provoking a raging, destructive immune response? Is it turning asymptomatic Lyme into symptomatic forms of infection? Is the disease definition itself arbitrary or wrong? And, finally, why are these questions being asked now, after LYMErix has already been released?

http://news.bmn.com/hmsbeagle/106/notes/feature3

Stalking Dr. Steere Over Lyme Disease

By DAVID GRANN     June 17, 2001

Last year, Dr. Allen Steere, one of the world's most renowned medical researchers and rheumatologists, began to fear patients. It was not so much the ones he had treated, though he occasionally had to worry about them too, but the ones who had started to call his office, threatening him, claiming he was responsible for their suffering. They insisted that he was denying them treatment for an acute form of chronic Lyme disease, a strand of the ordinarily more modest infection that they believed slipped into the bloodstream undetected and remained there for years, causing joint pain, chronic fatigue, suicidal depression, paralysis and even death.

http://www.nytimes.com/2001/06/17/magazine/17LYMEDISEASE.html

Lyme Disease Is Hard to Catch and Easy to Halt, Study Finds