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Congress Addresses Lyme Issues

July 17, 2011

July 17, 2011. The all volunteer national Lyme Disease Association (LDA) is pleased to announce the introduction of a bill and proposed legislative actions that focus attention on the growing concerns surrounding Lyme and tick borne diseases.

Congressman Christopher Smith (R-NJ) introduced HR-2557, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2011, on Friday, July 15, 2011, along with cosponsors Frank Wolf (VA), Tim Holden (PA), and Chris Gibson (NY).

Congressman Smith’s bill, HR-2557, requires the Secretary of Health and Human Services to establish a Tick-Borne Diseases Advisory Committee to address a variety of important issues. The Committee will be charged with advising Federal agencies on priorities related to Lyme and tick-borne disease issues and will be composed of scientists, representatives from government agencies, health care providers and patient representatives. The Committee is charged with ensuring that a broad spectrum of scientific and stake-holder viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced.

Congressman Smith, Chairman of the Congressional Lyme Disease Caucus for the past seven years, has worked diligently to foster greater knowledge about tick-borne diseases over the years. Amongst his many Lyme-related endeavors, he hosted a Lyme and Tick-Borne Diseases Forum last summer in Wall Township, NJ, for health officials, medical professionals and the public, with over 300 people in attendance. Pat Smith of the LDA was one of the guest speakers.

Senator Richard Blumenthal (D-CT) has plans to highlight legislation to combat the spread of Lyme disease. He will meet with volunteer patient advocates from the Connecticut based Lyme disease group, Time for Lyme (TFL), an affiliate of the Lyme Disease Association, at the Connecticut Agricultural Experiment Station in New Haven on Monday, July 18, 2011.

Senator Blumenthal, who served an unprecedented five terms as Attorney General in Connecticut, is known for his efforts to make real and lasting difference in the lives of the people. He has been a long-time public defender of Lyme disease patients rights.

The Lyme Disease Association (LDA), an organization that seeks to eliminate tick-borne diseases by funding research, educating the public, and providing scientific conferences for doctors, is grateful to Congressman Smith, Senator Blumenthal, the bill cosponsors and staff for their enduring commitment to improve the health of countless patients suffering from Lyme and tick-borne diseases.

For more information please visit the LDA website www.LymeDiseaseAssociation.org

Contact: Pat Smith, President, Lyme Disease Association, Inc.  PO Box 1438, Jackson, NJ 08527. Toll free information line: 888-366-6611. Fax 732-938-7215.  Email president@LymeDiseaseAssociation.org

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Congressman Christopher Smith Press Release /

Senator Richard Blumenthal Press Release

Senator Richard Blumenthal Senator Blumenthal

LDA Honors Congressman Smith (NJ)

October 3, 2009

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At the Lyme Disease Association’s 10th Annual Scientific Conference in National Harbor, MD Congressman Christopher Smith was Honored for his 20 years of service to the Lyme community.

Senator Dodd (CT) Introduces Lyme Bill

June 25, 2009

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Senator Chris Dodd (D-CT) along with Senator Susan Collins (R-ME) introduced today the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009.

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Senator Chris Dodd (D-CT), a senior member of the Senate Health, Education, Labor and Pensions Committee and Chairman of its Subcommittee on Children and Families, along with Senator Susan Collins (R-ME) introduced today the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009. The bill is co-sponsored by Senators Jack Reed (D-RI), Joe Lieberman (ID-CT), Sheldon Whitehouse (D-RI), and Benjamin Cardin (D-MD).

“Every year, tens of thousands of Americans working or playing outdoors are bitten by ticks. For most, it is nothing more than a minor annoyance. But approximately 20,000 Americans contract Lyme disease each year, and the numbers are rising,” said Dodd. “And because Lyme disease is difficult to diagnose, many experts believe the true number of cases each year could be as much as ten or twelve times the reported number. Worst of all, it’s our children who are most at risk.”

The bill would require that the Secretary of Health and Human Services establish a Tick-Borne Diseases Advisory Committee within the Office of the Secretary to address tick-borne diseases with other Federal agencies and private organizations. It also would require the Secretary act through Federal agencies to engage in activities including working to increase public education, creating a physician education program and sponsoring scientific conferences on tick-borne diseases.

The bill is supported by Time for Lyme, Inc., a Connecticut-based organization that seeks to eliminate tick-borne diseases by promoting research, education and legislation.

“Thank you Senator Dodd for representing the interests of New England, as well as the rest of the country including other endemic areas such as the upper Midwest, California and the Pacific Northwest,” said Diane Blanchard, co-Chair of Time for Lyme, Inc. “Your leadership and vision coupled with your role on the national healthcare stage send a powerful message that the US government will protect those who cannot protect themselves. The bill you are sponsoring and introducing will provide desperately needed funding to find the missing answers to help those afflicted and halt further spread of the disease.”

The full text of Senator Dodd’s introduction as prepared for delivery is below:

MR. DODD. Mr. President, I rise today to join my fellow New Englander, Senator Susan Collins of Maine, in introducing the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009.

As families in New England look forward to outdoor fun this summer – and as families around the country look forward to vacationing in New England – they might not be thinking about the risks and dangers associated with hiking, camping, and other outdoor activities.

But every year, tens of thousands of Americans working or playing outdoors are bitten by ticks.

For most, a tick bite is nothing more than a minor annoyance. But approximately 20,000 Americans contract Lyme disease each year, and the numbers are rising. And because Lyme disease is difficult to diagnose, many experts believe the true number of cases each year could be as much as ten or twelve times the reported number. Worst of all, it’s our children who are most at risk.

Lyme disease was first described in my home state of Connecticut, and we still have the unfortunate distinction of being ten times more likely to contract Lyme disease than the rest of the nation. But the Centers for Disease Control and Prevention has received reports of new cases from 46 states and the District of Columbia. And according to some estimates, Lyme disease costs our nation more than $2 billion in medical costs each year.

Lyme disease can affect every part of the body. Tens of thousands of Americans suffer through pain, sever fatigue, sleep disturbance, and cognitive difficulties, among many other symptoms. Some of these victims are able to lead normal lives, finding ways to cope with the disease. But many more find the disease significantly disrupts their lives, preventing them from everyday experiences that we all take for granted.

The legislation we offer today directs the Secretary of Health and Human Services to establish a Tick-Borne Diseases Advisory Committee at HHS to coordinate efforts and improve communication between the federal government, medical experts, physicians, and the public.

It will improve diagnostic efforts, establish a national clearinghouse for research and reporting, and require that scientific viewpoints on this often-frustrating disease be disseminated in a balanced way.

It contains tools for researchers, physicians, and the public to improve awareness and treatment.

Finally, it requires the Secretary to prepare and submit to Congress an annual report tracking developments related to Lyme disease, its spread, its treatment, and its impact on families in Connecticut and around the country.

Lyme disease is a frustrating puzzle for physicians, a burden on our nation’s health care system, and most importantly, a threat to American families enjoying our beautiful outdoor spaces.

I want to specifically mention and thank the organization from my home state of Connecticut that worked closely with me to develop this legislation, Time for Lyme. The co-chairs and founders of Time for Lyme, Diane Blanchard and Debbie Siciliano, are tireless advocates for the patients struggling with chronic Lyme disease. This is not their job. They are parents whose children suffer from this disease. They work to find time in their busy schedules to make a difference. This is their mission and they give me hope that we can get this done.

I also want to thank my good friend, Senator Collins, for her leadership on this issue. And I want to thank Senators Reed, Lieberman, Cardin, and Whitehouse for their support for this bill. Whether it’s fishing on the Housatonic River or exploring Gillette Castle State Park near my home in East Haddam, Connecticut families enjoy a variety of outdoor activities.

But Lyme disease remains a persistent and dangerous risk for my constituents, for Senator Collins’s constituents, and for those across the country. With leadership from this body and better coordination from federal agencies, we can more effectively combat this disease, better protect our children and families, and make our outdoor spaces safer places to work and play.

I urge my colleagues to join Senator Collins and myself in support of this legislation and thank them kindly for their consideration.

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Congressman Hall (NY) Backs Lyme Bill

April 20, 2009

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Hall Calls on Federal Government to Increase Fight Against Lyme Disease, Backs Bill to Expand Funding for Treatment and Prevention

Friday, April 17, 2009

-Legislation Would Provide $100M Over 5 Years to Expand Lyme-Related Research and Education

-NY Has Most Lyme Cases in Nation, Dutchess County Leads the State-

Wappingers Falls, NY – Joining with local Lyme Disease advocates and victims in the county home to a nearly one-quarter of New York State’s diagnosed cases, U.S. Rep. John Hall (D-Dover) today announced he is pushing new federal measures to provide nearly $100 Million in expanded funding for Lyme Disease treatment and prevention over the next five years. This financial support to combat Lyme would be provided by the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009 (H.R. 1179), which Hall is a co-sponsor of. Additionally, Hall has written a letter advocating for a $10 million investment for research into Lyme disease and other tick-borne illnesses through the Congressionally Directed Medical Research program.

“We need to get a commitment from the federal government to properly educate people about how to avoid exposure to Lyme disease and what actions need to be taken if you think you’ve become infected,” said Hall, a member of the Congressional Lyme Disease Caucus. “If the federal and state governments make a commitment that matches that which has been made by Dutchess County, nothing else will have as positive and lasting influence in reducing the incidence of Lyme disease both locally and nationally.”

The $100 Million over five years provided by the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009 would be used to expand federal investments in the efforts to prevent more Lyme disease infections, educate both doctors and the public how to spot the signs of Lyme disease and advance the research activities that are making modern treatments for infected people so much more effective than their predecessors. Also, the Lyme-target funding for the Congressionally Directed Medical Research program that Hall has called for would direct one of America’s most important medical research programs to supply millions of dollars of research grants annually to help forge new and better treatments for the disease.

“I am appalled at the lack of concern about Lyme disease,” said Pat Smith, president of the national Lyme Disease Association. “Our children are being struck down by this disease more than any other segment of the population, yet they cannot get properly diagnosed and treated because there is no accurate test and little research to answer the questions such as why some people continue to have symptoms and what is the role of co-infections. We need the federal bill HR 1179 to focus government attention and monies on this growing threat from our outdoors.”

More than 220,000 Americans develop Lyme disease each year. New York State currently leads the nation in the number of Lyme Disease cases with over 27,000 reported in 2007, nearly 15 percent of the national total. Since 1993 there has been almost a 50 percent increase in the number of Lyme disease diagnoses in New York. Dutchess County alone accounts for roughly one-quarter of those diagnoses, and has the third highest number of new infections of any county in the country.

One such local resident who was afflicted by Lyme Disease and now advocates for its better treatment is Jill Auerbach, Chair of the Hudson Valley Lyme Disease Association. Ms. Auerbach suffered for far too long because her Lyme Disease went undiagnosed or misdiagnosed for years. After suffering from Lyme symptoms but having been undiagnosed with the disease for at least a decade, Ms. Auerbach finally had to leave her job. She stopped going to doctors after countless dismissals that her illness was purely mental and not actually physical. However, at a point when Ms. Auerbach felt she had no recourse left, a friend who had been treated for Lyme disease provided her with the names of several “Lyme-Literate” physicians whose disease-specific expertise allowed her to finally be diagnosed and treated for Lyme. Soon after she was able to return to her job and the normalcy in life she had been missing for so long.

“I live in Dutchess County, one of the top three counties in the nation for Lyme Disease cases, yet I still get calls from community people who can’t locate a physician to diagnose or treat them. I find it unconscionable that after three decades of expanding epidemic, we still do not have widespread programs educating physicians and the public about the disease in this country,” said Ms. Auerbach. “We are very appreciative of Congressman Hall’s concern, interest and actions in combating this serious health threat to our region and nation.”

“The Hudson Valley’s natural beauty is unrivaled, but unfortunately so are the threats to public health from ticks,” Hall added. “Residents, visitors and especially our children should not have to fear for their safety from Lyme Disease, or even its treatment, when taking advantage of our area’s natural resources.”

Smith Unveils Lyme Disease Bill

February 27, 2009

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WASHINGTON, D.C. – Congressmen Chris Smith (R-NJ) today announced the introduction of a bill he wrote to combat Lyme disease, and thanked original co-sponsors Bart Stupak (D-MI) Frank Wolf (R-VA) and Tim Holden, (D-PA).

FOR IMMEDIATE RELEASE: Contact: Jeff Sagnip (609) 585-7878

Feb. 27, 2009

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CDC Data: Cases on the rise, highest among kids ages 5-14

Smith is the sponsor of the “Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2009.” The measure, H.R. 1179, would expand federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee. Smith, Stupak, Wolf and Holden are co-chairs of the House Lyme Disease Caucus.

H.R. 1179 authorizes a much needed increase in total research and education of $100 million over five years. The bill also contains measures to ensure that resources are expended effectively to provide the most benefit to people with Lyme and other tick-borne diseases. It also seeks improved surveillance and prevention and clinical outcomes research to determine the long-term course of the illness and effectiveness of different treatments. The Tick-Borne Diseases Advisory Committee would ensure coordination and communication among many federal agencies, a broad range of medical professionals, and patients.

“Lyme is one of the most prevalent diseases in the U.S. today,” said Smith. “About 220,000 Americans develop Lyme disease each year, and we suspect that number is a conservative estimate. This bill provides a comprehensive national effort to step up the fight against this ever-growing threat. My state of New Jersey is particularly hard hit.”

While Lyme accounts for 90 percent of tick-borne diseases in the U.S., the same tick species spreads other diseases, such as anaplasmosis and babesiosis. Other tick species spread diseases, such as Rocky Mountain spotted fever and southern tick-associated illness. More than 30 affiliate organizations of the Lyme Disease Association Inc., headquartered in Jackson, N.J. in Smith’s district, support the measure.

“I am pleased to join my colleagues on the Lyme Disease Caucus in introducing this legislation to help prevent, accurately diagnose and effectively treat Lyme disease and other tick-borne illnesses that impact more than 200,000 Americans every year,” Stupak said. “Although Lyme disease receives little attention, cases remain on the rise in the United States and in 63 countries around the world. Devoting modest resources to education and prevention will save us millions that would otherwise be spent on treatment down the road.”

“Federal efforts to address Lyme Disease should be a priority,” said Congressman Wolf. “This legislation, which will create a Lyme and Tick-Borne Disease Advisory Committee at the Department of Health and Human Services and authorize funding for the development of a more sensitive and more accurate test to diagnose this dreaded disease, is critical. Not only is this legislation aimed at treatment and research to assist those suffering from Lyme, it would also heighten education and awareness efforts to ensure those at risk of being infected know how to protect themselves and their families.”

“This legislation represents years of work with the Lyme advocacy community to reach consensus on how to best move forward,” said Rep. Holden. “It aims to deliver on promises made to Lyme patients and their families to better focus the federal government’s efforts on detection and research for more effective treatments.”

The Centers for Disease Control & Prevention (CDC) estimates that only 10 percent of Lyme cases meeting this criteria may be reported. Lyme disease can lead to chronic illness and can affect every system in the body, including the central nervous system. Advanced symptoms include arthritis of weight-bearing joints, neurological and cardiac problems, encephalopathy and memory problems. The CDC has determined that from 1992 to 2006, the incidence of Lyme disease was highest among children aged 5 to 14 years of age.

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