1

Lyme Disease Physicians and Patients Expose Research Group’s Ploy to Silence Them

FOR IMMEDIATE RELEASE CONTACT:
April 9, 2008 Nicole Rodgers or Eliza Brinkmeyer 202-822-5200, ext. 249/226 

Lyme Disease Physicians and Patients Expose Research Group’s Ploy to Silence Them

Already caught up in an anti-trust investigation, IDSA opposes research bill in order to maintain monopoly over Lyme diagnosis and treatment options

Washington, DC – Physicians specializing in treating chronic Lyme disease and a national coalition of Lyme disease patients and their families today accused a medical research group of trying to exercise monopoly control over research on Lyme and tick-borne diseases.


“We’re very disappointed,” said Pat Smith, president of the national Lyme Disease Association (LDA), responding to a letter to Congress by the Infectious Diseases Society of America (IDSA) that seeks to deny patients a voice regarding the research needed to better understand the disease.

Lyme disease is a serious bacterial infection that develops from the bite of an infected tick. The disease is often misdiagnosed or goes untreated, causing many patients to suffer persistent health problems, including neurological disorders, crippling muscle and joint pain, disabling fatigue, psychological disorders, and even death. Even when Lyme disease is caught early and treated with a short course of antibiotics, the debilitating symptoms can persist and require additional longer-term treatment.

In March, IDSA wrote Congress attacking the Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007, introduced by Chris Smith (R-NJ) and Bart Stupak (D-MI) in the House, and Christopher Dodd (D-CT), Charles Schumer (D-NY) and Chuck Hagel (R-NE) in the Senate. The broadly supported bipartisan bill calls for acceleration of Lyme disease research and creates a new federal advisory committee made up of the full range of scientific viewpoints on Lyme, including a seat for patient advocacy groups.

The IDSA is currently under investigation by the Connecticut Attorney General for abuse of monopoly power and exclusionary conduct in formulating its Lyme disease guidelines, which were developed by a panel that held significant commercial interests in diagnostic tests, vaccines, and consulting arrangements. In its letter to Congress opposing the Lyme Bill, the IDSA failed to mention this ongoing investigation.

IDSA researchers have virtually controlled Lyme disease research for the past 30 years amidst ongoing controversy surrounding its guidelines, which deny patients the right to treatment options and undermine the ability of physicians to use their clinical discretion in treating patients. IDSA provides private health insurance companies with the basis for denying long-term treatment for chronic Lyme disease.

The California Lyme Disease Association (CALDA), national Lyme Disease Association (LDA) and Time for Lyme (TFL) are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this newly emerging infection.




Lyme Disease Association & Mercy Hospital Announce Lyme Disease Forum

Press Contacts 
Local: Heather Okun hokun@epix.net
National: Pat Smith – Lymeliter@aol.com 888 366 6611

Media Advisory        Media Advisory        Media Advisory

Lyme Disease Association & Mercy Hospital Announce Lyme Disease Forum
Local University Student Gives Back to Community after delayed diagnosis changes life

Scranton, Pennsylvania, March 10, 2008–The national Lyme Disease Association (LDA) announces a free public forum to be held at Mercy Hospital on March 31, 2008, 7-10PM, on Lyme and other tick-borne diseases. Featured speakers include Dr. Richard Horowitz, Hyde Park New York, who will discuss the diagnosis and treatment of Lyme disease; and Patricia Smith, Wall Township New Jersey, President of the Lyme Disease Association, who will present the spread of tick-borne diseases and the problems faced by patients.


 

Lyme is the most prevalent vector-borne disease in the country, and it has been joined by other emerging co-infections in the Northeast including babesiosis, anaplasmosis/ ehrlichiosis, and tick-borne Bartonella, transmitted by the bite of the same deer ticks that carry the Lyme disease bacteria. Pennsylvania has consistently ranked number 2 nationwide in reported case numbers of Lyme disease. The NE District in Pennsylvania, which includes Lackawanna County, ranks third of 6 districts in 2006 case numbers and 3rd in incidence over 5 years.

This forum was developed in conjunction with Heather Okun, Marywood student, as part of her professional program at Marywood University. After suffering a tick-bite as a teen, she developed severe cognitive problems that dropped her grades while in high school; yet, she remained undiagnosed for Lyme disease for two years. Heather had intended to become a veterinarian. Subsequent to treatment and then a relapse, however, she was seen by a physician’s office that employed physician’s assistants (PA). Then and there, she decided that she would study to become a PA. Heather, who, is on the verge of graduation, will also be a conference speaker. She says, “It seems appropriate that for my professional contribution which is required for graduation, I tell my story and educate others about this disease that changed my life.” 

Heather’s experience with her Lyme disease not being recognized, is not an uncommon one, especially in children. They are a special concern, because age groups 5-14 years are at highest risk of acquiring Lyme disease. Unfortunately, too many people are unaware that Lyme disease can interfere with the learning process and that many students require special accommodations in the classroom as a result. And since the disease is often misdiagnosed or diagnosed months or years after infection, Lyme disease can cause numerous ongoing physical problems involving the cardiac, neurologic, and musculo-skeletal systems, and it can manifest as psychiatric problems. Neurologic Lyme can even cause a drop in IQ for some students, which can usually be rectified with treatment.

Says LDA President Patricia V. Smith, “LDA has been happy to work with Heather and with Mercy Hospital to provide this forum in an area where Lyme and other tick-borne diseases are too often overlooked as a diagnosis. Awareness is certainly the key to prevention of this disease, and more research needs to be done to answer the tough questions, such as why some people do not get totally better.” 

ABOUT THE LYME DISEASE ASSOCIATION (LDA): —The Lyme Disease Association (LDA) is a national volunteer run nonprofit that devotes ninety-six percent of its funds to programs–funding research, education, prevention and patient support. LDA-funded research has been published in peer review including JAMA, Neurology, Infection, and the Proceedings of the National Academy of Science. Recognizing that the ability to find solutions involves a multi-disciplinary effort, the LDA has partnered with businesses, patient groups, celebrities, government, and the medical community to unlock the secrets of Lyme and other tick-borne diseases. LDA and Time for Lyme, its Greenwich, Connecticut affiliate, collaborated to raise funds to open in 2007 the Lyme & Tick-Borne Diseases Research Center at Columbia University in New York which will coordinate research projects from across the country. LDA is currently planning its 9th fully CME accredited medical conference for physicians on Lyme and other tick- borne diseases to be held in San Francisco in October 2008. Go to LymeDiseaseAssociation.org.




National Association Announces Eastern Connecticut Lyme Chapter

Press Contacts 
Local: Kimberlee Pappa – easternctlda@yahoo.com 
National: Pat Smith – Lymeliter@aol.com

PRESS RELEASE FOR IMMEDIATE RELEASE

National Association Announces Eastern Connecticut Lyme Chapter
Eastern counties high in disease, low in awareness, says new LDA chapter chair

NORWICH, CONNECTICUT, November 26, 2007–The national Lyme Disease Association (LDA) announces the formation of the Lyme Disease Association, Eastern Connecticut Chapter (LDAECC), bringing the current total of LDA-associated 
organizations nationwide to 31.


LDAECC’s formation was initiated by a family personally affected by Lyme disease who is deeply concerned by the prevalence of this disease. Commenting on the formation, the new Chapter Chair, Kimberlee Pappa, of Sprague, Connecticut said, “As a businesswoman, every day I speak to people who have been affected by Lyme, and they are all reaching out for help and information. I want to be a resource for them.”

Lyme is the most prevalent vector-borne disease in the country, and it has been joined by other emerging co-infections in the Northeast including babesiosis, anaplasmosis (formerly ehrlichiosis), and tick-borne Bartonella, transmitted by the bite of the same deer ticks that carry the Lyme disease bacteria. Tolland County’s number of Lyme disease cases has increased by 95% from 2004 to 2006, with a corresponding 75% increase in New London County’s numbers.

Children are a special concern because age groups 5-14 years are at highest risk of acquiring Lyme disease. The Pappa Family has 2 children suffering from Lyme disease and therefore is aware of the learning difficulties caused by it. Unfortunately, too many parents are unaware that Lyme disease can interfere with the learning process and that many students require special accommodations in the classroom as a result. Lyme disease can cause numerous ongoing physical problems involving the cardiac, neurologic, and musculo-skeletal systems, especially if treatment is delayed or incomplete, and it can manifest as psychiatric problems. Neurologic Lyme can even cause a drop in IQ for some students, which can usually be rectified with treatment.

Says LDA President Patricia V. Smith, “I am delighted to announce the creation of this chapter, LDA’s 8th chapter, in an area which contains some of the highest Lyme disease occurrences in the country. Awareness is certainly the key to prevention of this disease, and more research needs to be done to answer the tough questions, such as why some people do not get totally better.” To that end, LDA and Time for Lyme, its Greenwich, Connecticut affiliate, collaborated to raise funds to open in 2007 the Lyme & Tick-Borne Diseases Research Center at Columbia University in New York.

The LDAECC will work to further the LDA’s mission of education, prevention, research, and patient support. LDAECC is looking for volunteers and support. Contact Kimberlee at easternctlda@yahoo.com 

ABOUT THE LYME DISEASE ASSOCIATION (LDA): LDA is a 501(c) 3 non-profit organization which has developed and presented many programs for children in the schools, for scouts, and to help children obtain diagnosis and treatment if they lack medical insurance for Lyme disease through the LymeAid 4 Kids fund. You can find out more information about both Lyme disease, including the numbers, and impact upon students (visit the Lyme in the Schools Section), and information on the Lyme Disease Association by visiting its website at www.LymeDiseaseAssociation.org.




Nationally Recognized Speaker to Address Lyme Case Increases & Controversy


CONTACT PERSON: Jill Kuschel – President
PHONE: 651-213-1200 
e-mail: jjkuschel5@yahoo.com 

FOR IMMEDIATE RELEASE

Nationally Recognized Speaker to Address Lyme Case Increases & Controversy
Three Lyme Forums: for Minnesota Officials, Chiropractors, Community at Large

Forest Lake, MN November 1 − The Minnesota Lyme Action Support Group is proud to host nationally recognized speaker Pat Smith, President of the national Lyme Disease Association, Inc. (LDA). Ms. Smith sits on the Strategic Development Board for Columbia University’s Lyme & Tick-Bore Diseases Research Center, which opened in New York in 2007. She is also former chair of the NJ Governor’s Lyme Disease Advisory Council.

 

Minnesota, with 7,080 cases reported by the Centers for Disease Control & Prevention (CDC) since 1990, ranks in the top 14 states in the US in case numbers. CDC says that only 10% of cases that meet its surveillance criteria are reported, thus 70,800 cases probably occurred over that period in the State.

In three separate forums, Ms. Smith will present an overview of Lyme disease issues to elected officials from the Twin Cities and Forest Lake, to the community, and to chiropractors. Each will include a segment on the Lyme disease controversy.

A by-invitation only Mayor’s Forum will be held on Tuesday Nov. 13,th 9:00am-11:30am at the new Washington County Service Center. 19955 Forest Road N. Forest Lake, MN 55025. The topic is “An Overview of Lyme Disease: Its Impact Nationally, on States, and on You.” Officials should contact Rachel Berger Phone-715-749-3990 bergerrl@sbcglobal.net for registration. A press conference will follow the forum.

The free community forum will be presented on Tuesday, November 13th at 7pm at Hosanna Lutheran Church in Forest Lake. The topic that night will focus on “An Overview of Lyme Disease: What is it, its impact, and what should we do?” All are invited to attend. For further information contact Rachel Berger Phone-715-749-3990 bergerrl@sbcglobal.net

The forum for chiropractors will provide information about the national impact of Lyme, how it is spread, outline the problems with appropriate diagnosis and treatment and discuss the rise in reported cases. To sign up contact Rachel Berger Phone-715-749-3990 bergerrl@sbcglobal.net

ABOUT THE LDA: The LDA is a national non-profit corporation dedicated to raising funds for Lyme disease education, prevention, research and patient support. LDA has 31 associated organizations nationwide. See www.LymeDiseaseAssociation.org for information on LDA and on Lyme disease.

ABOUT MIINNESOTA LYME ACTION SUPPORT GROUP: The Mission of the Minnesota Lyme Action Support Group is to support and conduct educational and informational activities which serve to increase the public awareness of Lyme disease and other tick-borne illnesses.

Purpose: To offer support to those diagnosed with Lyme disease and to their families.
To promote the education of health care professionals regarding the diagnosis and treatment of Lyme disease and other tick-borne illnesses. To raise funds for education and research involving Lyme disease and tick-borne illnesses.




Controversies in Lyme Disease Treatment and Diagnosis to be Debated at Lyme Disease Association Conference in Newton, MA

***MEDIA ADVISORY***MEDIA ADVISORY***MEDIA ADVISORY***

Controversies in Lyme Disease Treatment and Diagnosis to be Debated at Lyme Disease Association Conference in Newton, MA

WHAT:
Researchers and physicians from throughout the world will gather on Friday, Oct. 26, 2007 to discuss the latest research about Lyme disease including diagnosis and treatment options. The meeting is a fully CME accredited annual medical conference, co-sponsored by the Lyme Disease Association and Columbia University College of Physicians and Surgeons.


At 5:15 PM, Dr. Raphael Stricker, president of the International Lyme and Associated Diseases Society (ILADS), will debate Dr. Paul Auwaerter of Johns Hopkins University School of Medicine about one of the most polarizing healthcare issues today: the two standards of care for Lyme disease, one advocating short-term treatment (IDSA guidelines) and the other advocating long-term treatment (ILADS guidelines.)

Media are invited to attend the debate at 5:15pm, as well as attend selected sessions throughout the day, which runs from 8AM to 6:30PM. Conference speakers and attendees are available for interviews.

WHY:
Earlier this month, exactly one year after the Infectious Diseases Society of America (IDSA) issued practice guidelines severely limiting doctors’ discretion in treating thousands of Lyme disease patients, the New England Journal of Medicine published a review arguing that there is no medical basis for Chronic Lyme disease. This debate continues between medical experts who support the IDSA guidelines and those doctors and patients who find the guidelines restrictive and counter to their successful experience with long-term antibiotic treatment. The Connecticut Attorney General’s office has even launched an on-going investigation into the development of the IDSA guidelines.

Lyme disease is the most common vector-borne (insect- or tick-borne) disease in the world today. The CDC has indicated that only 10 percent of the cases that meet its surveillance criteria are actually reported. No one keeps track of the numbers of cases that do not meet the surveillance criteria, cases that are physician-diagnosed clinically and the ones that most often develop into chronic disease. According to a Columbia University study funded by the National Institutes of Health, on average, patients with chronic Lyme disease have symptoms for more than one year before being correctly diagnosed.

Why is this especially critical in Massachusetts?
 Lyme disease is a serious public health issue, and Massachusetts ranks 5th nationally in CDC reported cases from 1990 through 2006 with 14,248 reported cases over that period.
 Since CDC indicates only 10 % of cases meeting its surveillance criteria are reported, about 142,480 cases probably occurred over that time period in Massachusetts.
 National figures over the same time period record 265,486 cases, thus more than 2.6 million cases which meet the surveillance criteria probably occurred.

WHERE:
Boston Marriott Newton, 2345 Commonwealth Avenue Newton, MA

WHO: 
Dr. Raphael Stricker, president, International Lyme and Associated Diseases (ILADS),
Pat Smith, president, Lyme Disease Association
Variety of patients

CONTACT: Vicky Jaffe, MS&L, (617) 937-2578, Vicky.jaffe@mslpr.com
More information at www.LymeDiseaseAssociation.org




NEJM Owes Patients Responsible Journalism Says Lyme Disease Association

NEJM Owes Patients Responsible Journalism Says Lyme Disease Association

Jackson, NJ, October 4, 2007-The New England Journal of Medicine (NEJM) published an article October 3 titled A Clinical Appraisal of "Chronic Lyme Disease." Eleven of its authors also served on the IDSA Lyme Disease Guidelines panel which is under investigation by the Connecticut Attorney General for the development of those Guidelines. Although the article mentions the investigation, nowhere does it disclose that these authors are under investigation. What sanctions does a journal of the stature of NEJM impose on authors who do not fully disclose?


In an unscholarly tone uncharacteristic of NEJM, the article concludes there is no chronic Lyme disease, and patients should not receive treatment. It tells doctors how to deliver that message to patients. It implicates Lyme disease groups established by "laypeople" as being part of the problem rather than part of the solution. Yet the article offers no solutions as to how to identify what these patients do have or what can be done while this issue is resolved. Worse, the article precludes the exercise of clinical judgment, which physicians usually rely on in areas of uncertainty. 

NEJM is used by physicians worldwide, but this article provides an appendix of author-selected science that physicians use to deny patients diagnosis and treatment and excludes the science in opposition. A balanced peer review process that included divergent viewpoints would have prevented this. No one benefits from foreclosing debate on open scientific issues. The problem in Lyme disease is not the patients or their treating physicians, but the suppression of divergent viewpoints. Without open public debate, critical questions never reach the research agendas. What responsibility does the NEJM have to provide "the whole truth" to its readers? 

NEJM has done a disservice to patients who are sick with Lyme disease and who now will be unable to get a diagnosis and treatment. Isn’t it time that responsible, rational people stop recycling the same rhetoric from the same people and instead choose to sit at the table together to find out why tens of thousands of people are left to suffer without diagnosis and without treatment?

Patricia V. Smith
President, Lyme Disease Association
888-366-6611
Lymeliter@aol.com

ABOUT the Lyme Disease Association (LDA)
LDA is a national non-profit patient organization dedicated to Lyme disease prevention, education, research, and patient support. LDA has chapters, affiliates, and support organizations across the country. See www.LymeDiseaseAssociation.org for details.




NJ Lyme Disease Case Numbers/Rates by County 2007

Click here for printable version

Confirmed Cases of Lyme Disease*
Frequency and Rate per 100,000 by County
2007
 
County
Frequency
Rate per 100,000¥
Atlantic
160
63.4
Bergen
157
17.8
Burlington
175
41.3
Camden
3
0.6
Cape May
38
37.1
Cumberland
164
112.0
Essex
91
11.5
Gloucester
7
2.7
Hudson
16
2.6
Hunterdon
256
209.9
Mercer
206
58.7
Middlesex
73
9.7
Monmouth
280
45.5
Morris
330
70.2
Ocean
205
40.1
Passaic
91
18.6
Salem
56
87.1
Somerset
149
50.1
Sussex
354
245.6
Union
56
10.7
Warren
267
260.6
Statewide
3,134
37.2
 

*Case confirmation is based on CDC and NJDHSS surveillance case definition and may differ from clinical diagnosis.

Cases are reported by municipality of residence and may not reflect actual exposure.

¥Rates are calculated using data from the 2000 U.S. Census.

Source: 2007 data from CDRSS.

Note: frequency counts are based on revised annual statistical data files and may not match numbers published in prior reports.

Caution: rates calculated using frequencies less than 20 may be unstable and unreliable.

 




2007 Conference DVD now available!

Lyme & Tick-Borne Diseases: Bridging the Medical Chasm, Boston 2007
Includes Lyme Treatment Debate
Conference DVD now available featuring a dozen speakers on areas impacting tick-borne diseases including the debate, Treatment Controversies: Lyme Disease with Ray Stricker, MD (President, International Lyme & Associated Diseases Society) Treatment the ILADS Perspective; and Paul Auwaerter, MD, (Associate Professor in the Department of Medicine, Johns Hopkins University) Treatment the IDSA Perspective

{simplecaddy code=DVD118 nextcid=1468}




First Lyme & Tick-Borne Dis. Research Ctr

Greenwich, CT, April 2007 – On April 30, The Lyme & Tick-borne Diseases Research Center (The Center) at Columbia University Medical Center will open its doors, making it the first in the country to focus on unraveling the complexities of these illnesses and offering hope to the thousands who struggle with them.

For Immediate Release

FIRST LYME & TICK-BORNE DISEASES RESEARCH CENTER TO OPEN AT COLUMBIA UNIVERSITY MEDICAL CENTER
Time for Lyme and the Lyme Disease Association Endow Center for Lyme Research and Cure 

Greenwich, CT, April 2007 – On April 30, The Lyme & Tick-borne Diseases Research Center (The Center) at Columbia University Medical Center will open its doors, making it the first in the country to focus on unraveling the complexities of these illnesses and offering hope to the thousands who struggle with them. Brian A. Fallon, MD, MPH, Associate Professor at the Columbia University Medical Center and the director of the Lyme Disease Research Program at the New York State Psychiatric Institute, will be its general director.


The Center will make one of the first goals the development of an accurate diagnostic test. The Center will use the latest in molecular genetics and proteomics to identify better diagnostic tests; it will conduct clinical research to evaluate new treatments and identify biomarkers that will better direct treatment; it will work to educate medical students and physicians on evaluating and treating Lyme & tick- borne diseases and it will support research projects internationally to help speed the scientific process of ultimately finding a cure for these diseases. 

Other areas of concentration will include the presence of comorbid infections in ticks and comorbid diseases in chronically ill patients; improved understanding of the pathophysiologic mechanism of disease, particularly as it relates to chronic Lyme disease; genetic studies to identify vulnerability factors within families; neuroimaging to better understand the brain mechanisms of disease; treatment trials to examine the efficacy of a wide range of therapeutic interventions, and further study of the neurologic and neuropsychiatric manifestations of Lyme disease.

“The official establishment of the Lyme & Tick-Borne Disease Research Center at Columbia University could not come at a better time,” notes Debbie Siciliano, co-president and founder of Time for Lyme, Inc., a research, education and advocacy group headquartered in Greenwich, CT. “At a time when Lyme and other tick-borne illnesses are becoming more prevalent, with 49 of the 50 states and the District of Columbia reporting cases, some treatment guidelines are marginalizing our efforts to understand, diagnose, treat and cure this disease,” Siciliano adds. Siciliano is referring to the repressive Infectious Diseases Society of America (IDSA) Guideline, which is creating the controversy that could effectively deny treatment to thousands of Lyme disease patients.

“By reaching our fund-raising goal of $3 million to open the Center, Time for Lyme (TFL) and the Lyme Disease Association (LDA)’s achievement now enables a major research thrust to take place”. “Those IDSA guideline threaten scientific progress and undermine the biggest medical issues of our time. The good news is that researchers at Columbia are stepping up to the plate and it is time take a leap forward for research,” adds Siciliano.

The Centers for Disease Control and Prevention estimates that about 23,000 cases of Lyme disease are diagnosed each year in the U.S. However, the CDC agrees that its own estimates are low, and Lyme experts believe the actual number of new cases each year exceed 230,000. Not only does controversy exist about the guidelines, but also the number of cases reported. Part of the problem is getting states to count cases in a uniform manner. No one really knows the true incidence of Lyme disease.

Dr. Fallon notes, “The current controversy underscores our crucial need for the Lyme & Tick-Borne Diseases Research Center at Columbia, and for the more definitive research on Lyme disease and other tick- borne illnesses we will conduct here – particularly in their chronic stages.” He and many other Lyme specialists believe chronic Lyme disease causes serious long-term effects – from cardiovascular and lung problems to neurological deficiencies and joint disorders – in 10-25% of all Lyme disease patients.

The Center at Columbia University will establish an integrative research program with state of the art and visionary research. Dr. Fallon explains, “Because the Center will focus on basic science and clinical research, we will have the ability to connect the diagnostic questions and treatment issues that have puzzled the medical community for decades with the scientists who have access to the powerful biotechnological tools that are transforming modern medicine. It’s the questions that emerge from working with individuals and subgroups of patients with Lyme disease that will play a key role in shaping the direction of laboratory studies,” he concludes.

Time for Lyme’s Debbie Siciliano notes that, while the generosity of donors enabled her organization to help endow the Lyme & Tick-Borne Diseases Research Center at Columbia, their job is far from over. “We are mindful that now the real work begins. With research programs targeting better diagnostics and, ultimately, a cure, we envision speedy progress to help eradicate Lyme disease and other tick-borne illnesses,” Siciliano explains.

About Time for Lyme
Time For Lyme, Inc., affiliate of Lyme Disease Association, is an organization dedicated to eliminating the devastating effects of Lyme disease and other tick-borne illness. Our mission is to prevent the spread of disease, develop definitive diagnostic tools and effective treatments, and to ultimately find a cure for tick-borne illness by supporting research, education, and the acquisition and dissemination of information. In addition, we will continue to act as advocates for Lyme disease sufferers and their families through support of legislative reform on the federal, state and local levels. For more information on our organization, please visit www.timeforlyme.org

About the Lyme Disease Association
The Lyme Disease Association (LDA) is a national nonprofit volunteer organization that devotes ninety- eight percent of its funds to programs-funding research, education, prevention and patient support. LDA-funded research has been published in peer review including JAMA, Neurology, Infection, and the Proceedings of the National Academy of Science. Recognizing that the ability to find solutions involves a multi-disciplinary effort, the LDA has partnered with businesses, patient groups, celebrities, government, and the medical community to unlock the secrets of Lyme and other tick-borne diseases. LDA is currently planning its 8th fully CME accredited medical conference for physicians on Lyme and other tick- borne diseases. To order free brochures, to learn about LDA’s LymeAid 4 Kids fund for families without insurance, or to find out more about Lyme disease, visit LymeDiseaseAssociation.org

About Dr. Brian A. Fallon
Brian A. Fallon, MD, MPH, Associate Professor at the Columbia University Medical Center, is the director of the Lyme Disease Research Program at the New York State Psychiatric Institute. A graduate of Harvard College, he obtained his M.D. degree from the Columbia University College of Physicians and Surgeons, as well as a master’s degree in public health epidemiology from Columbia University. Dr. Fallon is the recipient of over $10 million in federal and private foundation grants, with work spanning infectious disease, neuropsychiatry, and neurology. Dr. Fallon’s publications have focused on chronic Lyme disease, its diverse manifestations in children and adults, the impact of Lyme disease on the brain, and controlled treatment trials. He has presented his research internationally and before members of Congress, the CDC, NIH, and HHS. Recent research has focused on the search for better diagnostic tests and biomarkers of treatment response.




First Lyme Disease Research Center in Nation Launches at Columbia University Medical Center

Contact: Susan Craig, CUMC, (212) 305-3900; sc2756@columbia.edu
Dacia Morris, NYSPI, (212) 543-5421; Morrisd@pi.cpmc.columbia.edu

*MEDIA ADVISORY*

First Lyme Disease Research Center in Nation Launches at Columbia University Medical Center

Symposium to Cover Frequent Misdiagnosis & Controversial Treatment Guidelines, Rising U.S. Incidence, Imaging of Brains Affected by Lyme

Columbia University Medical Center (CUMC) celebrates the launch of the Lyme & Tick-borne Diseases Research Center, the first university center for the study of Lyme disease in the U.S. The center, with the instrumental and ongoing support of Time for Lyme, Inc. and Lyme Disease Association, Inc., will bring together a multi-disciplinary team of CUMC’s physician-scientists and the latest advances in medical technology to help unravel the complexities of Lyme and tick-borne diseases.


Symposium topics & speakers will include:

Lyme Disease in the United States Today: Charles Ben Beard, PhD, head of vector borne diseases, Centers for Disease Control and Prevention

Severity of Illness & Misdiagnosis: Mary McDonnell, two-time Academy Award nominee, star of “Battlestar Galactica,” “Independence Day” and “Dances With Wolves,.” spokesperson for Lyme Disease Association, Inc. 

Controversial Diagnostic & Treatment Guidelines: Brian Fallon, MD, MPH, director of Lyme and Tick-borne Disease Research Center at Columbia University Medical Center

Identification of Unknown Pathogens in Ticks: W. Ian Lipkin, MD, PhD, director of the Greene Infectious Disease Laboratory, Mailman School of Public Health, and Rafal Tokarz, PhD, post-doc investigating other human diseases caused by ticks

Neuroimaging of Chronic Lyme Disease: James Moeller, PhD, research scientist and functional neuroimaging expert.

WHEN: Monday, April 30, 2007, 2 p.m. to 5 p.m.
Press availability from 1:15 p.m. to 2 p.m. or by arrangement with press officers.

WHERE: Columbia University Medical Center/New York State Psychiatric Institute, 1051 Riverside Drive, Hellman Auditorium, 1st floor, subway: A/C/1 to 168th St.

WHY: 
• Lyme disease is the fastest growing vector borne, or organism-transmitted, disease in the United States.
• The burden of Lyme disease profoundly affects New York state and its immediate neighbors:
     1. New York state accounts for 24 percent of all cases of Lyme disease reported to the CDC annually, with the annual incidence rate over the last 3 years increasing by 15 percent.
     2. New York state with its neighboring states of N.J., Conn., and Pa. accounted for 64 percent of all cases of Lyme disease reported to the CDC last year.
     3. May to August are the peak months for contracting Lyme disease.
• Lyme disease when diagnosed and treated early is rarely a problem. When early 
diagnosis is missed, the manifestations can be diverse and the treatment more
complex, with some patients developing chronic symptoms with functional
impairment comparable to that caused by congestive heart failure.
• The treatment of patients with Lyme disease is currently mired in controversy due to conflicting and limited research, resulting in confusion for both patients and doctors.

The Lyme & Tick-borne Diseases Research Center will focus on clinical research aimed at developing novel therapies, basic science to unravel disease mechanisms and to identify better diagnostic tests, and education of both medical students and physicians on how to best evaluate and treat patients. This is the first such center in the United States and in its focus on the particular problems faced by patients with chronic persistent symptoms will lead the country in research to bring the light of science to many unanswered and controversial questions. 

• Two new research projects will be announced at the center opening, one a multi-institutional diagnostic research project involving Columbia University Medical Center, the National Institutes of Health, the University of Medicine & Dentistry of New Jersey, and the U.S. Department of Energy and the second involving the neuropathology of Lyme disease which includes a brain bank for autopsy specimens from patients with neurologic Lyme disease. 
• Results from a recently completed PET imaging study of chronic Lyme disease will be discussed by Columbia researchers. This work highlights ways in which functional brain imaging can be used to identify biomarkers with potentially valuable diagnostic and treatment implications for patients with chronic Lyme disease. 
• For more information on Lyme disease research at Columbia University Medical Center, visit: http://www.columbia-lyme.org/.

The Scientific Advisory Board for the Columbia Lyme and Tick-Borne Diseases Research Center brings together internationally-renowned scientists, including Dr. Claire Fraser (led the team that mapped the Borrelia Genome), Dr. Janis Weis (pathogenesis of Lyme arthritis), Dr. John Mann (translational neuroscience), Dr. Steven Schutzer (novel diagnostic tests), Dr. Ian Lipkin (foreign pathogen identification), Dr. Jorge Benach (Borrelia and Coinfections), Dr. Scott Hammer (infectious disease), Dr. Diego Cadavid (neuropathology and neurology), Dr. Ronald Van Heertum (neuroimaging), and Dr. Aaron Mitchell (molecular pathogenesis).