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http://chrissmith.house.gov/news/documentsingle.aspx?DocumentID=397880
Washington, Feb 4 | Jeff Sagnip ((202) 225-3765)
Continuing the fight to better assist patients and families impacted by Lyme disease, Congressman Chris Smith (R-NJ) announced the re-introduction of his bipartisan bill to establish a federal Tick-Borne Diseases Advisory Committee to better deliver results for those living with this debilitating illness.
"Lyme disease has been particularly devastating in New Jersey, where it is estimated that over 59,000 individuals have reported cases of Lyme over the past 15 years," Smith said. According to recent data, 95 percent of Lyme disease cases were reported from 14 states, and New Jersey was fourth highest.
"We need to redouble our efforts to help Lyme patients and their families in need of real solutions," said Smith, co-chair of the House Lyme Disease Caucus who has worked on issues impacting the Lyme community since the early 1990s. "Lyme rates are increasing all over the country, yet many are unaware of the seriousness of this disease and its potentially far-reaching effects. If not diagnosed and treated early, Lyme disease can lead to chronic illness and can affect every system in the body."
Smith and Rep. Collin Peterson (D-MN) are co-chairs of the House Lyme Disease Caucus—a bipartisan organization dedicated to educating Members of Congress and staff about Lyme and other tick-borne diseases, as well as advancing initiatives that are designed to help the estimated 363,000 Americans who suffer from Lyme disease each year.
"This bill would ensure that experts and patients have a seat at the table when decisions are made impacting Lyme disease research, diagnostics and treatments," Smith said.
Specifically, HR 665 tasks the Secretary of Health and Human Services with establishing a Tick-Borne Diseases Advisory Committee to enhance coordination and improve communication among federal agencies, medical professionals, and patients. The committee will operate in a transparent and open manner, advising the Secretary on Lyme disease policy and submitting annual reports on the Committee's activities.
The Lyme Disease Association (LDA) is headquartered in Smith's district in Jackson Township Ocean County N.J. Pat Smith, President of the LDA, commended the legislation.
"The LDA is pleased to have legislation introduced into the House which provides a tick-borne diseases advisory committee which is governed by FACA rules to ensure transparency and accountability and which provides at least 4 people at the table who represent the patient community: 2 from patient groups and 2 patients themselves or family members," said Pat Smith (no relation to Rep. Smith). "It also provides a seat for at least two health care providers, with relevant experience providing care for individuals with a broad range of acute and chronic tick-borne diseases."
In 2013, the CDC announced what Smith and the Lyme community already knew: only 10 percent of cases were being reported and the actual number of Lyme cases is well over 300,000—not 30,000 as CDC had previously insisted. This report has heightened the urgency for a coordinated, targeted effort to assist Lyme patients.
"Designing the process to better focus on improving outcomes after a Lyme diagnosis will not only ensure more effective policies, but will help to raise the quality of life for patients and assist the loved ones who care for them," Smith said.
Smith held the first ever congressional hearing on Lyme before the global health subcommittee he chairs, which focused on the disease in the U.S. and other nations.
"Obviously, those of us on the NYS Coalition on Lyme and Tick-borne Disease, disagree with this assessment. Just one simple example: the 2005 memo was no longer being honored by the OPMC, which was why almost every, if not, every single LLMD physician was being harassed. There would not have been a physician left in NYS to treat suffering patients.I am certain the Coalition will answer this.It is indeed a sad day,-Jill"
I wish I could attend this conference. Maybe you can, or know someone who would want to. Please spread this announcement around.
-Bob C.
The next meeting of the Massachusetts Lyme Association (MLA) will focus on suicide and Lyme disease:
EVENT: Suicide & Tick-borne illness
DATE: Saturday, February 7th: 1:00pm - 3:00pm. Future meetings will take place the first Saturday of every month at the same time and location.
LOCATION: Cambridge Spaulding Rehabilitation Center - 1575 Cambridge St., Cambridge, MA - Chapel Conference Room (Once inside the main doors, simply ask security for further directions to "Neuromuscular Infections Treatment & Rehab Interest Group,")
PARKING: Please note that since visitor parking is limited at the center, the alternative would be metered parking on Cambridge Street, so please have a few extra quarters in tow just in case.
PUBLIC TRANSPORTATION: The Rehabilitation Center is a 10 minute walk from the Harvard Square Red Line T station.
SPEAKERS:
Leo Shea III, Ph.D.:
Title: Lyme, Mood Disorders and Suicidality
Leo J. Shea III, Ph.D. is President of Neuropsychological Evaluation and Treatment Services, P.C. with offices in New York City and Quincy, Massachusetts. His practice focuses on traumatic brain injury, tick-borne diseases, forensic work and trauma and provides cognitive remediation and psychotherapy to individuals and families. He is a Senior Staff Psychologist and Clinical Associate Professor of Rehabilitation Medicine at Rusk Institute, a division of the New York University-Langone Medical Center, and is President of the International Lyme and Associated Diseases Educational Foundation (ILADEF).
Ron White, LICSW:
Title: "Helping Those at Risk for Suicide"
Ron White, LICSW is the Chief Program Officer of Samaritans, Inc. with operational responsibilities for Crisis Services (phone, chat and text), Grief Support Services, and Community Education. Mr. White is responsible for the more than 500 people who volunteer at Samaritans in a direct service capacity. Mr. White received his Bachelor of Social Welfare and Master of Social Work degrees from The Ohio State University and is currently a Licensed Independent Clinical Social Worker (LICSW) in Massachusetts. Mr. White has spent much of his professional career managing service centers both in the US and abroad. He joined Samaritans as Director of Programs and Services in 2007 and was promoted to his current position in 2009. He has also served as a member of the Massachusetts Gay, Lesbian Bisexual and Transgender Youth Commission under appointment from the Massachusetts Suicide Prevention Coalition. Mr. White is also co-chair of the Greater Boston Regional Coalition for Suicide Prevention and a member of the executive committee of the Massachusetts Coalition for Suicide Prevention. Mr. White currently serves on the executive committee of the National Association of Crisis Organization Directors (NASCOD) and on the Standards Training and Practices subcommittee for The National Suicide Prevention Lifeline.
Sheila Statlender, Ph.D., Moderator
Sheila Statlender, Ph.D. is a clinical psychologist in practice in Newton, Massachusetts for more than 25 years. She is a member of the American Psychological Association, the Massachusetts Psychological Association, the National Register of Health Providers in Psychology, and the International Lyme and Associated Diseases Society. Dr. Statlender specializes in the impact of chronic illness, including academic, vocational and personal adjustment issues, and provides individual and family counseling to many patients diagnosed with tick borne disease. Dr. Statlender has presented at a number of professional conferences and workshops, participated in the Boston Bar Association Task Force on Professional Challenges and Family Needs, and was a governor-appointed member of the Commission to Conduct an Investigation and Study of the Incidence and Impacts of Lyme Disease in the Commonwealth of Massachusetts. On a personal note, Dr. Statlender is the mother of three young adults who were diagnosed with Lyme disease as children.
Dr. Statlender also has offered some short articles as food for thought. The first three present the idea that depression is not just "in your head" but may be the result of physiological, inflammatory, and/or infectious agents. The articles are:
The remaining articles pertain directly to the impact of Lyme disease on depression, mood and neuropsychiatric symptoms, and are written by physicians who have treated many Lyme patients:
1. Brian Fallon, MD & Jennifer Nields, MD:
Lyme disease: A neuropsychiatric illness.
http://www.jersey.net/~joebur/introfal.htm
2. Dan Cameron, MD, current president of ILADS:
Lyme Disease and Suicide, An Ignored Problem
http://ireport.cnn.com/docs/DOC-1037462
3. Robert Bransfield, MD, from his website and other sources:
"Lyme, Depression, and Suicide"
http://www.mentalhealthandillness.com/Articles/LymeDepressionAndSuicide.htm
For more information about the MLA and upcoming programs, go to www.masslyme.org
There is no admission charge for this program.
