FOR IMMEDIATE RELEASE
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com
The Foundation encourages Congress to support the recommendations to fund efforts to increase scientific understanding of Lyme disease and other tick-borne infections
Portola Valley, Calif., November 14, 2018—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the United States, offered their appreciation to the U.S. Department of Health and Human Services (HHS) in response to The Tick-Borne Disease Working Group’s recommendation for increased Federal investment focused on Lyme disease awareness, education, diagnosis and treatment. This Federal Advisory Committee was enshrined in the 21st Century Cures Act, after years of work by Lyme disease advocates and their congressional representatives to review the Federal Government’s activities on tick-borne disease.
“This document represents an important first step by the U.S. federal government to recognize the need to better address tick-borne diseases,” said Wendy Adams, Research Grant Director, Bay Area Lyme Foundation and Member, Tick-Borne Disease Working Group. “These recommendations make the powerful point that significant increases in federal government funding for tick-borne disease research are required before we can truly diagnose and treat tick-borne infections.”
While there are nearly 10 times as many people diagnosed each year with Lyme than HIV in the U.S., Lyme disease receives approximately 1% of the public funding that is allocated for HIV/AIDS.
Lyme and other tick-borne disease can be disabling, and even life-threatening. The activities and recommendations included in the HHS report, which has just been submitted to the HHS Secretary and Congress, offers insights into gaps, opportunities and potential actions to be considered, related to Lyme and other tick-borne disease. The Working Group recommendations are numerous, and while they are all important, Bay Area Lyme Foundation (BAL) highlights below the recommendations that the Foundation believes can be most impactful.
- Research Improved Diagnostics (Recommendation 5.1) As the current “gold standard” diagnostic misses up to 60% of cases of early stage Lyme disease, there is a drastic need for improved assays to identify patients. Diagnosing Lyme and other tick-borne disease within the first few months of infection lead to the best outcome for patients. Also, without a sensitive diagnostic it is not possible to determine the effectiveness of novel treatment options. BAL believes strongly in the need for diagnostics, and it has funded numerous researchers who are working toward this goal at institutions including Harvard University, Massachusetts Institute of Technology (MIT) and University of California San Francisco.
- Better Target Clinical Research (Recommendation 6.4) While the recommendations highlight that additional clinical research needs to be conducted to target populations where gaps exist, BAL strongly believes that there is a great need for clinical research for all populations. There is no treatment that is 100% effective for any population, which is why therapeutics are the focus of more than ten research projects currently sponsored by BAL.
- Better Understand Impact of Lyme, particularly on the Brain (Recommendation 6.2) Much research is needed to better understand how the bacteria that cause this infection invades organs like the brain. It is not uncommon for patients with advanced disease to experience neurological symptoms and several studies, including one recently conducted at Tulane University, show that the bacteria in the brain can survive a standard course of antibiotics. Additionally, the recent launch of the Lyme Disease Tissue Collection Program as part of BAL’s Lyme Disease Biobank will provide researchers exploring the impact of tick-borne diseases on the body with the research materials they need.
- Expand Knowledge of Tick-borne Disease Transmission (Recommendation 6.3) There are documented cases of transmission of tick-borne diseases in blood transfusions, some of which have resulted in death. However, there is a wide gap in our understanding of how the Lyme bacteria is transmitted from mother to unborn child and if it is transmitted through blood and tissue donations. Understanding these mechanisms will help with prevention and diagnosis of disease.
- Educate More Clinicians (Recommendation 4.4) Patients are often misdiagnosed early in infection, when tests are in-sensitive and the rash is mischaracterized. This recommendation acknowledges that clinicians across the nation need more Lyme education and awareness. BAL has seen first-hand the need for greater sharing of knowledge about tick-borne diseases among the medical community and has sponsored CME programs for clinicians through partnerships with Massachusetts General Hospital.
“We applaud HHS for its significant actions to increase awareness, education and research related to Lyme disease,” remarked Linda Giampa, Executive Director, Bay Area Lyme Foundation. “For over six years, Bay Area Lyme Foundation has put forth tremendous efforts in these areas. We are grateful that HHS is taking seriously its charge to identify the numerous gaps in knowledge, and hope that these recommendations will lead to an increase of funding for tick-borne disease programs.”
About Lyme Disease
One of the most common infectious diseases in the country, Lyme disease is a potentially disabling infection caused by bacteria transmitted through the bite of an infected tick to people and pets. If caught early, most cases of Lyme disease can be effectively treated, but it is commonly misdiagnosed due to lack of awareness and unreliable diagnostic tests. There are about 329,000 new cases of Lyme disease each year, according to statistics released in 2015 by the CDC. As a result of the difficulty in diagnosing and treating Lyme disease, as many as one million Americans may be suffering from the impact of its debilitating long-term symptoms and complications, according to Bay Area Lyme Foundation estimates.
About Bay Area Lyme Foundation
Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is the leading public not-for-profit sponsor of innovative Lyme disease research in the US. A 501c3 non-profit organization based in Silicon Valley, Bay Area Lyme collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. A pivotal donation from The Laurel Foundation covers all overhead costs and allows for 100% of all donor contributions to Bay Area Lyme Foundation to go directly to research and prevention programs. For more information about Lyme disease or to get involved, visit www.bayarealyme.org or call us at 650-530-2439.
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One Comment on “Bay Area Lyme Foundation Endorses First Recommendations of New HHS Working Group Focused on Tick-Borne Diseases”
My 88-year-old mother has lost the battle from this disease. Physician went by “tests”….she is now in Hospice. We were both bitten multiple times 2006. Ticks were from Senoran Desert picked up by a family member’s dog, then to our dogs and then us. My treatment helps but I relapse. Looking for new treatment. I love this site. Provides hope. Thank you.