Medfield02052's Blog

Dear friends,

I attended a Senate briefing in Washington DC last week sponsored by the Tick-Borne Disease Alliance (TBDA) to address the national health crisis of Lyme and tick-borne diseases.  The briefing was aimed at advancing Senate Bill S.719, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act. Lyme disease is a major public health problem and testimonies from prominent physicians, advocates and chronic sufferers were compelling.  Senate staffers heard loud and clear that current diagnostics are unreliable, hundreds of thousands of patients are suffering, global warming is accelerating the worldwide epidemic, and more research funding is vitally needed.

Washington is starting to recognize the magnitude of human suffering and economic burden [$3B+ in US] created by Lyme and tick-borne diseases.  Staffers from Rep. Chris Gibson, (R-NY), Senator Kirstin Gillibrand (D- NY) and Senator Bob Casey’s (D- PA) offices told me fighting Lyme disease is a priority and they will work to improve education for awareness & prevention and funding for research to improve diagnostics & treatments. However, the Lyme disease community needs to unite toward these common goals.  Senator Gillibrand, along with Senators Richard Blumenthal (D-CT), Jack Reed (D-RI), and Sheldon Whitehouse (D-RI) are cosponsoring S.719, which would establish a Tick-Borne Disease Advisory Committee and invest additional federal funds into Lyme disease research and education.  Congressman Chris Smith (R-NJ), founder and co-chair of the Lyme Disease Caucus in Congress, has sponsored similar legislation in the house (HR610 and HR611).

Lyme disease only receives $25 million from NIH compared with $3 billion for HIV/AIDS and $112 million for Hepatitis C, despite Lyme incidence being magnitudes greater at 300,000+ new Lyme cases per year in US as compared to 50,000 new cases of HIV/AIDS and 17,000 new cases of Hep C (sources: NIH and CDC websites).

David Roth, Co-Chairman of TBDA, stated “National Institutes of Health (NIH) found that the impact of Lyme disease on physical health status was at least equal to the disability of patients with congestive heart failure, osteoarthritis and greater than those observed in type 2 diabetes”.  Dr. Patricia DeLaMora, Assistant Professor of Pediatrics, Pediatric Infectious Diseases, Weill Cornell Medical Center, said “Children are disproportionately affected by Lyme disease. We need accurate diagnostics and a well-educated medical community. The current diagnostics for Lyme disease are unreliable in the early stages when recognition and treatment are vital, and cannot accurately distinguish between old and new infections.” John Donnally, a 24 year old Lyme disease survivor and advocate who just completed a 3500 mile cross-country cycling public awareness TBDA campaign “Bite Back for a Cure”, conveyed “the epidemic is pernicious and rampant and a meaningful number of people do not get better”. Additional testimony from patient advocates, Karla and Victoria Lehtonen and Kelly Downing, illuminated their devastating stories of multiple systemic Lyme disease that baffled numerous medical experts due to inadequate diagnostics, resulting in ongoing symptoms including severe neurological impairment.  Karla quoted Dr. John Aucott’s research as indicating a significant percent of patients fail treatment and go onto chronic illness.  Dr. Richard Ostfeld, PhD, disease ecologist and Lyme disease specialist at Cary Institute, said “climate change is broadening the geographic range of ticks and their pathogens and the public health impact is getting worse”. When Heather Thompson (entrepreneur & Bravo Housewife of NYC) posed the question, “Do any of you want Lyme Disease?”, there was an uncomfortable silence.  A universal conclusion was the need for more research for tick control, diagnostics and therapeutics. 

Another important event in Washington last week was the FDA’s approval of Gilead’s Hepatitis C drug, Sovaldi, on Friday.  This novel oral drug is a direct-acting antiviral agent effective across a range of Hep C genotypes, adding an important weapon to the therapeutic armamentarium for anti-HCV therapy.  Why is this important or relevant for Lyme disease?  Because it shows that investment in research can produce significant innovation that will substantially improve patients’ lives!  This is an important shift in the treatment paradigm for Hep C patients since the need for side-effect inducing interferon shots will be reduced or eliminated.  It’s also a model for future Lyme disease therapeutics that could potentially, like Sovaldi, target disease specific mechanisms with improved efficacy and work in a range of genotypes.  Also, it’s important to recognize that innovations for illnesses such as HIV/AIDS, Hep C, Cancer and other illnesses depend upon a collaborative national network of clinical research centers for testing innovative diagnostics and therapeutics.  This is presently non-existent for Lyme disease, so there is much work ahead to improve outcomes for patients with Lyme disease as compared with these other illnesses.

Dr. John Aucott has a nationally recognized leading-edge Lyme disease clinical research program at the Lyme Disease Research Foundation that is generating scientific evidence to enhance the understanding of the pathophysiology of the illness and enable the progression of improved diagnostics and therapies. However, at the briefing, it was acknowledged that programs of this caliber are not sustainable indefinitely without government support.  For more information about the Lyme Disease Research Foundation, please visit www.LymeMD.org/.  Donations to fund this vital research are greatly appreciated and will make a meaningful difference in advancing the Lyme disease field.

Thank you for your interest in keeping abreast of Lyme disease issues. Wishing you good health and an enjoyable holiday season with family and friends.

All the best,

Nancy