Our Role & Impact

Position Statements

NatCapLyme focuses our efforts on helping people with tick-borne diseases through awareness, education, support, advocacy, and research. After careful deliberation, we issue formal position or policy statements on issues that are of critical importance to our community and our association’s mission. We invite you to read through our past position statements:

Position-Statements

NatCapLyme Presents Comments to the Tick-Borne Disease Working Group in Washington, DC

My name is Gregg Skall of the firm Womble Bond Dickinson.  I serve as legal counsel to the National Capital Lyme Disease Association. What is most distressing is even after 40 years since being officially identified the medical community still has limited knowledge of how to effectively diagnosis and treat Lyme and tick-borne diseases.  In contrast, HIV emerged as a fatal infectious disease around the same time, yet today it is now considered treatable, offering most HIV patients a normal life span.

After decades of neglect by federal health authorities, the Kay Hagan Tick Act was signed into law last December.  It authorized a total of 150 million dollars to combat tick-and-vector-borne diseases. If appropriated, the important question here is: “who will get the money”  — since the authorization language was changed from “Tick-borne” to “Vector-borne.”  How much will be siphoned away from tick-borne diseases, like babesiosis and bartonella, — to less common but more publicized mosquitoes diseases, like Zika and West Nile?

It would be a betrayal to have this funding stolen away for other vector diseases that have already received a great deal of attention when the need here is so great! We believe it is imperative that government-funded research studies emphasize the persistent forms of Lyme and tick-borne diseases. The growing multitude of persistently ill patients warrants an un-biased, federally-funded research approach to finding effective diagnosis and treatment protocols for the persistent disease forms.

While NatCapLyme recognizes that awareness and prevention are important to the overall understanding of this epidemic, we feel strongly that the research funding MUST emphasize clinical trials of patients with the persistent form of Lyme borreliosis.  These patients are at the heart of the Lyme controversy!  

For advances to occur, trials must include Lyme patients whose disease expression and treatment responses are poorly understood.  Priority should be on new researchers with innovative ideas and methods, in an effort to settle the vicious medical controversy surrounding this disease. Research breakthroughs with other diseases demonstrate that true solutions are often found only when all parties are willing to consider the various views that each brings to the table.

Lyme and tick-borne diseases erode every facet of life, decimate marriages and livelihoods, cause children to lose their childhoods and for some, death. For many patients, life never returns to normal. It is shameful that so many people suffer for lack of an accurate diagnoses or effective treatment.  With an epidemic growing by the tens-of-thousands each year, this problem is not going away!  It is incumbent upon us all to find answers so that generations to come will not be afflicted by these diseases.

NatCapLyme has suspended in-person support group meetings resulting from the global Coronavirus pandemic for the time being.

We will resume meetings once it is safe to do so for our community.  

Stay safe!