December 13, 2016
Today, President Obama signed into law the 21st Century Cures Act, which contains tick-borne disease language. NatCapLyme has issued a statement concerning this new law, as follows:
While the bill was in the final process of passing the Congress, NatCapLyme’s Monte Skall, Gregg Skall and Susan Green were pleased to have worked alongside several Lyme disease advocacy groups to successfully remove last-minute language in the bill that was potentially harmful to those suffering from tick-borne diseases. The bill was subsequently amended to include a portion of the language many Lyme advocacy groups had sought.
The new law establishes a “Tick-Borne Disease Working Group,” comprised of representatives of appropriate Federal agencies and other non-Federal entities. The law calls for a diversity of scientific disciplines and views. The Working Group is to provide expertise and review all efforts within the Department of Health and Human Services (HHS) related to all tick-borne diseases, help ensure interagency coordination and minimize overlap, and examine research priorities.”
Unfortunately, there is no new money for Lyme and Tick-Borne Disease research or improved testing authorized in this law.
We encourage everyone to read the responsibilities of the working group, which can be found by clicking on this link: https://www.congress.gov/114/bills/hr34/BILLS-114hr34eah.pdf (Pages 115-120)
Responsibilities of this group include making recommendations to HHS on “ongoing tick-borne research, including research related to causes, prevention, treatment, surveillance, diagnosis, diagnostics, duration of illness and intervention for individuals with tick-borne diseases.”
Since this working group may also recommend duration of treatment, we must all remain vigilant. Those appointed to this group must adequately represent the community with medical professionals who treat chronic Lyme (and other tick diseases) patients, as well as advocates representing those with chronic tick-borne illnesses. The group must seek out diverse, current research, not rely solely on outdated research. We must work to make sure that the Working Group is truly diverse and is not weighted with the chronic Lyme deniers. The consequences of an unbalanced group could have dire implications to the community.
This is a call to action. We believe the entire Lyme community must come together to ensure the composition and implementation of this working group is fair and transparent. We must make sure this law goes down in history as one of progress for those afflicted with tick-borne diseases. With your help and activism we can achieve that goal and prevent it from resulting in a setback for the community.