Chronic Lyme Disease is reaching epidemic proportions and is one topic of a large bill called the 21st Century Cures Act. Patient advocates are pushing for updated federal guidelines on how to effectively treat chronic Lyme Disease which many mainstream doctors refuse to acknowledge.
The part of this bill regarding Lyme Disease has a history from a previous bill which failed to pass the senate two years ago. The idea is to bring about level headed, Lyme literate advocates in Washington to advocate for patients. Currently a working group exists dealing with the Lyme epidemic but there is no one from the Lyme community. One of the purposes of this bill was for Lyme community advocates to be represented in Washington.
LDA (Lyme Disease Association) fought to correct apparent last minute changes to this bill that apparently would have ruined this bill's aid to Lyme patients fixing verbage which had been changed by Congress. While they admit there were some compromises made in negotiation a narrow disaster may have been averted in the process.
Bills like this are highly political. It's lumped into a huge bill which addresses not only opioid addiction allocating $2 billion over the next two years to fight that addiction but also lumps in funding for marijuana addiction treatment.
The section known as the Tick-borne Disease Research Transparency And Accountability Act, introduced by outgoing Congressman Chris Gibson, would require the U.S. Department of Health and Human Services to consult with a working group of Lyme experts that includes doctors and patient advocates as well as government officials...
LDA may have helped preserve some of these aspects of the bill which had been changed in Congress by members who would rather ignore the existence of Lyme Disease.
There was some drama to keeping the tick-borne disease bill in the 21st Century Cures Act this year, said Holly Ahern, an advocate for funding new research and alternative treatments for Lyme and other tick-borne diseases. In the end, the bill remained mostly as authored by Rep. Gibson, which pleased patient advocates...
It was apparently a ton of patient advocates including the work of LDA that put these provisions BACK into the bill after they had been modified at the last minute.
Lyme disease diagnosis and treatment are controversial. A network of patient advocates nationwide claims that government health officials and an influential doctors’ group have been too slow to update guidelines on the illness.
Among the most contentious issues is whether Lyme disease can linger in the body, causing chronic problems. Some patient advocates ardently believe it does, and some scientists have sought to look into the question, but with little funding from public sources. Members of the nation’s most influential infectious disease medical group, however, are more resistant to that idea and do not acknowledge what is sometimes called “chronic Lyme.”
Anyone who knows someone with Lyme can verify that this is not a made up disease.
A bill that provides new funding for Marijuana addiction treatment, changes federal policy related to Lyme disease and other tick-borne illnesses and fosters an increase in the number of pediatric psychiatrists nationwide passed the House of Representatives on Wednesday.Rep. Joe Courtney, D-2nd District, praised the measure, called the 21st Century Cures Act, calling these provisions top priorities for eastern Connecticut.
Strange how close eastern Connecticut is to Plum Island and the history of Lab 257 where animal virus research and ticks were studied as vectors for diseases such as Rift Valley Fever. The joint project which originally was a joint project between USDA and the US Army ran for decades under USDA and is now managed by Homeland Security. Strange and coincidental that Plum Island is just a few miles across the Long Island Sound from eastern Connecticut.
Do you think there's any connection?
Image courtesy of: Macroscopic Solutions
Map Image courtesy of: uconnlibrariesmagic
