We have been closely following the federal Tick-Borne Disease Working Group across the pond, in Washington DC.
“The Tick-Borne Disease Working Group was established by Congress in 2016 as part of the 21st Century Cures Act to provide subject matter expertise and to review federal efforts related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities. The Working Group is required to submit a report every two years, starting in December 2018.” – Dr Richard Horowitz
“It was a great honor to be part of this group, which is tasked with developing or updating a summary of ongoing tick-borne research. This includes but is not limited to research related to causes, prevention, treatment, surveillance, diagnosis, diagnostics, duration of illness and interventions for individuals with tick-borne diseases.” – Dr Richard Horowitz
Patients have been delivering very moving encounters of their Lyme disease ordeals in a bid to push for change.
“Olivia Goodreau, a remarkable 13 year old from Denver, Colorado got up and told her story of having to see 51 doctors before ever getting diagnosed, and until seeing her 54th doctor, several key medical conditions still had been missed.” – Dr Richard Horowitz
“Susan Green has been a practicing attorney for years as well as a Lyme patient. Her first experience with the illness arose with a seizure which impaired her ability to speak. Her memory was also wiped out. She went from doctor to doctor and no one knew what was wrong. John’s Hopkins University gave her a test and her test was highly positive, although prior tests were negative. Her doctor leaned across the desk and said to her “I can’t treat you. I would be drummed out of my society.” – Dr Richard Horowitz
“Bob Savatino was here as a patient and advocate. He is director and founder of Lyme Society, INC. He felt that we had a unique opportunity here, and asked us to hit the reset button and create change. He lost his knees and shoulders and is a device in his chest due to this illness.” – Dr Richard Horowitz
Nicole Malachowski is an active duty colonel in the US airforce although in 18 days, she will be permanently retired due to neurological tick-borne disease.
“I thought I was tough as a combat proven fighter pilot but tick-borne illness destroyed me, brought me to my knees and ruthlessly broke me.” – Nicole Malachowski
Those who have worked in government healthcare organisations and other Lyme disease organisations also presented at the meeting.
“Jenna Luche -Thayer worked in the past for US governmental organizations and the WHO, working on behalf of human rights, transparency and accountability of governments. She has participated on federal boards, and looked for ways to increase representation and accountability. Jennifer had two main complaints. First, she complained of the use of federal funds, such as $32 million in NIH grants going to smear campaigns against doctors who do not treat according to IDSA guidelines.” – Dr Richard Horowitz
Greg Skall, Legal Counsel to NatCapLyme “discussed the need to change the CDC surveillance definition so that it better fits the clinical setting, encouraged CDC mass awareness campaigns, changing medical board politics so doctors were not afraid to treat, as well as ensuring safety of vaccines and the blood supply.” – Dr Richard Horowitz
“The Working Group certainly heard the urgent need to fix a broken system that is affecting children, adults and government employees.” – Dr. Richard Horowitz
We wish the Working Group every success and we hope that the UK can follow suit with a Lyme disease All Party Parliamentary Group, which should be up and running in the new year. Lyme Disease UK will be taking part in this working group.