Posted 12/12/2017 4:33 AM (GMT 0)
OK, this is longish ... from Dr. Richard Horowits'd FB page: https://www.facebook.com/drrichardhorowitz/?hc_ref=ARSZqWrAPbuB7aferSl5OIjsjPyCKiQ9k1wskUb_3cITyshMNrRtHpi8Kh0Yrfpfhzk
The first meeting of the Federal Tick-borne Working Group took place today in Washington D.C. 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. Everyone from the group introduced themselves in the morning session, and I was impressed by the collaborative spirit of the group and their motivation to work together to help solve the challenges of Lyme and tick-borne diseases facing our country.
In the afternoon session, we were sworn in on stage by Don Wright, Acting Assistant Secretary for Health (OASH).
The members on stage for the photo are ... [my cut]
After the member introductions, Dr Wolitski gave an overview of the Working Group's Charter, followed by opening statements of what we hoped to accomplish today. Dr Aucott discussed how we need to reframe and refocus research, and Dr Honey encouraged us to "hit reset", as we think differently and freely share ideas to let transformative innovation happen.
Dazon Dixon Diallo, from Sister Love, Atlanta, GA then introduced the stakeholder presentations, which included Gregg Skall, from NatCapLyme, and Lorraine Johnson, from LymeDisease.org. They gave an overview of the issues facing patients. Greg 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. Lorraine Johnson discussed her My Lyme Data trial and how Lyme has been the legacy of an "orphaned disease" with only 3 clinical NIH trials done, over 15 years ago, with the largest trial containing only 129 patients. She advocated for innovative, patient centered responses, as "lived experience matters".
Lorraine's talk was followed by the "lived experience" of those suffering from Lyme, as individual patients then got up to speak. Their stories were heartbreaking. Two were from the DoD (Department of Defense), and both had similar experiences of being misdiagnosed for years, now unable to work. 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. Mothers who passed on Lyme to their children spoke, teary eyed, as they told the stories of their children's and families suffering. Jill Auerbach spoke on the necessity of controlling the tick population and making sure environmental solutions were thoroughly examined. Everyone in the working group and audience heard story after story of suffering and misdiagnosis, going from doctor to doctor looking for solutions. One young girl who was still sick, is still looking for answers. The Working Group certainly heard the urgent need to fix a broken system that is affecting children, adults and government employees. I am happy and honored to be part of the process to help our country find answers for this debilitating illness.
A closing quote by Winston Churchill was given by Gregg Skall, as an admonition to the group. "Courage is what it takes to stand up and speak, courage is what it takes to sit down and listen". We are all listening.