Follow-up email for yesterday's petition update:
--------- Original Message ----------
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov, brian.napack@wiley.com
Cc: (98 Undisclosed recipients)
Date: June 19, 2020 at 10:55 AM
Subject: Re: Epidemiology and cost of Lyme disease-related hospitalizations among patients with employer-sponsored health insurance— United States, 2005–2014
To the Tick-Borne Disease Working Group,
As a follow-up to yesterday’s email regarding the CDC’s Lyme disease‐related hospitalizations, Karen Vanderhoof-Forschner forwarded her 20year study on the costs to Lyme patients:
"Lyme Disease Cost to U.S. Patients $343 Billion from 1997 to 2017"
“37% of that cost occurs before diagnosis!!”
Lyme Mind Oct 19, 2019
From my personal Dropbox storage area:
https://www.dropbox.com/s/t703yrz52hn9anj/Lyme%20Disease%20Cost%20to%20U.S.%20Patients%20%24343%20Billion%20from%201997%20to%202017.jpg?dl=0
The following 7 min video includes stories from patients who have experienced the devastation of Lyme disease and the consequences of misdiagnosis leading to the debilitating late stage; a stage not recognized by the US Centers for Disease Control:
This is Lyme: Our Lyme stories
https://www.youtube.com/watch?feature=youtu.be&v=hWEWhWNI_Zo&fbclid=IwAR3GRgFo-v-xckbDMj61ZyBxAU7jJ-zCA2HQf7mWRgzDQX9UPL9GlAxC68s&app=desktop
Premiered Jun 5, 2020
The most disturbing testimony from that video:
-I have passed Lyme onto my husband James and my son Cameron now has congenital Lyme induced autism.
-It took ten years countless doctors, specialists, drugs, tests to get a proper diagnosis; and then treatment.
-We are financially devastated, the kids don’t have 529 accounts for college, we no longer own a home, there is no 401k.
The U.S. Centers for Disease Control and the academics named as defendants in the Lisa Torrey vs IDSA lawsuit are is 100% responsible for this travesty.
It is time to dismantle the CDC and hold those accountable for the deliberate mishandling of the coexistent pandemic of Lyme disease which has led to the unimaginable pain and suffering of countless individuals nationwide.
Carl Tuttle
Lyme Endemic Hudson, NH