Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Does anyone know where the Virginia Lyme Disease Task Force hearing (mentioned below) is being held this Friday in Richmond?
Supposedly, there will only be 2 "expert testimony hearings", and this is the last of the two, according to Nat Cap's press release. Does anyone know if ILADS will be represented again at this Task Force hearing?
Also- if anyone knows anything- like who is signed up to speak, or the program's agenda, please let us all know.
Any minutes or reports from the last Task Force hearing would be helpful too.
I checked websites, recent press releases of those involved with it and with patients- no one seems to know.
I also contacted the Governor's office - and the Secretary of Human Health office- but with either MLK day, or whatever is going on- I couldn't find anyone who knew.
Thanks!
"The next hearing will be held in Richmond on January 21 from 1-4PM. All hearings are free and open to the public."
National Capital Lyme & Tick-Borne Disease Association
Purcellville, VA- Wednesday, December 1, 2010.
Virginia Governor Bob McDonnell's newly appointed Lyme Disease Task Force held an expert testimony hearing Tuesday, November 30 at Patrick Henry College in Purcellville.
The first of two hearings, attended by nearly 200 patients, was designed to gather important information about the accuracy of diagnostic tools and efficacy of treatments. In addition, the Task Force seeks ways to increase awareness of this devastating disease to aid Virginia residents and medical practitioners.
A 12-member panel comprised of healthcare experts heard testimony from ten witnesses* ranging from fathers whose children were misdiagnosed as mentally ill to doctors discussing the financial impact of Lyme in Virginia.
Michael Farris, chairman of the Task Force, said ``For the first time we're creating a useful record of current and quantifiable information together with the divergent views of patients, doctors and researchers in a forum where they can hear and consider each others' perspectives.'' *See panel and witness composition at end of release
Monte Skall, Executive Director of the National Capital Lyme Disease Association, and a member of the panel said, ``Chronic Lyme patients often feel abandoned by medicine.
We're realizing our dream of bringing together experts that treat infectious disease, researchers and the real victims of chronic Lyme and its co-infections in the hope of finally making real progress for the treatment of this disease.''
Dr. Daniel Cameron, former president of the International Lyme and Associated Diseases Society, estimated a chronically ill Lyme patient's annual medical costs for treatment of Lyme and co-infections to be $16,200, bringing the total cost to Virginians to about $67 million annually.
Dr. Marty Schriefer, Chief of Diagnostic and Research section at the Centers for Disease Control, traveled from Colorado to share his knowledge with the panelists. ``In 2009 there were 232 cases of Lyme disease in Fairfax County and another 201 in Loudoun County,'' he said.
Mr. Farris expressed concern the CDC surveillance data actually under-report incidence and prevalence based upon narrow case definitions and the lack of effective reporting requirements.
Five fathers and one mother testified to the emotional and financial toll on families. Peter Demitry, a physician, former Navy test pilot and father of ill children received a standing ovation from the audience when he spoke emotionally of the contrast between the early health-filled years of his family and the nine years following his teenage son's tick bite.
He said ``Lyme moms'' and his own patients ``taught me more in two years than I'd learned practicing orthodox medicine in twenty.'' Eric Tibbetts, Retired Captain- US Navy, spoke of errors made in his son's care and urged more effective adoption of procedures for earlier Lyme and co-infection diagnoses.
The final speaker was Dr. Paul G. Auwaerter representing the Infectious Diseases Society of America. A Johns Hopkins University clinical researcher, he detailed the complexities of diagnosing and treating Lyme. ``We have more bacterial cells in our body than human cells,'' he said.
In addition to the two expert testimony hearings, a series of five geographically-organized ``listening forums'' will be conducted to gather the testimonies of patients and caregivers.
These forums will be held over the course of 2011 in Northern Virginia, Norfolk, Richmond, Roanoke and Harrisonburg. The output of the expert hearings and patient forums will be developed into recommendations for Governor McDonnell's consideration.
The next hearing will be held in Richmond on January 21 from 1-4PM. All hearings are free and open to the public.
For more information about Lyme disease and area support groups, seehttp://www.natcaplyme.org/
Panelists:
Mr. Matt Cobb- Virginia Dept of Health and Human Resources
Dr. Kerrie Hall- Epidemiologist, Virginia Department of Health
Ms. Diane Reynolds-Cane- Virginia Department of Health
Mr. Bob Duncan- Virginia Department of Game and Inland Fisheries
Mr. Doug Domenech - Secretary of Natural Resources, Virginia
Sam Shor, MD - Private practice physician, Reston, Virginia
A pplegate, PhD- School psychologist, Loudoun County
Rand Wachsstock- Doctor of Veterinary Medicine
Mrs. Monte Skall- Executive Director, National Capital Lyme & Tick Borne Disease Association
Mrs. Kathy Myer- Co-organizer of parents with children with Lyme disease
Dr. Lisa Strucko-Pharmacist, Leesburg
Mr. Arnie Owens - Department of [TITLE]
Witnesses:
Steve Thomas (Lay witness)
Danna Pristach (Lay witness)
Jim Mason (Lay witness)
Dr. Marty Schriefer, Center for Disease Control (Expert witness)
Dr. Daniel Cameron, Past President of International Lyme and Associated Diseases Society (Expert witness)
Dr. Betty Maloney, Lyme Disease Education Advocate (Expert witness)
posted
What happened to the planned hearing in Roanoke, VA? -- I was going to wait and go to that one. I thought there were going to be 4 hearings in total?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
2 hens short of a barnyard...
THANK YOU!!!! Much appreciated. I was able to post your information and get it out to several who were asking.
Good job 15 hens.
Bea,
From what I understand, the event Friday is an "expert testimony" hearing.. one of only two that will be done.. the last one.
There will also be ... according to what I've seen floating around... several other "meetings" where patients can have input. I can not find any times/locations on them yet other than a few town names.
If you check this page, it is all we've been able to dig up so far.
posted
Wow, this is great. I can't go but I just emailed the chairman and the coordinator to let them know how important this cause is to me, and asked my father to do the same.
-------------------- Currently infected with Lyme, Babesia, Ehrlichiosis, Rocky Mountain Spotted Fever, Mycoplasma, & Q-fever.
10 months into treatment, currently on Bicillin, Rocephin, Doxy, Biaxin, and Mepron. Posts: 87 | From USA | Registered: Sep 2010
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It seems, state by state, governments are starting to recognize the realities of Lyme and realize the IDSA is a compromised authourity on the matter.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Bea, there will be four hearings around the state for patients to attend. I'm not sure if the dates have been chosen yet. They seemed to be flying by the seat of their pants as far as planning the next hearing last time.
The chair of the Task Force has several family members with Lyme. This seems to be something that will have a positive end for patients, as far as I can tell at this point.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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