I am writing to share information on the Congressional briefing that was held on December 4th, in the Hart Senate Office Building in Washington, DC. The briefing was recorded by the Tick Borne Disease Alliance, but I am not sure when the videos will be made available. Pasted below is the program which lists the speakers:
Lunch Program December 4, 2013 11:30am-1:00pm
Congressional Briefing with Leading Doctors, Researchers, Patients, and Advocates to address Lyme and Tick-Borne Diseases
A National Health Crisis
Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2013 (Introduced in Senate-IS) S.719
• Heather Thomson: Advocate; Founder of Yummie by Heather Thomson and star of Bravo’s The Real Housewives of New York City • TBDA Video • Dr. Patricia DeLaMora: Assistant Professor of Pediatrics, Pediatric Infectious Diseases, Weill Cornell Medical Center • John Aucott, MD: Principal investigator, SLICE Study of Chronic Lyme disease Park Medical Associates • Karla and Victoria Lehtonen: Chronic Lyme Patients and Advocates • Kelly Downing: Teacher, Chronic Lyme Patient • Dr. Richard Ostfeld: Disease Ecologist, Ph.D., 1985, University of California, Berkeley, Expertise: Lyme disease, West Nile virus
The Tick Borne Disease Alliance has added a new web link, which makes it SUPER EASY to send a personalized letter to multiple federal officials and express your support for the all of the federal tick-borne disease bills: http://tbdalliance.org/get-involved/advocacy/
You can post also post link to this web page on Facebook etc. and encourage your friends and family to send letters as well. We are all in this together! Please contact your legislatures and other key federal officials and encourage them to support these bills!
Blessings, KarlaL
Report on December 4th Congressional briefing organized by the Tick Borne Disease Alliance Most of the patient advocates met for dinner the night before where we all realised that it was the Berkshires that brought us all together, because almost everyone of us got sick there. For me, it was really heart warming to see my daughter Victoria enjoying the dinner. After traveling and and visits with family after Thanksgiving she was completely exhausted, and she really had to struggle to write her speech and make the long trip to Washington. The dinner restored her enthusiasm and helped to give her the energy she needed to give a her speech the next day.
The briefing was not open to the public and there were about 70 Senate aids and staff members in attendance, which was a very good showing and a most of the attendees stayed for the full two hours. Tables were set up and lunch was served during the briefing. Several of the attendees remarked that they thought that the presentations were very compeling and many people stopped to pick up the tick-test kits that were available.
David Roth, who is the Co-Chairman of the Board of the TBDA, spoke about his own experiences with Lyme disease. He tried to emphasis of the large numbers of people who are treated for lyme disease each year, at least 10% will go on to develop serious chronic symptoms; and while we still have many unanswered questions about Lyme disease there is a serious lack of NIH funding for tick-borne illnesses in relation to other serious diseases.
Heather Thompson, entreprener and star of the Real Housewives of New York City, spoke quite elequantly about her childhood playing in the woods and fields of the Hudson Valley, and how much she wanted her children to share to same experiences. She spoke about children she knew who had become ill. She nows fears for her childrens safety when ever they play out side in her home in the Berkshires.
Dr. Patrica De La Mora, who is a pediatric infectious diease specialist addressed controversies that she has had with her colleages regarding the prophilactic treatment of tick-bites. She related this issue to the abysmal state of the currently available serological tests in regards to lack of sensitivity early in the illness and that there is no way to tell weather or not a pateint is still infected after being treated. She also addressed the fact that she is encountering pediatricians who are refusing to even test the children for tick-borne illness, because they don’t want to be involved in treatment.
A video produced by the Tick Borne Disease Alliance was shown and John Donally spoke afterwards about his experiences as a child with Lyme disease and what he learned from patients during his cross country bike trip this fall.
Dr. John Aucott addressed the fact that his research shows that a significant percentage of patients are failing the standard treatment and we still don’t know why they are sick. He also addressed the fact that his studies are showing that women are much more vulnerable than men to continue to have symptoms and to test negative after early treatment. He made the point that while there is a lot that is still unknown about why patients are failing treatment, there are almost no funds at the current time for clinical studies.
Victoria was very poised and spoke elequaintly about her life as a teenager with chronic Lyme disease. She spoke about being homebound for years, her own personal difficulties with fluctuating symptoms, how hard it is to make any plans, and her difficulties with schoolwork. She talked about how much she would like to return to doing the things that she loved and her dreams for the future.
In an effort to put a human face on the statistics, I related our families experiences to Dr. Aucott’s findings. By using my family’s experiences as an example, I also spoke about the pressing need for a fast and sensitive direct-detection test for Lyme disease. I made note of the positive PCRs and other direct-detection tests that have proven chronic active infection after antibiotic treatemnt in several of my family members and the importance of tick-borne coinfections in our response to treatment. I also addressed the fact that even though we are in the midst of an epidemic, that most physicians are poorly trained to effectively diagnose and treat patients with tick-borne dieseases and there is a pressing for up-to-date and balanced physician training.
Kelly Downing, who was the patient who appeared with Dr. Richard Horowits on the Katie Courac show, relayed many frightening details of her struggles to find answers from dismissive physicians as well as get insurance coverage for treatment while her illness progressed. At one point, she had became completely paralysed from the neck down, and almost dyed from heart failure. During her hospitalisation for heart failure, she was told by her doctors that they were sending her home from the hospital as they could not find anything wrong with her and that she would probably improve on her own. They recommended that she should undergo psyschiatric evaluation. She did express profound appreciation for the LLMD and other health care practitioners that finally helped her. I certanily came away with a profound appreciation for her courage and fortitude.
Dr. Richard Ostfield spoke via Skype about the increasing range of tick-borne illnesses as well as the increasing number of serious diseases that the ticks are carrying, including Powassan virus and Borrelia miyamotoi. He also talked about the serious lack of funding for developing effective methods of tick-control.
Questions were asked about why physicians were so poorly trained. Dr. De La Mora partially addressed this question by saying that no one can force physicians to get ongoing training. Heather Thompson addressed this issue by stating that the physicians speaking to them were actually rouge physicans in that they were willing to treat, and that there were actually very few physians willing to treat Lyme disease.
At this point David Roth gave a brief summary of the controversies in diagnosis and treatment by countering the IDSA postion that Lyme disease is easy to diagnose and treat. He also mentioned the animal studies which demonstrate active infection and the difficulty with perfroming similar studies on humans.
One senior staffer made comments about IDSA opposition to previous versions of the bill in 2008, when a letter was sent to Senator Waxman stating that there was no reasonable evidence supporting active infection in symptomatic patients. This letter killed the previous bill. The staffer expressed his opinion that this letter did not have a strong scientific basis in 2008 or in the present but to expect similar tactics from the IDSA.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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