The Joint Massachusetts Legislative Committee on Public Health has announced that there will be a Public Hearing on Lyme Disease beginning 10:00 am, Wednesday, October 12th in Hearing Room A-1 at the Massachusetts State House, Beacon Hill, Boston.
The program will begin with testimony from an expert panel consisting of:
* Brian Fallon, MD, MPH Columbia University College of Physicians and Surgeons; Director, Lyme Disease Research Program, NY State Psychiatric Institute; Principle Investigator for N.I.H. Chronic Lyme Retreatment Study
* Daniel Cameron, MD, MPH Principle Investigator,N.I.H. Lyme Double-Blind Randomized Placebo-Controlled Study; Board of Directors, ILADS; Private Practice, Mt. Kisco, New York
* Charles Ray Jones MD Private Practice: Pediatric and Adolescent Lyme Disease, New Haven Connecticut
* Patricia V. Smith President, (national) Lyme Disease Association, Inc.; Vice President, Political Affairs, ILADS (International Lyme & Associated Diseases Society)
The general public will then be invited to testify. Lyme patients from everywhere are welcome; however, Massachusetts residents will be given preference regarding testimony. Although legislators have asked the public to testify ``from the heart,'' written notes and/or cards will be permitted. Time will be limited to 5 minutes (IMPORTANT, one to two typed pages is about 5 speaking minutes; there is, however, no limit to the written testimony that you may choose to submit to the Public Health Committee). Bring your written testimony to the hearing, and please forward a copy of your statement by October 1 to:
A Large Turnout is as important as the quality and quantity of Personal Testimonies. Please bring your children, spouses and other family members. Drs. Jones, Fallon & Cameron and Pat Smith are all traveling a long distance and sacrificing much to help us make this into a successful event. This is THE opportunity that we have been waiting years for! The Massachusetts Legislature has never, EVER held hearings on Lyme disease at the State House in the past; let's not be faint of heart but, rather, let's all 'seize this moment!' with our cogent and coherent testimonies and our OVERWHELMING attendance! We have, at this event, the opportunity to begin changing conditions for Lyme patients here in Massachusetts and nationwide.
I hope to see you ALL at 10 AM sharp on Wednesday October 12th at the Massachusetts State House (Hearing Room A-1)! Note: For those coming in private cars, parking is underground about 1/4 mile away. Allow extra time)
Sincerely,
John Coughlan Director Massachusetts Lyme Disease Coalition Ph: (508) 563-7033
*NOTE: there is a possibility that a physician from the Steere/Klempner group may be added to the program.
Posts: 24 | From Southwick, MA | Registered: Sep 2005
| IP: Logged |
posted
I live in Mass and will do everything I can do get there.
Everyone who can't make it whether in MA or out of state should write and tell your story.
What should you emphasize? What have we been complaining about?
Lack of reliable testing Lack of doctors willing to treat Lyme Doctors ignorance when presented with Lyme - including diagnosing, testing and treating. Insurance company issues Prosecution of doctors willing to treat chronic lyme. Two standards of care - short term vs long term treatment
What should you ask for? Funding for: Better testing Physcian education Protection for doctors willing to treat chronic lyme Research supporting balanced views Public awareness/prevention
This is a huge opportunity for us to have our voices heard. I don't know specifically what their goal is, but we need to let them know what the issues are now!
This is where the message said to send your testimonies!
E-Mail: [email protected] FAX: (508) 563-7780 Snail-Mail: Massachusetts Lyme Disease Coalition P.O. Box 1916 Mashpee, MA 02649
Posts: 441 | From USA | Registered: Jul 2004
| IP: Logged |
posted
If you have been wanting to help yourself and other Lyme patients, this is a golden opportunity.
Please don't let the chance slip away.
Your participation is extremely important!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
Tired of being a victim? Get involved in changing things for the better.
Please participate in the hearings whatever way is possible for you.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
Please do whatever you can to get there on Oct. 12th.
Massachusetts is Allen Steere country. Steere is head of the Lyme department at Massachusetts General Hospital. I think Klempner is also in Mass. at Tufts.
Turning the state legislature in Mass to our point of view will do a lot to change the control that the Steere camp has had over our lives!
The ripple effect from this hearing could make a huge change in our access to good medical care.
New Yorkers will be going up the night before and staying over night in a hotel. The Mass group is reserving a block of hotel rooms at a reduced rate. Let me know if you are interested in getting info about that. Ellen
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
| IP: Logged |
posted
Great idea to get into Boston the night before!
Definitely best to avoid the rush hour traffic in Boston if at all possible from what I understand.
Thanks to all for their hard work planning for this major event.
Hope lots of people are signing up.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
lymeloco
Unregistered
posted
I have been trying to fax my testomy,but there's no answer. Does anyone know why?
IP: Logged |
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
| IP: Logged |
posted
Please be present at the hearings in Boston October 12th if at all possible as a way to represent to Mass. legislators your concerns regarding the treatment Lyme patients receive!
This event is a "biggie".
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
This hearing before the joint health committee of the Massachusetts state legislature is EXTREMELY important in our ongoing fight to protect our access to health care.
We need to recognize that we are the David to the Goliath of a government protected medical establishment that endangers our lives with the continuing myth that Lyme disease is easily diagnosed and easily treated.
Allen Steere, the best known and probably most powerful , promoter of that myth is THE Lyme disease "expert" at Massachusetts General Hospital (Harvard).
The Massachusetts hearing gives us a chance to limit the omnipotence of Steere and company in their own state - creating a postive ripple effect across the company.
The media in Massachusetts have indicated that they will show up to cover this hearing.
Since the state legislature is going to listen to us and since the media is showing up and since a number of our doctors will travel there to testify, it's really up to us patients to show that there is a huge public need for attention to Lyme disease.
We know from the activism in NYS that showing up and letting legislators see how many of us there are is enormously effective.
There are many events that Lyme disease patients have been asked to attend. This one is particularly important.
Email me at [email protected] if you want to join the group of New Yorkers who are going up for the hearing. Thanks, Ellen
--------------------
Posts: 819 | From New York, NY | Registered: Oct 2001
| IP: Logged |
sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
Up!
Posts: 4258 | From over there | Registered: Jul 2001
| IP: Logged |
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Wish I could hang out at the hotel and meet you all coming in a day early!!
I'll be there with mom. Ya'll have heard enough from me on the other threads.
There is still time. We need YOU. Please jump on the train and come from wherever.
Every single sick person there shows that this is the incredible public health issue that it truly is.
PLEASE COME. If you're on the fence, or waffling, or seeing how you feel that morning -- make the decision now.
It's the chance of our lives -- literally.
Can't wait to see you there! Posts: 1067 | From East Coast | Registered: Dec 2000
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic