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Finally, a use for all that free long distance on your phone --
The regulars dropping by all know I’m a fiend for using “cuts” to hide bulky posts. Today I ask for your indulgence – look behind the cut. This matters desperately to me – that more people are diagnosed with Lyme than with West Nile Virus EVERY YEAR – and Lyme is underreported – the CDC thinks 90% underreported.
If you have free long distance dialing on your phone, I ask you take a look at this – there’s a link for the bill, if you’d like. There’s a link for the PR sent out when the IDSA began to crush any support for this bill. Look TODAY.
(Why all this battling? If you go back through the tags for LBb, Lyme, Borrelia burgdorferi, etc. you will find all kinds of interesting links explaining what has been happening and why. One of my favorite links does a very nice job of explaining the Politics of Lyme:
http://www.myleftnutmeg.com/showDiary.do?diaryId=8493 “Attack of the chronic Lyme denialists”)
The contact info and then the Press Release follow. Thanks for taking a look.
UPDATE I have called the Energy & Commerce Committee (Phone 202-225-2927). I was actually transferred there by Congressman Dingell's aide ((P) 202-225-4071). The nice man answering the line is getting frantic because there is no actual agenda for the Committee. He says the bill will not vanish if it doesn't leave committee today.
May I suggest that people calling this line politely say something like: "Hi, I'd like to leave a comment about House Resolution 741/the Lyme bill. Could you please pass me on to the comment line?" It will make our calls more useful, and save the sanity of a person who has friends with Lyme and knows a lot about it, but is getting frustrated with "whichever Lyme group posted this..." I did not enlighten him, I just said I could contact two lists with the altered instructions.
Note that you cannot edit the Comment Line -- no editing features. What you say is what they will hear.
****************************************************************************************
URGENT! Make Congress Count You, Not Just IDSA! Call now!
WHO
Everyone, everywhere concerned about Lyme disease and the cover-up of its seriousness.
WHAT
* IDSA (Infectious Diseases Society of America) is dictating public policy and your health. Because of its interference, we cannot get a hearing on the Lyme bill.
* We have just heard that Energy & Commerce is making up a list of the only health bills to be heard NOW. If the Lyme bill does not make the list, it could be the end for this bill.
* Don't let this happen! Take control of Lyme disease out of the hands of IDSA and put it where it belongs, in your hands.
WHEN
Take action TODAY April 18th. (If you don't receive this in time, call anyway)
WHERE
The US House Energy and Commerce Committee & its Chair; the House Health Subcommittee Chair.
HOW
Call or fax ALL of these DC offices below:
* Congressman Dingell (MI) Chair Energy & Commerce (P) 202-225-4071/ (F) 202-226-0371
* Congressman Pallone (NJ) Chair House Health Subcommittee (P) 202-225-4671 /(F) 202-225-9665
* Energy & Commerce Committee Phone 202-225-2927 Committee Does not have a public fax/email
http://energycommerce.house.gov/membios/contact_form.shtml (will accept all zip codes)
WHAT
What can you say? Here’s a short sample below. Simple is better, they get hundreds of calls a day. You simply want them to understand that this growing issue has nationwide consequences.
(Polite but firm, please!)
We want HR 741 on the House Health Subcommittee agenda today! We are sick (or friends, family) and Lyme is spreading fast. We need help from you, now. We are not going to sit by and wait until our families and friends are all sick and dying from this devastating disease. (name, address, contact)
WHY
We have heard your efforts in calling Congress have been helping. They have generated a buzz in DC about the Lyme bill. Two weeks ago, LDA was invited (by Senator Dodd) to brief the Senate HELP Committee in DC. Over half the Senate HELP committee members showed up for the briefing, a good response. LDA also set up a briefing of all House staff members in cooperation with the House Lyme Disease Caucus (Smith/Holden/Stupak). The briefing itself went well, but hardly anyone from the specific House Energy & Commerce/Health Committee attended, although we have 103 co-sponsors on the bill in the House to date! The Committee is not listening to its colleagues who support the bill, or to its constituents, or to all those who are sick.
*********
The California Lyme Disease Association, the national Lyme Disease Association and Time for Lyme distributed the following press release on April 9, 2008, regarding the IDSA's recent attempt to kill federal legislation that would provide funding for Lyme research and give patients a voice in research needs. To help get this bill passed in the Senate and House, see instructions below the release.
*********
Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them
Already caught up in an anti-trust investigation, IDSA opposes research bill in order to maintain monopoly over Lyme diagnosis and treatment options
Washington, DC - Physicians specializing in treating chronic Lyme
disease and a national coalition of Lyme disease patients and their families today accused a medical research group of trying to exercise monopoly control over research on Lyme and tick-borne diseases.
"We're very disappointed," said Pat Smith, president of the national Lyme Disease Association (LDA), responding to a letter to Congress by the Infectious Diseases Society of America (IDSA) that seeks to deny patients a voice regarding the research needed to better understand the disease.
Lyme disease is a serious bacterial infection that develops from the bite of an infected tick. The disease is often misdiagnosed or goes untreated, causing many patients to suffer persistent health problems, including neurological disorders, crippling muscle and joint pain, disabling fatigue, psychological disorders, and even death. Even when Lyme disease is caught early and treated with a short course of antibiotics, the debilitating symptoms can persist and require additional longer-term treatment.
In March, IDSA wrote Congress attacking the Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007, introduced by Chris Smith (R-NJ) and Bart Stupak (D-MI) in the House, and Christopher Dodd (D-CT), Charles Schumer (D-NY) and Chuck Hagel (R-NE) in the Senate. The broadly supported bipartisan bill calls for acceleration of Lyme disease research and creates a new federal advisory committee made up of the full range of scientific viewpoints on Lyme, including a seat for patient advocacy groups.
The IDSA is currently under investigation by the Connecticut Attorney General for abuse of monopoly power and exclusionary conduct in formulating its Lyme disease guidelines, which were developed by a panel that held significant commercial interests in diagnostic tests, vaccines, and consulting arrangements. In its letter to Congress opposing the Lyme Bill, the IDSA failed to mention this ongoing investigation.
IDSA researchers have virtually controlled Lyme disease research for the past 30 years amidst ongoing controversy surrounding its guidelines, which deny patients the right to treatment options and undermine the ability of physicians to use their clinical discretion in treating patients. IDSA provides private health insurance
companies with the basis for denying long-term treatment for chronic Lyme disease.
The California Lyme Disease Association (CALDA), national Lyme Disease Association (LDA) and Time for Lyme (TFL) are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and
support services available for this newly emerging infection.
####################(end of press release)######################
If the IDSA gets its way, this bill will die without ever having a public hearing. If you don't want that to happen, here's what to do:
Right now, the bill is stalled in two Congressional subcommittees (one in the House, one in the Senate.) If the committee chairmen do not release the measures for a vote, the Lyme bills will die. We would then have to wait until next year to start the process all over again.
Click here for a list of states with members on the committees:
http://www.lymediseaseassociation.org/HR741/HR741.html#Actions
If your state is listed, click for contact information. Urge your representatives to contact their committee chairmen and request a hearing for the Lyme disease bill. (S 1708/HR 741) If it is a senator on your list, have him/her contact Senator Edward Kennedy (MA), chairman of the Senate Health, Education, Labor and Pension Committee. If it is a member of the House, have him/her contact Congressman Frank Pallone (NJ), chairman of the Energy and Commerce Health Subcommittee.
Phone your representatives in their DC offices during regular business
hours. It's quick and easy. The staff will tally all calls they receive.
If your state is not listed, see "other actions needed by individuals" at the above link.
Actual bill text:
http://thomas.loc.gov/home/thomas.html
Click Bill # and type S 1708 or HR 741.
If you have free long distance dialing on your phone, I ask you take a look at this – there’s a link for the bill, if you’d like. There’s a link for the PR sent out when the IDSA began to crush any support for this bill. Look TODAY.
(Why all this battling? If you go back through the tags for LBb, Lyme, Borrelia burgdorferi, etc. you will find all kinds of interesting links explaining what has been happening and why. One of my favorite links does a very nice job of explaining the Politics of Lyme:
http://www.myleftnutmeg.com/showDiary.do?diaryId=8493 “Attack of the chronic Lyme denialists”)
The contact info and then the Press Release follow. Thanks for taking a look.
UPDATE I have called the Energy & Commerce Committee (Phone 202-225-2927). I was actually transferred there by Congressman Dingell's aide ((P) 202-225-4071). The nice man answering the line is getting frantic because there is no actual agenda for the Committee. He says the bill will not vanish if it doesn't leave committee today.
May I suggest that people calling this line politely say something like: "Hi, I'd like to leave a comment about House Resolution 741/the Lyme bill. Could you please pass me on to the comment line?" It will make our calls more useful, and save the sanity of a person who has friends with Lyme and knows a lot about it, but is getting frustrated with "whichever Lyme group posted this..." I did not enlighten him, I just said I could contact two lists with the altered instructions.
Note that you cannot edit the Comment Line -- no editing features. What you say is what they will hear.
****************************************************************************************
URGENT! Make Congress Count You, Not Just IDSA! Call now!
WHO
Everyone, everywhere concerned about Lyme disease and the cover-up of its seriousness.
WHAT
* IDSA (Infectious Diseases Society of America) is dictating public policy and your health. Because of its interference, we cannot get a hearing on the Lyme bill.
* We have just heard that Energy & Commerce is making up a list of the only health bills to be heard NOW. If the Lyme bill does not make the list, it could be the end for this bill.
* Don't let this happen! Take control of Lyme disease out of the hands of IDSA and put it where it belongs, in your hands.
WHEN
Take action TODAY April 18th. (If you don't receive this in time, call anyway)
WHERE
The US House Energy and Commerce Committee & its Chair; the House Health Subcommittee Chair.
HOW
Call or fax ALL of these DC offices below:
* Congressman Dingell (MI) Chair Energy & Commerce (P) 202-225-4071/ (F) 202-226-0371
* Congressman Pallone (NJ) Chair House Health Subcommittee (P) 202-225-4671 /(F) 202-225-9665
* Energy & Commerce Committee Phone 202-225-2927 Committee Does not have a public fax/email
http://energycommerce.house.gov/membios/contact_form.shtml (will accept all zip codes)
WHAT
What can you say? Here’s a short sample below. Simple is better, they get hundreds of calls a day. You simply want them to understand that this growing issue has nationwide consequences.
(Polite but firm, please!)
We want HR 741 on the House Health Subcommittee agenda today! We are sick (or friends, family) and Lyme is spreading fast. We need help from you, now. We are not going to sit by and wait until our families and friends are all sick and dying from this devastating disease. (name, address, contact)
WHY
We have heard your efforts in calling Congress have been helping. They have generated a buzz in DC about the Lyme bill. Two weeks ago, LDA was invited (by Senator Dodd) to brief the Senate HELP Committee in DC. Over half the Senate HELP committee members showed up for the briefing, a good response. LDA also set up a briefing of all House staff members in cooperation with the House Lyme Disease Caucus (Smith/Holden/Stupak). The briefing itself went well, but hardly anyone from the specific House Energy & Commerce/Health Committee attended, although we have 103 co-sponsors on the bill in the House to date! The Committee is not listening to its colleagues who support the bill, or to its constituents, or to all those who are sick.
*********
The California Lyme Disease Association, the national Lyme Disease Association and Time for Lyme distributed the following press release on April 9, 2008, regarding the IDSA's recent attempt to kill federal legislation that would provide funding for Lyme research and give patients a voice in research needs. To help get this bill passed in the Senate and House, see instructions below the release.
*********
Lyme Disease Physicians and Patients Expose Research Group's Ploy to Silence Them
Already caught up in an anti-trust investigation, IDSA opposes research bill in order to maintain monopoly over Lyme diagnosis and treatment options
Washington, DC - Physicians specializing in treating chronic Lyme
disease and a national coalition of Lyme disease patients and their families today accused a medical research group of trying to exercise monopoly control over research on Lyme and tick-borne diseases.
"We're very disappointed," said Pat Smith, president of the national Lyme Disease Association (LDA), responding to a letter to Congress by the Infectious Diseases Society of America (IDSA) that seeks to deny patients a voice regarding the research needed to better understand the disease.
Lyme disease is a serious bacterial infection that develops from the bite of an infected tick. The disease is often misdiagnosed or goes untreated, causing many patients to suffer persistent health problems, including neurological disorders, crippling muscle and joint pain, disabling fatigue, psychological disorders, and even death. Even when Lyme disease is caught early and treated with a short course of antibiotics, the debilitating symptoms can persist and require additional longer-term treatment.
In March, IDSA wrote Congress attacking the Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007, introduced by Chris Smith (R-NJ) and Bart Stupak (D-MI) in the House, and Christopher Dodd (D-CT), Charles Schumer (D-NY) and Chuck Hagel (R-NE) in the Senate. The broadly supported bipartisan bill calls for acceleration of Lyme disease research and creates a new federal advisory committee made up of the full range of scientific viewpoints on Lyme, including a seat for patient advocacy groups.
The IDSA is currently under investigation by the Connecticut Attorney General for abuse of monopoly power and exclusionary conduct in formulating its Lyme disease guidelines, which were developed by a panel that held significant commercial interests in diagnostic tests, vaccines, and consulting arrangements. In its letter to Congress opposing the Lyme Bill, the IDSA failed to mention this ongoing investigation.
IDSA researchers have virtually controlled Lyme disease research for the past 30 years amidst ongoing controversy surrounding its guidelines, which deny patients the right to treatment options and undermine the ability of physicians to use their clinical discretion in treating patients. IDSA provides private health insurance
companies with the basis for denying long-term treatment for chronic Lyme disease.
The California Lyme Disease Association (CALDA), national Lyme Disease Association (LDA) and Time for Lyme (TFL) are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and
support services available for this newly emerging infection.
####################(end of press release)######################
If the IDSA gets its way, this bill will die without ever having a public hearing. If you don't want that to happen, here's what to do:
Right now, the bill is stalled in two Congressional subcommittees (one in the House, one in the Senate.) If the committee chairmen do not release the measures for a vote, the Lyme bills will die. We would then have to wait until next year to start the process all over again.
Click here for a list of states with members on the committees:
http://www.lymediseaseassociation.org/HR741/HR741.html#Actions
If your state is listed, click for contact information. Urge your representatives to contact their committee chairmen and request a hearing for the Lyme disease bill. (S 1708/HR 741) If it is a senator on your list, have him/her contact Senator Edward Kennedy (MA), chairman of the Senate Health, Education, Labor and Pension Committee. If it is a member of the House, have him/her contact Congressman Frank Pallone (NJ), chairman of the Energy and Commerce Health Subcommittee.
Phone your representatives in their DC offices during regular business
hours. It's quick and easy. The staff will tally all calls they receive.
If your state is not listed, see "other actions needed by individuals" at the above link.
Actual bill text:
http://thomas.loc.gov/home/thomas.html
Click Bill # and type S 1708 or HR 741.