Vivvo CMS 4.0 http://www.lymedisease.org/news/ ©2007 Spoonlabs d.o.o. http://www.lymedisease.org/news/files.php?file= http://www.lymedisease.org/news/ http://www.lymedisease.org/news/lyme_action_alerts/350.html Political Action Sun, 14 Feb 2010 10:56:00 -0500 The rally in support of Dr. Charles Ray Jones that had been scheduled for Feb. 16 has been canceled due to predictions of heavy snow. http://www.lymedisease.org/news/lyme_action_alerts/348.html Political Action Fri, 12 Feb 2010 18:13:00 -0500 Latest word from rally organizers: "The weather forecast indicates we may have inclement weather. A final determination on whether to hold the rally will be made by Lyme Rights based on the forecast and will be posted on Monday afternoon. Please check www.LymeRights.org for updates before leaving for the rally and hearing. Your safety is our concern." http://www.lymedisease.org/news/lyme_action_alerts/347.html Political Action Fri, 12 Feb 2010 02:50:00 -0500 PRESS RELEASE: "At a time when all eyes are focused on the economy, no one seems to be watching as the Department of Public Health dwindles away taxpayers' dollars attempting to persecute a pediatrician for making children better." http://www.lymedisease.org/news/lyme_action_alerts/343.html Political Action Thu, 11 Feb 2010 02:08:00 -0500 The Connecticut Medical Examining Board will vote on the fate of Lyme-treating pediatrician Dr. Charles Ray Jones on February 16. Here is an update on the situation, along with the history of the action against him. http://www.lymedisease.org/news/lyme_action_alerts/338.html Political Action Thu, 04 Feb 2010 10:42:00 -0500 The first committee hearing for SF 1631, Minnesota's Lyme doctor protection bill, will be held Monday, February 8, at 12:30 in the State Capitol in St. Paul. Supporters of the bill are urged to show up and wear green to show solidarity. http://www.lymedisease.org/news/lyme_action_alerts/337.html Political Action Thu, 04 Feb 2010 06:52:00 -0500 Lyme patients' groups are asking Connecticut residents to contact AG Blumenthal, and residents of other states to contact their own AG, in connection with IDSA's latest actions. http://www.lymedisease.org/news/lyme_action_alerts/298.html Political Action Thu, 31 Dec 2009 05:20:00 -0500 The national Lyme Disease Association, Time for Lyme and CALDA, ask people across the country to call or fax the NJ legislature today. This is to prevent a dangerous setback for the Lyme community which is set to go forward on Monday, January 4, 2010. http://www.lymedisease.org/news/lyme_action_alerts/289.html Political Action Thu, 10 Dec 2009 04:06:00 -0500 In a letter printed in the December 2009 issue of "Minnesota Medicine," published by the Minnesota Medical Association, CALDA president Phyllis Mervine urges passages of proposed doctor protection legislation in that state. http://www.lymedisease.org/news/lyme_action_alerts/288.html Political Action Fri, 04 Dec 2009 04:37:00 -0500 Minnesota State Senator John Marty will discuss his proposed legislation to protect Lyme doctors from unwarranted intrusion by the state medical board at upcoming meeting of Minnesota Lyme Action Support Group in Forrest Lake. http://www.lymedisease.org/news/lyme_action_alerts/275.html Political Action Tue, 17 Nov 2009 09:43:00 -0500 It's time to re-focus attention on garnering support for the Lyme research bill. And you can help. http://www.lymedisease.org/news/lyme_action_alerts/247.html Political Action Mon, 19 Oct 2009 07:33:00 -0400 Proposed New Jersey legislation to re-categorize Lyme disease as being of "unknown origin" poses a threat to Lyme treatment throughout the country. The Lyme Disease Association and allied patient groups are asking people across the US--not just those from that state--to contact NJ sponsors of the bill. http://www.lymedisease.org/news/lyme_action_alerts/236.html Political Action Mon, 12 Oct 2009 07:05:00 -0400 The state of New Jersey is placing Lyme disease in a group of disorders with "unknown causes." Defining chronic Lyme disease as a collection of symptoms with no known cause may endanger the ability of Lyme patients to receive antibiotic treatment. LDA and allied patient groups are asking New Jersey residents to contact state senators, and nationwide Lyme groups to weigh in. http://www.lymedisease.org/news/lyme_action_alerts/171.html Political Action Tue, 28 Jul 2009 20:28:00 -0400 At their annual meeting a few years ago, the Infectious Diseases Society of America adopted a policy of opposing patient-sponsored legislation. They have been true to their word. They have opposed legislation in Pennsylvania, Massachusetts, and Connecticut and have lobbied for their point of view in Rhode Island and Maine. Continuing on the same path, last year they persuaded Health Subcommittee Chairman Frank Pallone that the federal bill somehow mandated long-term treatment. Pallone refused to allow the bill out on the floor and it died in his subcommittee. IDSA is now working on legislators to derail this year's federal bills. Their message may be flawed, but they are sticking to it. It falls to patient community to counter the misinformation. http://www.lymedisease.org/news/lyme_action_alerts/160.html Political Action Tue, 21 Jul 2009 05:23:00 -0400 The last call to action from Pat Smith at the Lyme Disease Association was highly successful. You were asked to contact members of the US House Appropriations Committee. Great results—the appropriations bill that came out of committee included good things for the Lyme community. Now, it’s time to start calling on the Senate side. http://www.lymedisease.org/news/lyme_action_alerts/159.html Political Action Tue, 21 Jul 2009 03:44:00 -0400 A press release from the office of Congressman Frank Wolf (R-VA) gives details about the recently approved House appropriations bill, which increases research funding for Lyme disease and calls for a national conference about Lyme. http://www.lymedisease.org/news/lyme_action_alerts/158.html Political Action Fri, 17 Jul 2009 13:50:00 -0400 There’s good news for the Lyme community in a House Appropriations bill that just emerged from committee. Although the economic downturn has forced many programs covered by the bill to be reduced or even cut out entirely, the measure increases the Lyme disease budget of the Centers for Disease Control. http://www.lymedisease.org/news/lyme_action_alerts/151.html Political Action Fri, 10 Jul 2009 03:37:00 -0400 If your state has a member of the US House of Representatives Appropriations Committee, that person needs to hear from you, about the creation of a Tick-borne Diseases Advisory Committee. http://www.lymedisease.org/news/lyme_action_alerts/138.html Political Action Sat, 20 Jun 2009 23:30:00 -0400 Connecticut Governor M. Jodi Rell has signed a bill protecting doctors who prescribe long-term antibiotics for Lyme disease. http://www.lymedisease.org/news/lyme_action_alerts/137.html Political Action Sun, 21 Jun 2009 05:54:00 -0400 Sixty-six Congressional representatives have so far signed on to co-sponsor HR 1179, the Lyme and Tick-borne Diseases Prevention, Education and Research Act of 2009. New York leads with 12 co-sponsors, followed by California with 10. http://www.lymedisease.org/news/lyme_action_alerts/127.html Political Action Fri, 29 May 2009 04:48:00 -0400 Newtown, CT, May 29, 2009 − Patient groups across Connecticut and the nation were jubilant as the Connecticut Senate passed the Lyme disease doctor protection bill today, 36-0, following its unanimous passage in the Connecticut House of Representatives on April 30, 2009. http://www.lymedisease.org/news/lyme_action_alerts/107.html Political Action Fri, 10 Apr 2009 10:44:00 -0400 Members of East Bay L.E.A.P.S. (Lyme Education And Patient Support) have drafted an excellent letter to the IDSA Lyme guidelines review panel. You can have your name added to it as a signer if you'd like. http://www.lymedisease.org/news/lyme_action_alerts/99.html Political Action Sat, 04 Apr 2009 05:01:00 -0400 You never pass legislation in a vacuum. The backdrop for the ongoing efforts to pass the Lyme bills included, in August 2005, Hurricane Katrina. In September, 150,000 people gathered in Washington DC to protest the Iraq war and the US death toll approached 2,000. Then in October, a grand jury indicted “Scooter” Libby, Vice President Dick Cheney's Chief of Staff, on felony charges. 2006 brought new challenges and distractions for Lyme advocates, too. With all these pressing issues to deal with, how could we expect legislators to fit Lyme disease legislation into their calendars? http://www.lymedisease.org/news/lyme_action_alerts/96.html Political Action Wed, 01 Apr 2009 02:36:00 -0400 It was 2005, the first session of the 109th Congress. There were two competing bills in the House, and no Senate bill. No one knew what the senators would do. All we could do was wait... and hope. Finally, we had our answer, but the landscape was shifting. It might be impossible to pass legislation, even if everyone united behind a single bill. http://www.lymedisease.org/news/lyme_action_alerts/92.html Political Action Tue, 31 Mar 2009 05:33:00 -0400 Some advocates had not been satisfied with the amended LIFT bill that had passed the Senate on consent in 2002. Since many people seemed unclear on the exact provisions of the different versions of the Lyme bills, LDA president Pat Smith wrote a letter clarifying differences between the original LIFT bill and the amended version that the senators had passed. http://www.lymedisease.org/news/lyme_action_alerts/91.html Political Action Mon, 30 Mar 2009 10:25:00 -0400 The Lyme and Tick-Borne Diseases Prevention, Education and Research Act of 2009, HR 1179, was introduced into the US House of Representatives by New Jersey Congressman Chris Smith on February 25. The bill authorizes creation of an advisory committee guaranteeing patients a seat at the table and a voice for the first time. The bill also authorizes funding for research and projects. Please contact your representatives and ask them to sign on as cosponsors. This article provides links to important information and help you might need to contact your legislators. http://www.lymedisease.org/news/lyme_action_alerts/90.html Political Action Sun, 29 Mar 2009 12:37:00 -0400 Sometimes Congress is busy with other matters, like wars and disasters. Early in 2003, Space Shuttle Columbia disintegrated during reentry, killing all 7 astronauts onboard and then in March the United States invaded Iraq. So perhaps it was a minor miracle that on July 31, 2003, Senator Santorum (PA) reintroduced a Lyme bill containing identical language to the 2002 amended LIFT, S. 1527. http://www.lymedisease.org/news/lyme_action_alerts/86.html Political Action Sat, 28 Mar 2009 12:46:00 -0400 The Connecticut insurance law passed in 1999 is an example of how well-intended legislation can hurt. In response to numerous complaints received by his office from Lyme disease patients being denied insurance coverage for Lyme-related expenses, Connecticut Attorney General Blumenthal held a hearing on February 24, 1999, co-sponsored by Commissioner George A. Reider, Jr. of the Connecticut Insurance Department http://www.lymedisease.org/news/lyme_action_alerts/85.html Political Action Fri, 27 Mar 2009 13:56:00 -0400 Rhode Island is the only state in the country requiring health insurance companies to cover longterm intravenous antibiotic treatment for Lyme-disease patients, no strings attached. The process stretched out over several years, with the creation of a Governor's Commission on Lyme Disease, public hearings, an agreement with insurance companies, legislation with a sunset provision, and then finally, removal of the sunset provision. It was an epic journey and patient advocates finally struck the gold. http://www.lymedisease.org/news/lyme_action_alerts/83.html Political Action Thu, 26 Mar 2009 08:00:00 -0400 Rhode Island was the first state in the nation to pass legislation protecting doctors who treat people with chronic Lyme disease from prosecution by state medical boards solely for that treatment. Rhode Island was also the first – and to date, only – state to reach an agreement with a large insurance provider. The agreement stipulated that “neither Blue Cross nor the independent reviewer, shall contest, reverse or deny coverage based upon a physician’s order of long term antibiotic therapy solely on the ground that such treatment may be characterized as unproven, experimental, or investigational in nature.” The following article was published in the Summer 2002 issue of the Lyme Times, and is available in full in the CALDA archives. http://www.lymedisease.org/news/lyme_action_alerts/80.html Political Action Wed, 25 Mar 2009 16:54:00 -0400 The Lyme drama of 2001 was not confined to Washington, DC. In May the New England Journal of Medicine expedited publication for the Klempner trial, and in June major urban newspapers trumpeted the headlines, “Antibiotics don’t cure chronic Lyme disease.” The Fallon study was in danger of being terminated because of low enrollment, and Joseph Burrascano was in the middle of his battle with the Office of Professional Medical Conduct. Then we had 9/11 and the anthrax attacks. http://www.lymedisease.org/news/lyme_action_alerts/78.html Political Action Tue, 24 Mar 2009 04:19:00 -0400 Legislation intended to combat problems associated with Lyme disease can help, or it can exacerbate the very problems that it is intended to address. LDA president Pat Smith and CALDA executive director Lorraine Johnson provide you with a framework to think about legislative issues and discuss some of the pitfalls you should avoid. Last of a three-part article that was published in the Spring 2005 issue of the Lyme Times. http://www.lymedisease.org/news/lyme_action_alerts/77.html Political Action Mon, 23 Mar 2009 08:35:00 -0400 In March 2001, as planned, Congressman Smith (NJ) introduced the third version of the Lyme Disease Initiative (HR1254 ). The language was almost identical to the language of the previous LDI. Then came the thunderbolt. Instead of introducing a companion version in the Senate, as anticipated, on May 25 Senator Dodd (CT) introduced a totally different bill, the Lyme and Infectious Disease Information and Fairness in Treatment (LIFT) Act, S. 969. The coalition of 90 patient activists and groups who had been working on LDI for the past three years were stunned. http://www.lymedisease.org/news/lyme_action_alerts/76.html Political Action Sun, 22 Mar 2009 08:22:00 -0400 Legislation intended to combat problems associated with Lyme disease can help, or it can exacerbate the very problems that it is intended to address. LDA president Pat Smith and CALDA executive director Lorraine Johnson provide you with a framework to think about legislative issues and discuss some of the pitfalls you should avoid. Second of a three-part article that was published in the Spring 2005 issue of the Lyme Times. http://www.lymedisease.org/news/lyme_action_alerts/75.html Political Action Sat, 21 Mar 2009 12:52:00 -0400 The Lyme Disease Initiative (LDI) of 1999 was 1,000 words longer than the 1998 version and packed with details from the community’s wish list. The Lyme wars had already begun. In July, 1999, a representative from the Office of Professional Medical Conduct, the doctor disciplinary arm of the New York Health Department, visited the office of Dr. Joseph Burrascano, Jr., asking questions about his practice. In 1999, Dr. Richard Horowitz of Poughkeepsie, another Lyme specialist, was dropped by Blue Cross/Blue Shield, leaving about 500 of his patients without means to continue treatment. [Lyme Times #26 ] In 1999, USA Today quoted American Lyme Disease Foundation executive director David Weld as saying that people like to have Lyme disease so they can talk about it at cocktail parties. http://www.lymedisease.org/news/lyme_action_alerts/73.html Political Action Fri, 20 Mar 2009 08:03:00 -0400 Legislation intended to combat problems associated with Lyme disease can help, or it can exacerbate the very problems that it is intended to address. LDA president Pat Smith and CALDA executive director Lorraine Johnson provide you with a framework to think about legislative issues and discuss some of the pitfalls you should avoid. First of a three-part article that was published in the Spring 2005 issue of the Lyme Times. http://www.lymedisease.org/news/lyme_action_alerts/71.html Political Action Thu, 19 Mar 2009 04:00:00 -0400 The first federal Lyme bill was introduced 11 years ago. The Lyme disease community still has not passed a federal Lyme bill. Why not? Learn about the history of Lyme legislation, the legislative process, and our own part in the drama. CALDA founder and president Phyllis Mervine shares experiences and insights from her decade of involvement with various reincarnations of the federal Lyme bills. http://www.lymedisease.org/news/lyme_action_alerts/69.html Political Action Wed, 18 Mar 2009 05:09:00 -0400 While you are struggling to get diagnosed, treated, reimbursed for your medications and trying to protect your doctor's right to clinically diagnose and treat, a medical specialty society is quietly working behind the scenes to eliminate the opportunity for research into your disease—research which could hold the key to your health. CALDA News, Events & Blogs