CALDA News, Events & Blogs

POLITICAL ACTION: Jones rally canceled due to weather

14

Feb

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. Full story

POLITICAL ACTION: Dr. Jones Rally planned for Feb. 16; check back for inclement weather advisory

12

Feb

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." Full story

POLITICAL ACTION: Why does Connecticut keep spending money to harass Dr. Jones?

12

Feb

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." Full story

POLITICAL ACTION: Letter from Dr. Jones

11

Feb

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. Full story

POLITICAL ACTION: Committee hearing for MN Lyme bill Feb. 8 in St. Paul

04

Feb

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. Full story

POLITICAL ACTION: Make your voice heard with AGs across the country

04

Feb

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. Full story

POLITICAL ACTION: New Year's Eve Action Alert regarding proposed NJ legislation

31

Dec

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. Full story

POLITICAL ACTION: CALDA president urges support of Minnesota Lyme doctor protection bill

10

Dec

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. Full story

POLITICAL ACTION: Minnesota Lyme bill in the works; hear state senator on Dec. 8

04

Dec

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. Full story

POLITICAL ACTION: Have you contacted lawmakers about federal Lyme legislation?

17

Nov

It's time to re-focus attention on garnering support for the Lyme research bill. And you can help. Full story

POLITICAL ACTION: Proposed NJ legislation bodes ill for Lyme treatment throughout country; contact NJ sponsors to amend Lyme out of the bill

19

Oct

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. Full story

POLITICAL ACTION: Don't let New Jersey label Lyme "cause unknown"

12

Oct

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. Full story

POLITICAL ACTION: IDSA Opposes Federal Lyme Bills

28

Jul

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. Full story

POLITICAL ACTION: Time to the call Senate Appropriations Committee

21

Jul

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. Full story

POLITICAL ACTION: More details about Lyme funding bill

21

Jul

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. Full story

POLITICAL ACTION: House Appropriations bill adds money for Lyme disease

17

Jul

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. Full story

POLITICAL ACTION: Contact House Appropriations Committee

10

Jul

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. Full story

POLITICAL ACTION: Connecticut Governor signs Lyme doc protection bill

20

Jun

Connecticut Governor M. Jodi Rell has signed a bill protecting doctors who prescribe long-term antibiotics for Lyme disease. Full story

POLITICAL ACTION: List of co-sponsors of Lyme bill keeps growing

21

Jun

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. Full story

CT Lyme doctor protection bill passes unanimously

29

May

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. Full story

POLITICAL ACTION: Add your name on letter to IDSA

10

Apr

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. Full story

POLITICAL ACTION: History of Federal Lyme Legislation, Part 8

04

Apr

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? Full story

POLITICAL ACTION: History of Federal Lyme Legislation, Part 7

01

Apr

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. Full story

POLITICAL ACTION: History of Federal Lyme Legislation, Part 6

31

Mar

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. Full story

ACTION ALERT: FEDERAL BILL NEEDS YOUR HELP

30

Mar

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. Full story

POLITICAL ACTION: History of Federal Lyme Legislation, Part 5

29

Mar

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. Full story

POLITICAL ACTION: State Legislation in the Lymelight

28

Mar

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 Full story

POLITICAL ACTION: State Legislation in the Lymelight

27

Mar

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. Full story

POLITICAL ACTION: State Legislation in the Lymelight

26

Mar

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. Full story

POLITICAL ACTION: History of Federal Lyme Legislation, Part 4

25

Mar

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. Full story

POLITICAL ACTION: State Legislation in the Lymelight, Part 3

24

Mar

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. Full story

POLITICAL ACTION: History of Federal Lyme Legislation, Part 3

23

Mar

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. Full story

POLITICAL ACTION: State Legislation in the Lymelight, Part 2

22

Mar

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. Full story

POLITICAL ACTION: History of Federal Lyme Legislation, Part 2

21

Mar

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. Full story

POLITICAL ACTION: State Legislation in the Lymelight

20

Mar

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. Full story

POLITICAL ACTION: History of Federal Lyme Legislation, Part 1

19

Mar

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. Full story

ACTION ALERT: IDSA trying to kill Lyme bill--speak up now!

18

Mar

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. Full story

Political Action