Then click on your own state to see which federal reps from your state you need to reach out to and their contact information.
What to say: Urge your federal reps to contact the Chairman of their respective committee and request a hearing for the Lyme disease bill.
If it is a Senator on your list: tell him/her to contact Senator Edward Kennedy (MA) who is the Chairman of the Senate Health, Education, Labor & Pension Committee [HELP]
If it is a Congressman: tell him/her to contact Congressman Frank Pallone (NJ) who is the Chairman of the Health Subcommittee, Energy & Commerce
How to make contact: By phone, fax and/or email
Why: The congressmen and senators in your state sit on the two Washington health committees where the Lyme disease bills are sitting, and if the committee chairs do not release the Lyme bills for a vote, the bills will die.
posted
Please take just a few minutes to make these calls this week.
We need this bill. THe IDSA is trying to kill this bill. CHeck out the thread on this group about the letter that the IDSA sent to the legislators.
Our best weapon is many, many , many phone calls to specific legislators to let them know there is real support for this bill.
The key legislators are Pallone in the House and Kennedy in the Senate. Each is chair of the committee that has the bill in the House and the Senate, and they are the only ones that can put the bill on the calendar for a hearing or a vote.
But call them only if they are from your state.
Otherwise, what we are doing is trying to get all the members of the committee that has the bill in each house to contact the chair and get him to put the bill on the calendar.
Go to www.LymeDiseaseAssociation.org and ciick on Legislation on top. Then click on Actions to Take. Then click on your state to find which legislators to call. Then follow up with a fax or email..
Making the calls will probably take about 5 minutes. And imagine what we will have done for the future of Lyme patients if we succeed in getting this bill passed. Ellen.
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Posts: 819 | From New York, NY | Registered: Oct 2001
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It is really, really simple to do this little bit of advocacy on behalf of us and all those who follow us in the future.
WE NEED TO BE ****ED, REALLY REALLY ****ED that the IDSA has petitioned Congress and the Senate to shoot down this bill!!!! UNBELEIVABLE!!
So, get off your tired and weary asses and make some phone calls and emails!!!! If we don't fight, no one is going to fight for us. Only WE can make a change!! Don't assume that everyone else is going to do it.
Have fun making change happen!!!
Anneke
Posts: 364 | From California | Registered: Sep 2005
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posted
This is so important. Let's try to get everyone we know to act on this. If the bill is not put on the committee calendar in the next few weeks, we will not be able to get it passed.
THis is money for research. Money for a test. Money for a cure.
And all we need to do is a few minutes of calling and emailing or faxing. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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posted
I called my senator, left a message, he's one of the co-sponsors.
Rather discouraging that the person who answered the phone was unfamiliar with it. Posts: 237 | From Rhode Island | Registered: Jan 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You really don't have to read this, but know I sent it out to quite a few folks. Senator John Kerry got a copy, Kennedy, the House Chairmen, and I am sending it to Clinton and Obama as well just to be a pain in the *** .
Here was the sample letter I sent (Of course I personalized each one a little)
The Honorable Edward Kennedy U.S. Senate
Dear Mr. Chairman:
I am writing to you again for the second time in regards to Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2007 as well as the ongoing conflicts with the Infectious Disease Society of America (IDSA). I wrote you by mail including a cover sheet on "The Complexity Of Lyme Disease" and Attorney General Blumenthal's investigation into the conflict of interest between IDSA treatment guidelines for Lyme disease and insurance companies on November 12, 2006. I'm grateful for your support then, and I'm asking for your support once again.
I ask you to schedule S 1708 (Dodd/Schumer/Hagel) for a hearing in the HELP committee immediately. ``The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007,'' which has House (HR 741 Smith/Stupak) version, is a critical piece of legislation that will benefit Massachusetts residents and the entire nation. Massachusetts is a highly endemic state where diseases carried by ticks are prolificating such as Lyme disease, Babesia, Bartonella, and Ehrlichia. With your support we can stop these controversial infectious diseases from spreading, and provide physicians with the resources to reconcile the controversy, and advance medical treatments and provide care for debilitated patients.
Please schedule S 1708 for a committee hearing immediately. Massachusetts, your home, my home, and the rest of our country needs someone of character and credibility to be accountable in doing what's right on this issue.
Lyme Disease: Lyme disease (LD) and other tick-born infections as mentioned earlier are very serious diseases, Senator Kennedy. (LD) is the primary infection of concern given it's the fastest growing vector borne illness in the United States.
(LD) is a bacterial infection caused by a spirochete (spiral-shaped bacteria) called Borrelia burgdorferi (Bb), which is primarily spread by ticks. Early signs of LD include flu-like symptoms and a possible bulls-eye rash. The International Lyme and Associated Disease society (ILADS) citing numerous studies and reports that fewer than 50% of patients with (LD) recall any rash. Although the erythema migrans (EM) or ``bull's-eye'' rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly.
The symptoms include muscle aches, joint pain, fatigue, fever, and headache. Most symptoms show up days or weeks and, occasionally, months following infection. Unfortunately the FDA approved blood tests currently available for Lyme are unreliable based on studies obtained from the Public Medical database.
Consequences: When LD goes undetected, undiagnosed, and untreated for months or years following infection, the bacteria can spread to the nervous system, the heart and other organs, tendons, and joints. This late-stage infection can result in a wide variety of physical, emotional, and mental or cognitive symptoms. This is a life consuming, and often life threatening illness that is not taken seriously, and eventually at the current rate, this storm is going to touch all of our lives.
Many of these patients are being told "It's all in your head" when none of their tests reveal answers. Children and teenagers are often told ``It's ADHD'', or ``depression'', ``growing pains'' or even ``hypochondria'' by their health care providers. As LD progresses forward and becomes more severe, many LD patients are misdiagnosed with various conditions, commonly including chronic fatigue syndrome, fibromyalgia, multiple sclerosis, depression, hypochondria, attention deficit disorder, anorexia, obsessive compulsive disorder, Alzheimer's disease, and Lou Gehrig's disease. Consider the other infections in conjunction with Lyme that are spread by ticks and perhaps other vectors and you can see the urgency of my plight.
Under Funded: Tick-borne diseases (TBD), especially Lyme, are an increasing worldwide problem, with concerns expressed about Lyme disease by a number of agencies, including the UN and the World Health Organization, which are looking at global environmental and health-related issues. Yet, funding is not forthcoming from government sources and has even decreased for Lyme despite rising case numbers. In fact, its funding is being vastly overshadowed by funding for other less prevalent diseases like West Nile Virus (WNV).
In 2005, the government expended about $32.6 million (down from $33.6 million in 2004) on Lyme disease and $80.8 million (up from $77.6 million in 2004) on WNV, despite the fact that there were 8 times more Lyme cases reported than WNV cases.
Massachusetts: The incidence rate of (LD) in Massachusetts in 2005 was 36.4 cases per 100,000, which is almost 4 1/2 times higher than the 2005 national incidence rate of 7.9 cases per 100,000.In 2005. The rate of increase since 2005 has continued to multiply substantially around the country. Additionally, there are countless cases of (LD) that meet the Centers for Disease Control and Prevention (CDC) criteria that are not being reported officially, as many states are not required to report them.
Finally, the CDC reported numbers show 23,305 reported (LD) cases nationally; which is believed by most specialists in Tick-borne disease to be 10 times that number, translating into 233,050 actual new cases that met CDC criteria. No one knows how many occurred that do not even fit CDC surveillance criteria given testing inaccuracy, which is likely astronomical given the rate of misdiagnosis.
The long-term cost of Lyme disease to families, school systems, the health care system, and the economy is astounding. Lyme disease is believed to cost more than 2 Billion dollars annually for the care of patients based on the available figures from public and private investigation agencies.
Conclusion: Despite the prevalence, severity, and economic costs of this illness, patients with Lyme disease are having increased difficulty obtaining diagnosis and treatment due to the monopoly which the IDSA holds over Lyme Disease treatment and diagnosis. The ISDA is being investigated specifically for this reason by Connecticut Attorney General Blumenthal, given the scientific literature does not support their one sided point of view. The ISDA physicians responsible for the this ongoing controversy often have conflicts of interests with other medical societies and physicians and insurance companies who depend on and utilize these guidelines to justify payment, and or providing adequate medical care to patients.
The results are simple: Treating the illness costs a lot of money, and insurance carriers do not want to pay for them. Physicians at the IDSA who are in a position to further this agenda and do so in their financial interests by ignoring scientific research suggesting long term medications and care are very helpful for patients with Lyme. You are in a unique position to right this wrong. Please put S 1708 (Dodd/Schumer/Hagel) on the calendar for a hearing today!
t will improve surveillance and prevention of Lyme disease, the development of accurate diagnostic tests, physician education, and it will fund additional research to determine long-term course of illness and the effectiveness of different treatments beyond the inadequate short term course of antibiotics perpetuated by the IDSA. It also sets up a federal task force to coordinate the federal efforts to combat Lyme disease.
With your help, we can protect and assist not only patients and citizens in Massachusetts, but also Americans across the country who are affected by medical monopolies and fraudulent acts. .
Sincerely, Michael Parent
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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