Topic: organizing the "troops" on the federal bills
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I'm sharing this letter I just sent out to all our California groups, suggesting you use it as a template to encourage activity in your own areas.
We have found in the past that giving people feedback on who has actually done something can make them realize that they have to participate. I encourage all group leaders to do something like this.
The LDA has done a great job putting info out there in an accessible way. Go to the website http://www.lymediseaseassociation.org/HR741/HR741.html#Actions and click on your own state to get the right info all ready for you to copy and paste. Send to ALL your contacts! Phyllis
Here's what I sent:
Dear people, let me first list our heroes!! These are people who have made calls or faxed or emailed, at least the ones we know about. Keep us informed as you call and we will put you on our Hero List!! (Thanks to Amanda for keeping this list.)
Then I will break it down into how many contacts each legislator has received. We are not done yet as you can see. With over 600 of us on these CA groups, I think we can do better. We HAVE to do better!!!
Remember, calls are the best (and aren't they easiest?), faxes next best, emails least best. These people made calls or faxed or emailed. HEROES!! You all get a gold star!
[here I pasted the list from the excel spreadsheet]
Now for the # of contacts each legislator got: Berger 1 Boxer (who is a cosponsor of the Senate bill, S1708) 1 Capps 21 Eshoo (who is a cosponsor of HR741) 22 Feinstein 1 Mary Bono Mack 21 McNerney 1 Radanovich 22 Solis 20 Waxman 21 (commented "Not many people have contacted us on this.")
I went to each legislator's website and jotted down some notes on each one's district. These legislators need to hear from people in their own districts - in short, YOU!! Is Lyme a problem, or not? Only you can help them see it. Twenty-odd people does not sound like an epidemic, does it? But 100 might get their attention! Or what would they do with 500? It's up to you.
Districts
George Radanovich 19th district - Fresno, Madera, Mariposa, Stanislaus, Turlock, Tuolomne, Sierra foothills Henry Waxman 30th district - Beverly Hills, Santa Monica, West Hollywood, Malibu Mary Bono Mack - 45th - Palm Springs Lois Capps 23rd - Santa Barbara, San Luis O, Monterey County, South/central coast Hilda Solis 32nd - LA County, East LA Anna Eshoo 14th - San Francisco, Santa Cruz, San Jose, San Mateo, Santa Clara
Even if you are not in their precise district, if you are close, you should call! At this point, we all should call all of them, but if you are in or near the district, you can make a stronger argument.
It is not too late. We are just starting.
What to say
Call the Washington offices and ask to speak with the Health Aide. Keep the phone blurb below (or write your own before you call) in front of you so you won't be tongue-tied.
*Note: already a co-sponsor, so just push for hearing
ACTION TO TAKE 1. Contact ALL the legislators above 2. Use sample phone blurbs & e-mails below
SAMPLES TO USE 1. FOR CONGRESS MEMBERS - (US HOUSE REPRESENTATIVES)
A. PHONE BLURB asking House Energy & Commerce Committee members for bill support:
My name is _______________________________ and I am calling as a resident of _______ (name of state you live in) to let you know that I want you to push for a hearing on HR 741 the Lyme and tick-borne disease bill. Very little money is spent for research on ticks and the many diseases they spread - a growing problem nationwide. Contact Congressman Frank Pallone, Chairman of the House Health Subcommittee and tell him you want him to schedule a hearing on HR 741 in the House Health Subcommittee today! If you are not a bill co-sponsor, please sign on to co-sponsor the bill also. Thanks. (leave your name, address, contact info)
B. LETTER asking House Energy & Commerce Committee for support: E-mail or fax your letter (personalized if possible) to the Washington, DC office. Your First & Last name Your Street Address City, State and Zip Code Your Phone Number
Month, day, year
The Honorable xxxx xxxx U.S. House of Representatives
Dear Representative xxxx:
I am writing to ask you to contact Congressman Frank Pallone, Chair of the Energy and Commerce Health Sub Committee, and urge him to schedule HR 741 (Smith/Stupak) for a hearing in the Energy and Commerce Health sub committee as soon as possible. I am also requesting, if you have not already done so, that you please sign on as co-sponsor to HR 741, ``The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007,'' which has a companion bill in the Senate (S 1708 Dodd/Schumer/Hagel). 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. Additionally, there are 10 times more cases of Lyme disease that meet the Centers for Disease Control and Prevention (CDC) criteria than are reported. In 2005, the final CDC reported numbers show 23,305 reported Lyme disease cases nationally; 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. Lyme disease, the most common vector-borne disease in the United States, is usually contracted by the bite from a bacteria-infected tick. In humans, infection with Lyme disease bacteria can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes, while long-term symptoms can lead to problems related to the central nervous system including the brain, heart, joints and other musculo-skeletal problems. Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.
The long-term cost of Lyme disease to families, school systems, the health care system, and the economy is astounding. According to a study published in 1993 in Contingencies, an actuarial trade publication, the cost to society for Lyme disease was about one billion dollars per year. The average treatment and diagnosis and lost wages related to Lyme disease was $61,688 per year per patient. Cases have more than doubled since then, so today's costs are probably $2 Billion or more annually.
Despite the prevalence, severity, and economic costs of this illness, patients with Lyme disease are having increased difficulty obtaining diagnosis and treatment. You are in a unique position to right this wrong. Your co-sponsorship, getting the bill on the Committee agenda and your vote for HR 741 (Smith/Stupak) are essential. It 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. It also sets up a federal task force to coordinate the federal efforts to combat Lyme disease.
I am sure you agree that Lyme disease patients and the public deserve more from our health care system.
Sincerely, SIGNATURE (If email, no signature is necessary, but type in your name) Your First & Last Name typed
2. FOR U.S. SENATORS
A. PHONE BLURB asking Senate Health, Education, Labor & Pension (HELP) Committee members for bill support:
My name is _______________________________ and I am calling as a resident of _______ (name of state you live in) to let you know that I want you to push for a hearing on S 1708 the Lyme and tick-borne disease bill. Very little money is spent for research on ticks and the many diseases they spread - a growing problem nationwide. Contact Senator Kennedy, Chairman of the HELP Committee, and tell him you want him to schedule a hearing on S 1708 in the Senate HELP Committee today! If you are not a bill co-sponsor, please sign on to co-sponsor the bill also. Thanks. (leave your name, address, contact info) B. LETTER asking Senate Health, Education, Labor & Pension (HELP) Committee for support: E-mail or fax your letter (personalized if possible) to the Washington, DC office. Your First & Last name Your Street Address City, State and Zip Code Your Phone Number
Month, day, year
The Honorable xxxx xxxx U.S. Senate Dear Senator xxxx:
I am writing to ask you to contact Senator Edward Kennedy, Chair of the HELP Committee, and urge him to schedule S 1708 (Dodd/Schumer/Hagel) for a hearing in the HELP committee as soon as possible. I am also requesting, if you have not already done so, that you please sign on as co-sponsor to S 1708, ``The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007,'' which has a companion bill in the House (HR 741 Smith/Stupak). 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. Additionally, there are 10 times more cases of Lyme disease that meet the Centers for Disease Control and Prevention (CDC) criteria than are reported. In 2005, the final CDC reported numbers show 23,305 reported Lyme disease cases nationally; 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. Lyme disease, the most common vector-borne disease in the United States , is usually contracted by the bite from a bacteria-infected tick. In humans, infection with Lyme disease bacteria can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes, while long-term symptoms can lead to problems related to the central nervous system including the brain, heart, joints and other musculo-skeletal problems. Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.
The long-term cost of Lyme disease to families, school systems, the health care system, and the economy is astounding. According to a study published in 1993 in Contingencies, an actuarial trade publication, the cost to society for Lyme disease was about one billion dollars per year. The average treatment and diagnosis and lost wages related to Lyme disease was $61,688 per year per patient. Cases have more than doubled since then, so today's costs are probably $2 Billion or more annually.
Despite the prevalence, severity, and economic costs of this illness, patients with Lyme disease are having increased difficulty obtaining diagnosis and treatment. You are in a unique position to right this wrong. Your co-sponsorship, getting the bill on the Committee agenda and your vote for S 1708 (Dodd/Schumer/Hagel) are essential. It 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. It also sets up a federal task force to coordinate the federal efforts to combat Lyme disease.
I am sure you agree that Lyme disease patients and the public deserve more from our health care system.
Sincerely, SIGNATURE (If email, no signature is necessary, but type in your name) Your First & Last Name typed
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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bettyg
Unregistered
posted
good job phyllis!! very thorough.
one suggestion my friend would be on your long paragraph letters; could you edit them here ...each in half, so other neuro lymies can read them and see HOW IMPORTANT THE STATISTICS ARE in your letters, etc. they get buried the way they are now.
way to go my friend; THANKS TO ALL CALIFORNIANS FOR THEIR HARD WORK, TIME, AND EXPENSES IN CALLING DC!
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