ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
It is very important that each and every one of us write Dr. Gerberding of the CDC to prove to her that Lyme is a major problem. Summarize your story. Tell how long it took for you to be diagnosed. What were reactions of docs who failed to diagnose you? Did a doctor use a negative test to rule Lyme out, even though you had classic symptoms? What is your health like now? Have you seen benefit from long-term antibiotic therapies?
Let's put pressure on them.
Please put a face on this disease. They are reviewing these recommendations now!
Chronic Lyme Patients Can't Get Treated CDC Director Told by National Patient Group
Lack of treating physicians, inadequate testing, and under diagnosis are leading to more chronic Lyme disease with surveillance problems contributing to lack of focus & funding
JACKSON, New Jersey (July 19, 2006) ─Lyme patients have fought for years to have their public voice heard by the Centers for Disease Control and Prevention, CDC. They finally got their opportunity when the Lyme Disease Association, a national non-profit consisting of patients and families of patients, met with the nation's leading public health officer, CDC Director, Dr. Julie Gerberding. She and other CDC officials listened as the Lyme Disease Association and four Congressmen addressed rising Lyme cases, chronic disease and causes, inability to get treatment, and lack of funding. The government only expends ~$33M each year on Lyme disease despite about 220,000 new cases of Lyme disease nationally that meet CDC surveillance criteria. That does not even include cases, usually chronic, which fall outside that non-diagnostic criteria.
Dr. Brian Fallon from Columbia University College of Physicians and Surgeons presented long-term Lyme disease treatment studies and their significance, including his recently completed NIH-funded chronic Lyme disease study showing improvement in patients. LDA president Pat Smith discussed the need for direct communication between patient groups and the CDC and between treating physicians and the CDC. Congressman Christopher Smith (no relation) offered to host a forum for those issues in New Jersey.
Ms. Smith presented the need for mandatory lab reporting in each state, uniform surveillance, and a dual CDC reporting system allowing for clinical cases to be accepted in a separate tier of reporting. She also recommended removing the ELISA as a screening test due to its insensitivity and allowing the Western Blot to be used alone for diagnosis, after re-adding two bands removed by CDC in the mid 90's. ``New technology also needs to be looked at in the testing arena,'' Smith added, referring to a recently published CDC article on chronic diseases and the use of cutting edge technology to diagnose. Researcher Dr. Steven Schutzer, New Jersey Medical School, who also attended, affirmed that need.
Ms. Smith asked the CDC to write every state health department informing them that the CDC criteria are not meant for diagnostic purposes, only for surveillance. Health departments can then notify physicians in their states. ``Too many people,'' she said, ``are being refused diagnosis, treatment, and insurance reimbursement based on surveillance criteria. This is leading to a huge increase in chronic disease, costing people their health, homes, jobs, education, and childhood.'' LDA presented a comprehensive notebook including statements from dozens of Lyme patients attesting to their diagnostic and treatment problems often related to CDC surveillance criteria.
Lorraine Johnson, JD, MBA, Executive Director of CALDA and Member of the LDA Professional Advisory Board, spoke about peer review and guideline issues. Her main thrust was explaining how unsettled science and two sets of treatment guidelines have led to two standards of care, and all physicians need to be aware that there is a standard which allows for long-term treatment of chronic patients. ``What we would like to see is for the CDC to treat Lyme disease the same way it treats prostate cancer--providing patients with information regarding treatment options until the science is more settled,'' she said.
The LDA-initiated meeting was hosted by Congressman Christopher Smith (R-NJ). Other US Representatives who personally attended were Congressman Tim Bishop (D-NY), Congresswoman Sue Kelly (R-NY) and Congressman Wayne Gilchrest (R-MD). Each spoke about rising Lyme disease cases in his/her state and personal experiences through family and friends with the disease. Staff from the offices of Senator Christopher Dodd (D-CT) and Senator Chuck Schumer (D-NY) also attended the meeting.
Dr. Gerberding agreed that tick-borne diseases are very complicated diseases that are poorly understood. There is a lack of awareness and early primary care is critical. Her concern that there is little government funding for tick-borne diseases dovetails with the purpose of the bills currently in Congress, HR 3427 (Smith-Kelly) and S 1479 (Dodd-Santorum) which will provide $100 million for Lyme disease research, prevention, physician education, and surveillance issues. 73 congressmen currently co-sponsor the House version and over 100 Lyme groups support it.
In closing, the LDA mentioned the unchecked spread of the deer tick populations nationwide over the past 20 years and how we need to learn from history and try to stop the spread of the more aggressive lone star tick now invading the Northeast.
The CDC is now reviewing the recommendations made by the Lyme Disease Association.
Here is the address:
Dr. Julie Gerberding CDC Director 1600 Clifton Road Mail Stop #D14 Atlanta, GA 30333
Thank you!
Posts: 2276 | From NC | Registered: Oct 2000
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If you would like, post your sample letter here for those who are brain-dead [myself included!!]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Connie~ Is this something that Pat Smith wants us to do?? I am more than happy to do this...I did send the LDA my story as was requested not too long ago. HOWEVER, I do not want to do something that would be irritating to the CDC. I am so grateful that a hearing took place! I hope to God something good comes out of it.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Oh, my. You do NOT want to get me started on anything related to the ELISA. Really. I'll send this, unless someone real smart tells me not to. (I pretty much trust that Connie is da bomb!) ______________________________________ Dr. Julie Gerberding CDC Director 1600 Clifton Road Mail Stop #D14 Atlanta, GA 30333
Dear Dr. Gerberding:
Since you are currently considering these matters, I wanted to write you about my experience with the diagnosis and treatment of lyme disease in both me and my daughter, who is 14 years old. We live in far northern California.
I suffered horrible headaches for a couple of years, along with brain fog, memory loss, extreme sound sensitivity, and pain. At least four doctors misdiagnosed me with various maladies until finally a brain MRI revealed numerous frontal lobe brain lesions consistent with lyme disease. However, my neurologist scoffed at the idea of lyme, informing me it was extremely `rare' here, diagnosing me instead with MS after a series of expensive tests. When pressed, he would only consent to an ELISA, which was negative. I begged for a western blot, but he refused, citing the two-step procedure requiring a positive ELISA first. This is the top neurologist in my area.
Because my symptoms were such classic lyme symptoms, I did not accept the MS diagnosis, and instead found a lyme literate doctor and obtained proper testing, where I was strongly CDC positive on western blot. My case was complicated by Babesia WA1, the West Coast strain of babesiosis. Had I remained in my neurologist's care, I would never have known I had lyme or babesia. I cannot imagine what would have happened to me.
My daughter became nearly crippled last year by ideopathic pain in both knees. I am absolutely certain that had I taken her to any of our local physicians, I would have heard the exact same song and dance, ``There's no lyme around here.'' ``Must do an ELISA first.'' Instead, my lyme literate physician did a western blot on her and found her also to be CDC positive due to her numerous tick bites. After a relatively short course of antibiotics, her knee swelling and pain resolved. Nine months later, however, the bacteria returned in the form of Bell's Palsy. She is once again being treated. On both these occasions, uninformed doctors are guaranteed to consistently make the wrong choices, being clueless about lyme and likely administering steroids which would worsen her condition.
My cousin near Sacramento suffers from what she believes is MS. She is so ill she's recently stopped work as a nurse. When asked, she assured me her doctor ``ruled out'' lyme. ``How?'' I asked. You guessed it - with an ELISA. I persuaded her to be tested by western blot at a good lab that reads all the bands such as IgeneX and she was found to be CDC positive as well. Unfortunately, her doctor couldn't even understand the test results as being positive. Neither did her doctor even consider or think about co-infections. If I did not have lyme, she would never have known, despite having a team of doctors.
How many people will continue to slip through the cracks undiagnosed or misdiagnosed because of the use and reliance upon the ELISA as a screening tool? Doctors who understand and treat lyme disease are currently being prosecuted on the east coast, while doctors like my neurologist - who would have me suffer and die with a bacterial infection of the brain - continue to blithely do business? How can this be right?
People all around the country look to the CDC as the final authority. You have ample evidence in scientific journals of the dismal failure rate of the ELISA. These missed people go on to become chronically ill, missing that window of opportunity when they might have gotten better. It happens every day in every town across America. Doctors will rarely diagnose clinically unless a patient walks into a clinic with a tick still attached, preferring instead to rely on the two-step procedure. Lyme patients cannot educate doctors all by themselves. We need your help.
Thank you for your consideration.
Sincerely,
Michelle Mahood
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Okay- doesn't take much to confuse me sometimes- are we supposed to email letters, or actually pen and paper one with a stamp? or both?
My PDuck by the way doesn't think he did anything wrong by only treating me for three weeks according to IDSA. He considers me a part of that tiny percentage of lyme patients who go on, through no fault of his, to develop chronic lyme.
So I will be glad to write a letter . I am fighting fatigue and a headache right now, but will be glad to do it when the brain synapses line up better.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Not doubting ConnieMac at all. I REPEAT... I'm NOT doubting ConieMac at all!!!
There is ALWAYS great info from her. But the post here is a bit confusing to me also in several respects... and I have not heard any news about this so I can't help anyone out with answers in this case.
May I suggest to wait till ConnieMac responds before sending out your letters? If you want to write it up in the event it is needed.. please do. And.. because it will be needed later in some capacity.. be SURE to save it!
Also... PLEASE don't be intimidated by Michelle's WONDERFUL .. oh my gosh it's good.. letter.
When I read it I was convinced I couldn't come close to something that good... and MY letter would sound like a 2nd graders... so I wanted to say forget it!
But.. the CDC.. in all their WISDOM.. should know that we are individuals.. and we will all say what is on our minds.. in our own way.
Now.. if you want to copy her "form" as a sample letter... and SHE APPROVES .. please do. I hope to use it to base my letter on... if she says OK!!!!
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
My objective here -
Show her just how many of us are out here. She has now spoken to a small group about this problem. Don't let what has happened get pushed under the rug. Let's show her how many of us are out there in the same situations as described by the group at the meeting.
The CDC is run with tax-payers money. We have every right to voice our opinions to them.
This is a fairly easy way to make some noise. I would suggest letters not emails. Letters accummulate. Emails never get looked at again.
Posts: 2276 | From NC | Registered: Oct 2000
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks ConnieMc
Thanks so much for posting the contact information and idea paragraphs to get us started. This is a fantastic idea. I agree,
We are paying them and have a right to be heard.
I want to be heard but in an intelligent way. I do want to sound intellient and not ramble in my usual way..
Please someone post a sample letter.
Not to copy word for word but to change around.
P.s. thanks again so much for posting the great contact info!!!!!
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Tincup:
Now.. if you want to copy her "form" as a sample letter... and SHE APPROVES .. please do. I hope to use it to base my letter on... if she says OK!!!!
What say you, Ms. Michelle?
ConnieMac?
If it suits Ms. Connie AND Ms. Tinnie, it suits me AOK! If my letter is helpful to get anyone started, have at it!
I agree that emails sometimes get tossed, where a letter bearing an original signature might get a little closer look-see.
I think a condensed version of "our story" is not a bad thing for them to hear.
A snippet or two of how if it HADN'T been for your LLMD or if it HADN'T been for a test better than a STOOPID ELISA...
Why, if I told em my entire story (my usual habit), they'd prolly fall unconscious, so I tried to resist and just hit the highlights.
But it's pretty rotten when you think how our LLMD's get harassed and prosecuted, while the very doctors who cheerfully misdiagnose a potentially fatal disease continue to do business, unconcerned.
Humanbeing, great to see your post and that's a splendid idea. I think some cc's are in order!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Here's my rough draft...I'm open to suggestions:
July 24, 2004
Dear Dr. Gerberding~
My name is ******. I live in Arizona. I have Lyme disease. I believe I contracted the disease in Arizona.
I used to be a very healthy, very athletic person. I regularly did 7 day backpacking trips in the Grand Canyon over rigourous terrain. I also participated several times in the Imogene Pass race, a 17 mile race over a 13,000 ft mountain pass.
A steroid shot to my knee activated latent lyme in my body. I got very ill. Seventeen doctors could not diagnose me, including the doctors at Mayo Clinic in Arizona. Only one doctor thought to test me for Lyme disease. When that test came back negative, I was told I did not have Lyme.
Through the internet, (and God's grace) I came across the possibility of Lyme disease. I also came across the Columbia University Medical Center's website for Lyme disease.
I was evaluated by Dr. Fallon in March of 2005 (17 months after becoming ill). He thought Lyme disease was the cause of my illness and suggested IV antibiotics due to the severity of the disease.
It took 4 1/2 MONTHS of IV and oral antibiotics for me to feel like I was in the land of the living again. I am still in treatment.
My insurance company, just this week, FINALLY reimbursed me for my entire Columbia bill. It took 16 months of letter writing, culminating in a complaint to my state insurance commission to be reimbursed for what I spent getting diagnosed properly. I also have had to argue with my insurance company over reimbursement for treatment. My medical expenses for 2005 were $65,000. Since I was too disabled to work, I would have been destitute if my husband had not been supporting me.
Lyme disease IS in Arizona. I am not the only person who has it. And I am certainly not the only person who has had difficulty getting diagnosed, or difficulty getting reimbursed from my insurance company.
This needs to change. You are in a position to educate the doctors about this horrid disease. It has stolen my life these last 3 years. I hope you will listen to the information that Dr. Fallon and Pat Smith presented to you. I hope you will make the necessary changes to help those of us who are suffering from this disease.
Sincerely,
[ 23. July 2006, 09:12 PM: Message edited by: timaca ]
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
It is my belief that the letters should be directed to the CDC address listed in the first post.
When I contacted Dr. Gerberding's office, they would not give me an email address to correspond with, only the mailing address listed above.
In Rep. Chris Smith's web site it is posted that "this bill should fast-track through the congress". However, I have read here in several other posts that the bill is stalled for some reason. I don't know for sure if this is the case or not.
There is a Lyme support group mtg. in Central/North Jersey Monday night and one of their topics is this bill and writing to our representatives. I will email the head of this group (she is wonderful) and ask her what they have been told. I was originally contacted by them to submit my letter to Pat Snith to take with her to the CDC meeting.
I'll let you know soon as I hear from them.
Posts: 263 | From Georgia | Registered: Feb 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Yeah, Timaca!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by 5dana8: How much personal info should we give. I am afraid she/they will pooh pooh because I dont fit their picture perfect CDC positive impossible definitions.
Thanks Dana!
I gave my full name and address.
I am prepared to stand up and be counted.
You shouldn't worry about fitting into any CDC positive criteria. That's a buncha hooey and part of what this is all about.
"Between 20-30% of patients with confirmed Lyme disease are seronegative." [Aguero-Rosenfeld 1996; Donta 1997].
The number might even be low.
Lyme disease doesn't fit into CDC criteria.
Write on!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Your letters are wonderful. Not too long, but long enough and detailed enough to tell your story. I think personal stories are very important in getting to the soul of an individual. Everyone has a conscience, what they do with it is what is important. Hopefully the CDC director will at least listen.
Bea, I read the thread earlier and was a little confused by it. I wasn't sure if the names listed in the first post were people we should be addressing our concerns to. Are we sure this is where the bill is?? Maybe today I will call Rep. Chris Smith's office and ask them. Why is the bill in the energy and commerce committee??
As far as on online petition...great idea from LML2260. Anything helps. We need to "attack" from all angles. Letters, petitions, newpaper editorials, marches, etc.
LML2260, have you looked into this further. I say go ahead and set it up. If people are not in favor of it, they do not have to sign it. Thank you for offering your knowlege about this procedure.
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
Has anyone contacted Pat Smith to see how she feels about a writing campaign to the CDC? If not, I think someone should contact her, presumably Connie, since she initiated this thread.
Posts: 8430 | From Not available | Registered: Oct 2000
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I would /REALLY/ encourage folks to send their representatives in Congress a letter as well! I have worked for the Federal Government for years (and have worked with and for Dr. Gerberding) and I can tell you that very little policy is actually made at the agencies these days. The CDC is likely only to change their tune if they get some letters from Congress persons asking them to justify their current policies and recommendations! And that will happen if it comes to the attention of a publicly elected representative that this is an issue that constituents care about. (Dr. Gerberding's constituent is Mr. Bush).
Also, Julie Gerberding's email is: [email protected] This address is publicly available, so feel free to email her. Your Congress person's email can be found at www.house.gov. Thanks!
Jen
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
I need help.. boy do I feel stupid. I have looked at this site, but can't seem to find direct emails listed, only links to submitting emails. Where do you go on the site to find direct emails??
Posts: 263 | From Georgia | Registered: Feb 2006
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
OK, I did send her an email.
Will let you all know what I hear back.
However, whatever the response, I intend to send my letter anyway. I have the right to voice my concerns to the CDC. They are paid with taxpayers money. Up to this point, they haven't done much to help us and have pretty much ignored us. They may keep doing that.
Looking at the comparisons between the emergence of the AIDS epidemic and this one, we will have to ultimately do the same as the AIDS advocates did. Make lots of noise. We need to use any and every chance we have to voice our opinions.
Lyme treatment here in NC is going backwards instead of forwards. We are up a creek without a paddle. And many, many will suffer as a result. Not to mention the fact that the NC Medical Board has taken the bold approach of labeling anything over 2 months of antibiotics "experimental", which basically gets the insurance companies out of paying. This is no accident. I fear there is much going on behind the scenes which led to this wording.
posted
Cave....I completely agree. Policies don't get changed by moving stories (unfortunately). They get changed by numbers and votes.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
To write the head of the CDC:
Dr. Julie Gerberding CDC Director 1600 Clifton Road Mail Stop #D14 Atlanta, GA 30333
Here's my letter. This week I got a call from a friend who was horrified at the treatment a 10-year-old girl received from her pediatrician.
The little girl was bitten by a tick a few weeks ago. She developed a bull's-eye rash at the bite site. She began to feel sick with headaches and a fever and loss of energy.
When taken to the doctor, he didn't know anything about Lyme disease, looked it up and came back and gave the child one (1) doxycycline pill and said if she did have Lyme disease that would cure her.
This is exactly the scenario I feared when I heard that the new guidelines for Lyme disease treatment will include a one-pill treatment of 200 mg of doxycycline. A recent study published in the New England Journal of Medicine concluded:
"A single 200-mg dose of doxycycline given within 72 hours after an I. scapularis tick bite can prevent the development of Lyme disease."
This information will be part of the new guidelines for treatment of Lyme disease to be published by the Infectious Diseases Society of America this fall.
Some doctors will scan this quickly and think they can treat so minimally no matter how long the patient has been ill.
If, as happens now, doctors not only under diagnose and underreport Lyme disease, but treat in this cavalier fashion - and they will- Lyme disease will cause even more havoc in American's lives than it does now.
Lyme disease and the other co-infections that can be transmitted in one tick bite will become a true epidemic. Other children will take the one pill and be told their continuing illness is not Lyme disease. Their childhoods will be ruined and the family finances will be ruined as well as they seek help and are sent from specialist to specialist who will not doubt the first doctor's diagnosis and treatment.
Luckily the little girl I mentioned first now will be seen by a doctor who has experience treating Lyme disease and will help her get well.
Proper education of doctors is sorely needed. One major focus of the bill currently before the house and senate will be to educate physicians.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks cave
For the link, I am needing all the tips I can find.
And Ann Fabulous letter!
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
Michele, Timaca, and Ann,
My, of my, do we have gifted letter writers here who touch our VERY SOULS with their words about lyme! God bless you all for sharing your thoughts & talents with us all ... giving others ideas on how to write THEIR own letters.
I'll work on mine tomorrow; hubby hates to hear me typing when he's trying to sleep! uffda ... I do understand.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good morning..
On my way to bed right now.. big duck butt kicking meeting tomorrow.. so gotta get my UGLY sleep. BUT... wanted to make a quick post here for ya'll.. so you don't hang out waiting.
I heard from Pat, Dr. Jem... and the President of the United States this evening.
OK.. OK... not really from the U.S. President.. but yes to the others! ~smile~ Just thought I'd make myself sound REALLY important. HA!
Pat let me know.. referring to this post, for which she was unaware... that the CDC is quite aware of the situation now. She said the CDC decisions will be made based on the material presented... and on the budget ... and also on science issues.
`````````````````````````````````````````````
Dr. J said... much more elequently than I can relay here... and to sum it up...
First of all... he wanted to thank everyone for the loyalty and focus they have demonstrated during these chaotic times. He knows that one day we will understand more completely the politics of what has happened, but for now he believes we should focus only on what we can reasonably manage and influence.
He said we must continue to remind ourselves that [LLMD's and their staff] have established a tradition of caring for patients, and a tradition of making patients their primary focus, always.
He is thankful for and humbled by the opportunity to have made a difference ... and that we can not deviate from our course.
He regrets the difficult times that were forced upon us all... and he is aware that everyone is being asked to do more with less... and is aware that uncertainty is an unhealthy environment.
However... he fervently believes we will survive and the day will come when we "touch our promise".
He is having a meeting later this week to discuss all this stuff with his folks there.. and hopefully he will share with us what can be done to help.
```````````````````````````````````````````````` Now.. if you want my impressions.. he seemed deeply concerned for his patients and their welfare.. as he always has. He is going to write up some stuff soon and will share it with you all.
In the meantime.. I think he intends to keep on keeping on.. and I feel good about his committment to move forward and not let people of a lower caliber get his goat.
This is my report (opinions/facts) on what was shared with me. Please don't ask me any questions about it.. cause this is all I know right now.
PS.. May I suggest we use this time to get ourselves taken care of and healthy as possible.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I just want to add that, if and when people do write, it might be a good idea to not only demonstrate the debilitating symptoms and disability, but also IF long-term antibiotics have helped you, please STRESS that in the letter.
I say that because I do believe they are aware of the symptoms we (claim to, perhaps without proof, in CDCs opinion) have already - they think those sx are due to something other than Lyme.........so, that is why I also think it is equally important to tell tham that long-term antibiotics have alleviated those symptoms.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Hey guys I am sorry to ask but I am not sure if we are suppose to send the letters now or wait to see what Tincup finds out or Dr. J makes a statement. Thanks mimi
Posts: 343 | From usa | Registered: Dec 2004
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
July 25, 2006
Dear Lyme Community,
Thanks for your kind words regarding the 7/12 meeting in DC. The CDC contacted me Friday, July 21, to let me know they are looking at the proposals LDA made on the 12th.
Some in the Lyme community have emailed me and others to start an email campaign to write to Dr. Gerberding. Many have asked my opinion of such a campaign. I understand your enthusiasm, but I do not think that sending letters at this time is the most productive use of your time. I know it is difficult to be patient. We have all been so for many years. However, the reality is, we provided many representative stories from Lyme patients in DC. Indications have been they understand that tick-borne diseases are complex and they do understand that many people are suffering. It appears we will probably have some meeting of the minds in some areas. However the science is still unsettled and the monies are scarce, both points which have been made. Thus, we need to concentrate our efforts on Congress?they control the purse strings.
We have companion bills in congress, HR-3427/S-1479, and we now have 73 cosponsors on the house version, and 12 on the Senate version. This is very good, but many of your Representatives and Senators are not signed on there yet. Additionally, we now must get the subcommittee and committee where the House bill sits to act upon it. Your time is best spent notifying these individuals that they need to hear the bill. Government agencies cannot make promises to us that require large expenditures of money when congress is not providing that money. The bills becoming law will definitely help that process. You can make that happen. We have worked hard to bring on the co-sponsors and many of you have already contacted committee members. Many more must do so. If the committee does not move the bill, no bill will be brought before the house for a vote. The House bill sponsor has notified the committee of his wishes to move the bill. The rest is up to us.
We can do it if we act together, NOW, while the iron is hot, as someone said. That bill along with CDC?s willingness to begin looking at the issues will bear fruit for us down the road.
Attached is a list of US House Committee members who must be contacted to move the bill. We need constituents in their districts to call. State residents of these members? states may have some impact, too. If you have friends/relatives in the committee person?s district/state, have them call, too. If you write, email or fax them only. Unsigned letters are usually not considered, name and address need to be there.
Thanks for all your help and remember, LDA does not have a corner on the Lyme disease market. People can take whatever actions they chose, but LDA tries to recommend actions that it feels are the best use of your time and energy as patients. We are in contact with patient groups and officials nationally and try to focus energies in places we think have the best chance of producing something positive.
Take care all and thanks again for your help.
Now! Register for the LDA/Columbia University "Lyme & Other Tick-Borne Diseases: Seeking Answers Through Science" fully accredited medical conference on October 20 in Philadelphia. See http://www.lymediseaseassociation.org/ for registration and details.
Pat Smith, President Lyme Disease Association, Inc. PO Box 1438 Jackson, NJ 08527 888-366-6611 information line 732 938-7215 fax www.LymeDiseaseAssociation.org
HR 3427 is currently sitting in the Health Sub Committee of the Energy & Commerce Committee in the House. Help find constituents (people in their district) for the representatives listed below. We have not had success finding enough constituents for ANY of these reps. Please forward this to everyone you know. We MUST find constituents for the list below and get them to call asking for support for this bill!
Constituents call their DC offices from list below (202 number). Ask to speak with the Health Legislative Assistant. If unavailable, speak with the aide who answered saying you are a CONSTITUENT (if you are in their district) or are in their state and you are calling to urge the congressman/woman to move HR 3427 out of committee intact. * Try to talk directly with the Health Legislative Representative in DC. If unavailable, talk with aide who answers. * Give them your name and address and ask to be added to their list in support of this bill. * If they want you to leave a voice message for the Health aide, leave your name, zip code and phone number and that you want the bill to be moved out of committee. * If possible give a VERY brief description of how much you or someone you know has suffered. Try to paint a picture of the extent of disability on the bad days and of the financial loss to society (disability, special school programs, sick days from work, doctor appointments, etc...)
Washington, DC Local Office State House Member Dist # Phone # Phone # Health Aide Chair of the Health Committee: GA Deal, Nathan 10 (202) 225-5211 (770) 535-2592 Brandon Clark Chair of the Energy & Commerce Committee: FL Bilirakis, Michael 9 (202) 225-5755 (727) 773-2871 Jerry White
AZ Shadegg, John 3 (202) 225-3361 (602) 263-5300 Shaun Small CA Bono, Mary 45 (202) 225-5330 (760) 320-1076 Taryn Keyworth CA Capps, Lois 23 (202) 225-3601 (805) 730-1710 Amy Fisher CA Eshoo, Anna 14 (202) 225-8104 (650) 323-2984 Jenny Nieto CO DeGette, Diana 1 (202) 225-4431 (303) 844-4988 Jed Perry FL Davis, Jim 11 (202) 225-3376 (813) 354-9217 Patrick Givens GA Norwood, Charles 9 (202) 225-4101 (706) 733-7066 James Paluskiewicz IL Rush, Bobby 1 (202) 225-4372 (773) 224-6500 Christian Fjeld IL Shimkus, John 19 (202) 225-5271 (217) 492-5096 Mo Zilly IN Buyer, Steve 4 (202) 225-5037 (317) 838-0404 Myrna Dugan ME Allen, Thomas 1 (202) 225-6116 (207) 774-5019 Susan Lexer MI Dingell, John 15 (202) 225-4071 (313) 278-2936 Jack Miniko Ranking Minority in the Energy & Commerce Committee MI Rogers, Michael 8 (202) 225-4872 (517) 702-8000 Kelly Childress MI Upton, Fred 6 (202) 225-3761 (269) 385-0039 Jane Williams MS Pickering, Charles 3 (202) 225-5031 (601) 932-2410 MaryMills Ritchie Vice Chair of Energy & Commerce Committee NC Myrick, Sue 9 (202) 225-1976 (704) 362-1060 Sarah Hale NJ Pallone, Frank 6 (202) 225-4671 (732) 571-1140 Robert Clark OH Brown, Sherrod 13 (202) 225-3401 (440) 245-5350 Sara Sills OH Gillmore, Paul 5 (202) 225-6405 (419) 448-9016 Andrew Beck OH Strickland, Ted 6 (202) 225-5705 (740) 376-0868 Sarah Curtis TN Gordon, Bart 6 (202) 225-4231 (615) 896-1986 Dana Licheberg TX Burgess, Michael 26 (202) 225-7772 (972) 434-9705 Need to ask TX Green, Gene 29 (202) 225-1688 (281) 999-5879 Lantie Slenzak TX Hall, Ralph 4 (202) 225-6673 (972) 771-9118 Leslie Gilbert WI Baldwin, Tammy 2 (202) 225-2906 (608) 258-9800 Elizabeth Pika WY Cubin, Barbara At lg (202) 225-2311 (307) 261-6595 Landon Stropko
SAMPLE letter:
If you sense from the phone call that any of the above reps need something in writing please consider e-mailing or faxing a letter. Sample letter below for your reference - please personalize it if you can.
Your First & Last name Your street address City, State and zip code Your phone number
Month day, year
The Honorable xxxx xxxxx U.S. House of Representatives
Dear Representative xxxxxxxxx:
I urge you to move the ``The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005,'' H.R. 3427, (Smith/Kelly) which is currently in your committee.
Lyme disease is almost eight times more commonly reported than West Nile Virus (WNV) in the U.S., yet a significantly higher percentage of funding is being set aside to prevent and treat WNV. In 2004, CDC reported 19,804 cases of Lyme and CDC & NIH total spending was $33.6 million. In 2004, CDC reported 2,539 cases of WNV and CDC & NIH total spending was $77.6 million.
According to the CDC, only 10 percent of cases meeting its criteria for Lyme disease are reported. Therefore 198,040 new cases meeting the criteria occurred in 2004 in the U.S. In addition, many other cases that do not meet the CDC criteria occurred in 2004.
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. Cases have doubled since then, so today's costs are probably $2 Billion or more annually! The average treatment and diagnosis and lost wages related to Lyme disease was $61,688 per year per patient.
Despite the prevalence, severity and economic costs of this illness, we patients with Lyme disease are having increased difficulty obtaining diagnosis and treatment. You are in a unique position to right this wrong. Your support to get H.R. 3427 (Smith/Kelly) moving in committee is essential. It will improve surveillance and prevention of Lyme disease, the development of accurate diagnostic tests and fund additional research to determine long-term course of illness and the effectiveness of different treatments.
I am sure you agree that Lyme disease patients deserve more from our health care system. Your support today will help secure more funding to support research, education and prevention of Lyme in the future. We implore you to join your colleagues in voting HR 3427 out of committee today
Sincerely,
Don't forget to sign your letter! Your first & last name
Posts: 2276 | From NC | Registered: Oct 2000
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bettyg
Unregistered
posted
fyi, I also posted something on medical, lyme & insurance problems, from KC MD, a lot of CDC info there that might be used. Haven't read Pat Smith, etc. letter yet...late for appt. Bettyg
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bettyg
Unregistered
posted
I'm back and just finished reading Pat Smith's letter to us all.
I too AGREE with her by contacting the above but most importantly YOUR STATE'S REPS & SENATORS TO CO-SPONSOR these 2 bills.
I have written 3-5 times to Iowa's Senators Tom Harkin & Chuck Grassley. I hear back from them but NOT ABOUT NOT CO-SPRONSORING THESE 2 IMPORTANT BILLS TO US LYMIES.
I know PJ Langhoff, author of THE SINGING FOREST, a journey of lyme, recently sent her book to Tom Harkin's IOWA office along with a letter about supporting this bill. I can't remember her nickname here. She MAY have sent Grassley too since he's CHAIR OF HEALTH committee.
It's starting to lightning; bye all! Bettyg
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posted
I called the DC offive of Sen. Frank Pallone and left a message with the Health L.A. about how important it is the the people of Monmouth County to have this bill moved out of committee and passed.
Posts: 263 | From Georgia | Registered: Feb 2006
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posted
Although I have written in the past about this bill to my reps in congress, they write back a sort of form letter (by intern no doubt) and don't sign on to be sponsors. My feeling is that some of these people might respond better if a group of people, say 4 or more, including both sexes, maybe a kid, went to see them or their staffer for health when these people come to home districts on visits. This is often done, not uncommon at all. So think about trying this if your rep has gotten letters, emails but hasn't signed on yet.
This means a long trip would not be necessary for lymies, and it might make more of an impression. Larger group would be fine too, followed by letters, emails, etc.
I just get the feeling that it has got to be raised above the horizon a bit more so their attention is grabbed. They hear constantly about the need for funding for innumerable diseases/health problems. Got to make this stand out.
Posts: 8430 | From Not available | Registered: Oct 2000
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I think it was good to send a letter to Dr. Gerberding and send copies to my senators and my representative.
I think they might take a second look if they knew I was writing to Dr. Gerberding.
I will send on Pat's info and suggestions for getting the bill out of committee.
We have some good Ohioans on the committee, so I will be sure to contact them.
posted
I decided to contact my legislators and not the CDC, per Pat's request.
I just finished reading "And the Band Played On" all about the politics of the AIDS epidemic. It really got me thinking about how complex the situation is and how important it is for us to stand behind the efforts of the LDA so that we stay together as one strong community. I think we'll get better results that way. And isn't that what we really want?
D
Posts: 261 | From San Mateo, CA | Registered: May 2005
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really good letters michelleM & Timaca! 
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