HR 2526 was reintroduced by Congresswoman Sue Kelly, Chair of the Congressional Lyme Disease Caucus, after passing the Senate by unanimous consent in a previous session. HR 2526 is comprehensive Lyme disease education, prevention, and research legislation. We need every Lyme disease patient and person at risk in an endemic area to help pass this important bill. Please help by contacting your Representative and asking them to become a cosponsor.

There is a sample letter below which you can simply cut, paste, then fill in the blanks and send as an email, fax, or letter. Use the links below to find the contact information for your Representative. Sending a letters to your Representative using the sample letter should not take you more than a few minutes. If you have more time, personalize the letter or write your own. Personalized letters are generally the most effective.

Thank you,

The Lyme Disease Society
Member, Lyme Disease Community Caucus

Use the below links to contact your Representative:
www.house.gov/writerep
www.congress.org

Sample Letter in support of HR 2526

Dear (Congressman or Congresswoman) (Last Name),

I would like to ask for your support as a cosponsor of HR 2526. HR 2526 is comprehensive Lyme disease education, prevention and research legislation which previously passed the Senate by unanimous consent (S. 969- 107th Congress). The Lyme disease patient community and individuals at risk in endemic areas need your support as a cosponsor. Passage of HR 2526 is critical to the fight against Lyme disease and stopping the rampant spread of tick-borne illnesses.

HR 2526 establishes a Tick-Borne Disorders Advisory Committee in the Office of Secretary at the Department of Health and Human Services. The Advisory Committee brings together patient representatives, non-profit organizations, health care providers, scientific community members, and public health officials to coordinate federal tick-borne disease programs. The bill provides $50,000,000 in funding over five years for federal Lyme disease education, prevention and research. This important funding will mobilize efforts to better prevent, diagnose and treat Lyme disease.

I hope you will become a cosponsor of HR 2526. You can contact Richard Olson in Rep. Sue Kelly's office (225-5441) to sign on as a cosponsor of the bill.

Sincerely,

(your name)

(your full address)

HR 2526 IH

109th CONGRESS

1st Session

H. R. 2526

To establish a Tick-Borne Disorders Advisory Committee, and for other purposes.

IN THE HOUSE OF REPRESENTATIVES

May 23, 2005

Mrs. KELLY (for herself, Mr. HINCHEY, Mr. KILDEE, Mr. MCNULTY, Mr. BRADLEY of New Hampshire, Mr. WOLF, Mr. PAYNE, Mr. ENGLISH of Pennsylvania, Mr. SWEENEY, Mr. GILCHREST, Mr. HASTINGS of Florida, and Mr. FRANK of Massachusetts) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To establish a Tick-Borne Disorders Advisory Committee, and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `Tick-Borne Disorders Advisory Committee Act of 2005'.

SEC. 2. FINDINGS.

Congress makes the following findings:

(1) Lyme disease is a common but frequently misunderstood illness that, if not caught early and treated properly, can cause serious health problems.

(2) Lyme disease is a bacterial infection that is transmitted by a tick bite. Early signs of infection may include a rash and flu-like symptoms such as fever, muscle aches, headaches, and fatigue.

(3) Although Lyme disease can be treated with antibiotics if caught early, the disease often goes undetected because it mimics other illnesses or may be misdiagnosed. Untreated, Lyme disease can lead to severe heart, neurological, eye, and joint problems because the bacteria can affect many different organs and organ systems.

(4) Despite 17 years of Federal funding, there is still no test that can accurately determine infection and then prove bactericidal cure so that proper treatment is adequately achieved. Persistence of symptomatology in many patients without reliable testing makes treatment of patients more difficult.

(5) If an individual with Lyme disease does not receive treatment, such individual can develop severe heart, neurological, eye, and joint problems.

(6) Although Lyme disease accounts for 90 percent of all vector-borne infections in the United States, the ticks that spread Lyme disease also spread other disorders, such as ehrlichiosis, babesiosis, and other strains of Borrelia. All of these diseases in 1 patient makes diagnosis and treatment more difficult.

(7) Although tick-borne disease cases have been reported in 49 States and the District of Columbia, about 90 percent of the 20,000 cases have been reported in the following 10 States: Connecticut, Pennsylvania, New York, New Jersey, Rhode Island, Maryland, Massachusetts, Minnesota, Delaware, and Wisconsin. Studies have shown that the actual number of tick-borne disease cases are approximately 10 times the amount reported due to poor surveillance of the disease.

(8) Persistence of symptomatology in many patients without reliable testing makes treatment of patients more difficult.

(9) According to studies, Lyme disease costs the Nation between $1,000,000,000 to $2,000,000,000 each year in increased medical costs, lost productivity, prolonged pain and suffering, and costly delays in diagnosis and inappropriate treatment.

SEC. 3. ESTABLISHMENT OF A TICK-BORNE DISORDERS ADVISORY COMMITTEE.

(a) Establishment of Committee- Not later than 180 days after the date of enactment of this Act, there shall be established an advisory committee to be known as the Tick-Borne Disorders Advisory Committee organized in the Office of the Secretary.

(b) Duties- The Committee shall advise the Secretary of Health and Human Services and the Assistant Secretary for Health regarding how to--

(1) assure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne disorders;

(2) identify opportunities to coordinate efforts with other Federal agencies and private organizations addressing tick-borne disorders; and

(3) develop informed responses to constituency groups regarding the Department of Health and Human Services' efforts and progress.

(c) Membership-

(1) APPOINTED MEMBERS-

(A) IN GENERAL- The Secretary shall appoint voting members to the Committee from among the following member groups:

(i) Scientific community members.

(ii) Representatives of tick-borne disorder voluntary organizations.

(iii) Health care providers.

(iv) Patient representatives who are individuals who have been diagnosed with tick-borne illnesses or who have had an immediate family member diagnosed with such illness.

(v) Representatives of State and local health departments and national organizations who represent State and local health professionals.

(B) REQUIREMENT- The Secretary shall ensure that an equal number of individuals are appointed to the Committee from each of the member groups described in clauses (i) through (v) of subparagraph (A).

(2) EX OFFICIO MEMBERS- The Committee shall have nonvoting ex officio members determined appropriate by the Secretary.

(d) Co-Chairpersons- The Assistant Secretary for Health shall serve as the co-chairperson of the Committee with a public co-chairperson chosen by the members described under subsection (c). The public co-chairperson shall serve a 2-year term and retain all voting rights.

(e) Term of Appointment- All members shall be appointed to serve on the Committee for 4 year terms.

(f) Vacancy- If there is a vacancy on the Committee, such position shall be filled in the same manner as the original appointment. Any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of that term. Members may serve after the expiration of their terms until their successors have taken office.

(g) Meetings- The Committee shall hold public meetings, except as otherwise determined by the Secretary, giving notice to the public of such, and meet at least twice a year with additional meetings subject to the call of the co-chairpersons. Agenda items can be added at the request of the Committee members, as well as the co-chairpersons. Meetings shall be conducted, and records of the proceedings kept as required by applicable laws and departmental regulations.

(h) Reports-

(1) IN GENERAL- Not later than 24 months after the date of enactment of this Act, and annually thereafter, the Secretary shall submit to Congress a report on the activities carried out under this Act.

(2) CONTENT- Such reports shall describe--

(A) progress in the development of accurate diagnostic tools that are more useful in the clinical setting; and

(B) the promotion of public awareness and physician education initiatives to improve the knowledge of health care providers and the public regarding clinical and surveillance practices for Lyme disease and other tick-borne disorders.

(i) Authorization of Appropriations- There is authorized to be appropriated to carry out this Act, $250,000 for each of fiscal years 2006 and 2007. Amounts appropriated under this subsection shall be used for the expenses and per diem costs incurred by the Committee under this section in accordance with the Federal Advisory Committee Act (5 U.S.C. App.), except that no voting member of the Committee shall be a permanent salaried employee.

SEC. 4. AUTHORIZATION FOR RESEARCH FUNDING.

There is authorized to be appropriated $10,000,000 for each of fiscal years 2006 through 2010 to provide for research and educational activities concerning Lyme disease and other tick-borne disorders, and to carry out efforts to prevent Lyme disease and other tick-borne disorders.

SEC. 5. GOALS.

It is the sense of the Congress that, in carrying out this Act, the Secretary of Health and Human Services, acting as appropriate in consultation with the Director of the Centers for Disease Control and Prevention, the Director of the National Institutes of Health, the Committee, and other agencies, should consider carrying out the following:

(1) FIVE-YEAR PLAN- It is the sense of the Congress that the Secretary should consider the establishment of a plan that, for the five fiscal years following the date of the enactment of this Act, provides for the activities to be carried out during such fiscal years toward achieving the goals under paragraphs (2) through (4). The plan should, as appropriate to such goals, provide for the coordination of programs and activities regarding Lyme disease and other tick-borne disorders that are conducted or supported by the Federal Government.

(2) FIRST GOAL: DIAGNOSTIC TEST- The goal described in this paragraph is to develop a diagnostic test for Lyme disease and other tick-borne disorders for use in clinical testing.

(3) SECOND GOAL: SURVEILLANCE AND REPORTING OF LYME DISEASE AND OTHER TICK-BORNE DISORDERS- The goal described in this paragraph is to accurately determine the prevalence of Lyme disease and other tick-borne disorders in the United States.

(4) THIRD GOAL: PREVENTION OF LYME DISEASE AND OTHER TICK-BORNE DISORDERS- The goal described in this paragraph is to develop the capabilities at the Department of Health and Human Services to design and implement improved strategies for the prevention and control of Lyme disease and other tick-borne diseases. Such diseases may include Southern Tick Associated Rash Illness, ehrlichiosis, babesiosis, and other bacterial, viral, and rickettsial diseases such as tularemia, tick-borne encephalitis, Rocky Mountain Spotted Fever, and bartonella, respectively.

SEC. 6. DEFINITIONS.

In this Act:

(1) The term `Committee' means the Tick-Borne Disorders Advisory Committee established by section 2.

(2) The term `Secretary' means the Secretary of Health and Human Services.

I understand that 28 groups initially signed up in support of the Kelley bill (2526)......but NOW the new HR 2877 appears to be much better and the fact that ILADS signed up to support this speaks volumes in my little lyme brain..

So gang we have 2 bills!! How great, no matter what your preference just call your Congressman!!!!!!!!!!

If you would like to compare the 2 federal bills go to the CALDA website http://calda.intranets.com Log on as a GUEST.

quote:

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Originally posted by brainless:
Which bill, if any, protects LLMDs?]

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I would assume the bill ILADS supports protects LLMDS, since ILADS is the largest (and I think the only) organization of LLMDS.

and to see who donated what amount to Thomas, take a look here.....mostly insurance and medical http://www.opensecrets.org/races/contrib.asp?ID=CA22&cycle=2004&special=N

HR2526 does not address WHO is involved in the advisory. This means Dr. Steere, Datwyler, or insurance company advocates etc could make up the federal advisory panel which would most definately compromized the lyme patients.

HR2877 (presented by congressman Smith) has addressed these issues and also requests additional moneys.

This is not a "popularity" contest, nor is it one group smearing another. This bill originially was to be introduced by Kelly AFTER a compromise in the wording to require LYME TREATING PHYSICIANS to be part of the advisory panel. The meeting to address this was scheduled, but the for some reason Kelly pushed the bill through two days prior to the scheduled meeting.

While we are thrilled that Kelly is willing to address the issue, we need to make sure we dont end up compromized like CT was compromised in the late 1980's.

quote:

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Originally posted by achtungBb:
[B]hmmmmmm a couple of those groups are no longer active and have disbanded so how are they getting them to sign up? makes me wonder how they got all that support so fast, and the timing.

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Which groups do you believe disbanded?? I do believe if you are going to make a statement it should be more direct such as "oregon disbanded" or something like that. Please clarify?

Timing, the timing for the HR 2877 can be explained well. There has been negotiation for quite some time on the bill, and in the absence of action on some previous bills and on the compromise of other bills.

When Kelly announced the bill was going to be introduced both sides were assured the opportunity to look over the proposal, and work on wording so only one bill would be presented (thus making everything easier).
However, a hasty decision was made to introduce the bill prior to all input being recieved.

The input missing was the input requiring that TREATING PHYSICIANS be included on the federal panel, not just physician who are involved in funded research (some funded by insurance advocacy backing????).

It is imperative that physicians who recognize LATE STAGE PERSISTANT LYME (vs POST LYME SYNDROME) are involved in the panel, hence the new bill and its timing.

Backing

Since there had been work on the bill for the past few years there were many supporters. These supporters were state leaderships who had valuable input to fine tune the bill based on separate state issues. Each state over the past months has been allowed to give input of the primary issues they are having, and the ALERT bill was built around these issues.

This new ALERT bill was widely recieved because each state was included in identifying the issues they had and each state feels represented.

This is some really good background info to have. I love the part about the bill getting pushed through two days before a scheduled meeting on a compromise section requiring LLMD's on the Advisory Panel.

That is RICH.

Oh, but I'm sure that has absolutely nothing to do with insurance company influence. Oh, heavens no. Perish the thought. Pure coincidence.

did lymenet help you in your recovery? did you ever have lyme? how long go were you treated?what llmd treated you?

why don't you support both bill's? is one better than the other? why are you helping lymenet now? you come out of the dark,and we should believe you? is it your purpose to confuse?

be well , gary

Some people on Lymenet need to realize that there are dedicated advocates who help patients without posting thousands of times on this board or posting our entire medical history on Lymenet.

FYI, I personally donated to Lymenet's fundraising in the past. So please do not question my right to post on this board.

"HR2526 does not address WHO is involved in the advisory. This means Dr. Steere, Datwyler, or insurance company advocates etc could make up the federal advisory panel which would most definately compromized the lyme patients.

HR2877 (presented by congressman Smith) has addressed these issues and also requests additional moneys.

This is not a "popularity" contest, nor is it one group smearing another. This bill originially was to be introduced by Kelly AFTER a compromise in the wording to require LYME TREATING PHYSICIANS to be part of the advisory panel. The meeting to address this was scheduled, but the for some reason Kelly pushed the bill through two days prior to the scheduled meeting."

This is totally and completely false. The timing was decided by Kelly's office due to internal factors between the offices involved. It has nothing to do with possible changes to the content or some conspiracy theory.

quote:

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Originally posted by LHalins:
This inaccurate information has been posted:

"HR2526 does not address WHO is involved in the advisory. This means Dr. Steere, Datwyler, or insurance company advocates etc could make up the federal advisory panel which would most definately compromized the lyme patients.

HR2877 (presented by congressman Smith) has addressed these issues and also requests additional moneys.

This is not a "popularity" contest, nor is it one group smearing another. This bill originially was to be introduced by Kelly AFTER a compromise in the wording to require LYME TREATING PHYSICIANS to be part of the advisory panel. The meeting to address this was scheduled, but the for some reason Kelly pushed the bill through two days prior to the scheduled meeting."

This is totally and completely false. The timing was decided by Kelly's office due to internal factors between the offices involved. It has nothing to do with possible changes to the content or some conspiracy theory.

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further, Kelly gets her financial support from the following. Why should we consider the same insurance companies pushing to eliminate "long term care for lyme patients" not to have their hand in this, and why would we think she has no obligation to those who have supported her financially???

ACE INA
$3,000

AEGON USA
$3,500

AFLAC Inc
$4,000

Allstate Insurance
$1,000

American Council of Life Insurers
$3,000

American Insurance Assn
$1,000

Cigna Corp
$2,000

Council of Insurance Agents & Brokers
$7,500

Fortis Inc
$1,000

Health Insurance Assn of America
$1,500

Independent Insurance Agents of America
$9,500

Lincoln National Corp
$1,000

Massachusetts Mutual Life Insurance
$4,000

Metropolitan Life Insurance
$7,000

National Assn of Health Underwriters
$1,500

National Assn of Prof Insurance Agents
$4,000

National Assn/Mutual Insurance Companies
$1,500

Nationwide
$2,000

Natl Assn/Insurance & Financial Advisors
$5,000

New York Life Insurance
$4,000

Reinsurance Assn of America
$1,000

Zurich Insurance

source: http://www.opensecrets.org/pacs/memberprofile.asp?cid=N00001020&cycle=2004&expand=F09

click on the box that says insurance, and it will expand to show all the insurance companies supporting her.

Are you all planning on trashing Senator Dodd, Senator Santorum, Congressman Smith, anyone who has helped with Lyme disease legislation? Are you going to post their contributions from PACs? Most everybody in Washington gets contributions from PACs.

Insurance companies had absolutely nothing to do with HR 2526. Nothing. It was a bill written with patient groups and passed the Senate in 2002. Why did LDA support this bill back then if it is now the evil product of insurance companies?

I guess we will not know what the legislative things were behind having to push up the bill introduction.

It just appears that the timing, after a promise was made to address a few major issues involved caused question.

I dont think this ever would have "blown up" like it did, if some comments had not been made (by Chuck in particular) which forced some issues to the table.

While insurance is not "behind" the bill the number one financial supporter for the person launching the bill is the Insurance company. This can not be overlooked.
I dont usually think that one bites the hand that feeds them.

I dont know Sue,and I sincerely appreciate that she cares enough to introduce something. I do find it sad that the process was so rushed, when she knew additional input for the bill was requested (and granted) to be submitted and then the bill was introduced before that could be done at a scheduled time.

The backlash could have been prevented by calling Pat and saying I know you have input and we have to get this thing in TOMORROW, so can you please send your modifications for our review.

This is not an attack of Sue Kelly. I am deeply concerned about the bill not adequately covering the needs of lyme patients. That is the focus of my attack.

Sue,if you read this board, my apologies for appearing to be upset with you.

The Smith Bill (the other Lyme Bill #2877) is in the best interests (as worded at this time) of lyme patients because it assures Lyme Literate involvement.

We all know how dangerous Lyme
ill-literacy can be..

and having the possibility open to be giving them millions to do research, ect. makes me more than a little nervous.

I think who is behind it and who their supporters are matters as well..

but it comes down to the wording of the bill.

(I'm writing to ask they DO NOT pass 2526)

Also, ILADS endorsement is very important IMO.

Mo

That was then. Now is now.

Since all parties had agreed to wait a couple of weeks to hash out "compromise language," Kelly was able to get her preferred language out there early and probably hoped that those wanting more specific language would not pursue a separate bill. However there was enough dissatisfaction with the lack of safeguards in the Kelly bill that we made the decision to move forward with a separate bill, once again.

It is possible that both bills will move forward and eventually some compromise be effected. Or, one could progress and the other stagnate. Or both could die.

Amendments will undoubtedly be made. Since the bills do not mandate insurance coverage, the insurance lobby may not be that interested in it. If either bill is amended so that its terms become unfavorable to the Lyme patient community, we will have to lobby against it and try to kill it.

I am sorry that it seems you have been verbally clobbered by my fellow passionate Lymies.

I have read both bills, and must admit that I will have to re-read and gather more information before making my decision as to which bill would be best suited for ALL of us.

I would kindly ask that, since you are asking for our support of HR 2526, that you present us with REASONS as to why HR 2526 would be a superior bill to HR 2877.

I understand the point that the language of 2526 was previously passed by the Senate in years past - but as another has said: The past is the past. (Did someone else say that or am I hallucinating again?)

I think that with any political conversation, people are naturally very passionate about their position.

I also know that we Lymies can get our dander up very quickly. I would just like to understand more about why you think 2526 is the superior bill so that we can all make a more informed decision.

I know it's difficult, but I would encourage all of us to work together and realize that the different sponsoring organizations are NOT the enemy - but that the Lyme bacteria is the true enemy.

Blessings,