Our Role & Impact

Legislative Activities

Founded in and serving the Washington, DC area since 2001, NatCapLyme educates government officials and healthcare industry leaders about Lyme and tick-borne diseases on behalf of individuals and families of those afflicted with such diseases. We actively engage with all sides of the Lyme and tick-borne disease issue to encourage measurable progress. NatCapLyme is an all-volunteer organization, but we have an appointed legal and legislative counsel, as well as individual board members, who bring political and legal experience to the table. Our legislative activities are ongoing, always focused on improving the lives of tick-borne disease sufferers.


We’re fighting on many fronts. We invite you to see what we’re doing on a state and federal level:

Lyme Disease Lobby – Education Day
Past Event : Information Only

Date: June 22, 2005
Where: U.S. Capitol, Washington, D.C.
Who: YOU, your family, & your friends

Meet at: The Rayburn House Building’s Cafeteria (vending machine side) at 10 am & walk the halls in support of H.R. 2526 to 5pm. The formal picture of us all is at 4:15pm.

What: Educate the House Offices about Lyme disease & other Tick-Borne Disorders, request each sign-on to HR 2526, and encourage health aids to attend an Education program about Tick-Borne Diseases.

Dear Friends:

We invite you to join everyone at the Capital in Washington, D.C. to educate the members of the House of Representatives about Lyme disease and request that each one sign on to H.R.2526 –
the Tick-Borne Advisory Committee (T-Bac) that was recently introduced into Congress by Representative Sue Kelly’s office.

Please email me at lymefnd@aol.com or call me at 860-870-0070 if you can join us. I have a growing list of volunteers and we look forward to everyone’s help. I will send more details to those who contact me to attend.

My best,

Karen Vanderhoof-Forschner, Lyme Disease Community Caucus

Groups Supporting H.R. 2526
  • Lyme Disease Society
  • Lyme Disease Foundation
  • Michigan Lyme Disease Association
  • National Capital Lyme Association
  • Ticked-Off and Fed-up
  • Greater Hartford Lyme Disease Support Group
  • Lyme Disease Foundation Midwest Task Force
  • North Carolina Lyme Disease Foundation, Inc.
  • Lyme Disease Network of South Carolina
  • Lyme Disease Association of Massachusetts
  • Hope to Heal Lyme, Inc.

• Lesley Fein, MD – Representing physicians

Bill Update – H.R 2526

Bill H.R 2526:

Giving the Public a Voice in Government Lyme & Tick-Borne Activities!

Dear Friends,

Great news! We have been talking about federal Lyme legislation and now we have a bill.
We hope that everyone will become an active educational voice for your members of Congress. Here is the scoop

On Monday, May 23, 2005, Representative Sue Kelly introduced into the House of Representatives, H.R. 2526 – Tick-Borne Advisory Committee Act. This legislation establishes a Tick-Borne Advisory Committee in order to provide the public with a voice into the Lyme and other tick-borne disorder Federal activities. This legislation is very similar to the LIFT Act that passed the Senate several years ago and was supported by all of the Lyme groups, but unfortunately did not become a Bill.

The single most important aspect of this legislation is that the public has 100% of the voting rights into what the committee decides! This public voice is very important because the government already coordinates its own activities with other government agencies through the “Lyme Disease Coordinating Committee,” that was established in 1992 by the National Institutes of Health.

Now, with your help, we can pass H.R. 2526, giving the public a strong voice into the governments Lyme activities!

Help empower the public by calling as many House Members as possible and request they sign-on to this Bill. Let’s get this Bill passed by July 1, 2005! We now control our own destiny and must get 216 House Members to sign-on to the Bill so it can pass the House of Representatives.

Please email us when you get a commitment from your representative to cosponsor this very important bill.

Together, we will make a better future for our families and friends!

Lyme Disease Foundation, Inc.
Lyme Disease Society,
Michigan Lyme Disease Association,Inc.
LDF-Midwest task Force,
National Capital Lyme Disease Association,
Greater Hartford Lyme Disease Support & Action Group,
Lesley Fein, MD (NJ),
T.O.F.U. Inc., Pennsylvania


  1. Call your Congressional House member (Representative) and ask to speak
    with the “Aid” in charge of “Lyme disease & Health Care Issues.” You can
    find out who your representative is by going to
  2. Ask him/her to sign-on to “H.R.2526” by contacting Richard Olson in Rep.
    Sue Kelly’s office at 202-225-5441. You can use the script below to help
  3. In addition, call, fax, and email these instructions to your friends &
    family and ask them to call their Representatives.

“Good Morning/Afternoon,

I’m ____your name)______ calling to request __(Representative’s name)____ to sign-on to H.R. 2526 a bill that would establish an advisory committee for Tick-Borne disorders.

This legislation will help those suffering from Lyme disease & other Tick-Borne disorders in your state and throughout the United States by establishing a Tick-Borne Advisory Committee to provide a public voice into government Lyme disease and Tick-Borne activities.

Please contact Richard Olson at 202-225-5441 in Representative Sue Kelly’s office and add your name to the list of sponsors.

Thank-you, ”

(Your Name)


Quick Facts
  • H.R. 2526 is a multiple-disease Bill covering all Tick-Borne disorders including Ehrlichiosis, Babesiosis, Bartonella, Rocky Mountain Spotted Fever, Relapsing Fever, Tick Paralysis, Tularemia, and more.
  • One tick-bite can spread multiple diseases.
  • Ticks across the country spread diseases.
  • The most common Tick-Borne disease is Lyme disease, which accounts for 90% of all vector-borne infections in the United States.
  • Lyme disease patients live in every state. In 2002 the number of cases increased by 40%.
  • A consumer survey proved that people up and down the eastern seaboard know of someone with Lyme disease.
  • There is no definitive test for Lyme disease.
  • A survey by the Lyme Disease Foundation and the Society of Actuaries found that Lyme disease cost this country approximately $1- $2 billion per year in increased medical costs, lost productivity, prolonged pain and suffering, unnecessary testing, and costly delays in diagnosis and inappropriate treatment.
  • According to the Centers for Disease Control and Prevention, cases of this Tick-Borne disease have increased 25-fold since national surveillance of it began in 1982. Between 1980 and now 244,003 case have been reported and accepted by the CDC as qualified cases. Studies have shown that the actual numbers of Tick-Borne disease cases are approximately 10 times the amount reported due to poor surveillance of the disease.
  • Patients with Lyme disease are increasingly having difficulty obtaining diagnosis and treatment for these diseases, and being restored to health. Because of differences in medical and scientific opinion, clinicians and other providers of health care services (testing laboratories and intravenous teams) face retaliation from insurance companies and medical licensure boards based on their diagnosis and treatment of patients that vary from the CDC’s surveillance criteria.

If you know someone in another state that would be willing to help please do not delay, call them now.

Below is the Bill in its entirety.




Tick-Borne Disorders Advisory Committee Act of 2005 (Introduced in House)

HR 2526 IH
1st Session
H. R. 2526

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


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



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,


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


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.


(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-


(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.


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.


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.

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.


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.


Tickula is back and on the loose!