[Congressional Record Volume 145, Number 114 (Thursday, August 5, 1999)]
[Extensions of Remarks]
[Pages E1799-E1800]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                  THE LYME DISEASE INITIATIVE OF 1999

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                        Thursday, August 5, 1999

  Mr. SMITH of New Jersey. Mr. Speaker, today I am reintroducing 
legislation to wage a comprehensive fight against Lyme disease.
  This proposal represents the next stage of our campaign to reduce and 
then eradicate Lyme disease. it is a five year, $125 million blueprint 
for attacking the disease on every front. In addition to authorizing 
the necessary resources to wage this war, the bill: (1) makes the 
development of better detection tests for Lyme the highest priority of 
Lyme disease research; (2) lays out a lost of vital public health goals 
for agencies to accomplish, including a 33 percent reduction in Lyme 
disease within five years of enactment in the 10 highest and most 
endemic states; (3) fosters better coordination between the scattered 
Lyme disease programs within the Federal Government through a five-year 
joint-agency plan so that the left hand knows what the right hand is 
doing; (4) helps protect federal workers and visitors at federally 
owned lands in endemic areas through a system of periodic, 
standardized, and publically accessible Lyme disease risk assessments; 
(5) requires a review of our system of Lyme disease prevention and 
surveillance of search for areas of improvement; (6) fosters additional 
research into other related tick-borne illnesses so that the problem of 
co-infection can be addressed; (7) initiates a plan to boost public and 
physician understanding about Lyme disease; and (8) creates a Lyme 
Disease Task Force to provide the public with the opportunity to hold 
our public health officials accountable as they accomplish these tasks.
  Mr. Speaker, Lyme disease is one of our nation's fastest growing 
infectious diseases, and the most common tick-borne disease in America. 
According to some estimates, Lyme disease costs our nation $1 billion 
to $2 billion in medical costs annually. The number of confirmed cases 
of Lyme disease was nearly 16,000 last year, an increase of 24.5 
percent from the previous year, and that is only the tip of the 
iceberg. Many experts believe the official statistics understate the 
true numbers of Lyme disease cases by as much as ten or twelve-fold. 
Lyme disease is sometimes called the `Great Pretender' disease because 
its symptoms so closely mimic other conditions. Thus, it can be easily 
misdiagnosed. Worse still, our current detection tests are not always 
reliable and accurate enough to defect the disease in patients.
  The Lyme Disease Initiative of 1999 builds on the accomplishments of 
the legislation introduced in the previous Congress, H.R. 379. As 
Members may recall, we were successful in getting a portion of that 
bill enacted as part of the Strom Thurmond National 
Defense Authorization Act for Fiscal Year 1999, as well as part of the 
Fiscal Year 1999 Defense Appropriations bill. The provisions from last 
year up dedicated up to $3 million in Department of Defense funding 
dedicated for Lyme and tick-borne disease research, so that our 
soldiers and their families can be protected when they work and live in 
areas endemic for Lyme disease. This $3 million in funding was a good 
start, but there is still so much that remains unknown about Lyme 
disease.

  That is where the new proposal comes in. It is the product of 
countless meetings with patients and families struggling to cope with 
this terribly debilitating disease. I cannot tell my colleagues how 
many times I have met with families who have told me heart breaking 
stories about how they went from doctor to doctor without getting an 
accurate diagnosis, getting progressively weaker and sicker, while 
racking up massive medical bills. Sadly, the lack of physician 
knowledge about Lyme disease, and the inadequacies of existing 
laboratory detection tests, compound the misery. Consequently, we have 
consulted extensively with the organizations representing these 
patients, as well as with the agencies charged with implementing the 
new program, to ensure that the bill addresses these very real 
concerns.
  In short, I believe this is a good plan that affirmatively meets the 
needs of patients, and one that is worthy of my colleagues' support.

                   The Lyme Disease Initiative of 1999


        Section 1. Short Title--Lyme Disease Initiative of 1999

                          Section 2. Findings

        Section 3. Five Year Plan of Action, Public Health Goals

       Establishes a Five-Year plan (authorizing $125 million over 
     five years) to reduce the incidence and prevalence of Lyme 
     disease, and requires Secretaries of Health and Human 
     Services, Defense, Agriculture, and Interior to collaborate 
     in creating this five year plan.
       Goal No. 1: Direct Direction Tests. The legislation directs 
     federal researchers to make the development of a reliable, 
     reproducible direct detection test for Lyme disease a 
     priority. Without a good detection test, individuals will 
     continue to get misdiagnosed, insurance companies will 
     continue to dispute and deny needed treatments, and patients 
     will not know if they are truly cured of Lyme.
       Goal No. 2: Improved Surveillance and Reporting System. 
     Requires a review of the existing reporting system for Lyme, 
     including

[[Page E1800]]

     the surveillance criteria used to determine whether or not a 
     case of Lyme is counted in the state statistics reported to 
     CDC. Requires this review to be inclusive, and obtain the 
     input of health providers, Lyme disease patient advocacy 
     groups, and state and local governments. It also considers 
     the use of a `dual reporting' system so that valuable data 
     collected on persons who do not meet the surveillance 
     criteria definition of Lyme--but are still being treated for 
     Lyme by their doctor.
       Goal No. 3: Lyme Disease Prevention. Requires CDC to 
     establish a baseline rate of Lyme disease in the 10 highest 
     endemic states, and aims for a reduction in this rate of 33 
     percent within 5 years. Means used to accomplish this goal 
     may include natural and non-pesticidal means to control tick 
     populations, as well as better public education and 
     systematic risk assessments on the risks of Lyme disease on 
     federally owned lands in endemic areas.
       Goal No. 4: Prevention of Other Tick-Borne Diseases. 
     Authorizes programs to prevent, and expand research on, other 
     tick-borne infectious diseases. Although Lyme disease cases 
     are the overwhelming majority of all tick-borne infections in 
     the U.S., many Lyme patients are co-infected with other tick-
     borne diseases.
       Goal No. 5: Improved Public and Physician Education. 
     Establishes a multi-departmental program to improve public 
     and health provider awareness of how to prevent Lyme disease, 
     how to diagnose it, and how to treat it.


                   Section 4. Lyme Disease Task Force

       Establishes a joint government/public Lyme Disease Task 
     Force to provide advice to the Secretaries of Agriculture, 
     Health and Human Services, Defense and Interior on achieving 
     the five public health goals.
       Public members on the task force will include: (1) Lyme 
     disease research scientists, (2) Lyme disease patient 
     advocacy organizations, (3) clinicians with extensive 
     experience in treating Lyme disease, (4) Lyme disease 
     patients, and/or the parents or family members of those who 
     have had Lyme disease.


                       Section 5. Annual Reports

       Mandates annual progress reports to Congress so the 
     taxpayers will be able to hold agencies accountable for 
     following through on the five year plan.


                         Section 6. Definitions

               Section 7. Authorization of Appropriations

       Provides $125 million over five years in new authorization 
     to fund this coordinated, multi-agency war on Lyme disease.
       $40 million in additional authorization over five years ($8 
     million/year) for the National Institutes of Health (NIH), 
     most of which will be used to develop and improve direct 
     detection tests for Lyme. This new money, if appropriated, 
     will increase existing NIH Lyme research by approximately 41 
     percent.
       $40 million in additional authorization over five years ($8 
     million/year) for the Centers for Disease Control and 
     Prevention (CDC). This money will be used to review the 
     surveillance criteria, fund tick control and public education 
     initiatives, as well as prevention programs. If enacted and 
     appropriated, CDC resources devoted to Lyme would be doubled 
     under the proposed bill.
       $30 million in additional authorization over five years ($6 
     million/year) for the Department of Defense (DoD). This 
     amount was identified by DoD in its Fiscal Year 1999 report 
     to Congress on Lyme disease as the amount necessary to fund 
     current and future research requirements.
       $7.5 million in additional authorization over five years 
     ($1.5 million/year) for the Department of Agriculture to 
     enhance USDA's research capabilities on Lyme. USDA currently 
     is exploring innovative techniques to remove/manage tick 
     populations with minimal pesticide exposure to humans.
       $7.5 million in additional authorization over five years 
     ($1.5 million/year) for the Department of Interior. This will 
     be used to improve public awareness and understanding of the 
     risks of Lyme disease at federally owned lands, as well as 
     needed tick control efforts.

------------------------------------------------------------------------
                                                   Total
                                                number Lyme     Annual
                                                   cases      incidence
                     State                      reported to  per 100,000
                                                 CDC 1989-     persons
                                                    1998
------------------------------------------------------------------------
New York......................................       39,370         21.6
Connecticut...................................       17,728         54.2
Pennsylvania..................................       14,870         12.3
New Jersey....................................       13,428         16.9
Wisconsin.....................................        4,760          9.3
Rhode Island..................................        3,717         37.5
Maryland......................................        3,410          6.8
Massachusetts.................................        2,712          4.5
Minnesota.....................................        1,745          3.8
Delaware......................................        1,003         14.0
------------------------------------------------------------------------