[Congressional Record (Bound Edition), Volume 147 (2001), Part 7]
[Senate]
[Page 9426]
[From the U.S. Government Publishing Office, www.gpo.gov]



                              LYME DISEASE

  Mr. SANTORUM. Mr. President, I rise to join my colleague, Senator 
Chris Dodd of Connecticut, in lending support to the pressing cause of 
addressing the ruinous effects of America's most common tick-borne 
illness, Lyme disease.
  I thank the senior Senator from Connecticut for his long involvement 
and leadership on this most important public health issue. With 
thousands of Americans contracting Lyme disease each year, it is 
critical that we work aggressively to wage a comprehensive fight 
against this devastating tick-borne illness, which costs our country 
dearly in the way of medical expenditures and human suffering. The 
current lack of physician knowledge about Lyme and the inadequacies of 
existing detection methods are particularly problematic, and only serve 
to compound this growing public health hazard.
  Approximately one year ago, I joined with Senator Dodd, and 
Representatives Smith of New Jersey, Pitts and Goode to request of the 
U.S. General Accounting Office a report on some of the current concerns 
surrounding public and private efforts dedicated to Lyme. We asked 
about the past and present funding trends within the NIH and CDC and to 
what projects these resources are being devoted, and we asked about 
possible conflicts of interest within government agencies related to 
decisions about the diagnosis, treatment and prevention of Lyme.
  Although we have not yet received the official report of the GAO, we 
have received some preliminary findings that Senator Dodd and I 
believed merited the development of new legislation that we are 
introducing today the Lyme and Infectious Disease Information and 
Fairness in testing ``LIIFT'' Act to build upon the solid foundation 
laid by the Lyme Disease Initiative of 1999.
  The GAO's preliminary findings suggest that the CDC and NIH have lost 
sight of what ultimately matters to the people living with Lyme: 
Accurate diagnostic tools, access to effective treatment and ultimately 
a cure. Needless to say, the patient community is not well-served if 
these areas are not given proper priority at the CDC and NIH.
  Between 1991 and 1999, the annual number of reported cases of Lyme 
disease increased by an astonishing 72 percent. Even as the dramatic 
increase took place, according to the GAO, funding for Lyme disease at 
the CDC has increased by only 7 percent over the past 10 years.
  Whereas we applaud NIH for its work and we are pleased to see that 
Congress' efforts to double NIH funding have directly benefited Lyme 
research, poor coordination and the lack of proper funding at the CDC 
has left too many questions unanswered. Senator Dodd and I share the 
frustration of the patient community; why hasn't all of this research 
translated into better treatment? We similarly believe that the CDC's 
lack of proper funding and attention to tick-borne disease has stalled 
progress in the development of more accurate diagnostic tests for Lyme 
disease.
  The LIIFT Act will seek to remedy these issues by ensuring that the 
proper collaboration is taking place on the Federal level the proper 
collaboration between the Federal Government and the people it serves. 
Our bill will also address the funding imbalances for Lyme disease 
activities at the CDC that has inhibited the development of accurate 
detection methods and treatment for Lyme.
  With this new legislation we are calling for the formation of a 
Department of Health and Human Services Advisory Committee that will 
bring Federal agencies, such as the CDC and the NIH, to the table with 
patient organizations, clinicians, and members of the scientific 
community. This Committee will report its recommendations to the 
Secretary of HHS. It will ensure that all scientific viewpoints are 
given consideration at NIH and the CDC and will give a voice to the 
patient community which has often been left out of the dialogue.
  The LIIFT Act will also provide an additional $14 million over the 
next two years to the CDC to ensure that the Centers work with 
researchers around the country to develop better diagnostic tests and 
to increase its efforts to educate the public about Lyme disease. We 
also call upon the NIH to place an emphasis on funding the neurologic 
and vascular aspects of Lyme disease and to recruit a larger pool of 
researchers.
  In addition, this legislation authorizes an additional $7 million to 
fund the extraordinary research and eradication efforts already 
underway at the U.S. Army Center for Health Promotion and Preventive 
Medicine located in the Aberdeen Proving Ground in Maryland.
  I sincerely hope that our colleagues will join Senator Dodd and me in 
this most worthy cause and cosponsor the LIIFT Act. Lyme disease 
patients and their families have waited too long for a responsive plan 
of action to address their suffering and needs.
  The Tireless efforts of the Lyme patient and advocacy community have 
been instrumental in raising awareness and mobilizing support for this 
issue, and for this both Senator Dodd and I thank them. I look forward 
to working with them, Senator Dodd, and our colleagues to synthesize 
the best ideas from last session's Lyme Disease Initiative and the new 
LIIFT Act, and to enact into law strong legislation to help correct the 
mistakes of the past, and to give greater hope for the future by 
ensuring patients that the Federal Government is doing everything in 
its power to provide better treatments and ultimately, a cure.

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