[Congressional Record Volume 145, Number 78 (Thursday, May 27, 1999)]
[Senate]
[Page S6313]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. BENNETT (for himself, Mrs. Murray, Mr. Schumer, and Mr. 
        Torricelli):
  S. 1163. A bill to amend the Public Health Service Act to provide for 
research and services with respect to lupus; to the Committee on 
Health, Education, Labor, and Pensions.


               lupus research and care amendments of 1999

 Mr. BENNETT. Mr. President, I rise today to introduce the 
Lupus Research and Care Amendments of 1999. This legislation would 
authorize additional funds for lupus research and grants for state and 
local governments to support the delivery of essential services to low-
income individuals with lupus and their families. The National 
Institute of Health (NIH) spent about $42 million less than one half of 
one percent of its budget on lupus research last year. I believe that 
we need to increase the funds that are available for research of this 
debilitating disease.

  Lupus is not a well-known disease, nor is it well understood. Yet, at 
least 1,400,000 Americans have been diagnosed with lupus and many more 
are either misdiagnosed or not diagnosed at all. More Americans have 
lupus than AIDS, cerebral palsy, multiple sclerosis, sickle-cell anemia 
or cystic fibrosis. Lupus is a disease that attacks and weakens the 
immune system and is often life-threatening. Lupus is nine times more 
likely to affect women than men. African-American women are diagnosed 
with lupus two to three times more often than Caucasian women. Lupus is 
also more prevalent among certain minority groups including Latinos, 
Native Americans and Asians.
  Because lupus is not well understood, it is difficult to diagnose, 
leading to uncertainty on the actual number of patients suffering from 
lupus. The symptoms of lupus make diagnosis difficult because they are 
sporadic and imitate the symptoms of many other illnesses. If diagnosed 
early and with proper treatment, the majority of lupus cases can be 
controlled. Unfortunately, because of the difficulties in diagnosing 
lupus and inadequate research, many lupus patients suffer debilitating 
pain and fatigue. The resulting effects make it difficult, if not 
impossible, for individuals suffering from lupus to carry on normal 
everyday activities including the demands of a job. Thousands of these 
debilitating cases needlessly end in death each year.
  Title I of the Lupus Research and Care Amendments of 1999 authorizes 
$75 million in grants starting in fiscal year 2000 to be earmarked for 
lupus research at NIH. This new authorization would amount to less than 
one half of one percent of NIH's total budget but would greatly enhance 
NIH's research.
  Title II of the Lupus Research and Care Amendments of 1999 authorizes 
$40 million in grants to state and local governments as well as to 
nonprofit organizations starting in fiscal year 2000. These funds would 
support the delivery of essential services to low-income individuals 
with lupus and their families. I would urge all my colleagues, Mr. 
President, to join Senator Murray, Senator Torricelli, Senator Schumer, 
and myself in sponsoring this legislation to increase funding to fight 
lupus.
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