[Congressional Record Volume 147, Number 68 (Thursday, May 17, 2001)]
[Extensions of Remarks]
[Page E831]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




               IN SUPPORT OF NATIONAL WOMEN'S HEALTH WEEK

                                 ______
                                 

                          HON. CARRIE P. MEEK

                               of florida

                    in the house of representatives

                        Wednesday, May 16, 2001

  Mrs. MEEK of Florida. Mr. Speaker, I rise today in support of 
National Women's Health Week, to speak of a topic near and dear to me 
which is Lupus.
  I know firsthand the heartache that lupus causes. I lost a sister to 
lupus and have seen many others suffer from this incurable disease. I 
know all too well the difficulties persons with lupus face to maintain 
employment and lead normal lives. I have seen the often-devastating 
side effects of current treatment regimens. I also know the profound 
impact that my sister's disease had on me and that lupus often has on 
the family and friends of lupus patients.
  More people have lupus than AIDS, cerebral palsy, multiple sclerosis, 
sickle-cell anemia and cystic fibrosis combined. Yet I believe that 
much of the public does not yet have this awareness. The Lupus 
Foundation of America estimates that between 1,400,000 and 2,000,000 
people have been diagnosed with lupus. Many others have the disease, 
but have not even been diagnosed because of the insidious way in which 
lupus ``masks'' itself, thereby often making it difficult to diagnose. 
Many lupus victims are mis-diagnosed, and some victims even die, 
without even knowing that they have this disease.
  Lupus is a wide-spread and devastating autoimmune disease that causes 
the immune system to attack the body's own tissue and organs, including 
the kidneys, heart, lungs, brain, blood, or skin. It afflicts women 
nine times more than it does men, and is three times more prevalent in 
women of color than Caucasian women. Lupus has its most significant 
impact on young women during their childbearing years (ages 15-44).
  Lupus patients from poor or rural areas often cannot access the level 
of specialty care required to manage such a varied and complex disease. 
When first presenting symptoms of the disease, lupus patients usually 
contact their family physician. It is not unusual for people to have 
lupus for three to five years and to visit up to five doctors before 
they receive a correct diagnosis. Unfortunately, medical schools do not 
provide family physicians with sufficient training to recognize lupus.
  I am sure that increased public awareness of the pervasiveness of 
lupus will substantially assist our efforts to increase funding not 
only for research, but also for the treatment and support services that 
the Congress authorized last November when It passed my lupus bill, 
H.R. 762, as part of the Public Health Improvement Act of 2000 (P.L. 
106-505). Passage of H.R. 762 was an important step in the fight 
against lupus, one of which I am extremely proud. But it is not enough. 
It is time to take the next step this year by funding the research, 
treatment and support services that the Congress authorized last year 
when it passed my lupus bill.
  Lupus affects multiple organ systems and can be an expensive disease 
to manage. Treatment requires the participation of many different 
medical specialists and expensive specialized testing and procedures. 
The average annual cost of medical treatment for a lupus patient is 
between $6,000 and $10,000. However, for some people with lupus, 
medical costs may exceed several thousand dollars every month. Lupus 
can be financially devastating for many families.
  It was these human factors that caused me to offer H.R. 762 and to 
work so hard for so many years with all of you for its passage. The 
case management and comprehensive treatment services that we authorized 
in H.R. 762 for individuals with lupus, and the support services that 
we authorized for their families, will be tremendously helpful, but 
only if we adequately fund them. We need a coordinated, targeted, well-
executed appropriations strategy to make the promise of these programs 
a reality.
  My lupus bill that the Congress passed last year authorizes 
appropriations of such funds as are necessary for FY 2001 through FY 
2003 for lupus research, education, and treatment, including a grant 
program to expand the availability of lupus services. It also empowers 
the Secretary of the Department of Health and Human Services to protect 
the poor and the uninsured from financial devastation by limiting 
charges to individuals receiving lupus services pursuant to the grant 
program, the way that we do under the Ryan White Care Act, should the 
Secretary deem it appropriate to adopt such limitations.
  H.R. 762 authorizes research to determine the reasons underlying the 
increased prevalence of lupus in women, including African-American 
women; basic research concerning the etiology and causes of the 
disease; epidemiological studies to address, among other things, the 
differences among the sexes and among racial and ethnic groups with 
respect to the frequency of the disease; the development of improved 
diagnostic techniques; clinical research for the development and 
evaluation of new treatments, including new biological agents; and 
information and education programs for health care professionals and 
the public.
  The bill also authorizes appropriations of such sums as are necessary 
for FY 2001 through FY 2003 for a grant program. This program would 
support a wide range of services for the diagnosis and disease 
management of lupus for lupus patients, as well as a broad range of 
support services for lupus patients and their families, including 
transportation services, attendant care, homemaker services, day or 
respite care, counseling on financial assistance and insurance, and 
other support services.
  I think it is appropriate during National Women's Health Week, that 
Congress fully fund research and treatment programs such as this.

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