[Congressional Record Volume 149, Number 136 (Tuesday, September 30, 2003)]
[House]
[Page H9003]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                  NATIONAL SICKLE CELL AWARENESS MONTH

  The SPEAKER pro tempore. Under a previous order of the House, the 
gentleman from Illinois (Mr. Davis) is recognized for 5 minutes.
  Mr. DAVIS of Illinois. Madam Speaker, I rise in recognition of 
National Sickle Cell Awareness Month. This inherited, debilitating 
blood disorder affects more than 2.5 million Americans, most of them of 
African heritage. In fact, it is the most common genetic disease in the 
United States. In my home State of Illinois, there are more than 3,000 
African Americans who live with sickle cell disease every day.
  Many adults with SCD have severe physical problems, such as acute 
lung complications, that may result in death. Moreover, there is an 
estimated 70,000 or more Americans who have SCD.

                              {time}  2015

  The average lifespan for an adult with sickle cell disease is the 
mid-40s. With proper treatment, many people with sickle cell anemia can 
lead productive lives and enjoy reasonably good health into their 40s 
and beyond.
  Sickle cell anemia can lead to a host of complications, including 
stroke, acute chest syndrome, organ damage, blindness and ulcers 
appearing on the lower legs. Sickle cells can also block blood vessels, 
which nourish the skin, causing cells to die.
  There are a number of treatments and prescriptions designed for this 
disorder, causing a 40 percent reduction in death. While bone marrow 
transplantation is a curative therapy for SCD, this therapy is used in 
only a minority of patients, predominantly because of the high risk of 
the procedure and difficulty in finding suitable donors. This surgery 
is painful, yet also traumatic.
  Unfortunately, this procedure is expensive. Many insurance carriers 
do not cover this expense; and sadly to say, many African Americans are 
less likely to donate bone marrow.
  Sickle cell patients and their families may need help in handling the 
economic and psychological stresses of coping with this serious chronic 
disease. Sickle cell centers and clinics can provide information and 
counseling on how to handle these problems.
  People who are planning to become parents should know whether they 
are carriers of the sickle cell gene; and if they are, they may want to 
seek genetic counseling. The counselor can tell prospective parents 
what the chances are that their child will have the sickle cell trait 
or sickle cell anemia.
  There is no cure for sickle cell disease. However, H.R. 1736, the 
Sickle Cell Treatment Act of 2003, which I introduced along with the 
gentleman from North Carolina (Mr. Burr), moves us closer to a cure and 
improves the quality of life for those living with the disease. H.R. 
1736 provides funding for sickle cell disease and related services, 
making it easier for doctors to treat SCD patients by increasing the 
availability of physician and laboratory services that are not 
currently reimbursed or under-reimbursed by Medicaid.
  In addition, the bill creates 40 sickle cell disease treatment 
centers through a $10 million grant program for 5 years. Another key 
component of the bill is that it allows States to receive a fifty-fifty 
funding match for nonmedical expenses related to sickle cell disease 
treatment, such as genetic counseling, community outreach, education 
and other services. In addition, H.R. 1736 creates a national 
coordinating center, operated by the U.S. Department of Health and 
Human Services, to oversee the SCD funding and research conducted at 
hospitals, universities and community-based organizations in a 
coordinated effort to educate patients and help find a cure for the 
disease.
  This legislation is about improving patient care and putting patients 
first. I hope that as we celebrate Sickle Cell awareness Month that we 
will also find a cure for this terrible disease. I urge support for 
H.R. 1736.

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