[Congressional Record (Bound Edition), Volume 155 (2009), Part 17]
[House]
[Pages 22837-22840]
[From the U.S. Government Publishing Office, www.gpo.gov]




                  SICKLE CELL DISEASE AWARENESS MONTH

  Mr. LYNCH. Mr. Speaker, I move to suspend the rules and agree to the 
concurrent resolution (H. Con. Res. 186) supporting the goals and 
ideals of Sickle Cell Disease Awareness Month.
  The Clerk read the title of the concurrent resolution.
  The text of the concurrent resolution is as follows:

                            H. Con. Res. 186

       Whereas Sickle Cell Disease is an inherited blood disorder 
     that is a major health problem in the United States and 
     worldwide;
       Whereas Sickle Cell Disease causes the rapid destruction of 
     sickle cells, which results in multiple medical 
     complications, including anemia, jaundice, gallstones,

[[Page 22838]]

     strokes, and restricted blood flow, damaging tissue in the 
     liver, spleen, and kidneys, and death;
       Whereas Sickle Cell Disease causes episodes of considerable 
     pain in one's arms, legs, chest, and abdomen;
       Whereas Sickle Cell Disease affects an estimated 70,000 to 
     100,000 Americans;
       Whereas approximately 1,000 babies are born with Sickle 
     Cell Disease each year in the United States, with the disease 
     occurring in approximately 1 in 500 newborn African-American 
     infants, 1 in 1,000 newborn Hispanic-Americans, and is found 
     in persons of Greek, Italian, East Indian, Saudi Arabian, 
     Asian, Syrian, Turkish, Cypriot, Sicilian, and Caucasian 
     origin;
       Whereas more than 2,000,000 Americans have the sickle cell 
     trait, and 1 in 12 African-Americans carry the trait;
       Whereas there is a 1 in 4 chance that a child born to 
     parents who both have the sickle cell trait will have the 
     disease;
       Whereas the life expectancy of a person with Sickle Cell 
     Disease is severely limited, with an average life span for an 
     adult being 45 years;
       Whereas, though researchers have yet to identify a cure for 
     this painful disease, advances in treating the associated 
     complications have occurred;
       Whereas researchers are hopeful that in less than two 
     decades, Sickle Cell Disease may join the ranks of chronic 
     illnesses that, when properly treated, do not interfere with 
     the activity, growth, or mental development of affected 
     children;
       Whereas Congress recognizes the importance of researching, 
     preventing, and treating Sickle Cell Disease by authorizing 
     treatment centers to provide medical intervention, education, 
     and other services and by permitting the Medicaid program to 
     cover some primary and secondary preventative medical 
     strategies for children and adults with Sickle Cell Disease;
       Whereas the Sickle Cell Disease Association of America, 
     Inc. remains the preeminent advocacy organization that serves 
     the sickle cell community by focusing its efforts on public 
     policy, research funding, patient services, public awareness, 
     and education related to developing effective treatments and 
     a cure for Sickle Cell Disease; and
       Whereas the Sickle Cell Disease Association of America, 
     Inc. has requested that the Congress designate September as 
     Sickle Cell Disease Awareness Month in order to educate 
     communities across the Nation about sickle cell and the need 
     for research funding, early detection methods, effective 
     treatments, and prevention programs: Now, therefore, be it
       Resolved by the House of Representatives (the Senate 
     concurring), That the Congress supports the goals and ideals 
     of Sickle Cell Disease Awareness Month.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Massachusetts (Mr. Lynch) and the gentleman from Ohio (Mr. Turner) each 
will control 20 minutes.
  The Chair recognizes the gentleman from Massachusetts.


                             General Leave

  Mr. LYNCH. Mr. Speaker, I ask unanimous consent that all Members may 
have 5 legislative days within which to revise and extend their 
remarks.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Massachusetts?
  There was no objection.
  Mr. LYNCH. I yield myself such time as I may consume.
  Mr. Speaker, on behalf of the Oversight and Government Reform 
Committee, I'm proud to present House Concurrent Resolution 186 for 
consideration. This legislation expresses our support for the goals and 
ideals of Sickle Cell Disease Awareness Month.
  The measure before us was introduced on September 16, 2009, by my 
colleague and good friend, Representative Danny Davis of Illinois, and 
favorably reported out of the Oversight Committee on September 24, 
2009, by unanimous consent. In addition, this measure enjoys the 
support of over 70 Members of Congress, and I am proud to say that I am 
also an original cosponsor.
  Mr. Speaker, House Concurrent Resolution 186 highlights the 
importance of Sickle Cell Disease Awareness Month. Sickle cell disease 
is an inherited blood disorder that predominantly affects people of 
sub-Saharan African ancestry. Today, an estimated 70,000 to 100,000 
Americans suffer from this disease, and nearly 1 in 500 African 
American newborns is born with sickle cell.
  Individuals with sickle cell have red blood cells that assume a rigid 
sickle shape. When these blood cells travel through small blood 
vessels, they often become stuck and clog blood flow. This causes 
repeated episodes of severe pain, organ damage, serious infections, 
and/or anemia.
  Tragically, the life expectancy of those with sickle cell is also 
greatly reduced--42 years for males and 48 years for females. In 
Africa, more than 90 percent of children with sickle cell die before 
the illness is even diagnosed.
  There is no cure for this illness; although, with careful 
supervision, individuals with sickle cell can live full and healthy 
lives. Treatment today is primarily aimed at avoiding crises, relieving 
symptoms, and preventing complications.
  Despite its prevalence and seriousness, little is known publicly 
about sickle cell disease. For this reason, Sickle Cell Disease 
Awareness Month presents a valuable opportunity to increase public 
understanding of this illness and to work collectively to find a cure 
for sickle cell.
  In closing, I wholeheartedly support this measure and encourage all 
my colleagues to join myself and Representative Danny Davis of Illinois 
in voting in favor of House Concurrent Resolution 186.
  I reserve the balance of my time.
  Mr. TURNER. I yield myself such time as I may consume.
  This resolution seeks to bring attention to sickle cell disease and 
to support the designation of September as Sickle Cell Awareness Month.
  Sickle cell disease, SCD, is a deadly genetic blood disorder that 
strikes, primarily, persons of African descent. Those affected by the 
disease most often appear to be healthy, but their lives are disturbed 
by sporadic and painful attacks in their arms, legs, chest, and 
abdomen.
  SCD also causes the rapid destruction of sickle cells that results in 
multiple medical complications, including anemia, jaundice, gallstones, 
strokes, and restricted blood flow, causing tissue damage, 
cardiovascular, and organ damage. Approximately 80,000 African 
Americans suffer from sickle cell disease, and millions are affected 
worldwide.
  Statistics shockingly show that 1 in every 350 African American 
babies born in the United States has the disease. One in eight African 
American babies carry the sickle cell trait. There is a one in four 
chance that a child born to parents who both carry the sickle cell 
trait will have the disease. Life expectancy is limited, as an average 
lifespan for an adult with the disease is only 45 years old.
  A universal cure, though, remains elusive. However, early diagnosis 
through newborn screening and education has improved survival and 
quality of life for those who suffer from SCD. Because SCD affects so 
many people and research funding is critical to effectively treating 
and ultimately to preventing the disease, we are grateful for 
organizations such as the Sickle Cell Disease Association of America 
that continues to shine the light of hope for all of those who are 
affected.
  Therefore, I ask my colleagues to join me in supporting the 
designation of the month of September as National Sickle Cell Disease 
Awareness Month so that communities throughout the country will become 
aware of this disease and the need for additional research, effective 
treatments, and prevention programs that will ultimately lead to a 
cure.
  I reserve the balance of my time.
  Mr. LYNCH. Mr. Speaker, I don't have any further speakers on this 
matter, but I continue to reserve the balance of my time.
  Mr. TURNER. Mr. Speaker, I urge all Members to support the passage of 
H. Con. Res. 186, and I yield back the balance of my time.
  Mr. LYNCH. I thank my colleague, and I also urge all of our friends 
on both sides of the aisle to join with Congressman Danny Davis, who's 
the lead sponsor of this measure, to support the ideals and goals of 
Sickle Cell Disease Awareness Month by voting for House Concurrent 
Resolution 186.
  Ms. JACKSON-LEE of Texas. Mr. Speaker, I stand before you today in 
strong support of H. Con. Res. 186, ``Supporting the goals and ideals 
of Sickle Cell Disease Awareness Month.'' Sickle Cell Anemia affects an 
estimated 70,000 to 100,000 Americans. Every year 1,000 babies are born 
with Sickle Cell Disease in the United States, with the disease 
occurring in approximately 1 in 500 newborn

[[Page 22839]]

African-American infants. We must educate the public and shed light on 
this disease, especially considering that there is a 1 in 4 chance that 
a child born to parents who both have the sickle cell trait will have 
the disease.
  Sickle Cell Anemia is an inherited blood disorder that is a major 
health problem in the United States and worldwide. It not only affects 
African Americans, but Hispanics and persons of Greek, Italian, East 
Indian, Saudi Arabian, Asian, Syrian, Turkish, Cypriot, Sicilian, and 
Caucasian origin.
  Sickle Cell Disease causes the rapid destruction of sickle cells, 
which results in multiple medical complications such as: pain episodes, 
strokes, increased infections, leg ulcers, bone damage, yellow eyes or 
jaundice, early gallstones, lung blockage, kidney damage and loss of 
body water in urine, priapism, blood blockage in the spleen or liver 
(sequestration), eye damage, anemia, delayed growth and even death.
  Although it cannot be cured, effective treatment is available for 
persons with sickle cell disease. The trait and the disease are 
inherited. The most important thing one can do is to make sure to get 
tested. More than 2,000,000 Americans have the sickle cell trait, and 1 
in 12 African-Americans carry the trait.
  Although researchers have not yet identified a cure for this painful 
disease, advances in treating the associated complications have 
occurred. Once almost exclusively a pediatric illness, research has 
resulted in early detection and improvements in treatment that have 
extended life expectancy from the 20s to the mid-40s for many patients. 
Although the life expectancy of a person with Sickle Cell Disease is 
severely limited, researchers are hopeful that in less than two 
decades, Sickle Cell Disease may join the ranks of chronic illnesses 
that, when properly treated, do not interfere with the activity, 
growth, or mental development of affected children.
  I am glad to be able to recognize the Texas Children's Sickle Cell 
Center for serving over 900 children in the state of Texas and having 
one of the largest educational programs in the country. The Texas 
Children's Sickle Cell Center offers comprehensive family-centered care 
for children with sickle cell disease. The center provides treatment 
for all aspects of sickle cell disease, offering patient care, 
education, screening and counseling for afflicted patients and their 
families. The Sickle Cell Center offers access to new drug therapies 
for sickle cell disease and its complications. The staff works closely 
with the neuropsychology, neuroradiology, cardiology and pulmonary 
departments in order to better understand the pathophysiology and to 
develop treatment options. I believe we need more facilities like the 
Texas Children's Sickle Cell Center in order to not only treat those 
with the disease, but offer services and educational programs to the 
family as well.
  Mr. Speaker, I urge my colleagues in this Congress to recognize the 
importance of researching, preventing, and treating Sickle Cell Disease 
by authorizing treatment centers to provide medical intervention, 
education, and other services and by permitting the Medicaid program to 
cover some primary and secondary preventative medical strategies for 
children and adults with Sickle Cell Disease. Furthermore, I hope that 
my colleagues will support designating September as Sickle Cell Disease 
Awareness Month in order to educate communities across the Nation about 
sickle cell and the need for research funding, early detection methods, 
effective treatments, and prevention programs.
  Ms. RICHARDSON. Mr. Speaker, I rise today in strong support of H. 
Con. Res. 186, ``Supporting the goals and ideals of Sickle Cell Disease 
Awareness Month.''
  Sickle cell disease is an inherited blood disorder that affects 
nearly 100,000 Americans. This disease causes red blood cells to mutate 
and deliver less oxygen to the body. Numerous medical complications 
result including bone pain, fatigue, fever, jaundice, chest pain, rapid 
heart rate and ulcers. Most people afflicted with the disease also 
suffer painful episodes called vaso-occlusive crises, which vary in 
frequency and severity. Ultimately, this disease limits a person's 
average life span to just 45 years.
  In the United States, while 1 in 1,000 infants are born with the 
disease, the rate of disease for African-American infants is 1 in 500. 
The sickle cell disease gene is carried by 2,000,000 Americans, yet 
this number is 1 in 12 within the African-American community. If both 
parents of a child have sickle cell, there is a 1 in 4 chance that 
their child will inherit the disease. Millions of people world-wide 
suffer from sickle cell disease, and those of African and Caribbean 
ancestry are primarily affected.
  Despite these devastating statistics, a cure has not been found. 
Researchers are hopeful that if sickle cell disease is properly treated 
and diagnosed early, it will not interfere with the growth and mental 
development of afflicted children. Educating our communities about this 
disease will enable researchers and advocacy organizations to develop 
effective treatments and ultimately a cure.
  I thank Congressman Danny K. Davis for introducing this legislation 
and look forward to working with my colleagues to raise awareness of 
sickle cell disease.
  Mr. JOHNSON of Georgia. Mr. Speaker, I rise today in support of H. 
Con. Res. 186, Supporting the Goals and Ideals of Sickle Cell Disease 
Awareness Month. Mr. Speaker, the State of Georgia has over 7,000 
individuals, from diverse backgrounds, many of whom are my constituents 
living in DeKalb County, living with sickle cell anemia. I have 
tirelessly advocated on their behalf to support the Georgia 
Comprehensive sickle cell center, which is located at nearby Grady 
Hospital. While sickle cell anemia is found in more diagnosed at a 
higher rate among African Americans and Latinos, it has also found 
among people of Greek, Turkish, and Saudi Arabian descent. I strongly 
support H. Con. Res. 186 and I urge my colleagues to support this 
important resolution.
  Sickle cell anemia is a major health problem that affects millions of 
people worldwide. More than 70,000 people in the United States have 
inherited sickle cell anemia, while more than 2 million carry the 
sickle cell trait, including 1 in 12 African-Americans. There is a 25 
percent chance that parents carrying the Sickle Cell trait will pass 
the disease onto a child. This chronic disease deserves our attention 
and I applaud the efforts of this Congress to ensure that mire is done.
  While there is no widely available cure, the goal of sickle cell 
disease management is to alleviate the painful symptoms associated with 
the disease, including gallstones, strokes, tissue, liver, and spleen 
damage. There has been a glimmer of hope for a small number of those 
infected; bone marrow transplants have proven to be a successful 
treatment for the disease. Over the past 30 years, advances in advocacy 
and awareness, and improvements in medicine have led to increases in 
early diagnoses, improved disease management, and longer life spans for 
individuals diagnosed with sickle cell anemia.
  It is my hope that in the near future, we can develop a cure for this 
chronic illness, and ensure that people living with Sickle Cell Anemia 
live full, productive lives.
  Ms. EDDIE BERNICE JOHNSON of Texas. Mr. Speaker, I rise today in 
support of House Concurrent Resolution 186 to recognize the goals and 
ideals of Sickle Cell Disease Awareness Month.
  As we all know, sickle cell disease is a genetic blood disorder that 
affects tens of thousands of individuals here in the United States and 
countless others across the globe. Within our country, it is 
particularly prevalent in the African-American community, and I believe 
we must continue to fight and research this disease in order to create 
a happier and healthier life for those who suffer from it, both at home 
and abroad.
  In my district in Dallas, we are doing extraordinary things to combat 
sickle cell disease. At the UT Southwestern Medical Center, we have one 
of the leading research groups that studies this disease, and in recent 
years they have accomplished numerous breakthroughs in sickle cell 
research. Under the leadership of Dr. George Buchanon, the Sickle Cell 
Center has recently published an important paper which clarifies how to 
predict the severity of sickle cell disease in young people much more 
accurately than previously accepted predictors. Additionally, the 
center has developed a clinic that caters specifically to adult 
patients who are now living with the disease well into adulthood. These 
advances in sickle cell research are crucial blocks in the foundation 
of our understanding of this painful and destructive disease.
  I applaud the goals and ideals of Sickle Cell Disease Awareness 
Month, and I encourage my colleagues to join me and support this 
resolution to educate people about the need for early detection 
methods, effective treatments, and research funding for sickle cell 
disease.
  Mr. LYNCH. I yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Massachusetts (Mr. Lynch) that the House suspend the 
rules and agree to the concurrent resolution, H. Con. Res. 186.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the concurrent resolution was agreed to.
  A motion to reconsider was laid on the table.

[[Page 22840]]



                          ____________________