[Congressional Record (Bound Edition), Volume 150 (2004), Part 2]
[Senate]
[Pages 2260-2262]
[From the U.S. Government Publishing Office, www.gpo.gov]




 HONORING BLACK HISTORY MONTH: SUPPORTING THE SICKLE CELL TREATMENT ACT

  Mr. TALENT. Mr. President, I rise today to honor Black History Month 
by supporting the Sickle Cell Treatment Act, which is S. 874, and 
inviting my colleagues to join me and my chief cosponsor, Senator 
Schumer, in doing the same. I am very pleased we now have over 40 
bipartisan cosponsors in the Senate for this bill. We certainly would 
welcome more. I invite our colleagues to look carefully at this act and 
to support it. It is an important measure. It deals with a disease that 
afflicts many hundreds of thousands of Americans

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and a disease that really has not received enough attention and enough 
visibility in the last few years.
  This bipartisan, bicameral legislation is designed to treat and find 
a comprehensive cure for sickle cell disease which is a genetic disease 
which primarily affects but not exclusively African Americans. About 1 
in 300 newborn African-American infants is born with this disease, but 
the disease also affects people of Hispanic, Mediterranean, and Middle 
Eastern ancestry, as well as Caucasians.
  More than 2.5 million Americans, mostly but again not exclusively 
African Americans, have the sickle cell trait, which is not the same as 
having the disease.
  Why focus on sickle cell disease? Because it is the most common 
genetic disease that is screened in American newborns. People with the 
disease have red blood cells that contain an abnormal type of 
hemoglobin. These cells have a sickle shape, hence the name of the 
disease, that makes it difficult for the cells to pass through small 
blood vessels or carry the appropriate amount of oxygen or nutrients or 
antibiotics, if that has been prescribed. The tissue that does not 
receive normal blood flow because of the disease eventually becomes 
damaged and can and often does cause potentially life-threatening 
complications.
  Stroke in particular is the most feared complication for children 
with sickle cell disease. It may affect infants as young as 18 months. 
I have personally talked with a number of parents whose children have 
had strokes as toddlers. One of the difficulties with this disease is 
recognizing it--and I will talk about that in just a minute--
recognizing its symptoms. Young children can have strokes without the 
parents even realizing it for some time.
  While some patients live without symptoms for years, many others do 
not survive infancy or early childhood.
  I became involved with this effort because of an African-American 
doctor from St. Louis, Dr. Michael DeBaun, who treats children with 
sickle cell disease. When you meet the practitioners who specialize in 
treating people who have this disease, you meet a series of American 
heroes. Dr. DeBaun is one of them. After meeting and visiting with him 
about a year ago, I realized the hardship this disease puts on families 
and especially on the children, who often have to receive blood 
transfusion after blood transfusion in order to avoid strokes. And, 
yes, in order to stay alive.
  About one-third of children with sickle cell disease suffer a stroke 
before age 18. These children require frequent blood transfusions, 
sometimes 15 to 25 units of blood a year, to prevent subsequent 
strokes.
  If you study the disease, you will also learn firsthand how it can 
affect the daily lives of children. I will just use one example, 9-
year-old Isaac Cornell, whom I also had the privilege of meeting. He is 
one of Dr. DeBaun's patients and attends fourth grade at Gateway 
Elementary School in St. Louis. About four times a year, Isaac misses 
school because of severe episodes of pain, with each episode lasting 
about 5 to 7 days. Every 4 weeks Isaac has to go for a blood 
transfusion at St. Louis Children's Hospital where he's treated by Dr. 
DeBaun. Isaac has a permanent port installed in his upper chest to 
allow for the transfusions. That is one of the reasons he cannot play 
contact sports or join the wrestling team.
  Sickle cell disease affects Isaac's decisions every day. He has to 
drink plenty of water to lubricate his cells, he has to be careful not 
to overexert himself--and that is certainly difficult for a 9-year-old 
boy--and he has to be careful to get plenty of rest. Because so many 
patients like Isaac are struggling with this disease, in April of 2003, 
Senator Schumer and I introduced the Sickle Cell Treatment Act. Our 
friends, Representatives Danny Davis and Richard Burr, introduced a 
companion bill, H.R. 1736, in the House, which now has 39 bipartisan 
cosponsors.
  S. 874, which is the bill Senator Schumer and I introduced, has 41 
bipartisan cosponsors as well as the support of dozens of prominent 
African-American children's and health advocates, as well as union and 
church groups including--I am going to read the list. This is not a 
complete list, but it includes the Congressional Black Caucus, the 
Sickle Cell Disease Association of America, the American Medical 
Association, the National Association of Children's Hospitals, the 
National Association of Community Health Centers, the NAACP, the 
Children's Defense Fund, the Health Care Leadership Council, United 
Food & Commercial Workers Union--Minority Coalition, the UFCW Faces of 
Our Children, United Church of Christ, and National Baptist U.S.A. 
These advocates, as well as the others who support this legislation, 
know the bill will make a difference in the lives of kids and families 
who are struggling with sickle cell disease.
  I want to outline four key ways in which the bill makes a difference. 
First, it increases access to affordable, quality health care. The 
provision provides funding to currently eligible Medicaid recipients 
for physician and laboratory services targeted to sickle cell disease 
that are not currently reimbursed or are underreimbursed by Medicaid. 
Importantly, however, the bill does not increase the number of Medicaid 
eligibles and the Federal Medicaid match will stay the same. We have 
structured this bill so it is very affordable.
  The bill also enhances services available to sickle cell disease 
patients. This is a crucial aspect of the bill. When you have this 
disease, you have to stay on top of it. You have to manage this 
disease. I mentioned Isaac Cornell before, how he drinks water and gets 
adequate rest and is careful not to overexert himself. You also have to 
know the various respects in which the symptoms of the disease can show 
up. This is a tricky, sneaky disease.
  I was talking with another parent whose son was having considerable 
dental problems. This is something people with this disease struggle 
with, because when they get periodontal disease and some form of 
antibiotic is prescribed by their dentist, they can't be certain the 
red blood cells will carry the antibiotic to the infected point, so 
indeed any infections they have are particularly dangerous.
  Obviously there is a whole medical side to this we have to be aware 
of, but in addition, people need to know about the disease. They need 
to receive counseling and education as well as screening, genetic 
counseling, community outreach. Education and other services are 
crucial. Currently, those kinds of services are not reimbursed under 
Medicaid unless they are performed by the physicians such as Dr. 
DeBaun. Dr. DeBaun simply does not have the time, certainly not as much 
as he would want to spend, the hours and hours he would need to spend 
with each set of parents, with each patient, in order to go over all 
the various ways in which this disease can affect their lives.
  So it is important that Medicaid reimburse these services, even if 
they are done by counselors or outreach personnel who are not 
physicians. They are perfectly appropriate and able to do it. The bill 
would allow nonmedical personnel such as counselors to spend time with 
sickle cell disease families to discuss how they can manage the 
disease. That, by the way, will end up saving the Government money 
because it will prevent strokes and other serious episodes that then 
Medicaid does appropriately reimburse.
  The bill creates 40 sickle cell disease treatment centers. This 
provision of the bill authorizes the Department of Health and Human 
Services to distribute grants to up to 40 eligible community health 
centers nationwide for $10 million for the next 5 fiscal years for a 
total of $50 million. That is subject to appropriation. That could mean 
a health center grant in almost every State. Grant money may be used 
for purposes including the education, treatment, and continuity of care 
for sickle cell disease patients and for training health professionals.
  Finally, the bill establishes a sickle cell disease research 
headquarters. This provision of the bill creates a national 
coordinating center, which also would be operated by the Department of 
Health and Human Services, to coordinate and oversee sickle cell 
disease funding and research conducted at hospitals, universities, and 
community-

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based organizations. This will help ensure efficiency so we can share 
information about the disease, accountability to make sure the 
taxpayers' dollars are being used well, and also help us get best 
practices and monitor outcomes for the disease so we can improve 
services to people who have it around the country.
  I cannot overemphasize the outpouring of support Senator Schumer and 
I have received for this bill. I am sure if he were here he would 
relate the stories he has had. I have myself received personal 
handwritten letters from sickle cell disease patients who expressed 
their gratitude for this legislation and who asked what they can do to 
help pass the bill since they know how many families it will help.
  For example, Allyce Renee Ford of Blue Springs, MO, wrote, and I will 
paraphrase: I was pleased to read of your bill to increase funding for 
treatment of sickle cell disease. My twin sons were born with sickle 
sell in 1973 and suffered from this debilitating disease all their 
lives. They both lost the battle to painful complications in 2002. 
Please believe me, it is a painful life-constricting disease both for 
the victims and their families. Even though I do not have any other 
children to lose to the disease, I mourn for all the other parents who 
will lose their children in the future--today, tomorrow, someday they 
will lose them. Thank God there will be help for sickle cell disease 
victims--help not just in the form of additional funding--and the bill 
is very affordable--but help in the form of greater visibility, 
community support. This bill is lifting the profile of this disease 
which has remained in the corner for too long. The business exclusively 
in the past has been the business of those struggling and the small 
community helping them. We need to show these people that the country 
is with them.
  In conclusion, it is critical to help this historically underserved 
population. Many of these people do not even know they carry the trait 
or they have the disease until consequences have been visited upon them 
that they could have lessened or mitigated in some respect had they had 
prior knowledge.
  I ask my colleagues to join me and Senator Schumer to honor Black 
History Month by cosponsoring this Sickle Cell Disease Treatment Act. I 
cannot think of a better way to honor this month than to help all of 
the families, most of whom are African-American families, who are 
living and struggling with this disease.
  I yield the floor.
  The PRESIDING OFFICER. The majority leader.

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