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FinalCall.com News
Health & Fitness
Illinois congressmen fighting for sickle cell anemia dollars
By Saeed Shabazz -Staff Writer-
Updated Dec 1, 2009 - 8:32:10 AM
(FinalCall.com) - Congressman Danny K. Davis (D-Ill.) announced on Nov. 9 his run for re-election, and during his speech he mentioned that one of the pieces of legislation he is most proud of was the 2003 Sickle Cell Anemia Prevention & Treatment Act.
The congressman forgot to mention that he and fellow Illinois congressman, John Shimkus (R) were again leading the charge in the House of Representatives to have the act renewed and hopefully more money appropriated.
During a very brief phone conversation with The Final Call, Cong. Davis said that the original bill was “his bill” and it would expire at the end of 2009; so it was very important to get to work on getting the bill re-enacted. The legislation allows states to receive federal funding for patient counseling, education and out-reach centers in Black communities.
“Congressman Davis has been involved in the Sickle Cell issue for years, mostly because of his community activist background,” stated Kaleb Gilcrest, a health care aide working in the congressman's Washington, D.C. office.
Sickle Cell Disease is an inherited blood disorder that affects red blood cells that carry oxygen throughout the body. SCD can cause severe pain, strokes, skin ulcers and oxygen damage.
Anthony Clark, 46, of Zion, Ill. admits that he did not know he carried the Sickle Cell Trait until his son, Alec, now 13, fell gravely-ill when he was three years old. “The doctors told his mother and I, that we both had the trait, therefore, Alec had full-blown sickle cell; and his sister, just a year older also had the trait,” Mr. Clarke explained to The Final Call.
He said that he had to end up taking his son 40 miles away to a children's hospital in Wisconsin, because they had a nurse available for 24-hours, and a social worker. “There is nothing you can do, you just have to be prepared to deal with his attacks; of course we do everything we can to prevent them too,” Mr. Clarke said. He admitted that he did not know there was such a thing as the Sickle Cell Act, but he is glad to know that there is concern about the disease.
“My son is a life-long member of the sickle cell clinic, and we all go to the clinic once a year for a physical and a brain scan,” Mr. Clarke added.
Columbia Univ. Medical Center's department of pediatrics recently reported that more than 200 newborns a year in New York City are born with the sickle cell disease, while 5,300 are found to have the trait.
Dr. Lynette Jordan, M.D. works with the national Sickle Cell Disease Organization, and she says that there are three million Blacks with SCD in the U.S., and 70,000 with the trait. “There is a lot of outreach that needs to be done, that is why the re-enactment of the Sickle Cell Act is important,” Dr. Jordan explained to The Final Call.
“Sickle Cell Anemia is back on the front-burner,” exclaimed Washington, D.C. attorney and lobbyist, Anita Estell. “I am an advocate for Sickle Cell Anemia, and the time to act is now, she told The Final Call. “The federal act has never been fully funded, and now it is important that we get the resources to expand the effort to work in the community, and resources that would enable us to expand the scope of the legislation for the future,” Ms. Estell said.
Advocates and the bill's sponsors asked for $10 million to cover the five year period of the legislation, but Congress appropriated less then $5 million. According to Mr. Gilcrest, the House has requested $5.25 million, while the Senate plans to ask for $4.25 million for what he called the Sickle Cell Demonstration Project.
