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Sickle Cell Anemia: A Forgotten Disease?

Sickle cell anemia is an inherited blood disease that affects people of all races and cultures worldwide. But in the United States, it primarily affects African Americans and Hispanics. An estimated one in 500 African Americans suffer from what many call the forgotten disease. There are new efforts underway to increase awareness and funding for research.

A health documentary tonight on the Discovery Channel featuring US surgeon general David Satcher highlights sickle cell anemia and current efforts to increase awareness and funding for research into the disease.

The surgeon general has a PhD in genetics, and some of his first research was into the subject of sickle cell disease. He says he is excited about the prospects for cord blood transfusion in the future. He has expressed his views on the subject of racial disparity in healthcare before.

The disparity between diseases when it comes to federal funding does not surprise Satcher, who says that sickle cell disease has never had many chances. "Some diseases because of the people they affect and the lobby behind them certainly have gotten more funding than others," says Satcher. "I don't like to do battle among diseases. I think we ought to be concerned about all of them. But I believe what is needed in this country is more balance. We in this country have not yet developed a health system that meets the needs of all people and our health system leaves too many gaps--wide gaps--in terms of what's available to different people."

Satcher says he believes that genetic testing for the trait is important for people with a history of the disease in their family. There is a new infant-screening program for sickle cell, but unfortunately there are not enough resources to follow up later with the families to make sure education about the disease is carried through the generations.

Background Information on Sickle Cell Disease

More than 2 million people are healthy carriers of the gene that causes the disease. Sickle cell anemia is the most common genetic disease among African Americans and Hispanics in this country.

Sickle cell disease alters red blood cells, changing them from a round shape to a sickle shape. A person born with this gene from one parent has the trait. A person born with the tendency from both parents has the disease. About one in ten African Americans has the trait. About one in almost 200 Hispanics has the trait.

People with sickle cell disease live an average of 48 years. The problems occur when the abnormal red blood cells clog blood and oxygen flow. They result in low blood count, or anemia. Chronic pain, fatigue, headaches, seizure, heart attacks, and stroke may accompany it. Organ damage can occur from insufficient oxygen and nutrient delivery by the blood. The disease also causes respiratory attacks. There is no cure.

Stecell therapy using cord blood and gene therapy are the most promising new avenues of research when it comes to the search for a cure. Patients right now with advanced disease can undergo a bone marrow transplant, but only as a last resort because of the risk of rejection.

There is a genetic test available for sickle cell disease that can be used on embryos to determine whether or not a child will have the disease. Previously, parents would have to wait until the fetus was 10 weeks along in development. There is a 25% chance that a child will have sickle cell disease if both parents carry the trait.

Sickle cell disease does not get as much federal funding as other diseases. For example, cystic fibrosis--which affects only half as many people as sickle cell disease does--receives twice as much research money from the federal government. Sickle cell disease currently gets about $45 million a year.

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