There has been a quiet revolution in the treatment of sickle cell anemia thanks to a 10-year federal effort to ameliorate this often cruelly disabling disease.
No cure or magic bullet has been discovered to abolish the ailment, a common scourge of blacks.
But there has been a remarkable improvement in care and lives saved, doctors told the American Association for the Advancement of Science yesterday.
New scientific knowledge, much of it at the National Institutes of Health, could help lead to some future cures.
Sickle cell anemia is a disease in which the hemoglobin, the red, oxygen-carrying part of the blood, is abnormal. It tends to clump or become rigid, causing severe pain and gradually damaging vital organs.
Blacks are not the only ones subject to the disease. It is found in many Mediterranean populations, including Greeks and Italians, and in Puerto Ricans.
But approximately one black in 10, said the NIH doctors, carries the sickle "trait" in the genes.
Sickle trait is not sickle disease, but when two persons with the trait bear a child, there is one chance in four that the child will have the disease, sometimes mildly, sometimes severely.
Ten years ago, said Drs. Clarice Reid and Marilyn Gascon of NIH, many doctors did not know how to recognize or treat sickle disease. Most of the public had never heard of it.
Sickle "crises" or onsets of sudden pain caused panic in patients and their families, and some doctors wrongly said that no one with the disease lived past age 20.
There might indeed have been few survivals into late years.
But today, reported Gascon, many patients are alive in their 30s and 40s and "great progress" has been made in saving lives during the most crucial years, from birth to age 5.
"What happens," she said, "is that these children get the usual childhood infections, but in their cases infection can be devastating.
"Mortality can be a horrendous 50 per cent.
"Sometimes death can occur within 12 hours after symptoms begin."
The difference today, she reported, is that more children are diagnosed earlier.
Parents and doctors are more alert to the problem.
The infected child may quickly be given antibiotics, fluids and other intensive care--and survive.
Then throughout life, she said, medical care is "immeasurably better," and there are many specialized treatment centers, including Howard University here.
NIH has started a national cooperative study of 3,535 patients of all ages at 23 centers, including Howard, George Washington University and Children's Hospital here.
One new tool to help prospective parents is amniocentesis, removal of fetal cells from the amniotic fluid of the pregnant woman to see if the child will have the disease.
Such analysis now can use sophisticated genetic engineering techniques developed by Dr. Y. W. Kan of the University of California at San Francisco.
If a fetus is affected, Kan said, genetic counselors "will only give the parents information about the disease" and tell them there is no way of knowing whether it will be mild or severe.
Some parents he said, may choose to abort that fetus and "try again."