Blood Disease on the Rise Due to South Asian Migration
India West, News Report, Viji Sundaram, Posted: Jul 04, 2005
OAKLAND, Calif. - Indian and Pakistani immigrants in the San Francisco Bay Area have significantly increased the incidence of the inherited blood disorder called thalassemia, researchers said last week.
Of the 250 babies detected with the disease at Children's Hospital in Oakland over the last several months, four were of Indian descent, said Dr. Elliot Vichinsky, medical director of the National Cooley's Anaemia Foundation and director of the Thalassemia Center at Children's Hospital here. The hospital is the nation's foremost thalassemia care facility.
"Indians and Pakistanis are showing the most rapid growth in thalassemia, especially in Alameda County," Vichinsky told India-West, a day after Dr. Sujata Sinha, a hematopathologist from Varanasi, spoke at a seminar on thalassemia at Children's Hospital Oakland Research Institute, where Vichinsky was a slated speaker. "Many of the new cases we've seen are from those two groups."
Sinha works at the Varanasi-based Center for Diagnostic Hematology, which offers thalassemic screening, treatment and counselling.
Vichinsky believes that the increase is due to the large number of immigrants from South Asia and South-East Asia who have made the Bay Area their home.
The most common genetic blood disease in the world, thalassemia affects some 7 percent of the world's population worldwide. An estimated 3.9 percent of India's population, or 1 in 25 people, carries the gene for thalassemia, according to Sinha, with people in Punjab and Gujarat accounting for a good chunk of thalassemics.
In India, around 80 to 90 percent of the 10,000 babies born each year with the disease die from it.
The World Health Organization has predicted that one million people will have the disease there in the next 40 years.
Startling figures, but what is thalassemia?
People with the disease are unable to make enough hemoglobin, the pigment found in red blood cells, which results in severe anemia. Hemoglobin carries oxygen to all parts of the body. Insufficient hemoglobin in the red blood cells results in oxygen not reaching all parts of the body, causing them to malfunction.
Symptoms include stunted growth, loss of appetite, a pale skin color and irritability.
A person can carry a thalassemia gene and not even be aware of it because he or she can be perfectly healthy.
"In disease form it is serious, not in carrier form," observed Dr. Ashutosh Lal, a research scientist at CHORI, who hails from Chandigarh, where he earned his medical degree before immigrating to the U.S. "In the carrier form it is asymptomatic."
For the disease to be transmitted to the child, both parents have to be carriers, said Sinha, who had just finished a short training program at CHORI. When that happens, there's a 25 percent chance of their child being thalassemic.
Up until now, the most common treatment has been regular blood transfusions, or, in a small number of cases, bone marrow transplant, both very expensive procedures and inaccessible to many. In India, a single blood transfusion could cost as much as Rs.1,500, and there's always a shortage of good blood, Sinha said.
That aside, giving frequent blood transfusions can cause the excess iron to deposit in the organs, eventually damaging them, Vichinsky pointed out. However, there are medicines to purge the iron, but "they are expensive, around thousands of rupees per month," Lal told India-West.
CHORI is currently trying to develop treatment that won't require transfusions.
Unlike in the U.S., where early comprehensive treatment has changed thalassemia from a fatal pediatric disease to one in which patients can live long productive lives throughout adulthood, in India few thalassemic babies make it for longer than a few months.
"Babies die very young and people don't know why," Vichinsky said, adding, "I have patients who are 60 years old who have survived on transfusions and medicines to get the excess iron out of their bodies."
CHORI offers educational programs to prospective parents carrying the thalassemic gene so they can decide whether to terminate the pregnancy or carry it through to term. It also does pre-marriage screening programs.
"We don't want to wait until after the child is born with thalassemia," Vichinsky said.
He is urging South Asians to avail of the pre-marriage screening programs. He said he would also like to see community leaders get involved in CHORI's outreach programs.
Vichinsky said CHORI is looking into the possibility of setting up collaborative projects with India to check the disease. One such project has already been set up in Sri Lanka, with help from Canada and England.
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