Blood disease burdens poor
by Thanh Hai
HA NOI — Pham Thi Cam Ha, 22, from Hai Duong Province has been condemned to a life of blood transfusions due to a blood disorder she was born with, yet she is one of the lucky ones.
Ha, who was born with severe thalassemia – a potentially fatal genetic blood disorder that results in anaemia, stunted growth and in some cases damage to the liver, heart and other major organs – was fortunate to be diagnosed with the crippling disease by doctors from the National Institute of Haematology and Blood Transfusion when she was four years old.
Severe thalassemia – which is prevalent in the Mediterranean, the Middle East, South Asia and Africa – results in the body making an abnormal form of haemoglobin, the protein in red blood cells that carries oxygen – leading to anaemia.
Since being diagnosed with the disease, Ha was forced to have monthly blood transfusions, which she will have to undergo for the rest of her life unless she receives a costly bone marrow transplant.
"Thalassemia patients like me face many difficulties and we are reliant on other people's blood to stay alive," Ha said.
Ha has to travel from Hai Duong to Ha Noi each month for a blood transfusion, which last about a week. The treatment costs US$100-250 monthly.
"Most thalassemia patients are poor and do not have enough money for regular medicine and blood transfusions," she said.
Because of the condition, sufferers find it difficult to hold down a job, which makes it even more difficult to pay the treatment costs.
"Thalassemia severely affects the person's health; it impairs memory and makes it difficult to concentrate. That makes it very difficult to study or do demanding work," she said.
And because those with severe thalassemia have to spend a great deal of time in hospital, finding a job is near impossible.
Ha is among an estimated 20,000 people living with thalassemia in Viet Nam. Of those, just 10 per cent receive medical treatment because there is no national screening programme.
Those with acute thalassemia who don't receive regular blood transfusions will die.
Medical experts said blood transfusions and drugs to avoid iron overload were necessary for survival, but the treatment is long, expensive and complicated.
There is a high incidence of thalassemia, both acute and minor, in ethnic groups such as the E De (40 per cent), Thai, Cham (25 per cent) and Muong (20 per cent), while it is estimated that just 2-4 per cent of Kinh have the disease.
Doctor Duong Ba Truc, from the National Paediatrics Hospital, said at a workshop in the capital yesterday that only a few medical centres in Ha Noi and HCM City have the facilities to detect thalassemia.
As a result, Truc estimates that about 90 per cent of the country's thalassemia cases go undetected.
Truc said the Paediatrics Hospital typically treated between 150-200 children with thalassemia each year. He said if it was detected early, the infant could be treated with stem cells. He added that five patients had successfully undergone bone marrow transplants, the tissue being donated by their brothers. However, the cost of the operation was about $25,000.
"The blood donation programme needs to be improved to boost resources," Truc added.
Medical experts said it was vital that those suffering from symptoms such as fatigue, anaemia, malnutrition, dizziness or an enlarged spleen be tested for thalassemia.
He also said that couples, who have relatives with thalassemia, be tested for the disease.
In the meantime, life goes on for Ha, who is resigned to her fate, but hopeful that one day she will be freed from the need to have regular blood transfusions.
"I live at hospital longer than living at home. But still I try to be optimistic and enjoy life." — VNS