|Children with thalassemia at a hospital in Viet Nam. — Photo phapluattp.vn
by Gia Loc
HCM CITY (VNS) — A 28-year-old woman from HCM City's Go Vap District who has an inherited blood disorder called thalassemia was reluctant to take her daughter to the hospital for a screening test, even though she knew about the inherent dangers associated with the disease.
"I can't afford to pay for treatments for my daughter, if she is diagnosed," the woman, who declined to give her name, said. Her youngest son was diagnosed with thalassemia during a routine hospital visit for a fever.
The woman is one of many parents with thalassemia who do not schedule screening tests for their children because of a lack of money, and in some cases, lack of awareness about the disease, according to Dr Phu Chi Dung, the hospital's head.
Speaking at a forum held last Sunday in HCM City by Blood Transfusion Haematology Hospital, he said that tests were needed to detect thalassemia, including a blood count, haemoglobin electrophoresis, and mutational analysis.
"If they have a severe form of the disease, they could develop serious complications such as heart, liver or thyroid failure," he said, adding that deaths from heart failure account for 50-70 per cent of all deaths from thalassemia.
Left untreated, the disease can affect both physical health and cognitive abilities.
Many parents in Viet Nam wait until their children show symptoms, such as paleness, frequent infections, and poor appetite, before taking them to the hospital for screening.
"The awareness of the disease among people is very low," Dung said, adding that when doctors ask family members to take blood tests, they often refuse to do so.
Dung said the government should set up a national programme to screen the population at high risk of developing the disease.
It is estimated that five million people in the country have the gene for thalassemia but are not aware of it.
If two people with thalassemia marry, the risk of the children inheriting the gene increases. If both parents have either thalassemia minor or intermedia, the children's risk of inheriting the gene is 50 per cent. There is a 25 per cent chance of not inheriting the gene at all, and a 25 per cent chance of developing thalassemia major, the severe form of the disease.
With thalassemia minor, patients do not have any symptoms. Patients with thalassemia minor and intermedia do not need blood transfusions, but they must be tested once a year.
Patients with the severe form of thalassemia, which has no cure, need regular blood transfusions to boost haemoglobin levels in the blood. Because the transfusions can lead to a build-up of iron and cause serious side effects, iron chelation tablets are taken daily to remove excess iron.
The only chance of a cure is a bone marrow transplant, but the cost is between US$25,000 and $30,000 and the risks of a graft rejection or even death, particularly among older patients, is considerable.
The optimal age for bone marrow transplants is between four and seven years old. For older patients, the success rate is only 50-60 per cent.
Some hospitals in Viet Nam have performed bone marrow transplants.
"It is very important to reduce new incidences by increasing screening before marriage and birth in order to reduce pressure on the health sector and family," he said.
If a foetus has the severe form of thalassemia, it should be aborted, he said.
Each year, there are 2,000 new incidences in the country. The Blood Transfusion and Haematology Hospital in HCM City alone diagnoses 1,000 cases a year.
"This has caused an overload at the hospital and pressure on blood banks, as well as high social costs," Dung said, adding that early screening and a course of treatment will help improve the quality of life.
To reduce overload at the Blood Transfusion Haematology Hospital, training courses on thalassemia treatment are organised by the hospital for doctors in provinces and city districts every year.
"When health facilities in provinces have qualified doctors and facilities for treatment of the disease, patients will not have to travel to the Blood Transfusion Haematology Hospital in HCM City," he said.
In HCM City, Binh Tan District Hospital's doctors can treat thalassemia minor and intermedia.
In the near future, Tan Phu, Thu Duc and District 2 hospitals in HCM City will also be able to offer the same treatment services. — VNS