Children with hemophilia play at the National Institute of Hematology and Blood Transfusion in Hà Nội. — Photo NIHBT
HCM CITY — A national programme for comprehensive care of hemophilia, a hereditary blood disorder, is needed, according to Dr Phù Chí Dũng, head of HCM City Blood Transfusion Hematology Hospital.
The programme would help provide fund for surveillance, prevention and treatment to patients with hemophilia.
Dũng spoke at a roundtable meeting on policies and new treatment guidelines for hemophilia held by the hospital in co-operation with the city’s Department of Health.
The meeting was held under the sponsorship of Shire, a biotechnology company that focuses on rare diseases and other highly specialised conditions.
The country has a total of 6,000 patients with hemophilia, but only 2,373 of them receive treatment, Dũng said, adding that 717 out of 2,000 people with the disorder in the southern region receive treatment.
Most of the 717 patients are treated at the Blood Transfusion Hematology Hospital (BTH), two paediatrics hospitals or Chợ Rẫy Hospital.
“Most doctors trained in hematology at provincial hospitals do not work in the field because these hospitals do not have wards to treat diseases related to blood disorders, including hemophilia,” Dũng said.
In addition, recombinant clotting products and others needed for treatment are not available at these hospitals.
“Patients with hemophilia come to our hospital for treatment when they have complications such as joint damage, causing repeated bleeding,” he said.
Dũng said these complications could be prevented if patients received medicine.
He said the city’s Department of Health and Social Insurance Agency should ask the Ministry of Health for coverage of treatment to prevent complications as well as coverage for treatment at patients’ homes or at health centres where they live.
Dr Nguyễn Phương Liên, head of the hospital’s general planning division, said that treatment costs for the blood disorder were high, from VNĐ2 million to VNĐ5 million (US$88.9). However, this figure does not include insurance coverage which accounts for 80 per cent of the total costs. — VNS