VietNamNet Bridge – About 90 per cent of Vietnamese children with brittle-bone disease don't receive regular treatment, resulting in bone deformities, disabilities and even death.
However, adults with the disease are given financial support to buy medicine to make their bones less brittle.
A health officer instructs parents how to care for children with brittle-bone disease. (Photo: VNS)
Hoang Trong Tung, a seven-year-old boy who cannot sit or walk, has been hospitalised with broken bones many times.
Born with a severe case of brittle-bone disease known as osteogenesis imperfecta, Tung has twisted hands and legs and a deformed chest.
Every time doctors check the breaks, the boy bursts into loud cries of pain.
Tung's grandmother sheds tears every time he screams. She looks after him all the time, but his bones keep breaking.
Now he can do nothing but lie in bed all day.
"His parents have to work far away from home to get money for his treatment. I only wish that they could earn more so the boy can receive regular treatment," she said.
Dao Thi Ha, a seven-year-old girl, is in the same situation. Weighing only 10kg, she has been hospitalised at least 10 times.
Today, she finds it hard to move, but Ha's mother, Vu Thi Tho, has no money left for her medicine.
"What if health insurance paid for the medicine?" she asked.
Vu Chi Dung, director of the National Paediatrics Hospital's Department of Endocrinology, Transforming and Inheritance, said about 90 per cent of children with brittle-bone disease didn't receive regular treatment, resulting in bone deformities, disabilities and even death.
Dung said the disease was a rare, inherited bone disorder and that there was no effective treatment. Young patients were usually given medicine to ease pain and minimise breakages.
However, this type of medicine is not on the list supported by health insurance. Thus, patients' families must pay up to VND12 million (US$576) a year for medicine.
PhD Nguyen Thi Hoan from the hospital said adults with the disease had received financial support to buy the medicine while children were ignored.
"It's unfair as these kids will have to live with the disease for their whole life," she said.
The doctors said the hospital has proposed the ministry to list the medicine as one of the health insurance supportive ones.
To help little patients get regular treatment, doctors encourage patients' families to share a box of medicine.
Currently, there are no official reports on how many Vietnamese have the bone disease. About 140 children with brittle bone disease are being under treatment at the National Paediatrics Hospital.
VietNamNet/Viet Nam News