Society

Govt struggles to keep up with hemophilia costs

By Shan Juan (China Daily)
Updated: 2010-08-12 08:17

BEIJING - The government needs time to begin covering all medical costs for hemophilia patients, like other countries and regions do, said Wu Runhui, a hematology specialist with the Beijing Children's Hospital.

China's huge population and its lack of doctors who can diagnose and treat the disease makes the mission quite difficult, she said.

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But she conceded international experience has shown that without strong government support, the problem of hemophilia, whose sufferers need lifelong, expensive treatments, can hardly be addressed.

Also, "to invest in hemophilia treatments, particularly the preventive kind among child sufferers, is a smart choice by health economics standards, because the patients would live as normal and make contributions to the society with adequate medical care", she said.

China now has about 130,000 mainlanders suffering from hemophilia, with a prevalence of one in 10,000 in the general population, experts have estimated.

However, less than 5 percent of them have been diagnosed and treated, official statistics showed.

Without treatment, the incurable disease can cause crippling pain, severe joint damage, disability and early death, according to the World Federation of Hemophilia.

Most of the Chinese patients end up in wheelchairs and die young, Wu said.

A recent epidemiology study in India showed the average life span for severe hemophilia patients in the country was around 30 years.

"I think that's similar to China's situation," Wu said.

"People like Sun Shiran, who were diagnosed young and are receiving preventive treatment, are lucky among all the sufferers in China," she said, adding that the care is still not adequate, but better than most receive.

Given the relatively small prevalence of the disease in the population, and China's vast territory, it's hard to detect the patients in China, she explained.

Poor public awareness and the limited hemophilia care capacity of medical facilities are also to blame, she said.

Today, even in the capital city of Beijing, only a handful of hospitals are capable of diagnosing the disease, said Kong Delin, a hemophilia patient in Shanghai and deputy director of the Hemophilia Home of China, a volunteer civil society of more than 3,000 patients.

Many patients have to travel long distances to cities like Beijing and Tianjin for medical help, he said.

At Wu's hospital, for example, more than 70 percent of the hemophilia patients came from other parts of the country, she said.

To address these problems, the Ministry of Health launched earlier this year a nationwide hemophilia disease management system to help take better care of the patients. Under the system, hospital-based hemophilia management centers would be set up in three to five years across the country to register and monitor patients and standardize disease diagnosis and treatment.

To date, more than 7,000, including Sun, have signed up.