中国ALS患者的高昂医疗费

The wildly-popular "Ice Bucket Challenge" has made the name amyotrophic lateral sclerosis, or ALS, a well-known disease here in China.

The popularity of the "Ice Bucket Challenge" comes at a time when Chinese sufferers of ALS are struggling with high medical costs.

CRI's Liu Min has more.

Both medical staff and family members of ALS patients have voiced the urgent needs of ALS sufferers in China, amid a popular Internet campaign, the Ice Bucket Challenge. The campaign is currently drawing worldwide attention to the disease.

The Ice Bucket Challenge has already raised more than 1.5 million yuan in China, which will go towards further scientific research, and charities to support the patients with ALS, known as motor neurone disorder or Lou Gehrig's disease.

Professor Shang Huifang works in the Neurology Department of Sichuan University West China Hospital and has been doing research into ALS for over a decade. She says the condition is believed to be caused by both genetics and the environment.

"The biggest challenge lies in identifying its cause. Global research is currently underway to discover the exact cause."

ALS is a neurodegenerative disease characterised by muscle spasticity, rapidly progressive weakness due to muscle atrophy, and difficulty in speaking, swallowing, and breathing.

Professor Shang says the biggest problem for ALS sufferers in China is the heavy financial burden of treatment, and a lack of care and respect from society.

A family member of an ALS patient, who doesn't not wish to be identified, says her family have experienced many difficulties over the past few years in dealing with the medical treatment, citing the high costs as the biggest challenge.

"The medical costs of ALS treatment are not covered by medical insurance, and there is a lack of social awareness of this kind of disease. Even I hadn't heard of it before my family member was diagnosed. The incidence of ALS is really low and that as a reason why many people don't know about it. So we hope to raise social awareness of ALS, and also hope our government can provide more support through medical insurance and the social security system."

There are around 200,000 ALS patients in China. It costs roughly 70,000-80,000 yuan per person per year to purchase the imported medicine that can slow the progression of their condition.

This kind of imported medicine is not covered by medical insurance, and cannot be reimbursed.

Sufferers of the disease and their families are calling for an expansion to China's current medical insurance system to cover the medical costs for ALS patients.

For CRI, I'm Liu Min