The cold reality of ALS

Close to 200,000 people suffer from Amyotrophic Lateral Sclerosis in China. Photo: Li Hao/GT

Is the "Ice Bucket Challenge" enough for patients?

As more people become aware of the illness Amyotrophic Lateral Sclerosis (ALS) through the global phenomenon of the "Ice Bucket Challenge," an activity which involves dumping a bucket of ice water over one's head to draw attention to ALS, the need to help patients who suffer from it becomes all the more apparent.

ALS, also referred to as motor neurone disease, is a neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Over time, the illness deteriorates the brain's control over muscle movement and eventually leaves patients fully paralyzed.

ALS patients recently interviewed by Metropolitan felt delighted to see such a growing awareness through the "Ice Bucket Challenge," but said that what they really need is financial aid that includes a medical insurance system by the government.

"The 'Ice Bucket Challenge' is a good thing, but I'm afraid that it will not be lasting in its effect. Patients need more practical support," said Li Xiaoguang, doctor of neurology at Peking Union Medical College Hospital.

With the success of the online "Ice Bucket Challenge" campaign, the activity has spread across the globe with celebrities taking part and encouraging awareness of ALS. China is estimated to have 200,000 ALS patients. One of them is 30-year-old Wang Jia, who was diagnosed with ALS in 2008. Now in the latter stages of ALS, he has lost complete control of his body and can only use his eyes to communicate with people.

On the afternoon of August 22, Wang sat in his wheelchair and had a bucket of ice poured over him. Though the act risked killing him, he thought it was worth it.

"As an ALS patient, I was risking my life, but I wanted to take the challenge as an example to others," said Wang by typing the words through an eye-controlled electrical device.

"I also want President Xi Jinping to take the challenge in order to raise the concern of ALS among the top leaders," Wang told Metropolitan. Wang is unable to speak or swallow, and requires an oxygen respirator 24-hours a day.

"The popularity of the 'Ice Bucket Challenge' worldwide has exceeded our families' expectations. Although the activity is a good sign, there are still many problems," said Wang Shufan, Wang Jia's father, adding that many people do not know the right channels for donation to ALS.

The "Ice Bucket Challenge," so far in China has helped raise over 6.9 million yuan ($1.13 million) on Sina Weibo through donations to the China-Dolls Center for Rare Disorders (CCRD), a rare disease foundation.

"Due to the rapid development of the activity in China, the organization does not have a clear plan on the use of the money," said Yi Ou who is director for CCRD.

"The organization at present has very few ALS patients registered with it," added Yi.

According to Wang Jia, the Soong Ching Ling Foundation has a special fund for ALS patients.

"In the case of my son, his must-have respirator costs over 10,000 yuan ($1,600). The monthly costs of running this machine is over 6,000 yuan, which doesn't include the rent and cost of nursing," said Wang Shufan.

Zhang Hong in Xi'an, Shaanxi Province, who has suffered from ALS since October 2005, also shared his concerns about the financial burden that ALS places on patients.

"The situation for many patients is bad due to poor financial situations," said Zhang. "Although there is no cure for the disease, there are still some measures which can slow the progression, but the bill is an astronomical figure for many families," she added.

"The money will go towards the treatment of rare diseases, including ALS. However, we have not yet decided how much will go towards the treatment of ALS," said Yi.

Some medical professionals, including Li, have called for more government involvement in the treatment of ALS.

"The government should establish a fund to cover the medical expenses for ALS patients, and include these expenses into the medical insurance system," said Li.