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A drop in the bucket
Last Updated: 2014-08-28 07:20 | Global Times
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Icy challenge offers limited help to ALS patients

A man takes the Ice Bucket Challenge with nearly 100 people from the IT industry on August 21 in Beijing. Photo: Li Hao/GT  

"As the Ice Bucket Challenge stays hot online, our cold lives remain unchanged," said Tian Kong, an Amyotrophic Lateral Sclerosis (ALS) patient in Nanjing, Jiangsu Province.

The Ice Bucket Challenge, a fundraising activity first initiated in the US for a rare disease called ALS, has helped raise millions of yuan in China after arriving in the country just a couple of weeks ago.

The challenge has taken both celebrities and ordinary people worldwide by storm as they flock to post videos of themselves having ice water dumped over their heads as a way to raise awareness while making donations.

But there has been controversy as well. Some have criticized the pouring of ice water as a waste of resources, while places like Henan Province are experiencing a severe drought. Meanwhile, many asked whether the challenge was really doing good, or was just a way to show off.

Promising picture

Amid increasing skepticisms regarding its effectiveness, the social media phenomenon has had positive results, producing widespread awareness and unprecedented donation numbers.

"I appreciate the campaign using creative and entertaining ways to promote awareness of ALS among the Chinese society as the international event has slowly become localized," Yu Zhu, the wife of an ALS patient in Beijing, told the Global Times.

The China Dolls Foundation for Rare Disorders has received the most donations, reaching more than 8 million yuan ($1.3 million) as of Wednesday. Previously, the organization had only raised 15 million yuan over the six years since it was founded.

Sun Yue, spokesman for the foundation agreed that awareness of ALS has been unprecedented thanks to the Ice Bucket Challenge, following years of difficulties in explaining the disease to the public while trying to raise donations.

"But there has been a misunderstanding about our foundation as donating to us will not only serve ALS patients, but patients with different types of rare disorders," Sun said.

This, too has become one point of argument among concerns that China currently lacks a professional and comprehensive charity that specializes in ALS.

Behind the hype

Despite the record-high hit rates and donation numbers, a group of ALS patients told the Global Times that they hope to see concrete benefits in the future.

"We are glad that the Ice Bucket Challenge has made people become aware of the disease, but none of us have been benefited from this yet," Tian Tangyu, a Beijing ALS patient, told the Global Times.

In China there are about 20,000 ALS patients, who are facing similar a predicament to Tian Kong and Tian Tangyu, waiting for assistance.

ALS is neurological disease for which there is no known cure or remedy, nor an identified exact cause. Patients suffering from the disease usually only survive for three to five years after symptoms begin, and during the period gradually experience muscle atrophy, or reduction of muscle mass, and lose control over actions such as speaking, swallowing, or even breathing.

"We have seen increasing family burdens caused by unaffordable medication and high psychological pressure … We feel helpless in every step along the way," Yu Zhu said.

After her husband was diagnosed with the disease eight years ago, Yu has spent countless sleepless nights attending him and many restless days searching for a cure.

Thousands after thousands of yuan have also been poured into surgical operations and purchasing devices like breathing assistance devices, eye-operated communication and control systems, that can only delay but never stop the deterioration.

Because of the slow progress of related medical development and the lack of experts specializing in the field, it took Yu and her husband six months to confirm the diagnosis, which has delayed the progress of medication. "After years of taking care of my husband, I think we in some ways know better than the experts!" she said.

"I can easily count the experts present in our country as there are so few of them," said Yu, adding that most of these experts are based in Beijing, making the situation more difficult for families living in less developed cities

Institutional solutions

Fortunately, a self-help charity sprung up in recent years to slowly fill the gap.

Oriental Rain ALS Care, the charity Yu founded last year, was approved by the civil administration authorities to publicly raise donation on August 21, and had received more than 9,000 yuan in donations as of Tuesday.

"We first started sharing experiences we had accumulated over the years with other patients and families in [the social network] QQ, and slowly developed into a mutual-help community ," said Yu.

Separately, the Wang Jia Foundation, established in 2012 by an ALS patient, Wang Jia, is donating 10 breathing devices to ALS patients, an encouraging but still miniscule number.

Zhang Gaorong, an assistant dean at the Beijing Normal University China Philanthropy Research Institute, expressed concern over the long term momentum of the campaign.

"The power of influence will slowly decrease over time … as the issue [of ALS] will be buried among many other issues and causes in China," noted Zhang. "Financial support from the government is essential in sustaining the assistance."

His point is echoed by the patients, as they believe the help from charities will still be limited until the government steps in to help.

"The help from charity has only been a drop in the bucket that cannot solve the fundamental problem. We need institutional support at the national level in the long term," said Qiu Ye, an ALS patient in Hangzhou, Zhejiang Province.

Other ALS patients interviewed by the Global Times agreed the disease should be covered by the national medical insurance system, so as to the cost of medication and assistance devices.

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