A drop in the bucket(2)

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.