Ice bucket challenge turns to cash freeze two years on from ALS fundraising craze
Originally published at the South China Morning Post on August 20, 2016.
This time last year, 43-year-old Mike Ko could speak clearly, use his hands to write, and go out using a wheelchair to eat with his friends at a restaurant. Now he can only make sounds, and even a simple act such as lifting his head to sip water exhausts him. Leaving his apartment is a struggle.
It has been three years since Ko was diagnosed with amyotrophic lateral sclerosis, a rare type of motor neurone disease that causes a victim’s muscles to rapidly weaken to the extent that they have difficulty moving, speaking, swallowing and eventually even breathing. Most victims die of respiratory failure or pneumonia in the first five years.
A former fashion designer, Ko spends his time mostly immobile, laying down or sitting in the flat he shares with his 70-year-old mother and a domestic helper. Days are occupied with searches and attempts to apply for overseas trial treatments that may help ease his suffering – efforts that have so far been unsuccessful.
“There’s still no cure, no trial, and nothing can help me,” Ko said, speaking through his helper. “Every day is like the same day. It seems like I’m going to die tomorrow. I’m getting worse every minute – I really need a miracle. I want to tell everyone how horrible ALS is.”
It’s the incurable disease that inspired the 2014 viral ice bucket charity campaign in which people across the globe filmed themselves pouring a bucket of ice over their heads – simulating the pain felt by ALS patients – and donating to charities, posting their efforts on social media and challenging others to do the same.
Money raised worldwide totalled about US$220 million and has led to the recent discovery of a new gene associated with the disease by an initiative funded by the ALS Association.
The campaign raised HK$30 million for the Hong Kong Neuro-Muscular Disease Association from August to October in 2014. In the first week, donations amounted to about 150 times what the charity used to receive annually. Yet just two years later, support for victims of ALS and other neuro-muscular diseases has steadily dwindled, and many are worried that the awareness raised by the challenge will continue to fade.
Tony Liu Chi-chung, vice president of the charity who suffers from multiple sclerosis, said the association is the only non-government organisation to provide financial support to victims, most of whom require services and equipment costing about HK$20,000 per month.
While the charity has made other fundraising attempts since the challenge, including a walkathon, annual donations have declined to HK$50,000.
“We hear people say – you already had the ice bucket challenge, why do you need to raise more money? But this is not the case. We need to have long-term funding,” Liu said.
“Awareness has increased because of the challenge, but I don’t know how long it can last.”
In 2014 and 2015, the number of patients with motor neurone disease discharged from public hospitals were 181 and 154, respectively, a Hospital Authority spokesman said. The charity said the ages of such patients in the city range from 22 to 80 and there are currently about 60.
There are about 400 people suffering from neuro-muscular diseases in the city. They are eligible for a disability allowance of up to HK$3,300 per month and may apply to the means-tested Community Care Fund of the Social Welfare Department.
The fund offers HK$2,500 for medical items, HK$2,500 for breathing equipment and HK$2,000 for special allowances.
“The government had actually wanted to cut the special allowance funding before the challenge, but didn’t as a result of the campaign,” charity social worker Sae Sow Jintana said. “We hope the government will consider allocating more funds to patients for intensive care.”
Using the funds from the challenge, the association set up a scheme that allocates money to patients for various services such as physiotherapy and domestic help, and equipment like breathing machines and communication tools.
Some 39 patients have received funding from the scheme so far, with an annual cap of HK$90,000 each. Donations from the challenge are expected to run out in 2018.
For patients to truly receive the help they need in the long run, the government needs to provide more funding, support services and education on treatments available, the charity added.
Despite the charity’s efforts to efficiently allocate funds from the challenge, not everyone agrees with its methods.
Vivi Chan Hoi-wing, a friend of Ko, said money should be used to create a shelter for patients where they may receive 24-hour support from professional caretakers and share resources. That would be more cost-effective than having each patient pay for individual services and equipment.
She also criticised the level of medical care available to patients and lack of collaboration between local and overseas experts.
Hong Kong currently doesn’t have facilities offering pilot treatments that are available overseas, yet going abroad is expensive and requires patients to go through immense bureaucracy. Not one patient has successfully qualified for an overseas trial treatment yet, the charity said.
“Having a patient at home is very difficult. (Ko’s) helper really doesn’t have medical experience. I don’t know why the government can’t create a shelter and have nurses to look after them,” Chan said, adding that Ko’s primary goal now is to try a trial treatment.
“He’s willing to try everything, even if it costs his life, because he thinks it might help others. He’s so tough, and inspires me so much.”
For Ko’s mother, the burden only continues to grow as her son’s condition deteriorates. The family has no source of income, and depends on friends and donations.
“I used to think that Hong Kong’s medical care was quite good, but not now. I can’t even find doctors who can help my son. The government has the money, so why can’t they provide more facilities?” she said.
“We are not doctors – what can we do?”