Ma Chan-kwong, another ESRD patient and the chairman of Hong Ling Renal Club, also had his application for disability allowance rejected. However, as the 47-year-old has to take care of his mother, the Social Welfare Department (SWD) grants him Comprehensive Social Security Allowance (CSSA) payments of HK$7,000 per month.
Since his peritoneal cavity cannot function, Ma receives subsidised hemodialysis treatment and pays HK$300 each week. Despite getting CSSA, he finds it a struggle to make ends meet for himself and his mother. “No [social life] at all, unless I earn a bit more money from part-time jobs,” says Ma.
Ma was diagnosed with ESRD in 1990, but he kept on actively looking for jobs. As he has to visit the hospital three times a week for dialysis, he cannot work full-time. Even though he was willing to accept a lower salary, he still could not find employers who would take him on.
Later, Ma chose to be a part-time taxi driver. It is not just for the money that he insists on working. “I can’t just stay at home, and working can grant me a higher sense of achievement,” Ma explains. As Ma works part-time, the SWD deducts a certain amount of his allowance.
Joey Chan Pui-lam is the community relations manager of Alliance for the Renal Patients Mutual Help Association, whose members are the patients’ associations from nine public hospitals. She criticises the government for failing to provide support to help ESRD patients to find jobs.
Patients can seek help from non-governmental organisations, like the Hong Kong Society for Rehabilitation. But these organisations can only arrange training courses for patients, they cannot provide direct employment services.
Chan is also critical of the lack of government support for her association. The association organises frequent activities to promote knowledge and awareness of renal diseases in the community and encourages patients to become volunteers to enhance their social life. However, the SWD only provides them with HK$300,000 every two years.
“[The government] thinks that they have already done something by giving you the chance to have dialysis or see doctors,” says Chan.
She thinks the government’s policies are slanted towards other groups, such as the physically disabled. For instance, there are sheltered workshops with job opportunities for the disabled, as well as disability allowance and transport fare concessions.
Janet Hui is a member of Chan’s association, but she is luckier than many of her peers. Giving up on waiting for a kidney transplant in Hong Kong, she received one in Guangzhou in 1997. Now, she only needs to pay around HK$800 per month for anti-rejection medicines. Since the Mainland tightened regulations on organ donations and transplants in 2007, Hong Kong patients can no longer seek transplant operations there.
There are currently 1,965 ESRD patients waiting for kidney transplants in Hong Kong. Yet the number who will receive the surgery every year is small, due to the shortage of donor kidneys. In 2014, only 79 patients received the surgery.
Except for some dietary restrictions, Hui now leads an ordinary life. “I can do more things I like, including travelling and voluntary services,” she says.
“Kidney transplant is the only way to stop receiving [dialysis] treatment, to allow me to live as an ordinary person,” says ESRD patient and taxi driver Ma Chan-kwong. The greatest wish of many ESRD patients, including Ma, is to live normal lives with jobs and social lives, but to achieve this they need more support from the government and the general public.
Edited by Macau Mak