One man's efforts to focus the public's attention

An AIDS patient identifying himself as Ben took Shanghai’s “Walking for AIDS” campaign more seriously than most.

The 34-year-old walked about 800 kilometers from Jinan, capital of Shandong Province to his hometown Shanghai in a six-week trek this autumn. He shared his story with Shanghai Daily to mark World AIDS Day today after giving a speech to students at Shanghai Jiao Tong University’s School of Medicine about his understanding of life and death.

The walkathon was sponsored by the Shanghai Youth Service Center for AIDS Prevention, a nonprofit private group where Ben has been working since 2013, the year when he was first diagnosed with AIDS.

He said he undertook the long walk to focus public attention on AIDS as a chronic disease that should be treated just like other illnesses, like diabetes.

“The best way to do that is to share my own story,” said Ben.

He still recalls that evening in April 2013, when he stepped out of his office and suddenly started to cough uncontrollably. The next day, he had to seek medical advice since he could barely climb the stairs to his office on the fourth floor.

Blood tests confirmed the AIDS diagnosis. Ben said he had little inkling of the disease and thought he might have only two or three years to live. 

After a month of treatment at Shanghai Public Health Clinic Center, which specializes in AIDS treatment, Ben recovered from his lung ailment, a variety of pneumonia commonly seen in terminally ill AIDS patients.

With so much drama hitting him at one time, Ben decided to spend more time with his parents. He also joined the Shanghai Youth Service Center for AIDS Prevention to share his experience and give hope to other patients like him.

The biggest problem, he said, is that many AIDS patients simply don’t believe they can live with the disease and refuse to accept the fact that they can.

“I want to help every one of them, but some people never give me the chance,” he said, adding that some shut the door on efforts to help them.

A few years ago, two men who lived together came to the center he works for to have HIV tests. Both were found to be HIV positive and both had syphilis.

“I asked them to give me 10 minutes to talk to them, but they ignored me,” said Ben. “Two months later, one of them called to tell me his partner had killed himself because he couldn’t stand the pain anymore.”

Fortunately, there are those willing to take advice.

Ben said he initiated a group of HIV/AIDS patients on WeChat that has more than 100 participants. He offers to take questions from patients and relay them to doctors at the Public Health Clinic Center.

‘How long can I live?’

Every month, doctors specializing in AIDS treatment are invited to give talks to the patients. The most commonly asked question is “How much longer can I live?”

Ben said medical advice from doctors helps dispel rumors and misinformation.

“After every lecture, some patients feel they can live for another 20 to 30 years,” he said. “They are also more willing to help one another get through this.” The patients also found a lot of comfort from each other in the group.

“Many AIDS patients who are gay men are quickly shunned by their gay friends if word gets out about their having the disease,” Ben said. “To those who have relatives living in rural areas, where information on AIDS is less available, they don’t dare to disclose it to their parents.”

Ben is now focusing on getting help for migrants who live in Shanghai but aren’t resident cardholders and are ineligible for free medical services. He is trying to help those people to connect with nongovernmental agencies in home provinces. That was a mission of this year’s “Walking for AIDS” campaign.