"I didn't really overthink things before deciding to lend a hand. The most important aspect, for me, was to make sure they got their medicines on time and didn't suffer any serious negative health outcomes," the 38-year-old social worker told Beijing Review.

On the road

As head of the center's department that offers HIV-positive persons a range of counseling services, Chen had been receiving calls from patients dealing with medication shortages since late March.

In Shanghai, hospitals can distribute necessary antiretroviral drugs and other related treatments mostly for free for HIV patients holding a local hukou (household registration) or temporary residence permit. Yet those without must either pay all costs or return to their hometowns where they have hukou status to get treatment free of charge.

Under China's hukou system, a baby is registered in the same place as either parent; in adulthood, a person can apply to change the location of registration. The system is a major means of determining eligibility for public services and welfare.

Many people working in Shanghai are still registered in their birthplaces. Getting access to medicines in Shanghai can therefore be quite complicated, a fact exacerbated by COVID-19-induced lockdowns and quarantines.

Chen said HIV patients usually receive three months' worth of medication at once, and the Chinese New Year holiday in early February was the perfect time for many to get them back home as they were visiting family there. Consequently, April would see patients' next regular refill. But not this year.

So what happens if they don't take their medicines on time? For most people with HIV, once they start antiretroviral therapy to stop the virus from replicating, they must continue it at all times. Discontinuation or interruption may wake up dormant cells, leading to a rebound in viral load and potential drug resistance—the former being life-threatening and the latter resulting in the possible failure of existing treatment options.

As calls for help flooded in, Chen, working from home at that time given offices were closed, decided to step in. "The result [of having no access to medication] can be deadly. No matter how tired I was, I just had to make sure they had medicines to take," he explained.

He applied for permission to leave his home (and compound), explaining the urgency of the situation to both the residential committee—a basic-level autonomous organization in China's mainland for residents' self-management and self-service—and local government officials. He was allowed outside on condition that he took a daily nucleic acid test and submitted the negative results to committee staff.

When COVID-19 paralyzed Wuhan, Hubei Province, in 2020, the Chinese Center for Disease Control and Prevention issued a new guideline coming to the aid of HIV carriers unable to return to their original treatment institution due to epidemic control measures or other related reasons. It stated patients could temporarily receive free refills at their current location, provided the hospital where they'd first received antiretroviral treatment issued a letter stating the emergency need. They could then show this letter to the hospital in their cities of employment and get their medicines.

Chen's job was to gather all the information from those in need, then personally present the hospital in Shanghai with the relevant documents, subsequently obtain the medication and finally deliver their medicines with the help of intra-city express delivery services.

The hospital was 15 km from his home. Chen first rode shared bikes, pedaling his way to and from the pickup. But it wasn't long before one of his acquaintances, who happens to be living with HIV, learned about the Good Samaritan's endeavor and lent him an electric one, saving Chen much time and energy. After the initial "chaos" subsided, Chen and his colleague managed to sort out all the details and came up with a proper operating mechanism within two weeks. By late April, they found some volunteers who were able to leave their compound and happened to have a car, so they were able to drive around and deliver the medicines. In two months, they carried out more than 1,000 distribution rounds to hundreds of people in need.

Chen not only went out of his way to guarantee people's physical health; the situation in Shanghai also put many a patient's mental wellbeing at stake. He would be there for them, listening and giving them an outlet to vent or express anger. "It's understandable. The situation was hard on everyone," Chen said. "What we do isn't just about pills; it's about helping them psychologically and bringing in positive vibes."

The future focus

Shanghai restored the normal order of production and living on June 1. Chen, too, returned to his office at the Shanghai Qing'ai Health Center. Established in 2008, the center has five staff members as well as hundreds of volunteers.

Chen joined the center in 2014, after suffering a severe bout of bacterial pneumonia,a frequent complication of HIV infection. After narrowly escaping death, he decided to disclose his positive status and use his experiences to help more people living with the same condition. His job ranges from encouraging potentially infected individuals to get tested and addressing common concerns to organizing support group meetings and making videos about HIV and AIDS.

The past two months have inspired him to do more. He's come to realize that the most vulnerable group amid the pandemic is senior patients. "Whereas we previously focused on younger male patients, we now want our future work to include more senior, as well as female patients," Chen said, adding that educating people about HIV and AIDS is an imperative task. When Chen was gathering all the information, some patients were unable to give him the accurate names of their medication, only referring to them as "the red pill" or "the yellow round one." "If more of them can get all these details right, it'll save us a lot of time, which in turn can be used to help others," Chen said.

He also wants to motivate more people to volunteer, preferably those who, just like him, are HIV-positive because they can best relate to patients in need and offer targeted assistance.

"I wish I had more time and energy to make all this become a reality," Chen said.

But what Chen and Shanghai Qing'ai need most right now is funding. Currently, the organization runs on donations from pharmaceutical companies as well as social and charitable projects under government procurement. But these sums are a world removed from the amount needed for the organization to function more effectively.

"For non-profits like us, funding is key. I truly hope the government, enterprises and broader society can pay more attention to us and this group of people," Chen concluded.

(Print Edition: Hope on Delivery)

Copyedited by Elsbeth van Paridon

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