What you need to know
A Taiwan NGO that looks after HIV-positive babies and their mothers is struggling to find space for care centers and is forced to operate illegally because of the stigma surrounding AIDS.
A small boy wriggles in the arms of a caregiver, laughing, seemingly unaware of the tubes running out of his throat, keeping him alive. His mother, in prison for drug dealing, was not healthy when he was was born. Now seven, he is underdeveloped and needs fulltime care.
“He likes it when we talk to him,” says Nicole Yang (楊捷), founder of the Harmony Home Association of Taiwan, as she pauses to help drain fluid from one of the tubes.
Yang started looking after people with HIV-AIDS 30 years ago. When The News Lens International arrived to interview Yang at Harmony Home’s shelter for women and children in Taipei, she was sitting on the floor, in a room dotted with about 15 babies and toddlers, cradling the boy. The caregiver scheduled to look after the boy that day was stuck in Taoyuan, on the other side of Taiwan’s capital.
Yang, who oversees more than 30 shelters across Taiwan, China and Cambodia, has her hands full. In addition to looking after AIDS patients and their children – including children who are sometimes born with HIV/AIDS – her association provides a home for many orphans, human trafficking victims and homeless migrant workers.
Yang’s organization currently cares for about 130 patients with HIV/AIDS in Taiwan. While money is always a concern, her main worry is simply having the space to look after people.
“It is a big problem,” she says.
The issue appears to be twofold. Most importantly, despite decades of trying, Yang has been unable to gain political support to provide the land and building to house all the people her organization cares for.
“Everytime I tell people, ‘I need space, I need a building,' nothing happens,” she says. “Since the first president Lee Teng-hui (李登輝), [then] Chen Shui-bian (陳水扁), Ma Ying-jeou (馬英九) and now [President] Tsai [Ing-wen] (蔡英文), we are never successful.”
She is hopeful that the new Vice President Chen Chien-jen (陳建仁), may have more interest in her cause – Chen was previously a doctor and served as Health Minister from 2003 to 2005.
“He knows me, he knows our mission, now he is vice president, maybe he can do something.”
There is also a dense and endless swamp of bureaucratic zoning and licensing requirements making it near-impossible for the association to operate completely legally across its current locations.
“All the buildings have problems,” Yang says. “In total, we have 35 shelters, but every one is illegal, this building also." At the women and children center, run out of a four-story apartment in Wenshan District in Taipei, the rooms each have different legal uses, restricting who can be looked after in different parts of the building.
The total number of new cases of HIV reported each year in Taiwan, which started to decrease about a decade ago, has been back on the rise since 2009. According to official statistics, male-to-male sexual contact (MSM) accounts for 59% of transmissions in Taiwan, injecting drug users 21% and heterosexual contact 18%.
A key problem in gaining political support for an appropriate building for the organization, Yang believes, is the stigma that society holds towards people with HIV and AIDS – driven by the perception that the diseases are consigned to homosexual males, injecting drug users and the sex industry, and the fear people have of contracting disease themselves.
While different government administrations have gone as far as finding appropriate space for the organization in the past, the plans have never been realized.
“They have huge, empty buildings that nobody is using,” Yang says.
She says politicians are “scared” of causing problems among constituents and they know allowing an AIDS shelter to operate will not be popular with local communities. In Wenshan, Yang says neighbors still complain about the shelter, despite a court ruling about 10 years ago that it could remain operating there.
“Government cannot fight with the people,” she says.
The result is that Harmony Home has five different shelters across Taiwan – most are spaces that have been donated. In Taipei’s central Xinyi District, where the organization looks after more than 20 adults living with HIV/AIDS, the association operates out of two ground floor apartments across the street from the other.
There are about 32,000 people in Taiwan with HIV and 14,500 with AIDS. Most will have access to the public health system – although actually getting some doctors to treat patients can be problematic. But there are some, mainly migrants from Indonesia or other parts of Southeast Asia, who do not necessarily qualify for cheap healthcare and nor do their children.
Like many non-government organizations, Harmony Home finds it difficult to secure funding. In Taiwan, the organization pays monthly salaries and rent of about NT$2 million (US$62,000) and NT$1 million respectively. The organization also faces unpredictable medical costs for those patients, including children, who do not qualify for public health care.
“If they go to the hospital for two weeks, we have to spend about NT$60,000,” Yang says. “If they stay in the hospital for a month, it is about NT$130,000 a month.”
She says less than 5% of the association’s financial support comes from the government. While constant fundraising is difficult, the process serves a dual purpose of raising awareness of the issue.
“I like to get money from the public because I want the people to know more about HIV/AIDS,” she says.
Looking around the bright room on the hillside in Wenshan, it is clear Yang and her many volunteers will ensure that the children here, despite a tough start in life, will at least not be forgotten. However, Yang wants more than that for them.
She looks up from draining the boy’s tubes once more. “We just wish people can accept them.”
First Editor: Olivia Yang
Second Editor: J. Michael Cole