On a special day in December, dozens of people gathered in a room and lit dozens of candles. It is a candlelight memorial for thousands of dead from HIV/AIDS for nearly 40 years since the virus responsible for the disease was identified. Civil-society organizations have been organizing around HIV/AIDS since then, and they are yet to see the pandemic peter out.
“We are all candles burning, and hoping to burn to the last bit, but unfortunately, HIV cut some short,” says Nwakamma Ikenna. He heads a coalition of civil society groups that work in the field of HIV/AIDS.
“But they did not die in vain. Their death told us that we have a problem and galvanized the world to deal with it.” The candlelight memorial immortalizes thousands who died of HIV/AIDS and holds out hope for the millions still living with the virus in Nigeria.
It also holds out hope that the narrative around HIV will change—from a disease that assured certain death to a condition that those infected can live with and lead productive lives.
“We celebrate the lives of those individuals who sacrificed their lives to bring national and global attention to HIV,” said Murphy Akpu, deputy country coordinator for the President’s Emergency Plan For AIDS Relief (PEPFAR), a United States governmental initiative to address the global HIV/AIDS epidemic and help save the lives of those suffering from the disease.
“If HIV is no longer the killer disease it used to be, we need to start finding new names.
“We still have ridiculous names alluding to HIV, and we’ve not made conscious effort to change them. The connection is that if you get this disease, you will surely die, and die quickly, but that’s not the case.”
Local parlances talk about HIV with connotations that indicate immediate and inevitable death. “HIV did not come with those names. We were the ones who gave it those names.
Now that the situation has changed, we need to change the name to something more comforting,” said James Atusue, a coordinator of the Network of People Living with HIV/AIDS (NEPWHAN) behind the candlelight memorial.
The network remembers Jamila Ibrahim, a woman who didn’t have HIV but “accepted to live with HIV in spirit,” said Edward Ogenyi, a former coordinator of NEPWHAN. Ibrahim stayed with the HIV community and served as a secretary on the NEPWHAN board until her death. In the 40 years since HIV was discovered and countries began responding to the pandemic, a lot has changed but sustaining progress against the virus is a burden individual nations and communities have to deal with.
“There is no doubt treatment is available. However, how do we sustain it?” said Ogenyi. The stigma around HIV is still a big issue in Nigeria. Communities working around HIV still report patients giving fake names, phone numbers, and addresses at clinics.
“The way to fight this is to fight stigma and discrimination. Build patient communities to take over service delivery,” said Ogenyi. “People living with HIV/AIDS are more comfortable with their peers who run treatment in special centres,” he said.
“We have to ensure inclusiveness in our programmes by ensuring everybody is carried along if indeed we want to end this.” The candlelight memorial recognized heroes, stigma fighters and civil-society activists who have helped bring treatment and sensitization around HIV/AIDS.
“We need to ensure patient communities take pride in providing peer and support to their communities,” said Ogenyi.