Stigma, discrimination and difficulty in reaching health clinics has led over half of new HIV cases in Liberia to go untreated, says the National AIDS Control Programme of Liberia, which calls the situation “alarming”.
From 2006 to 2013 some 26,000 HIV cases were reported, but of that number just 10,911 patients are enrolled in treatment centres, according to the Aids Control Programme manager Sonpon Blamo Sieh.
“They are doing this because of stigma, denial, discrimination and distances they have to travel to access treatment,” he told IRIN.
A health worker in the Kru town neighbourhood of the capital, Monrovia, told IRIN that when patients contract HIV “the community will still isolate you. Your family may isolate you. You could be denied a job,” though he noted attitudes have improved over the past five years.
According to Liberia's demographic health survey, 1.5 percent of Liberia's 3.5 million people are HIV-positive, with 60 percent of those being women or girls.
Awareness-raising programmes have not always taken root in rural areas, where many Liberians still continue to deny the disease’s existence, said Sieh. The AIDS Control Programme is currently carrying out an in-depth study to find out why people are dropping out so that it can target its improvements.
Martha Porka, a nurse at the Moonplay Clinic in Bong County, central Liberia, said HIV-positive people in rural areas have to walk up to three hours to reach their nearest clinic. And when they get there, they often have to wait the rest of the day to see a health worker. “For these reasons, they don’t come back,” she said, despite treatment being free.
“We have more drugs, but no one seems to be coming for them,” she added.
Treatment needs to be taken closer to people’s villages to improve continuity of care, she said.
Healthcare workers also need to change their attitude to people living with HIV, she stressed. “Some of the health workers are in the constant habit of demonizing HIV-positive people… Patients daily complain the way some health workers talk to them. I think we need to change our attitudes to these people and create love and care for them.”
Surveys undertaken by the AIDS Control Programme in the past have revealed that HIV-positive people are hesitant to access treatment due to the stigma involved in going public about their condition. Many seek care from traditional or spiritual healers, who are popularly consulted for all varieties of illness in Liberia.
Women speak out
Given that women disproportionately suffer from the disease more than men, they have to take a lead role in changing attitudes, say health workers.
To date, women have been relatively quiet about raising awareness of the dangers of HIV. But recently this has shifted, as women’s groups all over the country have launched an assertive campaign to raise awareness of the disease, refute common myths about HIV, and break down persistent stigma.
One group runs the “Jehovah’s Witness Campaign” whereby women go door to door like Jehovah’s Witnesses to spread the word on how to avoid infection.
Teneh Smith, 25, lives in the Monrovia suburb of Paynesville and heads a local campaign group called Women Against AIDS Movement, which includes nurses, journalists, stall-holders and students. This group also goes from community to community to discuss what the HIV virus is and why it is killing women. This group and others are using poster campaigns, word of mouth, text messages and radio programmemes to raise awareness of the disease.
People’s behaviour is starting to change as a result, she said.
"We cannot sit and see our young women keep coming down with this virus,” said Smith who lost her sister to the HIV virus in 2011. "When she died I did not lose hope. I began working with Liberian women. We have spread the news like wildfire across Liberian communities. Our women are on the move.”
Stigma and discrimination persist but people discuss the illness much more openly now than they used to, said health workers.
Several popular radio talk shows, such as HIV and You on community radio station Gedeh FM, are also discussing the issue. Presenter Marie Brown runs a weekly 20-minute slot targeting girls aged 15-25.
“I tell them about the danger of AIDS and how it is killing more young women in Liberia. I open the telephone lines for them to call and ask questions.” She often gets at least 50 calls a show. “I think it’s opening up people’s minds.”
Temah Kollie, 16, who attends the Donplay Community School in Kakata, in central Liberia, told IRIN: "From the first day I listened to the show, I changed my sexual behaviour. I learned that HIV is real and that we girls must stay away from sex, especially we teenagers… I have begun telling my school mates how AIDS is killing schoolgirls in Liberia."
For Sieh this is just the beginning. “The current statistics are alarming,” he told IRIN. “We are making progress [on fighting AIDS]… Now we know that the bigger challenge is to reach [and treat] the rest of the positive cases.”