Marking World AIDS Day (December 1) this year, the U.N. Program on HIV/AIDS has published new research that shows the number of new AIDS cases decreasing worldwide, and it says HIV prevention programs are making the difference. The fear of HIV still shrouds the virus in secrecy and bars the path to more comprehensive prevention.
Winnie Ssanyu Sseruma, of Ugandan descent, lives in London. She was in her twenties when she found out she was HIV positive. The news turned her life upside down.
"Shock was the main feeling at that time, and I thought you know what do I do now? Am I going to live for a long time, am I going to die, what is going to happen to me now?" She asked.
For many years she did not tell her friends and family that she was HIV positive. During that time her brother died of HIV. She says before she was ready to open up about her HIV status, she first had to come to terms with the shame she felt.
"I had to access counseling to deal with some of my fears, to deal with some of the shame that I felt at that particular time. And once, you know, I was able to deal with that, then I was able to talk about my HIV status," Sseruma added.
She says many people fear they may be shunned if their HIV-status is in the open.
"For us who are infected, there is still stigma, you know. There is still a lot of people who cannot come out and say, 'I am HIV-positive', because they wonder what the reaction will be," she said.
Today, 33 million people are living with HIV, which causes AIDS, or with the disease itself.
A new report says Africa is still the hardest hit. But it also says the number of new HIV infections is decreasing, and the United Nations says that is a sign that prevention is working.
But in Uganda, the country of Sseruma's family, six percent of the population is HIV positive.
Sseruma says those figures will not be cut until the stigma surrounding HIV and AIDS is broken down.
Marc Thompson is from the Britain-based AIDS campaign group The Terence Higgins Trust. He works with HIV-positive people in London's African community and agrees HIV stigma is a major problem.
"What we have certainly seen is that if there is stigma and discrimination, and if there is broadly stigma, people are fearful and are less willing to come forward and be tested," he said.
He says if HIV-positive people are not tested, they are more likely to pass on the virus to sexual partners and from mother to child. Thompson says the stigma surrounding HIV is particularly high in London's African community.
"So it is about trying to overcome that barrier, it is trying to work with faith leaders so they no longer think that sex is just a taboo and that HIV and AIDS is revenge from God for promiscuity," he said.
With millions of HIV-positive people taking anti-retroviral drugs, AIDS no longer has to be a death warrant. But with less than half of HIV-positive people in Africa receiving treatment, experts say prevention is key to fighting the HIV epidemic.
Dr. Ade Fakoya is a physician and advisor at the International HIV/AIDS Alliance.
"Prevention always gets less of a deal than treatment and that is a shame because for every five new infections, we are only able to get two on treatment, so we clearly have to focus on prevention," said Fakoya.
But prevention is given short shrift in many countries dealing with the disease. In Swaziland only 17 percent of the 2008 total AIDS budget was spent on prevention - despite a national HIV prevalence rate of 26 percent.
For HIV-positive Sseruma, breaking down the stigma surrounding HIV will be a major step towards prevention.
"I have decided that HIV is not sort of going to take over my life and I am not going to allow people to stigmatize me," she said. "I talk about HIV publicly, I live with it the best way I know how, I share my experiences with people and help others in my situation and I try to educate others about HIV," she added.
According to the United Nation's 2009 AIDS epidemic update, 2.7 million people were newly infected with HIV in 2008. And two-million people died of AIDS-related illness. In sub-Saharan Africa the number of new HIV cases has declined by about 15 percent since 2001.