The burden of stigma

Few people with HIV/AIDS escape the stigma and discrimination that often comes with the disease. When those who are infected live on the fringes of society, their misfortune is perceived by many people as punishment for errant lifestyles. Drug addicts, sex workers, men who have sex with men bring the virus on themselves, say those who deny our shared humanity. HIV-positive people are driven underground as a consequence, fearing the prejudice and intolerance of communities which are not prepared to accept them. The epidemic continues unabated and soon becomes everyone's problem.

And while stigma and discrimination may be invisible their effects can be devastating. In some instances, they can cause severe depression and despair in people with HIV/AIDS while preventing others from getting tested and treated. A recent UNAIDS report added, "they cause those at risk of infection and some of those affected to continue practising unsafe sex in the belief that behaving differently would raise suspicion about their HIV-positive status."

Forced in the shadows

Ernst Stadgnizs knows about stigma. He is a 26-year-old Latvian known for his interest in children's rights. He is not shy about tackling problems of drugs and sexual abuse among youth. He is quick to help others, but when the conversation focuses on him he is quiet and hesitant. For this public figure has been forced into the shadows himself, by the stigma of being HIV-positive.

In the past couple of years, Latvia, and its Baltic neighbour Estonia, have seen an explosive growth of HIV, with the vast majority of new cases found among injecting drug users.

"Me, I worry about my mother," says Ernst. "Will she have problems at work if I go public on my HIV? My little brother does not know. How will he react when he learns? It is a very lonely existence."

But the stigma of infection goes beyond family worries. "The fear affects every part of your daily life," he says, and even getting the right balance of psychological and medical care is no easy matter. "There is little psychological support in Latvia for people with HIV/AIDS. I have the feeling that my doctors are uncomfortable about treating someone who has it. They concentrate only on the medical problems and offer no help when I am depressed about my health. You feel everyone wishes you would just go away."

Universal condemnation

The United Nations Declaration of Commitment on HIV/AIDS puts stigma and discrimination at the top of the agenda by calling for strategies that "address the epidemic in forthright terms; confront stigma, silence and denial; address gender — and age-based dimensions of the epidemic; [and] eliminate discrimination and marginalization". UNAIDS took up the call for action and is leading a global campaign, "Live and let live", to combat stigma.

The problem is that while civil and political leaders agree more needs to be done to fight stigma, many are reluctant to address it directly and be positive role models. The consequences of this inaction can be seen in the rising infection rates worldwide.

Those working hardest to bring about change are people living with HIV/AIDS themselves. By organizing support groups they are able to end their isolation and tackle the problem head on. Ernst is a member of the Global Network for People Living with HIV/AIDS (GNP+), a partner of the Federation. He receives e-mails daily from people explaining the impact prejudice and ignorance have had on their lives. He works with them to overcome internalized stigma and develop the skills and confidence to pursue productive lives. Contacts made through GNP+, which works to improve the quality of life for people living with the disease, remind Ernst how much still needs to be done.

Taking the good with the bad

"My family ignores me. My father and brothers see me as a burden," explains Tamara, a 37-year-old HIV-infected woman living in Lebanon. Her support group is a refuge for her and a small number of HIV positive people, providing psychological (and sometimes financial support) to each other. It helps them cope with the marginalization and rejection that often comes with the disease. In addition, it has also formed a nucleus for a movement that is gathering steam in a country (and a region) where HIV-positive people have been facing widespread prejudice and discrimination.

The group recently expanded its activities. "We began discussing the rights of HIV-positive people," said Nadia Badran, who runs the group for Soins Infirmiers et Developpement Communautaire, a local non-governmental organization. This came about after two group members were not allowed to carry out their military service because of their seropositive status.

The military provides a card listing the reason why an individual is unable to serve in the armed forces. This card has to be presented with any employment application. In Lebanon, this means lost opportunities and discrimination. To prevent this, discussions were held with the armed forces' chiefs of staff. "The meetings were very difficult," says Badran, "but we were able to change the listing to the less discriminatory term 'incurable disease'." This is a good first step and the group is now working to stop HIV/AIDS-related stigma and discrimination in other areas of their lives.

But people living with HIV/AIDS cannot do it alone. There needs to be a more universal effort to overcome the many taboos and barriers that allow stigma and discrimination to fuel the AIDS pandemic. It is clear that silence, exclusion and isolation are limiting the care and services needed by people living with HIV. They are also increasing the spread of the infection as leaders remain timid about prevention efforts. To combat them, the UNAIDS report explains the challenge ahead: "Some 20 years into the epidemic, with prejudice, stigma and discrimination still evident, the time to act is now...There can be no substitute for concrete steps to defend the rights of people with HIV/AIDS and to promote better understanding of their needs."