According to estimates by WHO and UNAIDS, 34.2 million people were living with HIV at the end of 2011. That same year, some 2.5 million people became newly infected, and 1.7 million died of AIDS-related causes, including 230 000 children. More than two-thirds of new HIV infections are in sub-Saharan Africa. However, fewer than 20% of them are actually aware of the infection. Infection with HIV is determined by an HIV test.
Gender and diagnosis
Diagnosis and gender play corresponding roles in recognizing the lives of those living with HIV/AIDS. Women have not been diagnosed as early as men because their symptoms were not as obvious and doctors were not as likely to search for the disease in them as they are for men. This has also been based on the fact that far more men than women participated in clinical trials and women were therefore under-represented. Barbara Ogur has pointed out that the stigma of illegal drug use, and multiple partners has also lead to a lack of care and noticeability for women.
Among the women who were diagnosed with HIV/AIDS in the United States in 2009, 64% were Black, 18% were Latina, 15% were White, and 1% were Native Alaskan or Native American. It is also important to note, that far more women contract the disease via heterosexual contact than men.
Over the years of coping with the stigma and discrimination that accompany the diagnosis in most societies, a large number of support groups have been formed. In these groups, the term most often applied to people who are HIV-positive is "People Living With HIV/AIDS". This is often abbreviated as "PLWHA" or "PLHIV". Recently, "People Living Positively" has also been used.
The largest and oldest of the worldwide networks of people living with HIV is the Global Network of People Living With HIV/AIDS (GNP+), which has affiliate networks on every continent.
Testimony and relationship issues
For many women who are positive and in relationships, sexual expression and communication become an issue of conflict. Their natural human desires of love, trust and intimacy go unrecognized in programs such as ABC (Abstinence, Being faithful, Condom use) and as a member of the ICW (International Community of Women Living with HIV/AIDS) stated at the International AIDS conference in 2006 "we need to bring love back into the whole thing."
Each individual deals with a positive diagnosis in different ways and while some may practice abstinence others may continue to have sex. An ICW member from Zimbabwe stated, at a session in Toronto, that her "relationship ended, and I spent the next four years celibate," while an ICW member in the United Kingdom found that she preferred the use of condoms and "in some ways [HIV] has made me more assertive sexually." It is vital to note that a positive diagnosis of the disease does not only affect illegal drug users or promiscuous individuals and that their basic sexual desires do not fade.
Testing and rights
In Understanding Positive Women's Realities, Emma Bell and Luisa Orza argue HIV and sexual and reproductive health programmes and policies fail to recognize the complexity of HIV-positive people's lives and the context in which their sexual and reproductive choices are situated. Services do not prepare people for the consequences of a positive result of an HIV test.In many cases, service users are not taken into account and are forced to undergo an AIDS test without prior consent.
Understanding HIV-positive realities
The Joint United Nations Program on HIV/AIDS (UNAIDS), Amnesty International, the Global Network of Sex Work Projects and the Global Network of People Living with HIV/AIDS, have all condemned forced HIV testing actions as infringements on human rights and conflicting with proven public health measures that are successful in preventing HIV transmission. Sex workers in Malawi and Greece have been forced to undergo HIV testing and those who tested HIV-positive were criminalized. Stigmatizing measures discourage HIV-positive people from seeking voluntary and confidential counseling, testing and treatment.
According to Emma Bell and Luisa Orza in Understanding Positive Women's Realities, there is need for service providers to understand women's relationships impact on their ability to access treatment and other health services. In many cases, HIV-positive realities include husbands or partners forcing their HIV-positive spouse into giving them their ARV dose while he has not tested for HIV and not wanting to undergo an HIV test.
The right to have sex and children
People with HIV/AIDS have the rights to have sex and the rights to have children. They are often pressured into taking certain courses of action that are not in their best interests. HIV-positive women are often stigmatized as deviant as if they went wrong somewhere. When an HIV-positive woman gets pregnant it is viewed in a negative manner as irresponsible behavior. Believing that these women should not get pregnant is a huge violation of their reproductive rights. These women are frequently denied contraceptives due to the idea that they should not be having sex. Once a pregnancy occurs, the issue solely revolves around the safety and health of the child. This seems to be a good thing, except for the fact that the mother is left helpless and her needs are left neglected.
Balancing fear, security, and desires
HIV-positive men and women should not have to experience fears, security, and desires by themselves. They desire love, children, and intimacy. They crave a need for security and support. They experience fears of infecting their partners and infants, violence, discrimination, stigma, disclosures, and abandonment from loved ones. This becomes overwhelming and consuming for men and women already experiencing things most do not. There is a double-standard for these men and women. When they are doing the right things it is not accurate and they are told it will potentially scare people away. However, when they do not do these things they are enabling the spread of disease. HIV-positive men and women are often left with no options and have to research everything on their own. When an HIV-positive woman gets pregnant they are often told abortion is the only option.
HIV-positive people are often discriminated against because of (often unfounded) fears of infection and because the infection is negatively associated with promiscuity, homosexuality, and recreational drug use. In addition, fear-based HIV prevention campaigns can intensify the stigma against HIV-positive individuals.
Meaningful involvement means eliminating the stigma and the inclination to sideline positive people during discussions. Many times during debates, discussions or policy making debates HIV positive people are eliminated from the discussion and their voices are not recognized simply because people feel that they are not worthy of having an opinion. When HIV Positive people are sidelined in such way we take away their voice especially when such discussions affect them personally and their way of living. This is why it is important to include them in the discussion.
The way HIV Positive people can have meaningful involvement is by getting involved in programs and organizations that allow them to voice their opinions and help them become meaningfully involved. These programs should be non-stigmatizing, reflect the realities of those living with HIV, and include women and individuals living with HIV to be the ones who lead the organization. This way the organization doesn’t turn away the HIV positive individuals but allows them to live with the situation and gives them a system of support from women and individuals who already lived through it.
World AIDS day is December 1. Advances in medicine are making a great impact. Those who are infected are living longer and fewer people are getting infected. World AIDS day accomplishments include 2 million people infected with HIV in 2013, down from more than 3.6 million in 1997; as well as 7 million lives being saved as a result from taking ARVs.
- Women's Lives: Multicultural Perspective Chapter 5
- Venugopal G, Pillai A. "First ever needs assessment study by PLWHA to formulate a strategic intervention.".
- Understanding Positive Women's Realities(2006) Emma Bell and Luisa Orza
- HIV travel restrictions and retreats: http://plhiv.org
- ILGA.org: international organisation militating against all legal discriminations of travel and residence in the world against people infected by HIV or in AIDS diseases.
- HIV/AIDS Regulations The yearly information report for travellers with HIV/AIDS.
- AIDSmap: information portal on AIDS and the associated legislations in the world
- (French) Survey about discriminations against people living with HIV, 2005 – SIDA Information Service, France
- (French) sidaventure.net: website of an association fighting discriminations against VIH holders.
- : the International Community of Women Living with HIV/AIDS website.
- Women's Lives: Multicultural Perspectives Gywn Kirk and Margo Okazawa-Rey