Global HIV/AIDS Activism in the Digital World

Electron micrograph scan of HIV particles infecting a human H9 T-Cell. Photo Credit: NIAID
Electron micrograph scan of HIV particles infecting a human H9 T-Cell. Photo Credit: NIAID


In the United States, media coverage of the HIV/AIDS health crisis is no longer a priority due to an increasing perception that it is a manageable condition rather than a fatal diagnosis. Nevertheless, the virus remains a global health threat with millions of newly infected people and deaths each year.1 HIV infection is particularly brutal in sub-Saharan Africa, where 23.5 million people are infected with the virus.2 Though these high rates are slowly beginning to decrease through government-sponsored health plans that target infection, current treatment plans struggle to keep up with transmission rates. This is primarily because HIV is transmitted through behaviors such as drug use and sexual activity, and it is difficult to educate large rural populations on how to prevent spread of the virus.

South Africa, especially, deals with high rates of infection. Despite improved treatment guidelines for HIV brought forward by President Jacob Zuma in 2009, HIV/AIDS clinics face a high level of treatment drop out – nearly 37% of patients do not follow up on their treatment after three years. This treatment program is the world’s largest AIDS treatment program, currently serving more than 2.4 million people through antiretroviral (ARV) therapy.3

This treatment program has been a long time in the making. South African activists faced an uphill battle for treatment and recognition of HIV/AIDS from the government in the 1990s and 2000s. The Treatment Action Campaign (TAC) is the activist group responsible for many of the improvements in treatment of HIV/AIDS. Formed in 1998, the group was initially founded by HIV-positive activist Zackie Achmat in order to fight for the availability of ARV Zidovudine for pregnant HIV-positive women to reduce transmission to newborns. TAC pushed through decades of HIV/AIDS denial by government officials, who claimed that HIV did not cause AIDS and that natural remedies were a sufficient treatment option.4

Despite the 2009 announcement of a national AIDS treatment program, many HIV-positive individuals slip through the cracks and do not receive treatment while they continue to spread the virus. Stigmatization of an HIV-positive test limits South Africans’ standing in the community and poses an especially large risk to young women in these areas. Nelly Gumede and Mandisa Mbali, two young HIV/AIDS activists in South Africa, describe how difficult it is for women to take charge in their sexual relationships when insisting upon condom use to prevent the spread of HIV. They further describe the challenges that young women face when joining activist causes, citing a stigma within their communities that associates HIV-positive status with collective action.5

Antiretroviral Drugs used for HIV. Photo Credit: Krista Kennell/Zuma/Corbis, The Guardian
Antiretroviral Drugs used for HIV. Photo Credit: Krista Kennell/Zuma/Corbis, The Guardian

Because of the stigma associated with HIV, it is difficult for people living with HIV in South Africa to congregate in community spaces and advocate for changes to the current system. Within these communities, HIV/AIDS is associated with behaviors traditionally viewed as immoral, such as drug use and sexual activity. As a result, people with AIDS (PWAs) are discriminated against and judged for a perceived moral failing, rather than given treatment. In a 2007 study, researchers from the University of Connecticut found that in Cape Town, South Africa 43% of people surveyed in local communities believed that people with HIV/AIDS should not be allowed to work with children and 41% said that HIV-positive individuals should expect to have “restrictions placed on their freedom.”6 Studies show that this perceived moral failing leads to a lack of disclosure of HIV-positive status, creating more opportunities for the virus to be passed on. Internalization of this stigma leads to higher rates of depression among people with HIV in South Africa.6

Improved access to health information and increased connectivity among South Africans living with HIV/AIDS could empower patients with tools to combat stigma within their communities. The effect of online support groups on the lives of patients has been documented in the United States, where researchers have found that these individuals use online forums to provide and seek both emotional support and tailored medical advice.7 Users are able to post specific health questions and receive answers from others with the same condition. This gives agency to people living with HIV by “narrow[ing] the gap between producers and consumers of knowledge”.8 Shared information has the potential to help decrease the stigma that surrounds HIV/AIDS and provide health information to those without access to direct medical care. In rural areas that lack local treatment centers and support groups, the internet could allow patients access to helpful information. Though this is not a replacement for medical care, it could increase medical literacy and improve the lives of people living with HIV/AIDS.9

HIV-positive individuals are also able to access health information online provided by medical authorities without having to pay for doctors’ appointments. This is especially beneficial to marginalized populations who cannot afford healthcare or for those living in rural areas that lack transportation to state-of-the-art healthcare facilities. By accessing this information from within the comfort of their own homes, without barriers instituted by medical bureaucracies, the internet “reduces the patients’ dependence on the physician as the ‘expert’” by providing alternative forms of information.10

These digital media tools employed in the United States also have the potential to impact the HIV/AIDS crisis in South Africa. Internet use and availability is increasing across Africa and in South Africa specifically, 40.9% of households have at least one member with access to the internet.12 As this number continues to rise, HIV/AIDS activists in South Africa should devote more of their resources to targeting HIV-positive individuals through online outreach. With the increasing global dominance of the internet and electronic media, it will be important to watch the way that mobile technology affects health information among countries with massive HIV-positive populations.


1. (UNAIDS), J.U.N.P.o.H.A., UNAIDS Report on the Global AIDS Epidemic. 2012, United Nations.
2. AIDS, A.A.H.a. Africa HIV & AIDS Statistics. 2012 [cited 2015 4/15/2015]; Available from:
3. ABOUT US. [cited 2015 15 April]; Available from:
4. South Africa: A timeline of HIV/AIDS activism. [cited 2015 15 April]; Available from:
5. Pithouse, K., ‘Look Forward, Look Back, and Look around You’: Young South African Women on the Path of HIV/AIDS Activism. Agenda: Empowering Women for Gender Equity, 2004(60): p. 22-26.
6. Simbayi, L.C., et al., Internalized stigma, discrimination, and depression among men and women living with HIV/AIDS in Cape Town, South Africa. Social Science & Medicine, 2007. 64(9): p. 1823-1831.
7. Mo, P.K.H. and N.S. Coulson, Exploring the Communication of Social Support within Virtual Communities: A Content Anaysis of Messages Posted to an Online HIV/AIDS Support Group. CyperPsychology & Behavior, 2008. 11(3): p. 371-374.
8. Indyk, D. and D.A. Rier, Grassroots AIDS Knowledge: Implications for the Boundaries of Science and Collective Action. Science Communication, 1993. 15(1): p. 3-43.
9. Brashers, D.E., et al., Social Activism, Self-Advocacy, and Coping with Hiv Illness. Journal of Social and Personal Relationships, 2002. 19(1): p. 113-133.
10. Mo, P.K.H. and N.S. Coulson, Empowering processes in online support groups among people living with HIV/AIDS: A comparative analysis of ‘lurkers’ and ‘posters’. Computers in Human Behavior, 2010. 26(5): p. 1183-1193.
11. Gillett, J., Media activism and Internet use by people with HIV/AIDS. Sociology of Health & Illness, 2003. 25(6): p. 608-624.
12. General household survey, 2013, Statistics South Africa.


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