In the mid 1980s, I remember watching the Somali television and seeing a new disease take over the headlines. HIV/AIDS was so new at that time people didn’t even have a name for it. “Aydhiska,” as we now call in Somali, still remains a big taboo. The only person we knew who had it was an Italian singer, someone who used to make appearances in the Somali media whose name I don’t even remember anymore.
Well, things have changed since. Today, according to UNICEF, there are about 30,000 people living with the disease in Somalia. So, we now know some people who live with it, even if rare (0.5% of the population). What has not changed is that it’s still a taboo a subject in society at large. This has to do with the fact that people see the disease as sexually-related, and therefore assume people are having sexual relationships out of their “normal” relationships in order to acquire it.
Yes, there is also a lot of misinformation.
There are activists, like sisters Halimo and Hadiyo Jim’ale, who are working hard to change this in Somalia. Elsewhere in the Muslim world, there are also activists who are working hard to change the attitudes in their societies so that people can actually eradicate this awful disease. These activists are often brave, risking societal and governmental pressures, but their work pays off.
Here are five activists from the Muslim World who are fighting HIV/AIDS:
Mali: Karamoko Tounkara
Before taking over as the Director of Programs at GAIA, or the Global Alliance to Immunize against AIDS, in 2007, Tounkara was directing two other programs on the same issue. He’s a medical doctor, as well as a researcher on HIV/AIDS. His researched papers have been presented at several gatherings, including at the 4th International Conference on HIV Treatment Adherence in Miami in 2009. GAIA says he’s “hard to make sure all our patients receive the best care available” as the head of the Bamako office. Under his direction, the organization has received numerous grants and has been able to successfully implement local programs that prevent the disease. About 100,000 are living with HIV/AIDS in Mali, according to UNICEF.
Oman: Nashia Nasib
Nasib is the president of “Positive Vision,” which is the first non-governmental organization that deals with HIV/AIDS in Oman. The organization, which was created in 2013, has over 40 founding members from various backgrounds, including members of the Royal family, MoH, government and private sector officials, media personnel, legal experts and people living with HIV (PLHIV). She has been working in the HIV/AIDS sector for a long time, first with the United Nations and later with the country’s Ministry of Health. According to Nasib, there are about 1,500 people living with HIV/AIDS in Oman.
Iran: Kamiar Alaei
From 2002 to 2007, Kamiar Alaei co-authored Iran’s National Strategic Plan for Control of HIV/AIDS. The government recognized his work, along with his brother Arash Alaei, to be an important work, mostly because Iran has the highest heroin users in the world. Kamiar became an HIV/AIDS activist back in 1997 when he was in medical school in Tehran, and realized the impact drugs were having on new infections. In 2004, he was the subject of a documentary, “Mohammad and the Matchmaker,” which looked at the blossoming relationship of two HIV-positive Iranians, Maryam and Mohamed, who were introduced by Alaei. Due to getting a fellowship to research at Harvard, along with being recognized in Western media and organizations, Alaei, with his brother, was arrested in 2008 and spent 3 years in prison on spying charges. After his release in 2010, his work continued, now even more globally-recognized. There are 70,000 people living with HIV/AIDS in Iran, according to UNICEF.
Malaysia: Marina Mahathir
In 1993, Marina Mathir became the chairperson for the Malaysian AIDS Foundation. Later, she also became the president of the Malaysian AIDS Council. By working with these organizations, she has impacted the many organizations they support. As a popular journalist, as well as being the daughter of the former prime minister, Mahathir has used her name to garner wider support for HIV/AIDS in Malaysia. In 2010, UN Malaysia named her the Person of the Year for her achievements in “gender and women’s empowerment and in HIV/AIDs work both in Malaysia and internationally.” This year, Mahathir was awarded an honorary Doctor of Letters degree at Wawasan Open University (WoU) in George Town, Penang. There are about 80,000 people living with HIV/AIDS in Malaysia, according to UNICEF.
Turkey: Deniz Gökengin
Deniz Gökengin is the director of EGEHAUM, which in Turkish stands for “Ege Üniversitesi HIV/AIDS Araştırma ve Uygulama Merkezi” (Ege University HIV/AIDS Research and Practice Center). She has been an HIV/AIDS activist for over 20 years, and has been speaking on the disease when in Turkey it was still a very taboo subject. Today, Gökengin is considered an expert, as she has worked in many nongovernmental organizations as founding member, member or as a board member. For example, she’s currently the executive board member of the Society for AIDS and STI. As a professor of infectious diseases at Ege University, Gökengin has traveled all over the world to research ways to prevent the disease, affecting change beyond Turkish borders. There are about 7,000 people living with HIV/AIDS in Turkey, according to UNAIDS.
Afdhere Jama is the author of Queer Jihad: LGBT Muslims on Coming Out, Activism, and the Faith. He lives in the United States.