Pulitzer Center Update

HIV/AIDS: Stigma, Discrimination, and Indifference

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(L-R) Ruth Aliyu, 28, Mercy Wasa, 41 and Helen Momoh, 29, and (seated) Linda Alkali, 26, are part of a support group for HIV-positive pregnant women in Nigeria called "Mentoring Mothers." Image by Ameto Akpe. Nigeria, 2013.

“The codes are written so deeply into the fabric of society that it sometimes feels like there's no room to change. One way to break out of that cycle is to introduce the issue to a global audience, and hopefully this will be a chance to do that for them.” - Pulitzer Center journalist grantee Michael E. Hayden on the 2014 International AIDS Conference

Over the past 20 years, global initiatives from organizations like UNAIDS have helped to stem the tide of HIV/AIDS in many parts of the world, yet the death toll continues to rise. Many of the victims are not only casualties of the disease, but also of stigma, discrimination, and indifference.

The 2014 International AIDS Conference taking place July 20-25, 2014, in Melbourne, Australia, will center around the theme “Nobody Left Behind,” focusing on vulnerable populations that have suffered disproportionately in the global HIV/AIDS crisis. Pulitzer Center Special Projects Coordinator Zach Child will attend the conference, along with Pulitzer Center grantees Ameto Akpe, Daniella Zalcman, and Michael Edison Hayden, who will present their work on these marginalized groups.

Projects Featured at the Conference

As Akpe details in her project "Nigeria: U.S. Dollars and Dubious Results", pregnant women are one such group that has been disproportionately targeted by the virus due to culture, religion, and social stigma—many women are too afraid to tell their husbands they are HIV-positive. Poor implementation of counseling, testing, and treatment programs also contributes. According to the latest UN reports, women in Nigeria have the highest risk of Mother-to-Child-Transmission (MTCT), or vertical transmission, of HIV in the world. With Prevention of Mother-to-Child-Transmission (PMTCT) services, freely provided by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), the likelihood of vertical transmission is said to be reduced from 40 percent to 2 percent. As Akpe reports, however, less than 20 percent of pregnant Nigerian women have access to PMTCT services.

Lack of awareness of these programs, shame, and poor retention rates are, in large part, due to local transfer policies, whereby after receiving initial services, some women are transferred to the secondary health center in other localities to continue treatment. This policy leaves many Nigerian women to slip through the cracks and fail to receive life-saving services.

In Uganda, misconceptions about the HIV virus and how it spreads have existed since the first case was documented in the early 1980s, and social stigma and public outings have only exacerbated the problem. Zalcman’s project, "Kuchus in Uganda", focuses on the 2014 Anti-Homosexuality Act and how it has affected the LGBT community in Uganda. Increased prejudice among Ugandans and reduction of foreign aid due to this legislation have led to the shut-down of LGBT-oriented clinics, the spread of misinformation, and violence.

And, as a product of the Anti-Homosexuality Act, things won’t be getting better anytime soon. As Zalcman reports, the “act is especially terrifying not only for further criminalizing Uganda's LGBT population, but also for criminalizing their allies as well. [The act] means that non-profits can't distribute free condoms and lubricants (the most effective tools to lower HIV prevalence), and can't offer free HIV screenings to gay patients.” At present, an estimated 13.7 percent of men who have sex with men are HIV positive—around twice the national HIV rate.

Another population inordinately affected by the HIV/AIDS crisis is male-to-female transgendered individuals in India. Persisting cultural prejudices associated with the transgendered community in India has resulted in this minority group’s relegation to begging and prostitution as means of survival. Hayden and Sami Siva’s reporting on "India’s Hospital Crisis" describes how the Indian Government’s creation of the National AIDS Control Organization (NACO) has not been enough to support the transgendered community, in which even HIV-negative individuals have historically been denied medical care. According to recent data, the HIV rate among male-to-female transgendered individuals is upwards of 40 percent, and a transgendered woman living in India is theoretically 100 times more likely to have HIV/AIDS than a genetic male or female.

A major step towards ameliorating the problem, says Hayden, is to “bring attention to the cause for transgendered rights [in order to] help reshape attitudes about transgendered women in the long term which could have some influence in getting them out of sex work and into safer, better paying employment.”

Other Projects

A number of other Pulitzer Center grantees have also chronicled how the HIV/AIDS pandemic is being fueled by stigma, discrimination, and poor policy.

Pulitzer Center grantees Kwame Dawes, Lisa Armstrong, and Andre Lambertson’s project, "After the Quake: HIV/AIDS in Haiti", looks at the ways in which the 2010 earthquake affected the country’s health care infrastructure and subsequent effects on the spread of HIV/AIDS in Haiti. Prior to the earthquake, Haitian HIV/AIDS support organizations felt a sense of pride in their education and aid efforts, having reduced prevalence rates from about 9.4 percent in 1993 to approximately 2.2. percent in 2003. After the earthquake, however, this positive trend has been reversed: “Haiti is not getting better," said UNAIDS Executive Director Michel Sidibe. "It is even getting worse."

Another product of the "After the Quake" project was Voices of Haiti, a special production including poetry and stories based on reporting by Dawes and Lambertson. "Voices of Haiti" was also made into an e-book capping the multi-year project.

Dawes’ other major collaboration with the Pulitzer Center, Hope: Living and Loving with HIV in Jamaica, is a multimedia reporting project that includes an extended essay for the Virginia Quarterly Review (Spring 2008), two short documentaries for the public-television program Foreign Exchange, a collection of poetry inspired by his reporting, a performance of the poems set to music by composer Kevin Simmonds, and LiveHopeLove.com, an interactive web presentation that synthesizes audio and text versions of poetry, video, interviews, music, and photography by Joshua Cogan.

In an ongoing project with Lambertson, Shame: HIV/AIDS and the Church in Jamaica, Dawes reports on the shame culture that further victimizes homosexuals and individuals with HIV/AIDS in Jamaica.

Micah Fink’s project, "Glass Closet: Sex, Stigma and HIV/AIDS in Jamaica", focuses on the criminalization of homosexuality through “anti-buggery” laws and the devastating impact of the HIV/AIDS epidemic on Jamaica’s LGBT community. The perception of HIV as a “gay disease” has fueled the fire of homophobia, violence, and intolerance in Jamaica, where many believe that homosexuals are to blame for the epidemic. Public officials have called for a review of anti-gay laws, and the Jamaican government has launched an ambitious plan to widely provide free anti-retroviral treatment, but the epidemic continues to grow for men who have sex with men. Current estimates show that a third of these men in Jamaica are HIV positive.

Fink's film "The Abominable Crime" gives voice to Jamaicans like Simone Edwards, who survived an anti-gay shooting, and Maurice Tomlinson, a leading activist who was forced to flee the country after being outed. The documentary has gained international acclaim and been shown at dozens of film festivals, including most recently at the SASOD LGBT Film Festival in Guyana, the first screening for the documentary in that South American nation.

HIV/AIDS is a major problem in the Caribbean, affecting not only Haiti and Jamaica, but also a small, forgotten ethnic population in Honduras. The Garifuna are a group of Afro-Caribbean descendants of West African slaves living on the Atlantic coast of Honduras. According to the Inter-American Development Bank, this small community has one of the highest HIV rates in the Western Hemisphere, with a prevalence rate of 4.5 percent—five times the Honduran national rate. David Rochkind and Jens Erik Gould’s project "The Forgotten: HIV and the Garifuna of Honduras" shines a spotlight on a group long overlooked in the global conversation about HIV/AIDS, putting the people, not just the culture, at risk of dying out.

Another at-risk group that has been grievously overlooked is the large South African population without access to private healthcare. Despite the end of apartheid in the mid-1990s, the history of discrimination in South African culture is deep-rooted; persistent social and economic inequality has resulted in a major healthcare crisis. Over 75 percent of the population is in need of public healthcare, supplied by a prejudiced and inadequate system. As reported by student fellow Samantha Thornton, many of its clients are HIV-positive mothers.

In the Western Cape, there are stories of forced sterilization and HIV-positive women being denied reproductive rights. The stigma against these women further denies them education about their HIV-status, counseling, or life-enrichment programs. One program, in Grahamstown, South Africa, is attempting to change this. The Raphael Centre, staffed by HIV-positive and negative volunteers and employees, aims to support these women and educate them about the possibility of having HIV-negative children. According to Jabu, one of the employees at the Centre, the program is “designed to offer the time and resources the public clinics can’t.”

Without access to appropriate healthcare and services, at-risk groups often become even more vulnerable. Cambodia's HIV rate soared between the first detection there in 1991 and 2002, when Cambodia’s HIV rate became the highest in Asia. Steve Sapienza’s ongoing work on HIV/AIDS in Cambodia explores how government regulations such as the Suppression of Human Trafficking and Sexual Exploitation Law of 2008 have had limited success—reducing the number of brothels, but leaving sex workers increasingly vulnerable. The criminalization of sexual commerce has led to a decline in data on this group and a diminished ability to monitor or tackle the HIV crisis. All of these factors have led to the shocking reality of a HIV/AIDS infection rate almost twenty-times that of the general adult population in Cambodia.

Gregory Gilderman’s stunning work in both his multimedia feature for The Daily Beast, "Death by Indifference", as well as his Pulitzer Center project with Misha Friedman, "How to Lose a Drug War: Heroin, HIV, and the Russian Federation", have focused on the millions of unnecessary HIV/AIDS-related deaths that Russia stands to face due to the government’s apathy towards intravenous drug users, prisoners, and homosexuals. According to recent figures, over the past decade, the number of HIV cases has risen 41 percent. According to UNAIDS and public health experts, the Russian HIV/AIDS crisis can be linked back to the collapse of the Soviet Union and the subsequent establishment of one of the most widely-used heroin trafficking routes in the world.

This blog post was edited on July 16, 2014.