Meeting the challenge of stigma in Iran

A series of articles by guest writers for World AIDS Day Part of AVERT's World AIDS Day 2012 campaign, ‘Reflections on the Epidemic’ are a series of articles by guest writers. Our guest writers range from global leaders, writers, experts, activists, physicians and people personally affected by HIV and AIDS; and they represent various countries, experiences and backgrounds from all over the world. We are grateful to all our guest writers for their effort and the diverse and insightful viewpoints that they contributed to the world’s response to HIV and AIDS. We will be re-featuring these articles over the next few weeks on a weekly basis. Browse through this week’s featured articles, and see the full list below.

AIDS is a pandemic disease that in its first years spread quickly around the world.  In Iran, as in many places, the disease was treated with secrecy, stigmatisation and denial, and little attention was paid to its treatment and prevention.  As a result of this, the disease spread rapidly and become rampantly deadly in the early years following its emergence in Iran.

Our work related to the AIDS epidemic began in our hometown, the small historic city of Kermanshah located in the Kurdish region of Iran.  The new findings about AIDS had already attracted the attention of Kermanshah’s Iranian Parliament Member, who himself was a highly educated physician.  In 1997, he had managed to convince the parliament to fund the construction of a hospital specialising in HIV/AIDS in Kermanshah.  Unfortunately, while his proposal was accepted by national officials, local people protested the project and he was unable to move forward.  Due to the stigmas and misunderstandings, the locals feared that if the hospital were built Iranian people from other provinces would come to associate Kermanshah with disease, and would not want to marry or do business with people from their city.  This project ended disastrously when this Member of Parliament was not re-elected, angry demonstrators ransacked his office, and the funds reverted back to the Ministry of Health.

In 1999, we published a report from our study on the HIV epidemic in Tehran.  After graduating from medical school and completing our internships we decided to focus our response to the HIV/AIDS crisis in our own hometown.   It had become clear to us, from the example of the well-intentioned but failed attempt by this Member of Parliament, that the best way to reduce suffering and the spread of the disease was through community based harm-reduction programmes in affected populations.  With this in mind, we began developing an HIV treatment and prevention pilot programme in the very same city of Kermanshah.

The problem with the approach of the aforementioned Member of Parliament was common; physicians and policy makers were pushing for a national-level response, but were often met with insurmountable resistance from the public.  In contrast to this kind of top-down approach, we began our project at the heart of the epidemic by working directly with those affected by the disease.

“the clinic was the place that they felt most comfortable, and so they were there just to experience that sense of acceptance and community”

We focused our pilot project on three target groups that we identified as high-risk – persons already infected with HIV/AIDS, injecting drug-users, and people at risk for sexually transmitted infections.  We provided treatment, care, counselling, social support, and education through what later became known as our Triangular Clinics.  We found that the patients needed more than just medical attention; they also suffered from depression, isolation, fear, and humiliation.  Based on this needs-assessment we began offering counselling, held social events, helped family and friends to better understand the disease, and even did some “matchmaking” to encourage relationships between HIV and AIDS infected people.  We believed that each of our patients had the basic human right to health, but moreover, we believed that each had the right to the enjoyment of such health.  We treated each patient with the dignity, respect, care, and appreciation they deserved.  This was not lost on the patients:  One day we passed by the clinic on a Sunday and we found a large group of our patients sitting outside, despite the fact that we were closed on Sundays.  They knew this, of course, and they explained that the clinic was the place that they felt most comfortable, and so they were there just to experience that sense of acceptance and community.

Based on the success of our early clinics we began expanding further.  We had built trust, legitimacy and respect among our clients, and we used “peer notification” methods to spread awareness about our programmes; our patients shared our work throughout their networks, and encouraged others to join.  At the beginning we had only a few clients per week, but their numbers increased rapidly and soon we were attracting more than fifty patients per day.

We also used peer-notification methods throughout the broader community to help build support for our programmes and reduce the stigma associated with HIV/AIDS.  We reached out to the more flexible religious and community leaders encouraging them to advocate within their larger peer groups.  In these ways we slowly worked to inform the population to help lift the stigma, and provide better care for those living with HIV/AIDS in these communities.

The success of the triangular clinics in Kermanshah encouraged Iran's health care system to expand the model throughout the country.  In 2003, our programme was recognised by the World Health Organisation as the best-practice model in 2003. By the end of 2005, there was at least one triangular clinic in each province in Iran.  All of this attention allowed for yet another expansion of the project, this time on an international scale throughout the Middle East region.

By emphasising the needs of the target group, building community support, and expanding our programmes organically from a solid foundation of success, we managed to make an impact.  With this method, we hope to uphold the right to the enjoyment of health for those living with HIV and AIDS in Iran and beyond.  To do this, we must all be collectively recognise the enjoyment of health as a fundamental human right, we must treat all people with understanding, respect, care and kindness, and we must believe in our ability to make a difference.

Drs. Kamiar and Arash Alaei are brothers and experts on HIV/AIDS, International Health and Human Rights. They co-founded the first "Triangular Clinic" for the target groups drug users, HIV patients, and STD cases in Iran documented by the WHO/EMRO as a "Best practice model" in the region. They co-authored Iran's National Strategic Plan for the Control of HIV/AIDS 2002-2007. Among other awards they received the first award for leadership in health and Human Rights by PAHO/WHO in Dec.2011, and Inaugural Elizabeth Taylor Award in Recognition of Efforts to Advocate for Human Rights in the field of HIV presented by Actress Sharon Stone and sponsored by The Foundation for AIDS Research and the International AIDS Society in July 2012.

For further information on harm reduction, see AVERT's page.

Images: 'Iran rally on the steps of San Francisco City Hall,' copyright: Steve Rhodes. 'Dr Kamiar Alaei' and 'Dr Arash Alaei, courtesy of Kamiar Alaei.