January 2017 is an important month for AUA. It’s our 15th birthday! Our organization has come a long way since 2002, when AUA first started as an informal peer support network for people accessing ARV (antiretrovirals) at the Khmer Soviet Friendship Hospital in Phnom Penh. Then run by a small group of volunteers, AUA now employs 43 full-time staff and has more than 2,000 Members. Our Members are involved in all levels of our organization, from the Field Teams that work in our clinics and hospitals, to the Board that oversees our strategic development.
We have expanded operations to eight additional sites in Phnom Penh and Kampong Cham province, where staff now serve well over 7,000 people each year. Our programs still have a strong focus on psychosocial support, but our approach to care, treatment and prevention has evolved in-line with Cambodia’s HIV/AIDS response and importantly, patients’ changing needs. One thing that has remained constant throughout AUA’s history is the values and principles that inform our work. Mutual support, a holistic view of health and a desire to empower people living with HIV to be leaders in their community continues to underpin our activities today.
To explore the origins of AUA’s approach, we want to take you back to the Khmer Soviet Friendship Hospital in January 2002, where our story begins…
Remembering the early days of HIV in Cambodia
Cambodia’s first cases of HIV were diagnosed in the early 1990s, but it wasn’t until 2001 that ARV therapy was made widely available. The Khmer Soviet Friendship Hospital (KSFH) in central Phnom Penh was one of the first public health facilities in the country to offer ARVs. Many people travelled long distances from villages and towns for testing and treatment. HIV spread quickly in Cambodia, with UNAIDS recording 23,000 new infections in the year 1995 alone. There often wasn’t enough medication available at KSFH to meet this high demand, and doctors were forced to prioritize the very sick or vulnerable.
Cambodians with the means to could still go to a private clinic to buy expensive ARVs imported from overseas. For everyone else, medication and treatment at KSFH was facilitated by Médecins Sans Frontières – France (MSF-F). At that time, people living with HIV thought of MSF-F as a second mother or father; by bringing ARV treatment to those who needed it most, MSF-F gave many Cambodians a second chance at life.
ARV coverage in Cambodia gradually improved, but at KSFH, resources were stretched thin and staff often didn’t have enough time to provide counseling. Social support services were very limited in Cambodia, both inside and outside the hospital. With little understanding of their illness or how ARVs worked, many people stopped taking their medication.
Public awareness in Cambodia about HIV/AIDS was very limited at this time. Stigma and discrimination towards people living with HIV and their families was a very serious issue. For some, fear of discrimination was so strong that they avoided getting tested, even if they suspected they might have been exposed to the virus.
Those who did test positive and went on to access ARVs were often ostracized from society as a result. Many people were abandoned by their family or friends; others kept their status a secret and as a result, had nowhere to go for help or advice.
Peer education: A new model of mutual support
It was these struggles that first brought a group of patients together outside the treatment area at KSFH. Their casual discussions about HIV, ARVs and general issues affecting their lives soon turned into regular meetings. More and more people joined the group to talk about their concerns, share their victories and have their questions answered. This is how the idea for peer education and mutual support at KSFH first blossomed.
Soon, leaders began to emerge from within the group and facilitate discussions around agreed-upon topics. The model soon proved a success; peer education seemed like an effective way to reach the newly diagnosed and encourage existing patients to adhere to their treatment. MSF, still active at the hospital, recognized the value in this approach and decided to provide the group with a small amount of funding.
The group called themselves ARV Users Association, or AUA for short. Now as then, AUA was an independent alliance of people living with HIV.
Life after diagnosis
Those first volunteers who gave up their time to lead group discussions at the hospital did so without any concern for money. Their greatest desire was to share advice and to inspire others to take good care of their health. Since all volunteers were HIV-positive themselves, they could draw on their own personal experiences. This was important, as many patients found it difficult to talk to or trust someone they couldn’t relate to.
One of the key messages AUA shared was that ARVs, if used correctly, could give you a new lease on life. Many people in Cambodia viewed HIV as a death sentence, and the stress and depression associated with a positive diagnosis left many without the will to live. AUA volunteers soon recognized that if people could understand their illness and their medication, they would be motivated to look after themselves.
As one former AUA volunteer described, “It’s like a tree: If you were diagnosed, you were nearly to die; you lost your flowers and your leaves. But when you started on ARVs, it was like throwing water on the tree: new leaves and new fruit started to grow.”
By 2003, just 12 months after group discussions began, AUA employed six staff: a coordinator, an assistant, and four peer volunteers. MSF-F provided a daily allowance to cover transportation costs, but staff continued to work without a salary. Soon, AUA registered with Cambodia’s Ministry of Interior and began to put more formal administrative structures in place. Staff acquired a small office inside KSFH, a new base for their operations and a quiet place to meet for confidential counseling sessions.
AUA was introduced to the French NGO Solidarité Sida in 2004. The financial support they provided was enough for AUA to develop its programs and start paying staff a salary. Our relationship with Solidarité, AUA’s longest donor, continues to this day.
After almost a decade, MSF-F withdrew from the Khmer Soviet Friendship Hospital in 2008. Before they left, MSF-F assisted AUA to set up a field office in Kampong Cham Referral Hospital, where MSF-F had also been working. This was a significant vote of confidence in AUA’s abilities. With the endorsement of MSF-F and support from Solidarité, AUA started to transition towards financial sustainability.
Over the years that followed, AUA attracted more support from other international donors as well as praise from the World Health Organization and others for its innovative approach to psychosocial care. AUA continued to expand its operations, culminating with an invitation to provide counseling to HIV-positive prisoners in Phnom Penh’s Prey Sar Prison in 2012.
In 2014, AUA was among the first responders to the HIV outbreak at Roka Commune, Battambang. When Cambodia’s National Center for HIV/AIDS, Dermatology and STDs decided to open three new HIV treatment sites in provincial Cambodia in 2015, they invited AUA staff to contribute their expertise. AUA also entered three HIV/AIDS burden sites to assist with active case management and record keeping. Through this project, made possible with a grant from USAID, AUA was able to reach people in some of the country’s most remote and underserviced areas. AUA successfully handed the project over to local teams after 12 months. By January 2017, AUA was operating in nine sites.
Then and now: What’s changed in Cambodia?
Just as AUA has undergone major organizational changes, a lot has changed in Cambodia over the past 15 years. Cambodia has developed a robust response to HIV/AIDS that has led the country to meet many of its own targets – and global goals – ahead of schedule.
From AUA’s perspective, access and adherence to ARVs has improved dramatically. New medication regimes offer patients more choice. Thanks to AUA and other community-led projects, people are more likely to receive the information and support they need to take control of their own health.
Attitudes towards HIV/AIDS in Cambodia have also shifted. Discrimination has decreased as knowledge about HIV and how the virus is transmitted has improved – in part thanks to public awareness campaigns. A vital part of this shift also comes from people living with HIV gaining the confidence to disclose their status and advocate for their rights.
The introduction of HIV/AIDS Law was another major step forward for the country. With less fear of discrimination and better access to confidential counseling and testing, most HIV-positive Cambodians now know their status.
With the right medication and support, people diagnosed with HIV in Cambodia today have every chance to lead a full life. As one former volunteer put it, “You can tell people you have HIV and they won’t believe you. Now, some HIV-negative people are marrying HIV-positive people and starting a family.” This is an important marker of social progress.
While Cambodia is well on its way to eliminating HIV transmission, there are still challenges ahead for the estimated 73,000 people living with HIV today.
Where to from here?
Our team is committed to building on our 15 years of experience to continue providing high-quality support to people living with HIV. Along with new projects in advocacy and human rights, we will continue to focus on psychosocial counseling, triage and delivering targeted programs for vulnerable populations. AUA’s future objectives are set out in our new 5-Year Strategic Plan, which will be implemented in 2018.
AUA’s work would not be possible without support from our former and current donors. We would like to thank Médecins Sans Frontières, Family Health International, Marc Foundation, USAID, UNAIDS and Asia Catalyst for their financial support and guidance over the past 15 years.
We would especially like to thank our current donors, Khana/Flagship-USAID and Solidarité Sida, for your continued support. AUA has grown and flourished as a direct result of your investment. We look forward to continuing our partnership in 2017, our 15th anniversary year, and into the future.