Carrying the Stigma of HIV

HIV rates in Cambodia peaked in the late 1990s at around 2%.  This was one of the highest rates in Asia and was considered to be a burgeoning epidemic which could easily have progressed in the same way as epidemics seen in many sub-Saharan African countries where rates have soared to as high as 20%.  In 2003 almost 4,000 new HIV infections occurred in Cambodia, reducing by 67% to 1300 new cases in 2013.  This suggests a successful public health campaign.  The overall prevalence rate of 2% in the late 1990s dropped to 0.7% in 2013, partly due to these public health interventions but also in part due to AIDS deaths of many infected individuals.  Death to AIDS in a country with very limited resources is an intolerable, painful and highly undignified experience for the dying victim as well as their family and the staff trying to provide some level of care.  It is made worse by the stigma often shown to these patients by family, community and even health care workers.

In mid December 2014, routine HIV screening of a few community members in a rural commune of Battambang Province saw some surprising positive results in people with no risk factors.  This motivated other family including spouses and children to undergo voluntary testing and further surprising results came to light.  Ultimately 1940 people were tested, 212 returning positive results.  In a country with an HIV rate less than 1%, this specific population have a prevalence rate of almost 11%.

As well as the very high prevalence rate, those testing positive are unusual.  For example, very young people with HIV negative mothers including 4yo twins, only one of whom tested positive.  The usual transmission routes of sexual contact, mother-to-child-transmission and injecting drug use have been ruled out.  Initial epidemiological studies have shown statistically significant high rates of injections or intravenous infusions having been administered to the HIV+ cohort.  This appears to be connected to a particular unlicensed doctor in one specific village, where 82% of all positive cases come from.  He allegedly told police that he sometimes reused needles and other equipment two or three times before disposing of them.  With a transmission risk of only 0.5% if exposed to an HIV infected needle or other hypodermic equipment, this does not explain the very high rate of infections in this population, even if every reused needle was tainted with the virus, which is highly improbable.  The doctor has been arrested and charged with murder (although I have not read that any cases have actually died yet), while investigations continue.

According to media reports this story has understandably and unsurprisingly left the community reeling in shock.  What I had not considered, was the possibility of repercussions beyond the community affected.  There remains a lot of stigma attached to HIV around the world and Cambodia, with it’s low health literacy particularly in rural populations, is no different in this regard.  It is very common for HIV+ individuals to hide their HIV status in order to avoid negative repercussions such as being shunned by family and community, losing employment and education opportunities, and facing prejudice in the health care and other systems.

I have mentioned previously that Phter Koma is in the throes of recruiting three more children to our home which currently accommodates 12 children while licensed with the relevant ministry to accommodate 15.  This is a lengthy process involving official processes and documentation to be submitted and approved.  Two of the children identified for recruitment are siblings currently living with their HIV+ mother who has no family of her own and has been shunned by her husband and his family.  Her own family with the exception of one brother have all died.  When we identified her children as needing our support she was living in a nearby district and very keen to send her children to us as soon as possible because of her difficult social circumstances.  Unemployed and reliant on casual work wherever she can find it, her children are unable to attend school as they follow her from one community to the next, looking for work in order to feed them all, and for somewhere to sleep each night.  Their treatment adherence is very low and they are at risk of developing AIDS.  Their mother has contacted us independently to beg us to take the children but we have to follow the correct protocols and have had to ask her to wait.

Most recently we approved the process to begin recruiting these children.  Subsequent telephone contact with their mother informed us that she has now moved to a distant province, looking for her brother.  This makes the recruitment process even more complicated than it already was, as the correct provincial departments must be involved.  Without having undertaken all of the formal assessments we cannot guarantee her the children will be admitted to Phter Koma.  But the only way she can justify returning to Kampong Cham Province is if we can give this assurance.  She moved because the community she had been living in, hearing of the Battambang HIV cases, became fearful and suspicious of how the virus might be transmitted and asked her to leave their community.  Obtaining anti-retroviral medications from the local clinic is likely enough to have alerted community members to her HIV status.  She again begged us to please take the children, citing intolerable living conditions, but until all requirements are met we cannot do this.

This is the practical reality of the stigma and adversity that Peope Living with HIV (PLHIV) face across the globe.

One thought on “Carrying the Stigma of HIV

  1. Carmel Tindall says:

    This post left me speechless. What can I say about such a sad story? Perhaps others feel the same a,s like me no one else commented.

    Like

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