Why is tackling HIV stigma so hard?

The impact it has on the lives of people living with HIV is well documented.  A lot of people living with HIV report feelings of shame, guilt, low self-esteem and self-blame; and some experience verbal harassment or threats.

Stigma should be our top priority, yet we have not identified concrete strategies for reducing it.  So why do we find stigma so difficult to tackle?

UNAIDS describes HIV stigma as ‘negative beliefs, feelings and attitudes towards people living with HIV’ and as a ‘process of devaluation’ of people either living with or associated with HIV and Aids… Stigma is a construct of a range of psychological, social and societal factors, for example, stereotypes, cultural norms, economic circumstances and power structures.

Stigma can be experienced in a range of social environments. Individual—how the individual feels about HIV, how they understand and respond to it. At the interpersonal and community level where stigma is between individuals, including family, friends, social networks and acquaintances. Organisational stigma is within institutions such as the work-place, schools and hospitals.

Societal stigma across society as informed by cultural norms and attitudes.  Public policy is stigma as reflected in national and local laws and policies— these will often be related to cultural values.

Much of the problem relates to the nature of stigma itself.  It is a complex beast, constructed from many elements.  It is dependent on a range of social and economic factors.  These can include the economic status of affected groups, existing prejudices , such as, racism and homophobia, and stereotypes.  Stigma is also self-perpetuating; the things which help create it in the first place are often then made worse by it.

If understanding stigma is complex, then addressing it is even more so. Even when we do find a way of combatting stigma in one place—how do we translate it to another? Will an intervention that works in a hospital in India work in a hospital in Malawi?

One of the major challenges for projects designed to reduce stigma is how to prove they work. We need to develop more consistent approaches to measuring stigma if useful comparisons are to be made.

We also need to know that any reduction in stigma is actually down to a specific programme.  This is very difficult when stigma is affected by so many factors.  To learn from a programme we need to understand what aspects have been effective at challenging stigma and why.  But evaluation comes at a cost.  How can grassroots organisations demonstrate the effectiveness of their action on stigma if they aren’t funded to do so?

To meaningfully address stigma we need high-level policy commitment and financial investment.

—Part of this article is taken from Shaping Attitudes Challenging Injustice Changing Lives by Nat Manny.