Epidemic of Fear

Martin Choo, in his essay for our first edition of AIDS Today, sums up how HIV is “the epidemic of fear”.

He makes the point that there have been “tremendous gains” with regards to science and medication yet for many people “scientific progress has had limited effect on their daily lives”.

“[The] realities of stigma and discrimination against people living with HIV remain stark. In my part of the world – the Asia Pacific region – even where treatment is available, there are many people who are still afraid to test for HIV. [This can be] because of the humiliation they face from some healthcare workers, or the stigma they encounter from members of the public who can guess why they are in the queue because of the way health systems are set up.”

Transgender sex workers in Malaysia face discrimination from authorities

Transgender sex workers in Malaysia face discrimination from authorities © Alliance

Strengthening health AND community systems

There is reason for excitement around some of these recent ‘tremendous gains’ as Choo describes them. Such as the results from a recent UK-based study called PROUD, which demonstrated the effectiveness of Pre-Exposure Prophylaxis (PrEP) amongst gay men. Taking PrEP every day, in pill form, is a HIV prevention option for people who are at high risk of getting HIV.

We also welcome the UNAIDS 90-90-90 treatment targets around testing, treatment and reducing transmission. The key thing about the UNAIDS targets is that it prioritises equity, which tallies with Choo’s observations. Scientific advances and treatment targets like these can help towards the ‘tipping point’ in reversing the rates of HIV, but only in conjunction with stigma and discrimination reduction.

As the 90-90-90 UNAIDS report states: “The world will not end the AIDS epidemic unless all communities affected by HIV have full and equitable access to life-saving treatment and other prevention services. In particular, the ambitious 90-90-90 target demands dramatic progress in closing the treatment gap…”
We believe supporting community responses is key to closing this gap.

Understanding community

Choo points out how the medical model is well understood, but the community response, which is essential to reaching this goal, is less definable. “When we speak of health systems most of us have an idea of what this means… We accept health test and take medications, even though we may not completely understand how medicines work."

“However it is much more difficult to define the concept of ‘community systems’…  For activists the term reflects the political identities that are forged when people are discriminated against. It captures how they find kinship through the experience of being kept at the margins of society, through being ostracised.”

This kinship, or support, is essential to a person’s well-being, which goes beyond ancillary, medical care. “The community system has the ability to prop up, hold hands with, entertain, pray with, feed and clothe… No hospital or clinic, however well equipped, can do this,” says Choo. He highlights how the World Health Organization’s definition of health supports the importance of this, defining health as a “state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

To ensure the well-being of people living with HIV, inclusive community responses must be adequately supported through the new sustainable development goals (SDGs) which replace the Millennium Development Goals at the end of 2015. Read more, including our position on post-2015 health here in: Health in the post-2015 Development Framework

Write us in!

At the World Health Assembly in Geneva next month, we’re launching a new campaign – Write us in! – to ensure the new ‘universal health coverage’†† goal  is fully inclusive. Unless discriminated groups are explicitly written in it won’t live up to its ‘universal’ description and could legitimatise further discrimination at country-level, and continue to fuel fear and limit access to services, in the way that Choo has described.

Martin Choo

Martin Choo is a medical science and community-based researcher. You can read his essay and biography in full here.

†    90-90-90 targets: By 2020, 90% of all people living with HIV will know their HIV status. By 2020, 90% of all people with diagnosed HIV infection will receive sustained antiretroviral therapy. By 2020, 90% of all people receiving antiretroviral therapy will have viral suppression.

††   The universal health coverage goal is goal 3.8 within the new sustainable development goals. See the full draft text here: https://sustainabledevelopment.un.org/sdgsproposal