Edwin J Bernard is a former editor of HIV treatment update, and co-ordinator of the HIV Justice Network.
thoughts on the occasion of the final ever issue of HIV treatment update,
writing about HIV for more than 25 years, for about as long as I’ve been
diagnosed. My earliest articles were about cultural responses to AIDS. It was
my own battle with the virus that led me to become a community-based
treatment writer and advocate.
During a year-long ‘treatment holiday’ in 1999, as I thirsted
for enlightenment about ‘salvage therapy’ options, I devoured scientific
and community journals – AIDS treatment update (as it was then known) amongst them. I soon became an
‘expert patient’ collaborating with my HIV clinician to put together
the miraculous, experimental combination that brought me, Lazarus-like,
back to life.
Ten years ago I became the third editor of AIDS treatment update (ATU), and those experiences informed
the early direction of my tenure. I had little inkling that we were at the
cusp of a paradigm shift. Today we rarely, if ever, hear the terms,
‘treatment holiday’, ‘expert patient’, ‘salvage therapy’ or ‘Lazarus
As new and better (if not cheaper) drugs emerged from the pipeline, as
a younger generation of people living with HIV and newly
diagnosed migrants from high prevalence countries joined us ageing
long-term survivors, as changes in the NHS began to threaten the
‘ring-fenced’ HIV sector, the concerns of ATU readers became less medical
and more social.
During my five years as editor, we finally understood that HIV treatment
not only promised the possibility of a ‘normal’ lifespan, but thanks to
the ‘Swiss statement’, it could also be
a powerful and empowering prevention tool.
As ATU became HTU, and the focus moved to living (as opposed to surviving)
with HIV, the newsletter not only covered HIV treatment but also aspects
affecting our quality of life, such as: ageing; improving our mental
health; striving for sexual and reproductive health and rights;
coping with money problems; and dealing with getting back to work and/or
holding down a full-time job.
In October 2003, the same month I took over as editor, Mohammed Dica
became the first person in England to be successfully prosecuted for
‘reckless’ HIV transmission. It is particularly ironic that just as we
began to ‘normalise’ HIV, and understood more than ever how to prevent new
infections, we started to criminalise HIV transmission.
Today, HIV can be a chronic, manageable condition but it is also
politicised and stigmatised. It is the stigma of HIV that continues to be
our greatest challenge. It affects our relationships with ourselves, our
sexual partners, our families, our peers, and with society at large.
Here and abroad, HIV-related stigma – and the laws, policies and practices
influenced by it – threatens much of what has been achieved for people
with HIV but also the promise of an “AIDS-free world”.
It used to be that the best we could be offered was to die with dignity.
Now, in order to live with dignity, I'm working to ensure that we fight
inappropriate and overly broad laws and policies that regulate, punish and
control people with HIV. Our collective future depends on a new
generation of activists focused on overcoming stigma – and its associated
political apathy – with an evidence-informed, human rights-based approach.