Manageable… for some
Since my diagnosis last year I have been in touch with many so-called HIV
support agencies and become sick and tired of the overuse and frankly offensive
definition of HIV as a ‘manageable condition’. Those who describe
it as such tend not to be HIV positive themselves, but have picked up this
catchphrase and use it in some misguided belief that it perhaps sounds more
politically correct.
As I am on combination therapy, I am fully aware of the importance in maintaining
my health, but it comes at a cost and brings with it its own set of problems
and nasty side effects. If health professionals and HIV services keep banging
on and being so up-beat about HIV being ‘manageable’, they will
send out the wrong message to people, and ultimately trivialize the illness.
I often read letters in PN from people with HIV who say they feel fine and
are happy working. Sadly, I am not one of those well enough to work and feel
that I should receive benefits that I’ve worked all my life to pay for,
without being made to feel as though I’m a scrounger. Please let us
keep some perspective on this serious disease and not fight with each other
by making inaccurate generalisations that, at best, only give politicians
the ammunition to pressure people back into work before they are well enough.
name and address supplied
Support for Stella
I was touched by Stella Zuze’s story
[PN 112, May 2005] and would like to let her know she is not alone. Many of
us are labelled ‘health tourists’ as we struggle to survive with
HIV in government hostels. I am seeking asylum in Ireland. I have patiently
waited for 11 months to be called for interview. I get 19 euros a week from
the social welfare and wonder how I have managed to survive. I can only do
two days a week voluntary work since I cannot afford the transport to work
every day. I also cannot afford a private solicitor to push forward my application
process and write letters to the Department of Justice, even for the first
interview. Being an asylum seeker and living in a hostel is like being in
prison; you have to experience it to know what it’s like. The psychological
effects are hard to express. All we do is wait until some immigration officer
decides our fate. Meanwhile, I would encourage others to seek support from
local HIV organisations, because being able to speak freely to someone who
you share nothing in common with but your HIV status is better than hiding
behind closed doors. To all of us going through this difficult phase, take
heart and be extra strong because everything that has a beginning will eventually
come to an end.
Anne Githinji, Dublin
Give us the chance to live
I write in support of Stella Zuze’s article. So many of us are in the
same situation and would like the right to live a bit longer. My appeal to
stay was refused because the Home Office says HIV drugs are available in Uganda,
but the reality is that they are only available to those with money. Some
of us simply can’t afford them. If we are deported it is like sentencing
us to an early grave. If I am deported, where will I stay? Jobs are hard to
find. Getting into the system is so difficult. If we were allowed to stay
and work, we could contribute to the economy and pay for the drugs. They told
me it was not their fault that I was HIV positive, so the British government
had no duty to look after me. I know it is not their fault, but no one desires
to be affected, especially when you see the way people die in the most shameful,
painful way. We did not want to be sick, but it happened and we can’t
look back. All we ask for is a chance to live a bit longer. If we are strong,
let us work so that we do not get the medication for free. But sending us
back home will be sending us to an early grave.
Sanyu Lilliau, Surrey
Open letter to the Crown Prosecution Service
In your letter [PN 113, June/July 2005] about the prosecution of people for
reckless transmission of HIV, you said the Crown Prosecution Service (CPS)
seeks the views of many different groups. I find this astonishing. The CPS
pointedly failed to consult anyone living with HIV or working in HIV or public
health before engaging in a number of prosecutions. It is only in response
to a number of HIV agencies banging down your door that you agreed to develop
a prosecution policy in this area which will then go out to consultation later
in the year. This is hardly the community interface your letter conjures up.
You have categorically refused the clear request to cease current prosecutions
while consultation about prosecution guidelines takes place. I wonder, does
the CPS always exercise its “serious responsibility in establishing
the law in relation to new offences” by charging into complex social
and public health issues without expert advice, only engaging with HIV agencies
once you have a few convictions under your belt? Nothing that you have said
or done to date undermines my impression that the CPS is using the stigma
associated with HIV to secure convictions against marginalised individuals
with flagrant disregard for the public health and interest.
Dr Catherine Dodds, Research Fellow,
Sigma Research, University of PortsmoutH
Skewed calculation
Thanks for the interview with Crusaid chief executive Robin Brady [PN 113,
June/July 2005]. It was diplomatic and well written, but was ‘dynamic
chief executive’ a play on words I wonder? The figure you quote of 52
per cent
of income spent on administration is wrong. I have checked on my calculator
and believe the correct percentage of Crusaid income spent on admin is in
fact more than 60 per cent. As someone who gave seven years of my life to
Crusaid, I am unhappy about the way the charity has gone and the way they
have treated former members of staff and volunteers.
name and address supplied
Fleet of fancy
I just wanted to commend you regarding Russell Fleet’s column in the
May 2005 issue [Hard-nosed Change of Haart, PN 112, May 2005]. It is heartening
to see that after so many years of living and coping with his diagnosis, his
health can be affected by a positive, life-affirming state of mind. Rather
than give in to depression and to the gloomy possibility that year after year
he would become more resistant to medication, Russell took the risk and became
willing to face his situation, whatever the outcome. And the outcome was very
close to being miraculous. I look forward to his next article.
greg, in the us
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