There really isn’t enough space here to
detail all of the changes – many, but by no means all, improvements – in the
way we live with HIV.
As we live longer with HIV – and with
around 7500 more of us being diagnosed each year – HIV clinics all over the
country have had to cope with increasing numbers of patients in the face of
stagnating (or even reduced) funding. Some of the solutions have been creative,
and even positive – annual CD4 counts are now a possibility for those of us who
are on stable, successful treatment, suggesting we are becoming less
medicalised than ever before (HTU
177, June 2008). On the other hand, the cost of treatment, which eats into most
of the NHS HIV budget, is becoming more of an issue. Now that the government
has announced the removal of its ban on patients paying for drugs deemed too
expensive for the NHS,6 will there come a time when we have to pay
top-up fees to access more expensive antiretrovirals than the NHS will pay for?
Even now, access to treatment and care
remains an issue for some of us – those who attempt – and fail – to seek a
knowledgeable and trustworthy GP to prescribe non-HIV medications (ATU 158: July 2006); those who are
unable to find a dentist because of discrimination against HIV-positive
patients (ATU 161; November 2006);
and, most sinister of all, those of us who are perceived to be a ‘treatment
tourist’ and denied any NHS care (HTU
181; November 2008).
When I
first started editing ATU, the idea
of ageing with HIV, and of facing the kinds of non-HIV illnesses experienced by
our older HIV-negative counterparts – particularly cardiovascular disease,
non-AIDS cancers, as well as liver, kidney and bone disease – was in its
infancy. Today, these are some of our greatest health concerns and challenges.
And as
the length of our lives increases, so do concerns about quality of life issues,
notably around mental health. These issues have featured heavily in the
newsletter over the past five years. In ‘Understanding
depression’ (ATU 168: July 2007), Dr
Pepe Catalan, consultant psychiatrist at London’s
Chelsea and Westminster Hospital,
told us that “Although we find that HIV often is a trigger, it’s not always the
main problem: often HIV-positive people have all types of unresolved issues.”
The longer we live, and the less we focus on simply staying alive, so those
issues come to the fore. I know this only too well from (quite recent) personal
experience!
The
importance of our sexual and reproductive health has also been highlighted in
recent years. I’m proud to have represented the HIV community during the
development of the first-ever British HIV Association (BHIVA) guidelines on the
Management of sexual and reproductive
health (SRH) of people living with HIV infection, which were finally
published in September 2008.7
They
come at a time when gay men with HIV are also facing additional sexual health
concerns, notably syphilis, LGV and sexually transmitted hepatitis C – all of
which have been covered here in-depth over the past five years. The guidelines
also finally recognise that many men and women with HIV want to be parents and have reproductive
rights, although accessing assisted conception services is still not easy.
Increased conception options are one of the
reasons why Swiss HIV experts issued their vitally important statement in
January 2008 about the effect of treatment on HIV transmission, which we examined
in-depth in April 2008 (HTU 175). The
impact of the ‘Swiss statement’ is only just being felt, but the idea that
treatment can be used as a prevention tool has already gained support at the
highest levels (HTU 179,
August/September 2008).
Many other areas of living with HIV aside from
HIV treatment – notably around money and work issues and HIV and the law –
still require much more attention. Despite hard-won protection against
discrimination in the provision of goods and services (thanks to the revision
of the Disability Discrimination Act to include HIV from the point of
diagnosis, in 2005), the stigma of HIV continues to haunt us, deeply affecting
our relationships with ourselves, those around us, and society in general.