HIV treatment update: the future

This article originally appeared in HIV Treatment Update, a newsletter published by NAM between 1992 and 2013.

The next issue of HIV treatment update, this summer’s edition, will be the last one.

HTU, 21 years old this year, is one of the oldest continuously published HIV newsletters in the world and has kept up a high standard of news, comment and reportage. It remains one of NAM’s best-recognised publications: but it has started to make less sense than in the past to dedicate increasingly pressured resources to a print magazine, no matter how high its production values.

We still have a loyal group of print-issue subscribers and, for subscribers reading this, we are grateful for your continued interest, your loyalty, and your suggestions and queries. From what we know (through the results of readers’ surveys over the years), many of you are of the generation that helped set up NAM and immediately benefited from it: people like me, mostly older gay men, infected in the early days of HIV, long-term survivors – or friends of those who did not survive. We’re a group who got into the habit of educating ourselves about the treatment and science of HIV at a time when rapidly acquiring such knowledge might be a life and death issue; you might learn about a potentially lifesaving clinical trial just in time, for instance.

Glossary

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

range

The spread of values, from the smallest to the largest. The inter-quartile range (IQR) only includes the middle 50% of values and measures the degree of spread of the most common values.

psychology

The study of the way people think, behave and interact. Psychological therapies are based on talking and working with people to understand the causes of mental health problems and develop strategies to deal with them. Psychologists have specialist training but are not medical doctors.

clinical trial

A research study involving participants, usually to find out how well a new drug or treatment works in people and how safe it is.

Two things have changed fundamentally since then: the nature of HIV treatment and the way people acquire knowledge.

These days, although HIV infection may still have serious health consequences, we know, essentially, how to deal with it. If you are diagnosed with HIV, even with a low CD4 count, you’re unlikely to have to do your own research into frontier science. If you come down with a rare cancer you may have to, but that’s not necessarily a health issue specific to your HIV (though we will continue to cover news on conditions strongly related to HIV, as in the hepatitis C treatment update in this issue). 

The crucial factor in stopping HIV infection in its tracks is access to HIV treatment. However, access to information is still central to living well with HIV. And access is overwhelmingly about social, economic and psychological circumstances. If you are a well-informed, well-connected, well-adjusted person who tests regularly for HIV, gets diagnosed in plenty of time, works with your doctor to choose the best treatment regimen to start on, and are able to look after your health more generally…then you are highly likely to live a normal lifespan. The people who still die early from HIV are most often the poor, the homeless, the refugees, the survivors of abuse, the depressed, the alone. And even if you are one of those people whose health hasn’t suffered, you may have concerns related to other, non-health-related, aspects of living with HIV.

That’s why HTU, starting about four years ago, consciously widened its coverage to include pieces on everything from housing (in this issue), employment and benefits, through the science of mind and of society (as in the piece on self-stigma in this issue), to psychology and  mental health, to faith and religion.

Broader coverage implies a broader audience. Although funded as a newsletter for people with HIV in the UK, we know that when HTU articles appear on NAM’s website, aidsmap.com, they are also read by patients, researchers, doctors and people working with HIV all over the world. To preserve the added value of a print subscription, we originally published articles online three months later. But once the decision was taken to publish them online at the same time as in print, it started making less sense to do a print edition for an ever-reducing group of print subscribers – especially as surveys also tell us that readers have easy internet access and are comfortable with finding their HIV and health information online.

This links to the second reason we have decided to change. It is not so long ago that when I wanted to do in-depth research for the background to a treatment piece, I had to go to the British Library, sit at a desk, and send for physical copies of articles to look at. These days that’s almost inconceivable; we’ve got so used to a world in which information is instantly available online that the idea of it hidden away on shelves deep underground sounds like something out of a spy thriller.

These days, the skill lies not in mining for the information you need, but in panning the gold from the gravel – distinguishing the flood of commentary, opinion, argument, axe-grinding and just plain crankiness from the trickle of stuff that tells us something new. This we have tried to do in HTU: draw together the kind of information that may appear as isolated news stories on aidsmap and elsewhere, and synthesise, summarise and look for the significance in them.

We’ve always tried to do this for treatments, but in a world where the big decisions and dilemmas in HIV are largely about more nebulous and difficult things like global funding priorities and human behaviour, this feels more important than ever.

So, while HTU may be ending, the type of features HTU carries will not be and we plan to expand the range of news features we write for aidsmap. The more wide-ranging and analytic pieces HTU has carried will have a prominent place there.

We look forward to your continued attention and interest as readers of an ever-developing aidsmap in this new world.

Best wishes,

Gus Cairns, Editor, HIV treatment update.