A forgotten generation: Long-term survivors’ experiences of HIV and AIDS – by Judith Mary Sagar

(Kindle Edition £7.52) (£16.99 paperback) published (26 Nov 2013) approximately 447 pages

81+D1sN0VGL._SL1500_It’s way past time that a history of HIV were compiled from the memories of those who know it best: the long term survivors. Unfortunately this book is not it.

Because of an attempt to de-clutter the bookshelves and the difficulty I have in holding large books comfortably I made the switch to Kindle at the beginning of this year and am re-discovering the joy of reading again: so many words, so little weight! I mention this because “A Forgotten Generation” isn’t, like many Kindle books supplied with page numbers, or an x-ray view of the text, although it does have text to speech capabilities.

The bulk of the book is based on interviews that took place in 2002, so despite the author’s attempts to place a more modern gloss on her text, she fails. In 2002 we’d seen the failure of the first generation of drugs, the beginnings of success with second generation drugs (but not their subsequent failure) and the third, current, wave of drugs were just becoming available.

Even ten years ago we were still taking drugs that we knew were damaging to our bodies, but were keeping us alive. ddI, for example is only mentioned as a horsepill that needed to be crushed and mixed with apple juice to make a vomit-inducing drink. Protease inhibitors are new territory and drugs like truvada, the back-bone of many combinations is still a couple of years in the future.

Our attitudes, whether to our carers, our medication or our illness was also very different in 2002. It speaks volumes that each chapter ends with a series of questions to the reader about how they react to the material in that chapter. Each question is asked as though the person being questioned is HIV negative. We, the people living with HIV, are objects of study.

There are some crucial medical errors in the text: how come people were having HTLV3 (Human T-cell Lymphotropic Virus type 3) antibody tests at a point when HTLV3 was though simply to be an ineffective passenger virus? Why the lack of mention of LAV (Lymphadenopathy Associated Virus)? LAV was found to be the causative virus is 1984 and the following year it was realised that it was the same virus as HTLV3, at which point the virus was renamed HIV. At one point HTLV3 is named as a “precursor” virus to HIV, whatever that means.

At another point we are informed that lipoatrophy is simply a misnomer for lipodystrophy (or it may be the other way round: I’ve spent too much time reading and not enough time discovering how the Kindle works, especially as regards. I beg your forgiveness). However, although the two conditions are related, they are distinct and have different symptoms.

Cryptosporidium is a bacterium, not a disease: the disease it can cause is cryptosporidiosis. The “female condom” was/is called a Femidom, not a Femidon. The condition caused by candida albicans is usually referred to as thrush, not thrust. The text is littered with unnecessary capitalisations: most illnesses and a number of medical specialities are invariably capitalised. Does one see a Cancer specialist or a cancer specialist?

The author frequently leaves twee little messages to the interviewees (or “story-tellers” as she prefers to call them), thanking one for keeping her in winter reading, or urging another to “keep on being spontaneous!”

The book smacks of an abandoned work that has been resurrected in this new age of self-publishing. A few remarks here and there within the main body of the text pretend to bring it up to date, but fail, especially when they’re encountered by someone who was there at the time, as I was.

Today’s world is very different from that of 2002: the clash between the author’s comments and those of her “story-tellers” grates. We still need a book, a history, written about the eighties, nineties, and beyond, but it needs to be one in which we are in control. Our stories as long term survivors are important: we have survived one of the most horrific epidemics the world has seen, and it’s an epidemic that continues today.

I can only see this book as a cynical cash-in attempt.



  1. erratum:

    (or it may be the other way round: I’ve spent too much time reading and not enough time discovering how the Kindle works, especially as regards. I beg your forgiveness)

    Sometimes words go astray between my head and my fingers. After “regards” please add “marking text for future reference”.



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