All By Ourselves: The Death of HIV Services! 

Originally published in the September 1999 issue of “Talkabout” under the title “Dream Chasing”. The intro below is a 2017 addendum!

This is an ongoing problem even now, but this particular rant is from around 1999! I had received an email from Pene Manolas to say that, due to funding cuts, the Colao Project was to be wound up! Our only treatment management service was closing! I was furious! In the early days of HIV, ACON provided helpful and necessary services, giving peer support to those fighting the hard battle with HIV, helping people transition onto pensions and housing subsidies, legal services, some counseling, and supporting services such as MAG (Mature Age Gays). But as time went on, they became greedier and more controlling. They hated not having control of the whole sector (along with Community Health…they were both tarred with the same brush!), so if a service wasn’t being offered under their own roof, the service would suddenly find itself without funding, so matter how well used and useful it was! Colao provided guys who survived AIDS, and found themselves on the new antiretroviral treatments, strategies for coping with their situation, how to remain compliant with the huge pill intake they had (in the day), and ways to get their lives back on track! At this time, ACON was not providing this service, and there were only vague rumours of them starting up a similar progeam! So, in the interim – providing another service was to start up – the guys who would have benefited from a service like Colao…had nothing! Once again, as so often happened in those days, they were left to fall through the cracks! The HIV sector here were always well behind in service provision, and took excessively long periods of time to grt things up and running – if they happened at all! There seemed to be plenty of money to pay excessive numbers of staff, impressive CEO salaries, and advertising campaigns that were often off the mark, irrelevant or flogging tired and long dead practices…but for the clients, the guys on the street fighting the real battles, there was little to nothing! When I was spewed out of Prince Henry hospital mid-1996 after a life-altering near death experience…nothing had been established to help me deal with a return to the world of the living! No 24-hour counseling services, no treatment management services, no one to advise me on options regarding work or education choices, housing needs etc. Considering that there were always knowledge of what was to come, our service sectors were never prepared for it, and again…by the time some of the needed services were established, many had – again -fallen  through the cracks, left floundering to sort shit out for themselves. Even when services were eventually established, they often just repeated the services already covered by then defunct groups (probably also defunded!). Return to work services were a good example, with the several incarnations of these not really helping people to make choices regarding future life supports, but rehashing the old resume writing/interview techniques/how to dress for an interview scenarios! The only way I got yhe sdvise I wanted to help establish a business was to put my foot down, and demand it…there was no one set up to help me through the process! No, ACON saw themselves as the one-stop-shop for HIV services, and went to great lengths to draw needed, working organisations such as BGF & CSN under their umbrella…only to see those organisations strictly controlled, and no longer providing the much needed services they originally provided. My dislike of ACON is no secret, and yes…I put the boot in at every opportunity! They have never really provided what we heed…only what they want! Here is my rant regarding the closure of Colao:

I just love the current ACON campaign, to stop people taking drug holidays. No, I’m not kidding! It really is a smart campaign. Shame we don’t have a treatment management course to go hand in hand with it, which is really making it a waste of advertising money…again!

The closure of the Colao Project, done with little fanfare via the local press, is in actual fact a major disaster for the HIV/AIDS community in Sydney. Though sponsored by drug company money (the drug company keeping their noses out of its running), it provided the only treatment management workshops in Sydney. I was in the very first group run by Colao, in fact the group that was partially responsible for the project becoming the success it was. We were the group from which all the ‘bugs’ were ironed out. 

Yet it was from this group that I learnt how to manage long term treatment taking, stress management, and self-motivation. My whole life from that point up until now has been influenced by what I learnt from Colao, and what they motivated me to do, especially in regards to my writing career. Apart from this, both personally, and through peer support, I have pointed many people in the direction of Colao.

We have to question, in the light of its closure, why in the face of a responsible, working model of treatment management did no-one else take up the banner. ACON, being an AIDS council, and doing a major campaign on how to manage treatments, should perhaps have thought doing treatment management themselves. 

It’s not that I don’t personally approve of drug companies supporting, and putting money into these ventures. After all, they make the drugs that we have to take, for better or worse, to try to improve our lot in life. What concerns me is that, having put their own money into it, if they can’t see anything of value to them coming out of it, at the end of the day they will withdraw the money! Some of our lobbying groups should also have taken up the banner, and lobbied for a community take-up of treatment management. One has to ask “why was the whole lot dropped only in Colao’s lap?”.

Now let’s not confuse issues here! We are talking treatment management, not treatment support. For the latter, we have many takers-peer support groups, counsellors, and places such as the Luncheon Club, the Positive Living Centre, and NorthAIDS. I’m sure all these do a perfectly good job at support, but they can’t teach you to manage the problems. Long term management of treatment (read drug) taking is of vital importance to PLWHAs. We are not doing a weeks course in antibiotics here. We are taking hundreds of tablets every week, and are expected to do it, at least at this stage, indefinitely. This involves being able to motivate yourself to get up every day and take these tablets. 

The end result of such compliance is stress, and a loss of motivation, a feeling that you have lost control, and the drugs are running your life. For those who are hale and hearty as a result of this compliance, returning to the workforce can be a major issue, with concerns centred around compliance, and side affect issues, in the workplace. To this end, Colao was invaluable, and will be sorely missed by many. 

Tim Alderman ©1999 (Revised 2017)

 

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