Let’s get one thing straight…I’m NOT a conspiracy theorist! I would like to think I weigh things up before coming to a conclusion. I’ve seen…and heard… a lot over the last 41 years of my life with both HIV, and AIDS! Some good, some not so good. Many will not agree with me on some, or all of these points, and that’s fine! But there are also a lot who will! There will never be a Royal Commission, not even a dissection of how HIV was handled “back in the day”. There was a thinking that drastic times called for drastic actions, and thus everything was acceptable, despite any damage it caused. I’m one of those who begs to differ, even if it makes me out to be a crackpot! Oh…and another point I need to make…yes, I AM suspicious of Big Pharma! Both their intentions, and practises!
So…why am I defending myself? Well…I have some “outside-the-square” theories/thinking on how the HIV community has been used by the drug companies over the decades. Of course, they are BIG, so have a lot of clout, and nobody ever seems to question their intentions.
I have always considered it a bit odd that there have been investigations into how Covid was handled, federally and on a state level, but nothing into the handling of the HIV pandemic. As stated already, it is almost like there was an “anything goes” attitude towards issues regarding HIV. As long as an action could be justified, it was okay!
In 2018, I had a chapter dedicated to me in the “HIV Book Project” publication of the same name. Over the decades, I have had many interviews by media, including Good Weekend, and a segment on the television series Healthy, Wealthy & Wise. Apart from a very cringy article in The Bulletin in 1987, back when we knew fuck all about HIV treatment, and survival rates, my story, as interesting as it is, as told in interviews and photographic sessions, had never been published in the mainstream media. This has always appeared to be the domain of activists, HIV “hierarchy”, and academics. So much for the voice of the HIV guy on the street!
My interview and photography session for the HIV Book Project took place in Sydney Park, with an ex, and my dog, Benji tagging along. When they decided to include me in the book, I was, to a point, surprised! My opinions were controversial, and my actions to handle my HIV drug treatments my own way must have raised many an eyebrow. After all, compliance had been rammed down our throats for over 20 years, and that someone like me dared to defy the norm was, to say the least, foolhardy! To my way of thinking, our doctors didn’t decide our medication dosing…the drug companies did!
After being on one regime or another…extending back to the days of mono therapy…for over 25 years I was greatly concerned about how these drugs must have been knocking my body around. At that time, I was on a regime of three drugs twice a day. Over a 7 year period, I had made the very personal decision to halve my regime to once a day. This effectively cut out side effects I was experiencing at that time. It also gave my body some respite from the continued battering of long-term drug dosing. To make things worse…I was also taking a drug holiday every weekend. So these views and actions were published in the book. I had never admitted to anyone that I had taken this action. Not even my doctor!
After publication, I read the other stories in the book. Comparing my story to theirs, I actually felt as though I had come across as a bit of a weirdo! Perhaps to my own detriment, what I hadn’t explained was that when I started this action, my intention had been that if by halving my dosing my viral load climbed, or my CD4 count dropped, I would resume the prescribed dosing. Yet after 7 odd years of doing this, my viral load was still undetectable, and my CD4 count continued to climb! So much for the need for compliance! I’m not advocating that everyone on HIV drug regimes should do this…but it is food for thought!
And it doesn’t stop there! I openly defied those who love to claim that AZT was beneficial, and kept the wolf from the door! This was an incredibly toxic drug! Having failed as a cancer drug due to its toxicity, it was suddenly hailed as a breakthrough drug in the treatment of HIV, despite trials such as the Concorde trial (Britain/Ireland/France) labelling it as “human rat sac”. Anyone who saw “Dallas Buyers Club” would be familiar with the disdain in which the drug was held. Its side effects…and we were dosed massively with it…were horrendous, including liver and kidney damage, peripheral neuropathy, knocked the immune system around (immune suppression), and anaemia. On a HIV forum many years ago, I posted that I personally held AZT responsible for the sudden decline in my CD4 count, and the immune suppression that brought about my run in with AIDS. I thought I would cop a slamming for expressing such an opinion, only to find in the comments that many agreed with me! Like me, many regretted taking it!
I also question…please note that word…the ethics behind the pricing of HIV drugs! At one time, the actual retail price of the drug…usually in the many hundreds of dollars…was printed on the pharmacy label. Anyone on three or four drugs would never have been able to afford to buy them every month, especially anyone on a pension. One has to wonder that, without the PBS, would the drug companies have just allowed us to die…or would we also have had to run buyers clubs!
Which brings me to resistance testing…another drug company instigated test, and one I have always been…vocally…doubtful about. Excuse my cynicism, but if a drug company is developing and pushing a particular test, there has to be something in it for them!Has anyone noticed…and I’m sure you must have…that pretty well everyone who had a drug resistance test was taken off the older drugs (despite them still working) and placed on the newer drug regimes! Logic decrees that, considering the costs of research and development, Big Pharma would prefer us all to be on the newer drugs, considering that they would have the highest financial outlay! I reckon we were really duped on this one, especially considering that currently those who are experiencing weight gain…another point worth raising…from the newer drug regimes are requesting a return to the older drugs…which at some stage they would have been told they are resistant too. Interesting, that!
So call me a weirdo, or a ratbag! To be honest, I really don’t care! For no reason has the term HIV Industry been coined! Someone is making money from it, and undoubtedly keeping the shareholders happy…and it’s not US! I would rather be called a whacko…at the least, after 41 years being HIV+…that I’ve experienced enough, indeed seen enough, to know that if you are not one of the sheep who just goes along with the flow, if you are someone who thinks for themselves with a moderate dose of cynacism, you are always going to be attacked and slammed.
I have broad shoulders. I can handle a bit of criticism.
Tim Alderman ©️ 2024