A Rough History of the HIV/AIDS Pandemic

May 27, 2026Article, Gay Interest, General Interest, Health Information, History, HIV/AIDSAIDS, Gay, HIV, HIV/AIDS, LGBTtimalderman

The HIV/AIDS pandemic remains one of the most devastating global health crises in modern history. Since the disease first emerged into public consciousness in the early 1980s, more than 40 million people have died from AIDS-related illnesses, and tens of millions more have lived with the physical, emotional, and social consequences of HIV infection. The history of HIV/AIDS is not only a medical story, but also a story of fear, stigma, activism, politics, science, prejudice, grief, and survival.

Understanding the rough history of the pandemic requires looking beyond statistics and medical terminology. It means understanding how entire communities were transformed, how governments often failed vulnerable populations, and how ordinary people fought for dignity and life in the face of overwhelming loss.

The Origins of HIV

Scientists now believe that HIV originated in Central Africa, most likely in what is now Cameroon or the Democratic Republic of Congo. The virus is thought to have crossed from chimpanzees to humans sometime in the early twentieth century through the hunting and butchering of bushmeat. The simian immunodeficiency virus (SIV), found in primates, mutated into a human form that became HIV. (cdc.gov)

For decades, the virus spread quietly and largely unnoticed. Researchers later identified evidence of HIV infection in human blood samples dating back to the 1950s. One of the earliest confirmed cases was a blood sample collected in the Belgian Congo in 1959. The virus likely spread slowly at first through urbanisation, migration, colonial trade routes, prostitution, contaminated needles, and changing sexual networks across Africa. (nih.gov)

By the 1970s, HIV had reached several parts of the world, including Haiti, the United States, and Europe, although nobody yet knew the virus existed.

The Mysterious Illness Emerges

The world first became aware of AIDS in June 1981, when the United States Centers for Disease Control and Prevention reported unusual clusters of rare illnesses among young gay men in Los Angeles. These men were suffering from a rare pneumonia called Pneumocystis carinii pneumonia and unusual cancers such as Kaposi’s sarcoma, diseases normally seen only in people with severely damaged immune systems. (cdc.gov)

Doctors quickly realised something unprecedented was happening.

Healthy young people were developing catastrophic immune failure. Patients became vulnerable to infections that the body would normally defeat easily. Many deteriorated rapidly and died within months.

At first, the disease had no official name. It was referred to in the media as “gay cancer” or GRID — Gay-Related Immune Deficiency. Because many early cases appeared among gay men, society often viewed the illness through the lens of prejudice and moral judgement rather than medicine.

This stigma would become one of the defining horrors of the epidemic.

Fear, Stigma, and Panic

During the early 1980s, fear surrounding AIDS spread almost as quickly as the virus itself. Much of the public did not understand how HIV was transmitted. Some people believed they could catch AIDS through touching, casual contact, sharing utensils, or simply being near an infected person.

Gay men were heavily demonised. Religious conservatives described AIDS as divine punishment for homosexuality. Families abandoned sick relatives. Funeral homes sometimes refused bodies. Employers fired workers suspected of infection. Children with HIV were bullied or excluded from schools. (history.com)

The disease also affected intravenous drug users, haemophiliacs who received contaminated blood products, sex workers, and eventually heterosexual populations worldwide. Yet many governments were slow to respond because the earliest victims belonged largely to already marginalised groups.

In the United States, President Ronald Reagan did not publicly mention AIDS for several years despite the rapidly growing death toll. Activists later accused governments around the world of indifference and neglect. (reaganlibrary.gov)

The Discovery of HIV

In 1983, scientists at the Pasteur Institute in France identified the virus responsible for AIDS. The following year, American researcher Robert Gallo confirmed the discovery. The virus eventually became known as Human Immunodeficiency Virus — HIV. (nih.gov)

The discovery allowed scientists to develop blood tests to detect infection. This was a crucial breakthrough, particularly for blood banks. Before HIV screening existed, thousands of haemophiliacs and transfusion recipients were infected through contaminated blood products.

Testing also introduced new fears. Many people avoided HIV tests because a positive diagnosis was widely viewed as a death sentence.

The Grim Reality of the 1980s

The 1980s were marked by enormous suffering. There was no effective treatment for AIDS, and infection often led to death within a few years. Hospitals in cities such as New York, San Francisco, London, and Sydney filled with dying patients.

The symptoms could be horrifying. Opportunistic infections ravaged weakened immune systems. Kaposi’s sarcoma caused dark lesions across the skin. Severe weight loss, known as “wasting syndrome,” left many skeletal and frail. Dementia, blindness, and neurological damage were common in advanced cases.

Entire friendship groups disappeared.

Within the gay community especially, the emotional toll was catastrophic. Men in their twenties and thirties attended funeral after funeral. Some lost dozens of friends and lovers within a few years. Survivors later described living in a permanent state of grief and terror.

At the same time, communities mobilised in extraordinary ways.

Grassroots organisations formed to care for the sick when governments often would not. Volunteers delivered meals, cleaned homes, raised money, sat beside hospital beds, and comforted the dying. Lesbian women played a particularly important role in caring for gay men abandoned by families or institutions during the crisis.

Activism and ACT UP

As frustration with government inaction grew, AIDS activism became a powerful force. One of the most influential groups was the ACT UP, founded in New York in 1987.

ACT UP organised dramatic protests demanding faster drug approval, better healthcare access, increased research funding, and an end to discrimination. Activists disrupted government meetings, shut down Wall Street, occupied pharmaceutical company offices, and used confrontational tactics to force public attention onto the epidemic. (actupny.org)

Their activism fundamentally changed the relationship between patients, governments, and medical researchers. AIDS activists demanded a voice in scientific research and healthcare policy, helping accelerate the development of treatments.

AZT and Early Treatments

In 1987, the drug AZT became the first medication approved for HIV treatment. It offered hope but also controversy. The drug could slow viral replication, but early doses caused severe side effects including nausea, anemia, and fatigue. Many patients still died despite treatment. (britannica.com)

Other antiviral drugs followed, but HIV mutated quickly and developed resistance when drugs were used alone. During the late 1980s and early 1990s, treatment remained limited and imperfect.

Still, for many people, even a few extra months of life mattered enormously.

The Global Spread

Although AIDS initially gained attention in wealthy Western nations, the pandemic increasingly devastated poorer regions, especially sub-Saharan Africa.

By the 1990s, HIV infection rates in some African countries had reached catastrophic levels. In nations such as Botswana, South Africa, and Zimbabwe, entire generations were affected. Life expectancy plummeted. Hospitals became overwhelmed. Millions of children were orphaned after losing parents to AIDS-related illnesses. (unaids.org)

Poverty, limited healthcare infrastructure, stigma, gender inequality, and lack of access to medication worsened the crisis.

Women became increasingly vulnerable to infection, particularly in regions where economic dependence and sexual violence limited their ability to negotiate safe sex practices.

The Breakthrough of Combination Therapy

A major turning point came in 1996 with the introduction of Highly Active Antiretroviral Therapy (HAART), commonly known as combination therapy or the “drug cocktail.”

Instead of using a single medication, doctors combined multiple antiretroviral drugs that attacked HIV in different ways. This dramatically reduced viral levels in the body and prevented the virus from developing resistance as easily. (hivinfo.nih.gov)

The results were extraordinary.

Death rates dropped sharply in countries with access to treatment. Patients once preparing for death suddenly regained health and began rebuilding their lives. HIV gradually shifted from a near-certain fatal disease to a manageable chronic condition for many people.

For survivors of the epidemic’s worst years, the change felt almost surreal. Hospital wards that had once been full of dying patients began to empty.

Yet treatment remained inaccessible to millions in poorer countries due to high drug prices and patent restrictions.

The Fight for Global Access

During the late 1990s and early 2000s, activists pushed for affordable HIV medications in developing nations. Pharmaceutical companies faced intense criticism for charging prices far beyond the reach of many African countries.

International programs eventually expanded treatment access. Organisations such as the World Health Organization, UNAIDS, and the Global Fund helped distribute lifesaving drugs worldwide.

Generic medications dramatically reduced treatment costs. Millions of lives were saved through expanded access to antiretroviral therapy.

HIV in the Modern Era

Today, HIV is no longer automatically a death sentence in countries with access to modern healthcare. Antiretroviral therapy can suppress the virus to undetectable levels, allowing many people with HIV to live long and healthy lives.

Scientific advances have transformed prevention as well.

PrEP (pre-exposure prophylaxis) allows HIV-negative individuals to reduce their risk of infection dramatically through daily medication. Public health campaigns now promote the principle of “Undetectable = Untransmittable” (U=U), meaning people with undetectable viral loads cannot sexually transmit HIV. (cdc.gov)

Yet the pandemic is far from over.

Millions of people worldwide still lack adequate treatment. Stigma continues to affect those living with HIV. In some countries, discrimination against LGBTQ+ people, sex workers, and drug users undermines prevention efforts.

The social scars of the epidemic also remain profound.

The Cultural Impact of AIDS

The AIDS pandemic transformed art, politics, medicine, and culture. Countless musicians, actors, writers, activists, and ordinary individuals died during the crisis.

Figures such as Freddie Mercury, Rock Hudson, and Arthur Ashe brought public visibility to the disease. Their illnesses forced many people to confront the reality that AIDS could affect anyone.

The epidemic also reshaped LGBTQ+ identity and politics. Many historians argue that the AIDS crisis radicalised a generation of activists and permanently changed public discussions around sexuality, healthcare, and human rights.

Books, films, plays, and memorials continue to document the emotional devastation of the era. The AIDS Memorial Quilt remains one of the largest community art projects in history, commemorating tens of thousands of lives lost to AIDS.

Lessons from the Pandemic

The history of HIV/AIDS reveals both the best and worst aspects of human society.

It exposed how prejudice can deepen suffering during a public health emergency. Marginalised communities were ignored, blamed, and stigmatised when compassion and science were desperately needed.

At the same time, the epidemic demonstrated remarkable courage and solidarity. Patients, activists, healthcare workers, researchers, and caregivers fought relentlessly for survival, dignity, and truth.

The scientific achievements that emerged from HIV research transformed modern medicine. Advances in virology, antiviral drugs, and public health strategies continue to influence treatment for many other diseases today.

Perhaps most importantly, HIV/AIDS taught the world that silence and stigma can be deadly.

The pandemic is not merely a chapter in medical history. It is a human story of loss and resilience that continues into the present day.

Tim Alderman ©️ 2026

Sources

CDC HIV Origins Overview

CDC Museum HIV/AIDS Timeline

NIH AIDS History Timeline

History.com — History of AIDS

Ronald Reagan Presidential Library — AIDS Epidemic Archive

ACT UP New York Archive

Britannica — AZT

UNAIDS Global Fact Sheet

NIH HIV Treatment Information

CDC — Undetectable Equals Untransmittable (U=U)

The Horrifying Truth About AZT: Fear, Hope, and the First Battle Against HIV

May 27, 2026Article, Gay Interest, Health Information, History, HIV/AIDSAZT, early intervention, HIV, HIV/AIDS, side effects from drugs, TOXIC DRUGStimalderman

In the darkest years of the HIV/AIDS epidemic, one drug became both a symbol of hope and a lightning rod for fear: AZT, also known as zidovudine. To some, it was a lifesaving medical breakthrough. To others, it represented desperation, corporate greed, toxic side effects, and a healthcare system struggling to respond to a terrifying new disease.

The truth about AZT is horrifying — but not in the simplistic conspiracy-laden way often promoted online. The real horror lies in the context in which the drug emerged: a world where young people were dying rapidly, governments were slow to act, fear and stigma were everywhere, and medicine was racing against time with limited tools and incomplete knowledge.

AZT was the first drug approved to treat HIV/AIDS in 1987. Originally developed in the 1960s as a failed cancer treatment, researchers later discovered that it could interfere with HIV’s ability to reproduce. At the time, HIV infection was almost universally fatal. Hospitals in cities like New York, San Francisco, and Sydney were overwhelmed with patients suffering from rare infections, cancers, and devastating immune collapse. There was no effective treatment, no cure, and little public sympathy.

When AZT arrived, it was hailed as a miracle.

But the reality was far more complicated.

The earliest clinical trials showed dramatic results. In one famous study, patients receiving AZT appeared to survive at significantly higher rates than those receiving placebo. The trial was halted early because researchers believed it would be unethical to deny the drug to dying patients.

Yet almost immediately, controversy erupted.

Critics questioned whether the trials were too short, too rushed, and too heavily influenced by desperation. The U.S. Food and Drug Administration fast-tracked approval in record time because people were dying by the thousands. Some scientists worried that long-term effects were still poorly understood. Others argued that activists and patients themselves were demanding immediate access regardless of the risks.

And the side effects could indeed be brutal.

AZT was highly toxic at the doses first prescribed in the late 1980s. Patients often suffered severe nausea, vomiting, headaches, fatigue, anemia, muscle wasting, and bone marrow suppression. Some became so weak from treatment that they could barely function. The drug damaged healthy cells as well as infected ones because it interfered with DNA replication.

For many people living with HIV at the time, taking AZT became a grim calculation: endure the drug’s punishing side effects or face almost certain progression to AIDS and death.

What makes the AZT story particularly tragic is that early treatment strategies relied heavily on AZT alone — known as monotherapy. HIV mutates rapidly, and over time the virus often developed resistance to the drug. Later studies showed that AZT by itself was not enough to stop HIV long-term. It could delay disease progression for some patients, but the benefits often faded.

That reality fueled anger within parts of the HIV-positive community.

Activists accused pharmaceutical companies of profiteering from a crisis. At one point, AZT became the most expensive prescription drug in America, costing around $10,000 per year — an astronomical figure in the 1980s. Protesters argued that people were being financially exploited while fighting for their lives.

Many patients also felt like human experiments.

Doctors were learning in real time. Dosing strategies changed repeatedly. What seemed promising one year was questioned the next. Fear spread easily, especially in communities already traumatized by mass death. Some HIV activists fiercely criticized medical authorities, including figures like Anthony Fauci, believing the healthcare system was moving too slowly or making dangerous mistakes.

Out of this chaos emerged decades of myths and conspiracy theories.

One persistent false claim says AZT itself caused AIDS or killed more people than HIV. There is no credible scientific evidence supporting that belief. HIV is the cause of AIDS, a fact overwhelmingly demonstrated through decades of virology, epidemiology, and clinical research. While AZT had serious toxicities — especially at early high doses — studies consistently showed that it could reduce viral replication and delay disease progression.

The confusion partly arose because many patients taking AZT still died. But this was during a period when HIV infection was already advanced in countless individuals before treatment even began. By the late 1980s and early 1990s, doctors were often trying to save people who were already gravely ill.

The real breakthrough did not come until the mid-1990s, when combination antiretroviral therapy emerged. Instead of relying on AZT alone, doctors began using multiple drugs simultaneously to attack HIV from different angles. These “drug cocktails” transformed HIV from a near-certain death sentence into a manageable chronic condition for millions.

Ironically, AZT itself remained part of some combination therapies for years. Despite its flaws, it had genuine antiviral activity. Researchers eventually learned how to use lower doses more safely and effectively. Modern HIV treatments are vastly less toxic and far more successful than the early therapies of the 1980s.

Still, the emotional scars from the AZT era remain deep.

For survivors of the epidemic, AZT represents a complicated memory: hope mixed with suffering. Some remember it as the first thing that gave them a chance to live. Others remember friends becoming desperately ill from side effects while still losing the battle against AIDS. Entire communities lived through unimaginable trauma as funerals became routine and governments often looked away.

That is the horrifying truth about AZT.

Not that it was some secret genocidal poison, but that it emerged during one of the most frightening public health disasters in modern history — a time when medicine was imperfect, fear was everywhere, and people facing death were willing to try almost anything for another year, another month, or even another week of life.

The AZT story is ultimately a story about human desperation, scientific uncertainty, political failure, and the painful evolution of HIV treatment. It reminds us how terrifying the AIDS epidemic truly was, especially before modern antiretroviral therapy changed the course of history forever.

Tim Alderman ©️ 2026

Sources

Encyclopaedia Britannica — “AZT”
Britannica: AZT Overview

National Center for Biotechnology Information (NCBI) — Historical analysis of AZT clinical trials and HIV treatment development
NCBI: AZT and Early HIV Treatment Research

Journal of the American Medical Association (JAMA) — Early controversy and approval process surrounding AZT
JAMA: AZT Approval and AIDS Activism

Cochrane Review — Effectiveness and limitations of AZT monotherapy
Cochrane Review on AZT

Chemical & Engineering News — AZT pricing and pharmaceutical controversy
C&EN: The Story of AZT

WebMD — History of HIV treatment and the development of combination therapy
WebMD: The History of HIV Treatments

A 40 Year Journey Into (And Out Of) Fear Part 8 (FINAL)

May 25, 2026Article, Autobiography, Gay Interest, Health Information, HIV/AIDSageing with HIV, AIDS, Gay, HIV, HIV/AIDS, long term survivortimalderman

The move to Dr. David Austin at Holdsworth House was a good move, made on recommendations from friends. The practise was well located in Darlinghurst, David himself was young, handsome, HIV/AIDS knowledgeable…and gay, as were all the men in the practise, which made communication easy.

The one good thing about David was that he was willing to make me an equal “partner” in my health management. This far down the line, I wanted more control over decisions made in regards to my health. When it came time to change my combination therapy, David would pick out a number of combinations, give me the run-down on them…efficacy, potential side effects…then I would choose the one that suited me.

Between late 1999-2001 I applied for several trials, but was disallowed due to having had CMV. A lot of my focus changed to controlling the ongoing pain from my peripheral neuropathy (which eventually became numbness), I tried acupuncture… through 407 Medical Practise in Bourke St…went to a reflexologist in Queenscliff, who was running a research project with subjects with ongoing PN. I then had regular sessions with Greg Milan, a reflexologist associated with Holdsworth House. Despite some minor improvements using these alternatives, nothing worked in a major way, and it became obvious that it was permanent, and I just had to deal with it…right up until now, where it affects my mobility and balance, controlled through exercise physiology.

Also in late 1999 I started part-time work at the HIV Prescribers Project, thanks to Lavinia Crooks (RIP) at ASHM (Australian Society for HIV Medicine) who managed it at the old (now long gone) Royal South Sydney Hospital, in Zetland. This project ran training courses for doctors wishing to expand their HIV knowledge, and become S100 Prescribers. In mid 2000 the project moved from Zetland, to the ASHM offices in the Albion St Clinic building. I helped to collate the training manuals etc for the courses which were run several times a year.

From photo shoot for The HIV Book Project at Sydney Park

In late 2000, David…my partner, not my doctor…and I decided to do a two week trip through the Red Centre while the Sydney Olympic Games were on. We caught The Ghan from Sydney (back then it alternated between Sydney and Melbourne) to Alice Springs…the end of the line back then…via Adelaide, then coached it up to Darwin. A truly awe-inspiring holiday, away from the madness of Sydney. On returning to Bondi, I then decided to legitimise my writing with a degree in writing from UTS…I was writing regularly for Talkabout then…and applied under the exceptions granted to mature age and disabled students, and was accepted. I quit my job at HIV Prescribers, and entered into a period of educational advancement.

I applied to do a Batchelor of Writing degree, though found university not to my taste. It reminded me a lot of school…which I hated…and many of the first year subjects had nothing to do with writing, which frustrated me. For the second and third years, I juggled subjects around to fit with what I wanted, and at the end of that period I had enough subjects passed to get a Graduate Certificate of Writing, which I settled for. While at UTS I had several articles published in “Vertigo”, the university newspaper, and was office-bearer for the Disability Collective. Dealing with student bureaucrats drove me crazy, and I wrote a number of heated letters blasting the Student Union for not offering reduced costs in fees to disabled and pensioner students. Naturally, all to no avail.

Midway through 2003, while finishing my writing degree, I started at East Sydney TAFE to get my chef’s credentials. Apart from writing, my other passion was cooking. Unlike UTS, I loved TAFE. The students were more down-to-earth, and genuinely loved the learning experience, not being hindered by the strictures of university. I also embarked on a correspondence course to get my Catering Certificate. So, by 2004 I had three new credentials under my belt.

Back to 2001, I went onto my second-last trial…and it was a doozy that I got paid $650 to do. It was called the Caprine Antibody HRG214 trial…more commonly known as the Goat Serum antibody trial…Phase 1. It was done by infusion at St. Vincent’s, followed by a two month observation period. Again, at the end of it, nothing was achieved except a sore arm from the 12 attempts to get a cannula in it, and an all-over skin rash at the end of the second month.

The last trial was in 2004, and both David and myself were involved in it. Back in 2000 I was knocked back from doing the T20 trial due to my CMV, but the criteria was made less stringent as time went on, and so in 2004 we both got into the T20 trial. This was an injectable drug vaccine trial that was seen as the possible future for drug regimes. The drug was administered into an area of body fat using a pneumatic gun. Initially, it was great…pretty well pain-free, quick, easy, and very effective according to pathology results. However, because you had to do it twice a day, it soon became notable that injection sites got painful, and you soon ran out of them. It could also cause serious bruising which put an injection site out of action until the bruise cleared. We both got about halfway through, then quit. Evidently a lot of others had similar problems.

Other events for that year were (A) my 50th birthday, a truly big event that I dragged out for two weeks. Highlights included David taking the wrong batch of…cookies…to Palms, and getting banned from The Colombian Hotel in Darlinghurst, due to my tendency to stagger. They later apologised for the behaviour of their bouncers (B) I wanted to open a business, but had no idea about how to go about it. I decided to go through a BGF return-to-work course, to see where it would lead. Fortunately, I ended up with Marie Crosbie as my advisor. She soon clicked that I didn’t really need what the course provided, and asked me what I really needed. Between the two of us, we put together the bare bones of starting a business and (C) we decided to move to a house in Dulwich Hill so we could have room to rescue dogs. We are both Jack Russell Terrier lovers, and that love of rescuing them exists right up to today. There is a notable lack of HIV information at this stage, as everything was now running smoothly, and it was moving further and further into the background of my life.

Dulwich Hill, with our two Jack Russell’s, provided a new approach to many things. I started a high-end catering business called Alderman Catering. This lasted about two years, before exhaustion finally ended it. Catering is a youngish persons business. It takes three days to put a functions finger food together. A day for shopping, a day for prep work, and a long day of cooking packing and serving. It really wears you out. I rejigged my business plans, and fell back into my old retail career, as it was something I knew, and was successful with…but I leapt onto a retail format that is only mew really popular…an online store (I could run it from home with minimal start-up expenses, and minimal overheads) called Alderman Providore, specialist in non-perishable Australian made food products from small, unknown niche suppliers. It was incredibly successful with a constant yearly growth, and then the addition of another specialist store called TeaCoffeeChocolate. What brought it all to an abrupt end was the Global Financial Crisis in 2009/10. Online businesses were the first to crash. I put the business up for sale, and sold it to a woman in Queensland.

From the photo shoot for The HIV Book Project in Sydney Park

It was soul destroying.

Around the same time I started having problems with my blind left eye. It was constantly irritated, like there was something in it that wouldn’t come out. I went to the eye clinic at Royal Prince Alfred Hospital at Camperdown. They found that the eye didn’t realise it was blind, and had created a new capillary network to feed the eye. This in turn caused the eye to swell, thus the irritation. They gave me steroid drops, and referred me to the Sydney Eye Hospital. After a consult, they decided to inject a cancer serum (Avastin), that stopped blood flow to tumours, to stop the blood vessel growth. It was successful, however over time, the eye changed colour, giving me two different coloured eyes. Talk about attention grabbing!

Also in 2009; I got out of the shower one morning, caught sight of myself in the mirror, and thought “who is that fat person in here!”…yep, it was me. So off to a local gym, and a new love affair with Les Mills Body Pump classes. The weight burnt away, and started me on an ongoing love of fitness which still goes on today, though in a more senior person way. Fit, healthy, active is my mantra now;

In 2011 we decided to move to Brisbane. No particular reason why…just because we could! So we packed up our home, got a removalist, filled the car, grabbed the dogs and moved to Ashgrove, a suburb of Brisbane. I had been told back in 1996 that due to all the scar tissue in my right eye, due to the CMV, it was highly likely I’d have a retinal detachment at some stage. No sooner had we gotten to Ashgrove than the retina decided it was time. So, into Royal Brisbane hospital for an operation to reattach it. The ophthalmologist also scraped down the scar tissue before reattaching it.

Leap forward to early 2015, and problems with my left eye continued. In the intervening years, all the eye’s internal workings had collapsed, so I made a decision to have the eye removed. Another operation, and it was gone. Shortly after, David and I returned to Sydney…we had split amicably in 2014, and are still close friends…and it was here that I had my prosthetic fitted.

In 2017 I was interviewed and photographed for a chapter in the HIV Book Project. It was here, for the first time, that I revealed my rather radical approach to HIV drug dosing In 2011. In an era where we were still dosing on 3-4 drugs twice a day, and guys were opting for drug holidays despite the risks, I opted…without disclosing to anyone…for a different approach. It was risky, but done with close observation to blood test results. Sick of pills, sick of side effects, I halved my daily dosing to once a day, and no pills on weekends. If my CD4s fell, or my viral load rose, straight back to my old routine. In the 5 years I did this, my CD4s continued to rise and my viral load remained undetectable. Interesting, isn’t it! Read my chapter in the book to find out my true feelings about this.

Apart from an extremely painful run-in with shingles in 2014, which has left me with neuralgia and partial numbness in my left arm and hand, and 5 weeks of radiation on a large Basil Cell Carcinoma behind my left ear last year, life is really great. My Jack Russell, Flash, and I live very happily in a social housing villa on the Central Coast of NSW. I’m on a category 3 home support package…with the addition of Assistive Technology funding…so have some cool technology to help me see to do hobbies. Someone comes in to clean, and helps me with shopping. My Exercise Physiology gym is a 2 minute walk away. Friends are close by, and I have great neighbours.

I obtained my Certificate III in Fitness back in 2012, and ran seniors exercise classes locally until 2 years ago, when I got my villa. I avoided COVID, and apart from writing about it, HIV could not be further from my mind. These days, ageing…the one concern I once thought would never happen…is, at 72, my biggest concern. I now use a walking stick to control my meandering feet, and only take antivirals once a day. I’m happy, and content. What else does one need!

So what have I learnt about myself over the last 43 years…and even earlier than that? Well, I’m certainly resilient! I’m an independent guy, and an individual. I’ve retained a sense of humour…though somewhat dark and sarcastic. I’m glad I’ve always been an out gay man, and I am what I am, and where I am, doing the things I love due, in large part, because I’m HIV, and had AIDS. There is a kind of perversity in that! If I had my time over, would I walk the same road? That is a very good question! And one I’ll leave you to ponder. Thank you for reading a very long rant. It is most appreciated. Now, pack it away, and get on with your life.

Nam myoho renge kyo (Buddhist mantra)

Tim Alderman ©️ 2026

“Patient Zero”: Fact, Fantasy, or Myth.

May 3, 2026Article, Gay Interest, General Interest, HIV/AIDS‘social stigma, debunking myths, Gaëtan Dugas, HIV/AIDS, patient zerotimalderman

The story of HIV’s so-called “Patient Zero” sits at the intersection of science, stigma, and storytelling. For decades, it has been repeated in media and public discourse as the tale of a single individual who allegedly introduced HIV to North America and triggered the AIDS epidemic. But is this narrative grounded in fact, or is it a myth that took on a life of its own?

The origins of the “Patient Zero” concept trace back to the early years of the AIDS crisis in the late 1970s and early 1980s, when doctors and epidemiologists were scrambling to understand a mysterious and deadly illness. One key figure in this story is Gaëtan Dugas, a French-Canadian flight attendant who was identified during a U.S. Center for Disease Control and Prevention (CDC) study investigating sexual networks among gay men with AIDS.

In that study, Dugas was labeled as “Patient O,” with the “O” standing for “Outside California,” since he was not based in the state where many early cases were identified. Over time, however, this “O” was misread or reinterpreted as the number zero. This seemingly minor clerical or typographical confusion had enormous consequences. The label “Patient Zero” implied that Dugas was the original source of HIV in North America—a claim that would later prove to be unfounded.

The idea gained widespread attention with the publication of “And the Band Played On” by journalist Randy Shilts in 1987. The book, while groundbreaking in its chronicling of the early AIDS epidemic, portrayed Dugas as a central figure in the spread of the virus. This depiction cemented the “Patient Zero” narrative in the public imagination, casting Dugas as a kind of villain who knowingly transmitted HIV to others.

However, subsequent scientific research has dismantled this narrative. Advances in genetic analysis of the virus…particularly phylogenetic studies…have allowed scientists to trace the evolution and spread of HIV with much greater precision. These studies show that HIV was present in North America well before Dugas became infected. In fact, the virus likely entered the United States from the Caribbean in the early 1970s, years before the first recognised AIDS cases.

A landmark 2016 study published in the journal “Nature” used preserved blood samples from the 1970s to reconstruct the early history of HIV in North America. The findings revealed that the virus was already circulating in New York City by around 1970 and had spread to San Francisco shortly thereafter. Crucially, the analysis demonstrated that Dugas was not the earliest case, nor was he uniquely responsible for spreading the virus.

This evidence underscores a key point: epidemics do not begin with a single individual in the simplistic way that the “Patient Zero” myth suggests. Infectious diseases spread through complex networks of human interaction, often silently and undetected for years before they are recognised. The notion of a single “originator” is more a narrative convenience than a scientific reality.

The persistence of the “Patient Zero” story also reflects broader social and cultural dynamics. During the early years of the AIDS crisis, fear and misunderstanding were rampant, and marginalised communities—particularly gay men—were often stigmatised and blamed. The idea of a single, identifiable individual responsible for the epidemic provided a focal point for that fear and blame.

In retrospect, the story of “Patient Zero” can be seen as a cautionary tale about how misinformation and stigma can shape public understanding of disease. While Gaëtan Dugas was indeed part of early epidemiological investigations, he was not the origin of HIV in North America, nor was he uniquely culpable in its spread.

Today, historians and scientists widely regard the “Patient Zero” narrative as a myth—one rooted in misunderstanding and amplified by media representation. It serves as a reminder of the importance of careful scientific communication and the dangers of oversimplifying complex public health issues.

HIV’s “Patient Zero” is not an actual fact but largely an urban legend that emerged from a combination of misinterpretation, incomplete knowledge, and social stigma. While it may have once seemed like a compelling explanation for a frightening new disease, modern science has shown that the reality is far more nuanced—and far less accusatory.

Tim Alderman ©️2026

Lifetime Trauma and Loss

April 24, 2026Article, Gay Interest, General Interest, HIV/AIDSlifetime trauma, lived memory, loss and hiv/aids, loss of loved ones, mental health, traumatimalderman

There is a saying…that time heals all wounds.

It doesn’t!

Lifelong trauma is rarely a single event frozen in time. More often, it is a thread that runs through a person’s life, weaving itself into memory, identity, relationships, and even the body. It can begin with one devastating loss and then deepen as new experiences echo the original wound. Over time, trauma becomes less about what happened and more about how it continues to live within you…reshaping how you see the world and your place in it.

The death of a loved one in childhood is one of the most profound disruptions a person can experience. When a brother dies, especially at a young age, the loss is not only of a person but of a shared future. The ordinary expectations…growing up together, navigating life side by side, reminiscing in adulthood…are suddenly erased. In 1965, when my brother Kevin died (at my father’s hands, at The Gap), the world likely shifted in a way that was difficult to articulate, especially given the emotional norms of the time. Grief in that era was often private, restrained, and insufficiently processed, particularly for children who were expected to “carry on” without fully understanding or expressing their pain.

Early trauma like this can embed itself deeply. Children do not yet have the emotional language or coping mechanisms to process death fully, so the experience may become internalised as confusion, fear, or even a sense of abandonment. Over time, these feelings can manifest in subtle ways—heightened sensitivity to loss, difficulty trusting stability, or an underlying awareness that life can change irreversibly in an instant. Even decades later, the loss of a sibling can remain a defining emotional landmark, one that quietly shapes how future grief is experienced.

As life moves forward, new traumatic experiences often resonate with earlier ones. For many people who lived through the HIV/AIDS crisis of the 1980s and 1990s, trauma was not a single event but a relentless sequence of losses. The epidemic brought not only widespread death but also fear, stigma, and uncertainty. Friends, partners, and community members became ill and died in rapid succession, creating an environment where grief was constant and anticipatory.

This kind of repeated exposure to loss can compound earlier trauma. The death of close friends during the HIV/AIDS crisis may have reopened the emotional wound left by my brother’s death, layering new grief onto old. Each loss can feel both singular and cumulative…unique in its details, yet connected to a broader pattern of absence. The psyche does not neatly separate these experiences; instead, it absorbs them into a larger narrative of vulnerability and impermanence.

The HIV/AIDS crisis also carried a distinct social dimension that intensified its psychological impact. Many people affected by the epidemic faced stigma, discrimination, and a lack of understanding from broader society. Grief was often disenfranchised…unrecognised or minimised…particularly within LGBTQ+ communities. Funerals became frequent, yet public acknowledgment of the scale of loss was limited. This created a kind of collective trauma, where individuals not only mourned their loved ones but also navigated a world that often failed to validate their pain.

Living through such a period can fundamentally alter one’s relationship with mortality. When death becomes a regular presence rather than a distant inevitability, it can lead to hyper vigilance, anxiety, or a persistent sense of fragility. At the same time, it can foster resilience, empathy, and a deep appreciation for connection. Trauma is not a singular outcome; it is a complex interplay of harm and adaptation.

One of the defining features of lifelong trauma is how it evolves. In the immediate aftermath of loss, grief may be overwhelming and all-consuming. Over time, it may recede into the background, only to resurface unexpectedly…triggered by anniversaries, memories, or new losses. The death of my brother in 1965 and the losses during the HIV/AIDS crisis are not isolated chapters; they are interconnected experiences that continue to inform how I process emotion and memory.

Trauma can also influence identity. People who have experienced significant loss often carry a heightened awareness of life’s unpredictability. This awareness can shape decisions, relationships, and priorities. It may lead to a cautious approach to attachment, or conversely, a deep commitment to cherishing relationships while they last. It can also foster a sense of responsibility to remember…to keep alive the stories of those who have been lost.

Importantly, lifelong trauma does not mean lifelong suffering in a static sense. While the impact of past experiences may never fully disappear, it can be integrated in ways that allow for meaning, growth, and even a sense of continuity. Many people find that reflecting on their experiences…whether through writing, conversation, or creative expression…helps to transform trauma from something purely painful into something that also holds significance.

The memory of my brother Kevin, for example, is not only tied to the moment of his death but also to the relationship I shared and the person he was. Similarly, the friends lost during the HIV/AIDS crisis are part of a broader narrative of community, resilience, and love in the face of adversity. Remembering them can be an act of honouring, not just mourning.

At the same time, it is important to acknowledge the ongoing effects of trauma. Feelings of sadness, anger, or unresolved grief may still arise, even many years later. These responses are not signs of weakness or failure to “move on,” but rather indications of the depth of the connections that were lost. Trauma does not adhere to a timeline, and healing is not about erasing the past but about finding ways to live alongside it.

Support, whether through personal relationships, counselling, or community, can play a crucial role in this process. Sharing experiences with others who understand…particularly those who lived through similar events…can help to validate and contextualise feelings. It can also reduce the sense of isolation that often accompanies trauma.

Ultimately, lifelong trauma is a testament to the enduring impact of human connection. The pain of loss reflects the significance of what was lost…the relationships, the shared moments, the lives intertwined with your own. While the experiences of 1965 and the HIV/AIDS crisis are marked by profound grief, they also speak to the capacity for love, resilience, and remembrance.

In this way, trauma becomes part of a larger story…not just of loss, but of survival and meaning. It is carried forward, not as a weight that defines you entirely, but as a thread that contributes to the richness and complexity of your life.

Are You Kidding Me?

April 18, 2026Article, Gay Interest, General Interest, Health Information, HIV/AIDSAIDS, HIV, HIV hoaxes, HIV misinformation, HIV/AIDStimalderman

The persistence of HIV hoaxes represents a troubling intersection of misinformation, stigma, and public health risk. Since the early days of the HIV/AIDS epidemic in the 1980s, myths and conspiracy theories have circulated alongside scientific advances, often undermining prevention efforts and deepening fear. Understanding how these hoaxes arise—and why they endure—is critical to addressing their impact.

One of the most common HIV-related hoaxes is the denial that HIV causes AIDS. Despite overwhelming scientific consensus, a small but vocal group has promoted the idea that HIV is harmless or that AIDS results from lifestyle factors, drug use, or even pharmaceutical conspiracies. These claims gained traction in the 1990s and early 2000s, amplified by fringe publications and, later, online platforms. The consequences have been severe. In some cases, individuals influenced by denialist beliefs have refused life-saving antiretroviral therapy, leading to preventable illness and death.

Another category of hoaxes involves false claims about transmission. Stories about HIV-infected needles hidden in public spaces—such as cinema seats, petrol pumps, or ATM machines—circulate periodically, often accompanied by alarming warnings to “be careful.” While these messages spread quickly via social media and messaging apps, public health authorities have repeatedly found no evidence supporting such incidents. These hoaxes exploit fear and misunderstanding about how HIV is transmitted, which in reality requires specific conditions such as the exchange of certain bodily fluids, not casual contact.

Similarly, there are persistent myths about “miracle cures.” From herbal remedies to unproven alternative treatments, these claims often target vulnerable individuals seeking hope. While some alternative therapies may support general wellbeing, none have been proven to cure HIV. Antiretroviral therapy remains the only scientifically validated treatment that allows people living with HIV to lead long, healthy lives and significantly reduces the risk of transmission. Hoaxes promoting fake cures can lead people to abandon effective treatment, with serious health consequences.

The rise of the internet and social media has accelerated the spread of HIV misinformation. Platforms that prioritise engagement can inadvertently amplify sensational or controversial content, regardless of accuracy. A dramatic or fear-inducing story is more likely to be shared than a measured, evidence-based explanation. This creates an environment where hoaxes can spread rapidly, reaching audiences far beyond their original source.

Stigma plays a major role in the persistence of these hoaxes. HIV has long been associated with marginalised groups, including gay men, sex workers, and people who inject drugs. Misinformation often reinforces harmful stereotypes, portraying HIV as a moral failing rather than a medical condition. This stigma discourages open discussion, testing, and treatment, allowing both the virus and the myths surrounding it to persist.

Education is one of the most effective tools for combating HIV hoaxes. Comprehensive, evidence-based information about transmission, prevention, and treatment helps dispel myths and empowers individuals to make informed decisions. Public health campaigns have made significant progress in recent decades, promoting messages such as “Undetectable = Untransmittable” (U=U), which highlights that people with HIV who maintain an undetectable viral load cannot pass the virus on sexually. However, these messages must compete with a constant trickle of misinformation.

Critical thinking and media literacy are equally important. Encouraging people to question the source of information, check for scientific evidence, and consult reputable organisations can reduce the spread of false claims. Health authorities, researchers, and community organisations must also remain proactive, addressing new hoaxes as they emerge and communicating clearly with the public.

It is also essential to approach the issue with empathy. People who believe or share HIV hoaxes are not always acting maliciously; many are responding to fear, confusion, or a lack of access to accurate information. Shaming or dismissing them can reinforce distrust. Instead, respectful dialogue and accessible education are more likely to change minds and build trust.

HIV hoaxes are more than harmless rumours—they can have real and dangerous consequences. By undermining trust in science, spreading fear, and discouraging effective prevention and treatment, they pose a significant challenge to global public health. Combating them requires a combination of accurate information, critical thinking, and compassionate communication. As science continues to advance in the fight against HIV, ensuring that truth keeps pace with misinformation remains an ongoing and essential task.

Looking Ahead with AI for the Blind & Vision Impaired

March 28, 2026Article, General Interest, Health InformationAI, blind, sight aids, Vision Australia, vision technology, vision-impairedtimalderman

Artificial intelligence is rapidly transforming accessibility, offering powerful new tools that enhance independence, safety, and quality of life for people who are blind or vision impaired. Once limited to assistive devices like canes or guide dogs, support systems are now increasingly digital, intelligent, and deeply integrated into everyday life.

One of the most significant breakthroughs lies in computer vision—AI systems that can interpret and describe the visual world. Applications like Seeing AI and Be My Eyes use smartphone cameras and AI to narrate surroundings in real time. These tools can identify objects, read printed text aloud, recognize faces, and even describe scenes such as a busy street or a grocery shelf. For someone with vision impairment, this transforms a smartphone into a powerful, pocket-sized assistant that bridges the gap between sight and sound.

Navigation is another area where AI has made profound improvements. Traditional GPS systems often lack the precision needed for safe pedestrian travel, but AI-enhanced navigation apps now provide detailed, context-aware guidance. For example, Google Maps has introduced features tailored for visually impaired users, offering voice guidance that includes landmarks, intersections, and alerts for obstacles. Combined with wearable devices like smart glasses, AI can provide spatial awareness, helping users navigate unfamiliar environments with greater confidence and independence.

Text recognition and speech synthesis have also evolved dramatically. Optical Character Recognition (OCR), powered by AI, allows users to scan books, menus, mail, and labels, converting them into spoken words instantly. This removes reliance on others for reading everyday materials. Meanwhile, advances in natural-sounding text-to-speech systems mean that information is delivered in more human-like, less robotic voices, making long listening sessions more comfortable and engaging.

AI is also reshaping education and employment opportunities. Students who are blind or vision impaired can now access textbooks, diagrams, and digital content through AI-driven platforms that convert visual information into accessible formats. In workplaces, tools that transcribe meetings, describe visual presentations, or assist with screen navigation are leveling the playing field. Software like JAWS screen reader and NVDA screen reader have incorporated AI features to better interpret complex web content, making it easier to browse the internet, manage documents, and communicate professionally.

Social inclusion is another powerful benefit. AI-powered accessibility tools enable greater participation in social media, entertainment, and communication. Image description features on platforms like Instagram and Facebook automatically generate alt text, allowing users to understand shared photos. Streaming services are also improving audio descriptions using AI, giving richer context to movies and television shows. This ensures that people with visual impairments can engage in shared cultural experiences more fully.

Healthcare is also being transformed. AI can assist in early detection of eye diseases such as Glaucoma and Diabetic Retinopathy by analyzing retinal images more quickly and accurately than traditional methods. Early diagnosis can prevent or slow vision loss, highlighting AI’s role not just in accessibility, but in prevention and treatment as well.

Despite these advances, challenges remain. Accessibility tools can be expensive, and not all technologies are universally designed with inclusivity in mind. There is also a learning curve associated with adopting new tools, particularly for older users. However, as AI continues to evolve and become more widespread, costs are likely to decrease and usability will improve.

Ethical considerations are equally important. Developers must ensure that AI systems are trained on diverse datasets to avoid biases that could limit their effectiveness. Privacy is another concern, especially for applications that rely on cameras and real-time data processing. Ensuring that users maintain control over their data is essential for building trust.

Looking ahead, the future of AI for the blind and vision impaired is incredibly promising. Emerging technologies such as real-time object tracking, emotional recognition, and advanced wearable devices could further enhance independence. Imagine a world where AI not only describes the environment but anticipates needs—alerting a user to a friend approaching, a bus arriving, or a hazard ahead before it becomes a problem.

In conclusion, AI is not just a technological advancement; it is a tool for empowerment. By breaking down barriers to information, mobility, and communication, it is helping people who are blind or vision impaired lead more independent, connected, and fulfilling lives. As innovation continues, the focus must remain on inclusivity, ensuring that these benefits are accessible to all who need them.

A 40 Year Journey Into (And Out Of) Fear Part 7

February 23, 2026Article, biography, Gay Interest, History, HIV/AIDSAIDS, Gay, HIV, HIV/AIDS, Lazarus syndrome, long-term survival, return to worktimalderman

One of the major problems that concerned both my doctor and myself was my weight. Having dropped to 48kg when admitted to Marks Pavilion, and being of slight build, I was having trouble putting it back on. Fortunately for me, the Albion Street Clinic started running a Deca-Durabolin (an injectable anabolic steroid) trial at this time to attempt to counter the effects of Wasting Syndrome, a common problem within the AIDS demographic. I’m not sure this far down the line of it’s duration, but I think it was 6-8 weeks, with a weekly injection, and weigh-in. What I do remember about it was the drastic change to my eating habits. For the period of the trial, I was obsessed with eating! From the moment I woke up, to the time I went to bed…all I thought about was food! I was continually planning my next meal, my next snacks! The (successful) end to this was a meteoric weight gain in a very short period of time. My usual weight was around 64kg…by the time the trial ended I was at 84kg. On going out for dinner with friends I hadn’t seen for a while, one guy exclaimed “What have you done…you look like a teddy bear!”. To be honest, I was thrilled to have put so much on, especially seeing how I had seen myself in the low, and scary, weight range. I’m thankful to say that after the trial ended, my weight dropped back to my usual range.

There is a big problem with surviving AIDS, and spending 18 months recovering and keeping busy with doctors, clinics, hospitals, peer groups, and treatment compliance sessions…and having a lot of same either end, or become more spread out…BOREDOM! Sitting at home watching “Days of Our Lives” and “The Bold and the Beautiful” daily is not a fulfilling experience! But what to do was the big question. Not fit enough to return to full-time work, and not wanting to return to my old profession in retail. As frightening as the whole AIDS experience had been, its lasting legacy was the overwhelming desire to change my life direction. It made me realise how much of my life I’d wasted doing work I hated, and never being brave enough to take the leap to follow my dreams, to step into the unknown with confidence! This was the point where everything changed, where I finally found enjoyment and fulfilment in my life’s choices.

But the question still remained…how to take the first step? I had been receiving “Talkabout” for some time, and recollected that I had seen an ad for volunteering at the…then…PLWHA office in Darlinghurst. A phone call, and a meeting with another volunteer in the Oxford Street offices…and I found myself on the reception desk, initially one day a week, but it was a fun office to be in, so I started turning up daily. This was also my first encounter with computers (other than my experiences in the 80s with owning a Commodore 64). This pushed me to do courses in basic computing, and the Microsoft Office Suite. Around the same time I did a Peer Group Facilitator course with ACON, brought about by me having done a HIV/AIDS survivor group with them. I went on to facilitate some groups.

After around 6 months on reception, Jo Watson…the then Research Officer…asked me if I’d like to work with her as an assistant research officer. The office manager (Ryan McGlaughlin) interviewed me and I got the job. It was here that I wrote my first article for “Talkabout”, a quite humorous piece on my doctor, Cassy Workman. Though not named, it was obvious (by those who knew her, or were patients) who it was about. From this point I became a regular contributor to Talkabout, and 28 years later, I’m still writing for the magazine…with occasional breaks! I also became a member of the Talkabout Working Group. Like many occasions in community groups, funding dried up, and I had to move on.

It was just after this that I was informed that a research position was opening up with another community-funded project called Positively Working. Having survived AIDS, and now being in a position to orientate myself to new work experiences…outside what I had been doing post AIDS… it was a position I slotted into quite neatly. At Positively Working, we were compiling a report (I was working with Sonia Lawless) on the return-to-work needs of guys like me who had survived AIDS, and we’re now faced with the very real situation of…what do I do now; and where the hell do I go now! I personally interviewed a number of the guys, and it was quite eye opening! Once again, after six months the funding dried up. We got the report out, and once again I was faced with what to do!

There was one very interesting…and disturbing…occurance that resulted from my time there. Several of the guys I interviewed mentioned that they had used the “services” of a supposed HIV/AIDS employment service on Oxford Street called “Options”. Evidently Options had been using guys attending there as a free workforce in the office under the guise of “work experience”. I was very angry to hear this, and decided, as a writer for Talkabout, to investigate and expose this issue. I approached the office as a return-to-work client. Not only were they using their clients as an unpaid workforce, they were also not providing the services they were touting, to help guys break back into the workforce. Clients were being placed in front of computer screens with the usual run-of-the-mill employment services, and told to find a job. Contrary to their name, Optoons provided no options.

I wrote a scathing article on them for Talkabout. The editor forwarded the draft onto them, basically saying this is about to come out! Well, didn’t the shit hit the fan! The manager, Peter somebody, demanded to see me. I turned up at his office, and he tried the good old sweet talk! Naw, didn’t sway me. The threats came next, to sue Talkabout, the editor, and me! I was amused! Anyway, to calm the waters, and ensure no action was taken, the editor did a rewrite. I wasn’t happy about it, but at least wanted Options thrown into the spotlight, so allowed a very, very watered down piece to be published. Several months later, Options closed. I just smiled!

I undertook Positive Speaker Bureau training in 1998. My first gig was to a group of nurses at the Albion Street Centre. At the end of the talk, I opened the floor to questions. The final question floored me, as training hadn’t prepared me for this one…did I have survivor guilt? I did…after a long pause…give an answer. Yes, I did! I spent 12 years as a PSB speaker, being quite in demand with community groups, universities, and nurse training talks. I had no problems filling an hour. I was also on the PSB working group.

Two of our major community groups instigated return-to-work groups, but in many respects they missed the mark. The Positively Working report pointed out that one of the major requirements of AIDS survivors contemplating how to move on, or approach a return to the workforce, was choices, be it returning to their previous profession, or taking up education or training, or a myriad of other options such as opening a business, or moving a hobby to a business. What they were finding in the groups that were set up was a repeat of information that wasn’t new to them, or of no use at all. There needed to be more options than resume writing, or interview techniques. One project that did have a different approach was “Reconstruction”, a group facilitated by Pene Manolas. In my own time, I did a number of talks at these group meetings, encouraging guys to follow dreams and desires to find more fulfilment in lives now “reset to zero” and going off in new directions.

In 1999, I was on a very unpleasant…understatement…liquid protease inhibitor called Retonavir. It was very effective, but disgusting to take. Cassy Workman supplied her patients on it with gel capsules and a dropper. Putting it into the capsules made it a lot easier to take. I made an appearance on a popular television series at the time called “Healthy, Wealthy & Wise”, who were doing a segment on HIV and it’s impacts. I can be seen sitting in a park in The Rocks, and filling gel capsules with Retonavir. I guess that was my 15 minutes of fame!

Also in 1999, following my stint with the Positively Working project, I briefly returned to my old retail career…but as a cash office supervisor this time, with Angus & Robertson booksellers in the city. The manager there had a large group of gay friends, so when, during my interview, I explained a long absence from employment on AIDS and recovery, she understood exactly what was going on. It wasn’t why I got the job, but my long retail background on cash handling.

1999 was another busy, and scary, year. I noticed I was having problems walking a straight line up the footpath. It wasn’t neuropathy, as at that stage it wasn’t as bad as now. As I walked, I drifted to the left of the path, and had difficulty getting myself back to the centre. Over a few weeks, it got progressively worse. At one stage I was using a walking stick to maintain balance. Cassy sent me to see Bruce Brew, a well known neurologist at St. Vincents. He was baffled, as was Cassy. At one stage he sent a letter to Cassy saying he suspected it may be PML (Progressive multifocal leukoencephalopathy is a rare, severe, and often fatal viral brain infection characterised by progressive white matter damage. It is caused by the JC virus (JCV), which lies dormant in most adults but activates in individuals with severely compromised immunity. Common in HIV/AIDS, cancer, or patients on specific immunosuppressants, it causes rapid neurological decline). A very scary prospect! AIDS dementia was another possibility.For her part, Cassy ordered up a raft of tests…iron, folate, B12, cortisol, thyroid, CT scan, gallium scan, Addison’s disease. The last resort was an MRI! And there it was! THE VIRUS…on my brain! It could frightened be seen in the scans! During a drug combination change, it had picked a small opportunity when the new combination was starting to kick in to cross the blood/brain barrier, and up into my head. The solution was actually very simple…when the new combination kicked in, it kicked the virus out.

I was at A & R’s for about 4 months…and encountered the difficulties other guys had of obtaining meds from hospital pharmacies during lunch breaks, and fitting in doctors appointments…when I got a phone call from Bill Whittaker (now deceased) to help out doing data entry for the AIDS Research Initiative, which was run out of Cassy’s medical practice in Little Oxford Street (called Ground Zero Medical, as it was on the site of the original Club 80). So I returned to Darlinghurst!

It turned out to be a double job. On days I wasn’t working for the ARI, I was doing reception work in the medical practice. It was here on a working day in the practice that I developed excruciating pain in my back, in the kidney area. Cassy diagnosed Indinavir sludge, a build up of Indinavir in the kidneys. I was told to drink a lot of water…it didn’t help! I spent a good part of the day in the nurses station with Janice (the practices nurse) unable to keep still because of the pain, which just wouldn’t let up! Cassy checked on me a couple of times, but didn’t suggest I go to A & E. By mid afternoon, Janice took it upon herself to call a taxi to take me to St. Vincent’s. I needed to have a stent inserted in my kidneys to drain the sludge.

I was so disappointed that Cassy had been so blasé about it that I quit her practice. And her as my doctor!

A new relationship started with Dr David Austin, at Holdsworth House Medical Centre.

Disabling The Disabled

September 7, 2025Article, Health Informationask permission, disability, disabled consent, enabled not disabled, people living with disabilitiestimalderman

Can I be blunt here? One of the biggest problems of living with disabilities is that people think you are disabled!

Forgive me for delving into my nightly vice of “Home and Away” but they were covering the touchy subject of Alzheimer’s recently. Irene Roberts had been diagnosed with this, and not only were they handling the subject quite sympathetically, there is a touch of scary realism that many of us with disabilities are faced with. Irene had decided to travel overseas for whatever remains of her lucid periods. However, John Palmer is convinced that this is a bad decision on her part, and was being quite vocal about it, telling her that travel overseas is dangerous, and that selling her home to finance it would leave her with no assets. Irene was sticking with her decision, and had put plans in place to cover any contingency. But can you see what John was done here? He’s decided that seeing as Irene has to deal with the disabling effects of Alzheimers, that she’s become incapable of making decisions for herself. Everyone is doing what they consider to be helping her…but no one asks her if that is what she wants! She doesn’t necessarily want things to be easier! She wants to be seen as an independent person, capable of making her own decisions!

Yes, this is only happening on a daily soap, but it raises an important issue…the attempts by outside forces to influence the decisions of someone with a disability, attempts to downplay their ability to make decisions, to try to control their lives, and disempowers them.

I’m legally blind (an important label when accessing services), and have mobility and balance issues due to medication-induced peripheral neuropathy. I’m on an aged care home support package, and access services through a service provider. Overall, I’m pleased with the services I get, which includes cleaning and assisted shopping. One of the workers who takes me shopping mothers me! I hate it…my friends will tell you I’m very independent…and despite attempts on my part to assert that I do not like it, and can make my own decisions, they persist, so I just grin and bear it. I know they mean well, but they have been taught that disabled people are DIS-abled, so they need to take control when out with us.

Many well-intentioned people make the mistake of trying to take control from us, with unwanted assistance. When I used to use a white cane (something I no longer use, as they can be dangerous on badly maintained paths and concourses), when crossing roads at crossings or lights, they would just grab my arm to guide me across. It would seem logical to me that if I’m out and about on my own, that I’m capable of doing things like crossing roads without help. The problem is…they don’t ask if I need help, it is just assumed I do. It is not only rude, it’s an attempt to take away my power to decide things for myself!

Every morning I walk my dog, I walk down the street to meet friends for lunch, or to do shopping. I go to an exercise physiology gym to do balance and stretch classes (they go out of their way so ensure I can navigate a very equipment-crowded gym, and that my requests for easily seen equipment…and placement of…during classes is seen too). Obviously I write articles, using a large font. I read books, also using a large font, or access audiobooks. I look after myself on a day-to-day basis, doing laundry, bathing, preparing meals, I memorise the number of steps I need to negotiate, in the absence of disability ramps, the safest routes to take to access shops and services. So I actually lead a pretty normal, mundane life despite the absence of vision. If I need to access things in unfamiliar territory, I either use my service providers drivers, or ask friends to go with me. In other words, I’m regulating my own life. If you want to assist me…please just ask me if I need help!

Despite the Invictus Games, the disabled Olympics, and other peer led examples of blind and physically disabled activities, there is still a perception that when we are in public places, we need to be helped, as we are incapable of making decisions for ourselves. Please…don’t just move in to help without asking permission! We are more than capable of developing our own coping mechanisms. This is how we empower ourselves. Of course, this doesn’t apply to everyone who wants to help, but experience has taught me that many act without thinking first.

Remember…if we need help, we’ll ask! At that point, we appreciate it.

A 40 Year Journey Into (And Out Of) Fear Part 6

September 4, 2025Article, Autobiography, Gay Interest, Health Information, History, HIV/AIDSAIDS, antiretrovirals, HAART, HIV, HIV personal stories, new life decisions, pandemictimalderman

We had been forewarned! Told that the new antiretrovirals were game changers. That people who were on the brink of death could be reprieved, could, like Lazarus, be brought back to life. The community organisations were given time to prepare for a change in how HIV/AIDS was handled! Did they listen? From my perspective…no!

I was discharged from Prince Henry Hospital on the 19th June 1996, after ten days in hospital. That was how quickly things were turned around. It was winter. I weighed just under 50kg, and I really felt the cold. I got a taxi from the hospital to Bondi Junction. My first port of call was Target for a new duna, and warm clothing, then home.

And so began a period of self-imposed boredom. For those of us who survived the final ravages of AIDS, we were, for a time, in a no-mans land. Caught between recovering from something we thought would be our end (and under earlier circumstances would have been), and having to mentally and physically readjust ourselves to an ongoing life, with minimal support services, not knowing what to do with ourselves, and realising that nobody else knew what to do with us either. It was a new world for all of us!

For anyone who thinks that surviving something as devastating as AIDS would send me back to my old life…think again! For the next 18 months, life became an often tiring and frustrating round of clinics, doctors appointments, specialists, support services, support groups, and pharmacy trips. When not doing that, I was stuck in front of the television watching “Days of Our Lives” and other trash daytime television. I ruminated on, and disected my previous life, as it was now a pre-AIDS, and post-AIDS existence…as that is what it was! It wasn’t a life! Change was going to be essential!

So reality started setting in…where exactly was I going from here? Taking vast amounts of antiretrovirals came with its own problems. In these early days of HAART, compliance was drummed into you. The drugs came with both dietary and time constraints. You often couldn’t eat fatty foods prior to dosing, or they had to be taken on an empty stomach. This both restricted eating out with friends, or involved rising at ridiculous times to conform. Likewise, doses had to be eight hours apart, so you were often getting out of bed in the early hours just to take pills. So I was often tired, and cranky! Added onto an already heavy pill burden were prophylaxis drugs like bactrim, dapsone, ketaconizole, clarithromycin, and the list goes on, which were often taken a couple of times daily. Then we have side effects…mainly diarrhoea and nausea. I was getting scripts for Imodium as I was buying fifteen by five boxes (yes, 75) at a time. If I was lucky, they’d last one month. They often didn’t! A bucket of Napisan was permanently in the bathroom for soiled underwear. It was a nightmare, and I often wondered if I had survived AIDS, to die of organ failure from all the drugs I was taking! It sounds like an exaggeration when I tell people that initially I was taking around 340 pills a week…but just look at Imodium, where I was taking a staggering 140 pills a week, or more!

Help came from the wonderful, empathetic Pene Manolas, and her “Calao” Project. Caleo was a treatment management program, whose sole purpose was to encourage and empower those attending to remain compliant despite the burdensome load of pills we were taking. Over the 6 (or 8) weeks of the program you were given tools to help you achieve that aim. It was incredibly successful, and lasted for 2 years, then ceased due to funding. It was not my last encounter with Pene.

At the outpatient eye clinic at Prince of Wales (POW) hospital in Randwick, I was still attending on a monthly basis, and continued, at least for a time, to get the ganciclovir injections directly into the left eye. In 1998, Professor Patrick Versace asked me if Ivwas willing to participate in the Vitrasert Implant trial. The tiny implant was inserted into both eyes, and leached ganciclovir into the eyes over a 9 month period. The chances of developing a cataract were estimated at 4%. I was a more than willing participant in this trial, knowing how stressful it was having the intraocular injections. So, two operations to insert the implants, which were held in place with a stitch. The 4% chance of developing cataracts became 100%, so then another two operations to remove the cataracts, and insert new lenses. The whole sad part of this was, that with HAART proving so successful at keeping opportunistic illnesses away, they were never needed, despite their success. It is still present in my right eye.

Then the panic attacks started. I would wake up during the night and feel like my bedclothes were suffocating me, and had to throw them off. I’d get claustrophobic in underground trains, and stopped getting them. I had a panic attack one Sunday night, home on my own watching television. A gay lifeline had been established by one of the community groups… can’t remember who. I rang the line, needing someone to talk to, only to find their phones weren’t manned on Sundays…just an answering machine. They rang me the next day to apologise, but it would have been a bit late if I was suicidal!

I had a transition period getting used to bad vision, and only one eye. I had a couple of serious accidents. I was on my way to the POW eye clinic one week day, and got caught in this crush of people rushing to get a bus on Crown Street. There was a wooden bus seat just out of my line of vision, and my knees hit it, and I went for a sixer. Took the skin off my knees and shins. Only one guy stopped to help me! One! He checked me over, and despite how serious the wounds were, I told him I was on my way to the hospital anyway. He saw me onto the bus, and the nurse in the eye clinic patched me up. The second time, on the opposite side of Crown Street, I tripped over some tree roots which had pushed the asphalt up. This time the skin was off both knees. I then realised that I had no perspective in my one working eye…the footpath looked flat to me. I started slowing down my walking from that time on. My peripheral neuropathy was setting in at this stage as well, moving from my feet to my ankles and lower shin. This caused me to stagger when I walked, and was responsible for getting me banned from three gay hotels over time. I wrote a letter to the Star Observer about it when the bouncers denied me entry to the Colombian Hotel on the night of my 50th birthday, and refused to get a manager or supervisor for me to speak too. The Colombian apologised in a return letter, saying the bouncers had been out of line.

The most serious falls happened in Bondi. I went to visit a favourite gift store down there, and while wandering around the store, my legs just gave out on me and I collapsed on the floor. The shop assistant, who had been talking to the owner, helped me up. Five minutes later, it happened again. Thankfully I didn’t break anything. But this time, with a frustrated look on their faces, without asking me what was wrong (in retrospect, I should have requested an ambulance) and assuming I was either drunk or drugged, just grabbed my arms, ushered me out of the shop, and sat me on the footpath up against their window. I was in a pretty serious state of shock, not knowing what was going on. I sat there for over an hour, not game to try standing again in case the same thing happened. When I eventually tested them, they seemed to be fine. I started walking home…we had moved from Penkivil Street to Ocesn Steet at this time…up Bondi Road. Deciding to visit a cafe on the other side, I crossed at an intersection that had both lights, and a small pedestrian crossing. I crossed through the lights fine, but on using the crossing my legs just gave out again, and I collapsed on the road, hitting my head on the gutter. Thankfully there was no turning traffic, and a guy sitting in the window of a nearby pub rushed out, grabbed me and helped me to the footpath. I eventually got upl had a coffee in the cafe, and walked home. The gash on my head was serious enough to go to hospital. It never happened again, though I suspect it was a precursor for what was to come!

Feeling a bit lonely and outcast at this time, I decided to try a personal classified in the Star Observer. I was quite open about my HIV status, and that I was damaged goods (yes, I really did say that!) from AIDS. I received about 10 letters in reply…I still have them…all from HIV+ guys. I met a number of them, though none really compatible except for about 3. One was a serial replier to classifieds whom I had been warned about. He was a bit of a problem, so dropped very quickly. Had a one-nighter with another (I’d had no secxual encounters for about two years at this time), and I liked him, but he didn’t want anything further. Then I met Michael, who lived at Rose Bay. We started a bit of a “thing”, though I think it was more a matter of us both being lonely, more so than being compatible, and we both had someone to go places with. Having had a number of bad experiences through the classifieds, the first thing he said to me when I knocked on his door was “Wow…you’re actually good looking!”.

Between 1996, and 1997 antiretrovirals started being pumped out at a staggering rate. Over this period, I must have been, in HAART combinations of three or four drugs, on every drug that was released (thank heavens for the PBS, who approved them very quickly). These included AZT, 3TC, Indinavir (a high dosage caused nausea), Nelfinavir (caused chronic diarrhoea), Saquinavir, Neverapine, Retonavir (more on this shortly), Combavir (AZT+ 3TC)l Efavirenz, and Abacavir. The quick approval of drugs, due to their efficacy, had its drawbacks. Long term side effects often popped up as time went on, for example it was found that Indinavir could cause kidney stones. For me, with both AZT and 3TC still being included in my combinations, my peripheral neuropathy got worse (even now in 2025 I have totally numb feet, which now affects my balance).

In early 1998, through a mutual friend I was out with one Sunday night, I met David in the bottom bar of the Midnight Shift. I was in a casual relationship with Michael, and he was in a relationship as well. We finally surfaced a couple of days later, both deciding to end our current relationships. David and I then went on to be in a relationship for 16 years.

Nelfinavir was the worse drug of all as far as diarrhoea went. David and I were both on it, and it was a nightmare. We were both scared to go out for any length of time, as we would inevitability be caught short. Nelfinavir gave you no warning (and it over rode any amount of Imodium) so you were often caught out grocery shopping, at a movie, or on a walk. We discovered that public toilets were disgusting! There were often underwear changes several times a day. I got so fed up with it restricting my life, that I just charged into Cassy’s consulting room, and demanded she change it! She did! Shortly after, David was also taken off it.

However, despite all this, my viral load continued to, initially, drop, then maintained itself at undetectable. My CD4 cells continued to do a slow, but constant, rise. Probably the only reason we put up with what we did.

But even more changes were coming!