Tag Archives: HIV

ACT UP and the HIV Pandemic in Australia: Activism, Protest and Lasting Change

June 11, 2026Article, Gay Interest, History, HIV/AIDSACT-UP, AIDS, Gay, HIV, HIV/AIDS, LGBTtimalderman

The history of HIV/AIDS in Australia cannot be told without acknowledging the role of activists who fought for the rights, dignity, and survival of people living with the virus. Among the most influential activist movements was ACT UP—the AIDS Coalition to Unleash Power—a grassroots organization that transformed HIV advocacy around the world. While ACT UP originated in the United States, its influence quickly spread internationally, including to Australia, where activists adapted its confrontational style to local conditions.

During the darkest years of the HIV/AIDS pandemic, ACT UP challenged governments, medical institutions, pharmaceutical companies, and public attitudes. Its members protested, educated, lobbied, and demanded action at a time when fear, stigma, and discrimination were often as deadly as the virus itself.

The Australian ACT UP movement may have been smaller than its American counterpart, but its impact was significant. It helped shape public policy, accelerated access to treatments, improved the rights of people living with HIV, and contributed to Australia’s internationally respected HIV response.

The Origins of ACT UP

ACT UP was founded in New York City in March 1987 by activist and writer Larry Kramer and a group of fellow campaigners frustrated by the slow response to the AIDS crisis.

At that time, AIDS was devastating gay communities in North America and Europe. Tens of thousands were dying, effective treatments were limited, and governments often appeared indifferent.

ACT UP adopted a simple but powerful philosophy: direct action.

Its slogan, “Silence = Death,” became one of the defining messages of the HIV era.

Rather than waiting for politicians or health authorities to act, activists organized demonstrations, media campaigns, occupations, and protests designed to force change.

The movement rapidly spread to cities across the world.

HIV in Australia During the 1980s

Australia identified its first AIDS cases in the early 1980s.

Like many countries, Australia initially faced uncertainty and fear. HIV was poorly understood, treatments were virtually nonexistent, and public anxiety was widespread.

However, Australia differed from many nations because health authorities worked relatively closely with affected communities, particularly gay men.

Organizations such as the Australian Federation of AIDS Organisations and state-based AIDS councils emerged early in the epidemic. These groups emphasized education, community engagement, and harm reduction.

Even so, frustration remained.

People living with HIV frequently encountered discrimination in healthcare, employment, housing, insurance, and social settings.

Many activists felt governments still moved too slowly while friends and partners continued to die.

This environment created fertile ground for ACT UP.

ACT UP Arrives in Australia

ACT UP chapters began emerging in Australian cities around 1989.

The most prominent groups developed in Sydney and Melbourne, although smaller networks operated elsewhere.

Australian activists drew inspiration from ACT UP New York but adapted their strategies to local circumstances.

Unlike the United States, where activists often confronted openly hostile government agencies, Australia’s healthcare system already incorporated a degree of community consultation.

As a result, Australian ACT UP activists frequently focused on improving policies rather than overturning them completely.

Nevertheless, their tactics remained bold and highly visible.

Members organized demonstrations, theatrical protests, die-ins, banner drops, public meetings, media events, and political lobbying campaigns.

They sought to ensure that HIV remained impossible for politicians and the broader public to ignore.

Who Were the Activists?

Unlike traditional organizations, ACT UP was deliberately decentralized.

There was no single Australian founder or national leader.

Instead, ACT UP chapters were driven by volunteers from diverse backgrounds.

Members included:

People living with HIV

Gay men

Lesbians

Healthcare workers

Scientists

Social workers

Artists

Family members of people affected by AIDS

Civil liberties advocates

Many participants had watched close friends die from AIDS-related illnesses.

Others were HIV-positive themselves and fighting for survival.

This personal connection gave the movement its urgency and passion.

For many activists, HIV advocacy was not an abstract political issue. It was a matter of life and death.

Fighting Stigma and Discrimination

One of ACT UP Australia’s most important goals was combating stigma.

During the 1980s and early 1990s, HIV remained heavily associated with fear and moral judgment.

People living with HIV were often portrayed as victims of their own behaviour or as threats to public health.

Many individuals concealed their diagnosis to avoid discrimination.

ACT UP challenged these attitudes directly.

Activists argued that HIV should be treated as a health issue rather than a moral failing.

They demanded respect for the dignity and rights of people living with the virus.

Through public demonstrations and media engagement, they humanized HIV and helped shift public perceptions.

Access to Experimental Treatments

One of ACT UP’s most significant campaigns involved access to new medications.

Before the arrival of effective combination therapy in the mid-1990s, treatment options were limited.

People with HIV desperately sought access to experimental drugs that might prolong life.

Australian activists argued that bureaucratic delays were costing lives.

They lobbied regulators and policymakers to accelerate approval processes and expand compassionate access programs.

ACT UP members became highly knowledgeable about medical research, clinical trials, and drug development.

They attended scientific conferences, scrutinized research data, and challenged pharmaceutical companies when necessary.

This level of scientific literacy was unusual for activist movements at the time.

Their efforts helped create pressure for faster evaluation and availability of promising therapies.

The Pharmaceutical Benefits Scheme

One of Australia’s strengths during the HIV crisis was the existence of the Pharmaceutical Benefits Scheme (PBS).

The PBS enabled Australians to obtain many medications at subsidized prices.

However, ensuring HIV treatments were included required sustained advocacy.

ACT UP and allied organizations campaigned vigorously to guarantee access to life-saving medications regardless of income.

The principle was simple: treatment should depend on medical need, not financial capacity.

This philosophy contributed significantly to Australia’s relatively successful HIV outcomes compared with countries lacking universal healthcare systems.

Public Demonstrations

ACT UP became known for creative and confrontational protests.

Demonstrations were carefully designed to attract media attention and spark public debate.

Some protests highlighted slow drug approvals.

Others focused on discrimination, funding shortfalls, or inadequate government responses.

Die-ins became a powerful symbolic tactic.

Participants would lie motionless in public spaces to represent those who had died from AIDS.

These visual protests conveyed the human cost of inaction more effectively than statistics alone.

Many Australians who witnessed such events gained a new understanding of the epidemic’s impact.

Relationships with Government

ACT UP’s relationship with government was often complicated.

At times activists worked cooperatively with policymakers.

At other times they became fierce critics.

This dual approach reflected Australia’s distinctive HIV response.

Governments were often more willing to engage with community organizations than those in many other countries.

However, activists remained determined to hold officials accountable.

When policies appeared inadequate, ACT UP members did not hesitate to protest publicly.

This combination of collaboration and confrontation proved highly effective.

The Arrival of Combination Therapy

The mid-1990s marked a turning point in HIV history.

The development of highly active antiretroviral therapy (HAART) dramatically reduced AIDS-related illness and death.

For many people living with HIV, what had seemed an inevitable death sentence suddenly became a manageable chronic condition.

ACT UP activists played an important role in ensuring these treatments became accessible.

Their advocacy helped maintain pressure on governments and healthcare systems to provide rapid access once effective therapies became available.

The impact was extraordinary.

Hospital wards that had once been overwhelmed by AIDS patients began to empty.

Life expectancy increased dramatically.

Communities that had endured years of loss finally experienced hope.

The Human Cost

The achievements of ACT UP came at a tremendous personal cost.

Many activists died during the epidemic.

Others spent years caring for sick friends and partners while simultaneously campaigning for change.

Burnout was common.

The emotional burden was immense.

Every meeting, protest, or campaign occurred against a backdrop of ongoing grief.

Activists were often mourning multiple friends while fighting for their own futures.

This reality gave ACT UP a moral authority that few political movements have ever possessed.

Its members were not merely advocates; they were people directly affected by the crisis.

Legacy Beyond HIV

The influence of ACT UP extends far beyond HIV/AIDS.

The movement transformed how patients engage with healthcare systems.

Today, patient advocacy groups routinely participate in discussions about clinical trials, treatment guidelines, and health policy.

This approach owes much to HIV activism.

ACT UP demonstrated that affected communities possess valuable expertise and deserve a seat at the decision-making table.

The movement also helped establish principles that remain central to modern public health:

Community consultation

Evidence-based policy

Harm reduction

Equitable access to treatment

Patient empowerment

Human rights protections

These ideas continue to influence responses to numerous health challenges.

Why Australia’s Response Was Different

Australia’s HIV response is often regarded as one of the most successful in the world.

This success did not occur by accident.

It resulted from collaboration between governments, researchers, clinicians, community organizations, and activists.

ACT UP contributed by ensuring that urgency never disappeared from the conversation.

While policymakers developed strategies, activists reminded them of the human consequences of delay.

While scientists pursued treatments, activists demanded faster access.

While society struggled with prejudice, activists insisted on dignity and equality.

The tension between cooperation and pressure helped produce better outcomes.

ACT UP emerged during one of the most frightening public health crises in modern history. Inspired by activists in New York but shaped by Australia’s unique circumstances, ACT UP chapters across the country became powerful voices for people living with HIV/AIDS.

Their campaigns challenged stigma, improved access to treatments, accelerated policy reforms, and ensured that the experiences of those living with HIV remained central to public debate. Through protest, education, lobbying, and direct action, they helped transform Australia’s response to the epidemic.

The movement’s legacy can still be seen today in Australia’s public health system, HIV treatment programs, and patient advocacy culture. More importantly, it lives on in the countless lives extended and improved because activists refused to remain silent.

At a time when fear and prejudice threatened to overwhelm compassion and science, ACT UP reminded Australia that people living with HIV were not statistics or symbols. They were human beings deserving dignity, healthcare, and hope. That message remains as relevant today as it was during the darkest years of the AIDS pandemic.

Tim Alderman ©️ 2026

How HIV Broke the Mould of Pandemics

June 8, 2026Article, Gay Interest, General Interest, Health Information, History, HIV/AIDSAIDS, discrimination, Gay, gay community, HIV, HIV/AIDS, homophobia, intolerance, LGBTtimalderman

Few diseases in modern history have altered society as profoundly as HIV/AIDS. Since the first cases were identified in the early 1980s, HIV has infected more than 85 million people worldwide and claimed over 40 million lives. Yet HIV was never a pandemic in the traditional sense. It did not spread through casual contact, airborne droplets, contaminated water, or insect vectors. Instead, it challenged almost every assumption about how pandemics emerge, spread, and are controlled.

In many ways, HIV broke the mould of pandemics. It forced medicine, governments, activists, and communities to rethink public health responses. It transformed scientific research, drug development, human rights advocacy, and patient involvement in healthcare. Unlike previous pandemics, HIV became not merely a medical crisis but a social, political, and cultural phenomenon that reshaped the modern world.

The Traditional Pandemic Model

Historically, pandemics have generally followed a familiar pattern.

Diseases such as plague, cholera, influenza, and more recently COVID-19 spread rapidly through populations. Infection can occur through everyday interactions, making containment difficult. Governments typically respond with quarantines, public health restrictions, vaccination campaigns, or improvements in sanitation.

The public generally fears catching these diseases through ordinary contact. Their spread is often measured in weeks or months rather than years.

HIV was fundamentally different.

The virus spreads primarily through unprotected sexual contact, contaminated blood, shared needles, and from mother to child during pregnancy, birth, or breastfeeding. Casual contact poses no risk.

This immediately set HIV apart from virtually every major pandemic that preceded it.

A Slow-Moving Pandemic

One of HIV’s most unusual characteristics was its timeline.

Most infectious diseases become apparent shortly after infection. HIV often remained hidden for years.

A person could acquire the virus and remain apparently healthy for a decade or longer before developing symptoms. During that time, they could unknowingly transmit the virus to others.

This long latency period made HIV extraordinarily difficult to track and control.

Traditional outbreak investigation relies on identifying sick individuals and tracing recent contacts. HIV’s delayed progression rendered many conventional public health tools less effective.

By the time the first AIDS cases were recognized in 1981, the virus had already been circulating internationally for years.

The First Pandemic of Identity

HIV also differed because it initially appeared concentrated among specific groups.

Early cases were identified primarily among gay men in cities such as New York, Los Angeles, and San Francisco. Soon afterward, cases appeared among people who injected drugs, recipients of blood products, and certain immigrant communities.

This led to the dangerous misconception that HIV was a disease of particular groups rather than a virus that could infect anyone.

Media coverage often reflected existing prejudices. HIV became associated with sexuality, morality, and social stigma in ways rarely seen with other infectious diseases.

Some religious leaders described AIDS as divine punishment. Politicians hesitated to address the epidemic. Many families rejected loved ones diagnosed with the disease.

As a result, HIV became not only a public health emergency but also a human rights crisis.

Stigma Became Part of the Disease

Perhaps no pandemic before or since has been so heavily shaped by stigma.

People with HIV frequently faced discrimination in employment, housing, healthcare, education, and personal relationships.

Many lost jobs after employers learned of their diagnosis. Some were evicted from homes. Children were excluded from schools despite posing no risk to classmates.

Fear often exceeded scientific reality.

Unlike influenza or COVID-19, where infection could result from a brief encounter, HIV transmission required specific behaviours. Yet irrational fears flourished.

People worried about sharing utensils, swimming pools, toilets, or handshakes with someone living with HIV.

Science eventually dispelled these myths, but the social damage persisted for decades.

Patients Became Activists

Another way HIV broke the mould was through the emergence of patient activism.

Historically, patients were expected to accept medical decisions made by experts.

The HIV epidemic changed that relationship forever.

Faced with governmental indifference and limited treatment options, people living with HIV organized themselves into advocacy groups. They educated communities, raised awareness, lobbied politicians, and challenged pharmaceutical companies.

Organizations such as ACT UP became internationally known for demanding faster drug approval processes and greater research funding.

Patients became informed participants in scientific discussions. Many learned the language of virology, immunology, and clinical trials.

Their activism transformed the relationship between medicine and the communities it served.

Science Moved at Unprecedented Speed

The response to HIV revolutionized biomedical research.

The virus itself was identified remarkably quickly. In 1983, researchers at the Pasteur Institute isolated the virus later known as HIV.

Scientists soon developed blood tests capable of detecting infection.

Researchers uncovered the virus’s mechanism of action, demonstrating how it attacked CD4 immune cells and progressively weakened the immune system.

This scientific progress was extraordinary given the complexity of the virus.

Yet despite rapid advances in understanding HIV, developing effective treatments proved far more difficult.

The Rise and Fall of AZT

In 1987, the drug AZT became the first approved treatment for HIV.

Initially hailed as a breakthrough, AZT generated enormous hope among patients and clinicians.

However, the drug had significant limitations. It was expensive, caused substantial side effects, and often lost effectiveness as the virus developed resistance.

While AZT extended survival for many people, it was not a cure.

Nevertheless, it marked the beginning of a pharmaceutical revolution that would ultimately transform HIV from a death sentence into a manageable chronic condition.

HIV Changed Drug Development

Before HIV, drug development often proceeded slowly and behind closed doors.

The urgency of AIDS forced regulators, researchers, and pharmaceutical companies to rethink the process.

Clinical trials were redesigned. Accelerated approval pathways emerged. Compassionate-use programs allowed desperately ill patients access to experimental treatments.

Many innovations introduced during the HIV crisis later became standard practice across medicine.

The lessons learned from HIV would influence responses to cancer, rare diseases, and even COVID-19 decades later.

Combination Therapy Changed Everything

The greatest breakthrough came during the mid-1990s.

Scientists discovered that combining multiple antiretroviral drugs dramatically reduced viral replication.

Known as Highly Active Antiretroviral Therapy (HAART), this approach transformed HIV treatment.

Instead of dying within a few years of an AIDS diagnosis, many patients began living long, productive lives.

Hospital wards once filled with dying young adults began to empty.

Funeral attendance among HIV communities declined.

For the first time, hope became realistic.

The impact was so profound that many clinicians describe the arrival of combination therapy as one of the greatest achievements in modern medicine.

A Pandemic That Created Communities

Unlike many pandemics, HIV fostered strong community identities.

Support groups, advocacy organizations, volunteer networks, and grassroots healthcare services emerged around the world.

In cities heavily affected by AIDS, communities created their own care systems long before governments responded adequately.

Friends became caregivers.

Partners became nurses.

Volunteers became counsellors.

Entire social networks developed around mutual support and survival.

The HIV experience demonstrated how communities can mobilize when institutions fail.

Global Inequality Exposed

The success of antiretroviral therapy revealed another uncomfortable reality.

While wealthy countries gained access to life-saving drugs, millions in developing nations could not afford treatment.

The contrast was stark.

In North America, Western Europe, and Australia, HIV mortality began declining dramatically.

Meanwhile, parts of sub-Saharan Africa experienced devastating losses.

Entire generations were affected.

Life expectancy plummeted in some countries.

Hospitals became overwhelmed.

The disparity sparked international debates about access to medicines, pharmaceutical patents, and global justice.

HIV exposed inequalities that had long existed within international healthcare systems.

Prevention Required Behaviour Change

Most pandemics are controlled through vaccines, sanitation, quarantine, or medication.

HIV demanded something different.

Prevention depended heavily on behaviour change.

Safer sex education, condom promotion, needle exchange programs, blood screening, and public awareness campaigns became essential tools.

These strategies often generated controversy because they involved discussions about sexuality and drug use.

Some governments resisted such programs for moral or political reasons.

Yet evidence repeatedly demonstrated that education and harm reduction saved lives.

The HIV pandemic forced societies to confront subjects many preferred not to discuss openly.

The Power of Undetectable

One of the most important discoveries in recent HIV history has been the concept known as “Undetectable = Untransmittable” or U=U.

Research demonstrated that people living with HIV who maintain an undetectable viral load through treatment do not sexually transmit the virus.

This finding transformed both medicine and public perception.

For decades, people living with HIV carried fears about transmitting the virus to partners.

U=U provided scientific reassurance while helping reduce stigma.

It also highlighted the extraordinary effectiveness of modern antiretroviral therapy.

HIV Became a Chronic Condition

Most pandemics eventually disappear, burn out, or become controllable through vaccination.

HIV followed a different path.

Today, there is still no cure and no universally effective vaccine.

Instead, HIV has become a chronic, manageable medical condition for many people with access to treatment.

Individuals diagnosed early and treated appropriately can often expect near-normal life expectancy.

This represents a remarkable transformation from the darkest years of the epidemic.

Few diseases have undergone such a dramatic shift in prognosis within a single generation.

Lessons for Future Pandemics

The HIV epidemic left an enduring legacy.

It taught public health officials that stigma can be as dangerous as disease.

It demonstrated the importance of community engagement in healthcare.

It showed that affected populations must be included in policy decisions.

It highlighted the necessity of global cooperation and equitable access to treatment.

It also revealed that scientific progress accelerates when governments, researchers, activists, and patients work together.

Many strategies used during subsequent health emergencies were shaped by lessons learned from HIV.

A Pandemic Unlike Any Other

More than four decades after the first AIDS cases were reported, HIV remains unique.

It was a pandemic that unfolded slowly rather than explosively.

It challenged social attitudes as much as biological systems.

It transformed patients into activists and activists into policymakers.

It changed drug development, public health, and human rights advocacy.

Most importantly, it demonstrated that pandemics are never purely medical events. They expose the values, fears, prejudices, strengths, and weaknesses of the societies they affect.

HIV broke the mould of pandemics because it defied conventional expectations at every stage. It spread differently, progressed differently, and demanded a fundamentally different response from governments, healthcare systems, and communities. More than a viral infection, it became a catalyst for social change, scientific innovation, and political activism.

The epidemic revealed the devastating consequences of stigma and discrimination, but it also showcased extraordinary resilience, compassion, and determination. Millions of lives were lost, yet millions more were saved through activism, research, and the relentless pursuit of better treatments.

Today, HIV stands as one of the defining public health stories of modern history—not simply because of the lives it affected, but because it changed how the world understands disease, healthcare, and human rights. Few pandemics have left such a profound mark on medicine and society. HIV did not merely challenge the world; it transformed it.

Tim Alderman ©️ 2026

The Political and Community Impact on Australia’s HIV/AIDS Response

June 5, 2026Article, Gay Interest, General Interest, HIV/AIDSAIDS, community groups, HIV, HIV/AIDS, LGBT, Neil Blewetttimalderman

When HIV/AIDS first emerged in the early 1980s, it triggered fear and uncertainty across the globe. Governments struggled to understand the disease, communities were overwhelmed by grief, and stigma spread almost as quickly as the virus itself. Yet Australia’s response to HIV/AIDS would eventually become recognised internationally as one of the most effective and pragmatic public health strategies in modern history.

That success did not happen by accident. It was shaped by an unusual and powerful partnership between politics, medicine, public health officials, and grassroots community activism — particularly from the gay community itself. Australia’s HIV/AIDS response became a rare example of governments listening to affected communities rather than simply imposing policies upon them.

The political and community impact on Australia’s HIV/AIDS response fundamentally changed healthcare, public policy, activism, and even Australian society itself.

The Early Years of Fear and Uncertainty

The first cases of AIDS in Australia were identified in the early 1980s, not long after reports emerged from the United States. At the time, HIV was poorly understood. Many people believed it was highly contagious through casual contact, and the disease quickly became associated with fear, morality, and discrimination.

The media often portrayed AIDS in sensational and frightening terms. Gay men were particularly targeted by public stigma, with some conservative voices framing HIV/AIDS as punishment for homosexuality. Fear spread throughout hospitals, workplaces, schools, and even families.

Yet unlike some countries, Australia’s political leadership did not fully descend into moral panic or denial. Although there were certainly moments of prejudice and political tension, Australia gradually adopted a public health approach grounded more in science than ideology.

This would prove crucial.

Community Activism Changes the Conversation

One of the defining features of Australia’s HIV/AIDS response was the role played by community organisations and activists.

Gay communities, particularly in Sydney and Melbourne, mobilised rapidly in response to the crisis. Organisations such as the AIDS Councils, gay rights groups, volunteer care networks, and grassroots educators emerged to support people living with HIV and to spread practical prevention information.

Rather than waiting for governments to act, affected communities took responsibility for educating themselves and others about safer sex practices. Peer education became central to Australia’s prevention strategy.

This was revolutionary at the time.

Instead of relying solely on top-down government messaging, Australia recognised that communities most affected by HIV were often best positioned to influence behaviour within their own networks. Gay men listened to other gay men in ways they might not trust politicians, police, or religious leaders.

Community-led campaigns openly discussed condoms, sexual health, and risk reduction in language that was direct and realistic rather than moralistic. This honesty helped save lives.

Importantly, many activists also fought against hysteria and discrimination. They challenged attempts to quarantine HIV-positive people, resisted calls for mandatory testing, and argued strongly for privacy protections and anti-discrimination laws.

The community response was not only medical — it was deeply political.

Political Leadership and Bipartisan Cooperation

Australia’s political response to HIV/AIDS was remarkable partly because it involved cooperation across party lines.

During the 1980s, federal Health Minister Neal Blewett became one of the key architects of Australia’s HIV strategy. Rather than treating HIV as purely a moral or criminal issue, Blewett worked closely with scientists, public health experts, and affected communities.

This collaboration was groundbreaking.

Blewett and other policymakers understood that driving vulnerable communities underground through fear or punishment would worsen the epidemic. Instead, Australia adopted a harm minimisation approach focused on education, prevention, confidentiality, and treatment access.

One of the most famous examples was the controversial “Grim Reaper” television campaign launched in 1987. The campaign used frightening imagery to warn Australians about HIV/AIDS and successfully captured public attention. However, it also generated criticism for increasing fear and unintentionally stigmatising people living with HIV.

Despite its flaws, the campaign reflected the seriousness with which Australia’s government treated the epidemic.

More importantly, political leaders resisted extreme measures proposed elsewhere around the world. Australia largely avoided mass criminalisation, forced quarantines, or widespread mandatory testing policies that some nations considered during the height of panic.

This balance between public health intervention and civil liberties became one of the defining strengths of the Australian model.

The Role of Harm Reduction

Australia’s response to HIV/AIDS was also shaped by broader public health philosophies emerging during the 1980s, particularly harm reduction.

Rather than pretending risky behaviours did not exist, Australian policymakers increasingly accepted that reducing harm was more effective than moral condemnation.

This approach became especially important in relation to intravenous drug use. Needle and syringe programs were introduced to reduce HIV transmission among injecting drug users. These policies were controversial at the time, with critics arguing they encouraged illegal drug use.

However, evidence consistently showed that harm reduction measures significantly reduced HIV transmission rates.

Australia became one of the first countries to widely implement needle exchange programs, and many public health experts credit these initiatives with preventing a far larger epidemic among injecting drug users.

Again, politics played a major role. Governments were willing — at least to some extent — to prioritise evidence-based health policy over purely ideological positions.

Medicare, PBS, and Treatment Access

Australia’s healthcare system also strongly influenced the country’s HIV response.

The existence of Medicare and the Pharmaceutical Benefits Scheme (PBS) meant that many Australians could access medical care and HIV treatments regardless of personal wealth. This was particularly important once antiretroviral therapies emerged in the 1990s.

In countries without universal healthcare, HIV treatment often became financially catastrophic. In Australia, subsidised access helped reduce some of the economic burden on people living with HIV.

This does not mean treatment access was perfect. Early HIV medications could still be difficult to obtain, and some rural or marginalised populations experienced barriers to healthcare. Nonetheless, Australia’s public healthcare infrastructure provided a stronger safety net than many comparable countries.

The PBS also reduced dependence on underground drug access networks such as the HIV buyers clubs that emerged in the United States.

Stigma, Loss, and Cultural Trauma

Despite Australia’s relatively effective public health response, the human cost of HIV/AIDS remained devastating.

Entire friendship groups were destroyed. Thousands of Australians died during the epidemic’s early decades, particularly before effective combination therapies became available in the mid-1990s.

For many gay men, the crisis became a defining generational trauma. Funerals became constant. Fear of illness and death shaped relationships, sexuality, identity, and mental health.

The social stigma attached to HIV could be brutal. Many people lost jobs, housing, family support, and relationships after disclosing their status. HIV-positive individuals often faced isolation and discrimination even within healthcare settings.

Community organisations stepped into this void. Volunteers provided hospice care, emotional support, meal services, counselling, and companionship for dying patients. In many cases, chosen families within the LGBTQ+ community became more supportive than biological relatives.

The emotional labour performed by these communities is difficult to overstate.

The Legacy of Activism

The HIV/AIDS crisis permanently changed political activism in Australia.

A new generation of activists emerged with sophisticated media strategies, lobbying skills, and public health knowledge. HIV advocacy groups became highly organised and politically influential.

Their activism contributed to broader social progress beyond HIV itself. The epidemic accelerated discussions about LGBTQ+ rights, anti-discrimination protections, sexual health education, and healthcare access.

The crisis also changed the relationship between governments and affected communities. HIV policy demonstrated that successful public health responses often require trust, consultation, and partnership rather than authoritarian control.

This lesson continues to influence responses to infectious diseases today.

Ongoing Challenges

Although HIV is now far more manageable medically, the political and social issues surrounding it have not disappeared.

Stigma still exists. Some people living with HIV continue to face discrimination and misinformation. Indigenous Australians, migrants, sex workers, and regional communities can experience unequal access to prevention and treatment services.

Funding pressures also remain a constant concern. Community organisations that played such a critical role during the epidemic often face financial uncertainty despite their ongoing importance.

At the same time, new prevention strategies such as PrEP have dramatically reduced HIV transmission rates in many populations. Australia is now considered one of the countries most likely to achieve virtual elimination of HIV transmission in coming decades.

This progress is itself a product of the political and community structures built during the height of the epidemic.

Conclusion

Australia’s response to HIV/AIDS stands as one of the country’s most significant public health achievements, but it was never solely a medical story.

It was a political story about governments choosing cooperation over panic.

It was a community story about ordinary people caring for one another during unimaginable loss.

It was an activist story about marginalised groups demanding dignity, science, and compassion in the face of fear and prejudice.

Most importantly, Australia’s HIV/AIDS response demonstrated that public health works best when affected communities are treated not as problems to control, but as partners in the solution.

That lesson remains just as important today as it was during the darkest years of the epidemic.

Tim Alderman ©️ 2026

Monotherapy in the Early Years of the HIV Pandemic: Promise, Limits, and Legacy

June 1, 2026Article, Gay Interest, Health Information, History, HIV/AIDSAIDS, AZT, controversy, HIV, HIV/AIDS, monotherapytimalderman

In the earliest years of the HIV/AIDS pandemic, doctors and researchers faced a terrifying medical crisis with very few tools available. By the mid-1980s, HIV infection had already claimed thousands of lives worldwide, particularly among gay men, haemophiliacs, intravenous drug users, and recipients of contaminated blood products. Patients often progressed from HIV infection to AIDS rapidly, developing opportunistic infections and cancers that the immune system could no longer fight. Amid fear, stigma, and desperation, the first generation of HIV treatments emerged. Central among these was the use of monotherapy — the treatment of HIV with a single antiretroviral drug.

At the time, monotherapy represented hope. It was the first real attempt to directly suppress HIV replication. Yet while it initially appeared promising, the limitations of single-drug therapy soon became clear. The history of HIV monotherapy is therefore both a story of medical innovation and a cautionary lesson about viral resistance, toxicity, and the complexity of treating chronic viral infections.

The first widely used HIV drug was Zidovudine, also known as AZT. Approved in 1987, AZT belonged to a class of drugs called nucleoside reverse transcriptase inhibitors (NRTIs). It worked by interfering with reverse transcriptase, an enzyme HIV needs in order to reproduce inside human cells. For the first time, clinicians had a medication capable of slowing viral replication.

The arrival of AZT was hailed as a breakthrough. In the context of a disease that was almost universally fatal, even modest improvements were seen as extraordinary. Early clinical trials suggested that AZT could prolong life, reduce opportunistic infections, and improve quality of life in some patients. Hospitals that had previously been overwhelmed with dying AIDS patients saw individuals temporarily stabilise or regain strength. For many people living with HIV, AZT symbolised survival and hope in a period dominated by grief and uncertainty.

However, the benefits of monotherapy were limited and often temporary. HIV is a retrovirus that mutates extremely rapidly. Because monotherapy relied on only one drug attacking one part of the viral replication cycle, HIV could adapt relatively quickly. Resistant strains of the virus emerged, sometimes within months of treatment beginning. Once resistance developed, the medication lost much of its effectiveness.

This rapid development of resistance was one of the greatest drawbacks of monotherapy. Doctors would often observe an initial improvement in patients, followed by renewed immune decline as the virus rebounded. Viral load testing was not yet routinely available in the late 1980s, so clinicians often relied on falling CD4 cell counts and worsening symptoms to recognise treatment failure. By the early 1990s, researchers increasingly understood that HIV could evolve around single-drug treatments with alarming speed.

Another major drawback was toxicity. AZT in particular was associated with substantial side effects, especially at the high doses initially prescribed. Patients frequently experienced nausea, headaches, fatigue, insomnia, and muscle pain. More serious complications included anaemia and bone marrow suppression, which sometimes became severe enough to require blood transfusions. Some patients found the treatment nearly as debilitating as the disease itself.

The dosing schedule also posed challenges. Early AZT regimens required patients to take pills every four hours, including throughout the night. Adherence was difficult, particularly for individuals already coping with illness, poverty, discrimination, or mental health challenges. Missing doses could further encourage drug resistance.

Despite these drawbacks, monotherapy did produce important benefits beyond immediate patient outcomes. It demonstrated conclusively that HIV itself was the cause of AIDS and that suppressing viral replication could improve health. This may seem obvious today, but during the 1980s there remained fringe theories and misinformation disputing the viral cause of AIDS. The partial success of AZT and similar drugs reinforced the scientific understanding of HIV pathogenesis.

Monotherapy also accelerated pharmaceutical research. Following AZT, other NRTI drugs such as Didanosine, Zalcitabine, and Stavudine entered clinical use. Although many were still used individually at first, researchers increasingly experimented with combining drugs. Clinical experience with monotherapy made it clear that HIV treatment needed a more aggressive and sustained approach.

By the mid-1990s, the concept of combination therapy had become central to HIV medicine. Scientists recognised that using multiple drugs simultaneously made it much harder for HIV to mutate and escape treatment. This led to the development of Highly Active Antiretroviral Therapy (HAART), introduced in 1996. HAART typically combined three drugs from at least two different classes, dramatically reducing viral load and transforming HIV from a near-certain death sentence into a manageable chronic condition for many people.

The failure of monotherapy therefore directly contributed to one of the greatest medical advances of the twentieth century. Researchers learned that HIV could not be effectively controlled by a single agent because of the virus’s extraordinary genetic variability. Combination therapy attacked HIV at multiple stages of replication, reducing the likelihood of resistance and producing much more durable viral suppression.

Nevertheless, it would be unfair to dismiss monotherapy as a complete failure. In historical context, these treatments emerged during a period of fear and desperation unlike almost any other in modern medicine. Patients were dying rapidly, often abandoned by governments and stigmatised by society. Activists demanded faster drug approvals and expanded access to experimental therapies. In that environment, even temporary benefits mattered deeply.

Monotherapy also gave patients time. For some individuals, AZT and other early drugs extended survival long enough for them to later access combination therapies that became available in the mid-1990s. Many long-term HIV survivors today lived through the monotherapy era and credit those early treatments with helping them survive until better therapies emerged.

The era also reshaped the relationship between patients, activists, researchers, and regulatory agencies. Groups such as ACT UP challenged government inaction and pushed for accelerated research, compassionate drug access, and patient involvement in clinical trial design. Their activism profoundly influenced how modern drug approval systems operate, particularly during public health emergencies.

Today, monotherapy is generally not recommended for HIV treatment because modern evidence overwhelmingly supports combination antiretroviral therapy. Current HIV medications are far safer, more effective, and easier to take than early AZT regimens. Many patients now achieve undetectable viral loads with one pill daily, allowing them to live long and healthy lives.

Still, the history of HIV monotherapy remains critically important. It reflects both the urgency and the limitations of early medical responses to the AIDS crisis. It illustrates how science progresses through trial, error, and hard-earned lessons. Above all, it reminds us of the courage of the patients, doctors, nurses, and activists who confronted HIV in its darkest years, often with little more than hope and an imperfect single drug.

Tim Alderman ©️2026

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.

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.

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)

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.

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.

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!