Tag Archives: HIV/AIDS

Getting On With It! A 37 Year Retrospective of Life with HIV/AIDS (UPDATED)

The challenge of writing about 37 years of living with HIV/AIDS isn’t so much to write tomes about what actually was witnessed over that period. That is easy to do, and I could ramble on forever about it. The challenge lies in being objective and succinct, to tone down the schmaltz and sentimentality and cut to the chase. Not as easy as one may think, as these were the most challenging, relentlessly ruthless and heartbreaking years of my life. But if survival is the gauge of ones strength and tenacity, then I have come out at this end of it with flying colours. Indeed, the cup is half full!

The author at 65

So what was it really like in 1982 to be reading snippets in our local gay press about this mysterious illness in The States that seemed to be targeting gay men who frequented the saunas, and quickly killing them? Well, cynicism and disbelief to start with, and the surety that within a short period of time they would find an antibiotic to clear up yet another STD. Soon the snippets were to become columns, then pages as the mysterious and deadly illness leapt from the shores of America and found its way here.

Our response was mixed. The first recorded case of HIV at home was 1982, and the first death in 1983. We had our usual ratbags who yelled and screamed about God’s vengeance on the evil, sick and perverted gay lifestyle (obviously a different God to the compassionate, all-forgiving one that I had heard about), the advocates of hate who demanded quarantine for all infected persons, and those who either quietly or vocally wished that we would all die or just go away. Not that easy folks!

Thankfully, common sense prevailed and both the government and the grassroots gay community combined to put both AIDS Councils and NGO programs in place. Our quick response was instrumental in Australia always being at the forefront of HIV/AIDS care. Within 2 years every state had an AIDS Council under the national umbrella of NAPWA (National Association of People with AIDS), and the formation of support organisations such as The Bobby Goldsmith Foundation (named after the first person to die from AIDS in Australia), Community Support Network (CSN) and Ankali. Without these organisations life would have been grim for those infected. In 1985 testing was introduced. It was a bit of a strange affair in the early days. Due to hysteria and discrimination no one wanted their personal details on a database, so you chose a name, and Albion Street Centre issued you with a number that then became your ID. You had a blood test, and waited for two weeks – talk about high anxiety – to get your result. I had a mystery illness in 1982, a flu-type illness that wasn’t the flu, and already suspected that I had sero-converted and was going to come up HIV+. I was right. Counseling? Oh yeah, we had a lot of that back then. “You’ve got about 2 years to live”. Shrug shoulders “Okay”. And off we went knowing the inevitable was rapidly approaching, and it was time to PARTY!!! What else could you do?

However there were horror stories. The disgusting treatment of young Eve Van Grafhorst is something for all Australians to be ashamed of. Born in 1982, she was infected with HIV via a blood transfusion. When she attempted to enrol in her Kincumber pre-school in 1985, parents threatened to withdraw their children due to the (supposed) risk of infection. The family was literally hunted out of town, and forced to leave the country and go to NZ. I will never forget the sight of this poor, frail girl on her way to the airport. I, like many others, was horrified that this could happen in Australia. Thankfully, her NZ experience was quite the opposite, and she lived a relatively normal life until her death in 1993 at 11 years of age. Her parents received a letter from Lady Di praising her courage.

Eve van Grafhorst was diagnosed with HIV and hounded out of Australia, but her legacy endures

Meanwhile, the Australian nightmare was well and truly hitting home. My first close friend, Andrew Todd, died in 1986. At that time there was no dedicated AIDS ward, and Andrew was shifted between wards as beds were needed for other cases. He died on Boxing Day in A&E (called St Christopher’s ward, due to people usually just “travelling” through it on their way to a dedicated ward) at St, Vincent’s Hospital In Darlinghurst. It is interesting to note here that the Sisters of Charity, who founded this hospital, put the hospital at the centre of HIV care very early in the epidemic, and also provided palliative dare through the attached a Sacred Heart Hospice. I had the sad duty of ringing all my friends at a party to tell them the sad news. Party pooper recognition acknowledged! Ward 17 at St Vincent’s eventually became the dedicated AIDS ward, and for the next 10 years was never empty. Other hospitals such as Westmead hit the headlines for all the wrong reasons; full contamination clothing for those working with HIV people, rooms not being cleaned, meals left outside doors. Even the poor old mosquito copped a hiding as a means of contamination, along with toothbrushes, glasses, cutlery and crockery. An advertising campaign featuring the Grim Reaper bowling down poor people created an apocalyptic vision of HIV that scared the life out of everyone. It was quickly withdrawn. In the interim, my 2 years became 4, which became 6 followed by 8. My life became a haze of alcohol and cigarettes, not shared alone.

In the 80’s I held a lot of parties with anywhere from 40- 60 friends attending. By 1996, if I had tried to hold a party I would have been lucky to have dug up 10 friends to attend. In the blink of an eye my social circle was effectively wiped off the face of the earth. Hospitals, hospices, funerals and wakes became the dreaded regular events. It was death on a relentless and unforgiving scale. The Quilt Project became the focus of our sorrow, and it’s regular unfoldings and name readings were tear-filled times of remembrance and reminiscence, along with the yearly Candlelight Rally. I attended until I became so empty that I could no longer bear it. I submitted my names but no longer attended. In the early 90’s four friends died close together – two from AIDS, one a heart attack and one cancer. This was a particularly heavy blow as two of these friends had been regular “gutter drag” partners, and that part of my life effectively ended. In a perverse way, it seemed strange that the Big A wasn’t the only thing stalking our lives.

Ready to do a quilt unfolding at the Government Pavilion, Sydney Showgrounds, around 1991. From left Peter McCarthy, Peter Gilmore, Bevan Lambert, Steve Thompson, Tim Alderman.

Despite its reputation for being human Ratsac (the Concorde Study in France named it such, after conducting an unethical trial; turns out they were correct!) I started taking AZT when my CD4 count started to take a dive. Hard work, long hours, heavy drinking, chain smoking, a shit diet and emotional turmoil didn’t help. Pub culture became lifestyle. Did several drug trials – D4T, which was sort of successful, though the same class of drug as AZT. Also p24 VLP (Very Light Protein) which proposed that stimulating the p24 antigen may help control HIV. Total waste of my time. It did nothing. We started alternating drugs – 6 months on AZT, 6 on D4T, 6 on DDI, 6 on DDC. Perversely it seemed to keep the wolf from the door. Dosage was huge. Everyone on it ended up with kidney problems and peripheral neuropathy. Prophylactics added to the drug burden. In the meantime there was no HIV dental service and our teeth rotted or fell out due to bouts of candida. I left work in 1993 after being seriously knocked around by viral pneumonia which should have killed me…but didn’t.

Like many, I went on every drug or alternative trial that came my way. There are those who have described us guinea pigs as brave, or “heroes”, but we certainly didn’t feel like that at the time, despite it being a very selfless act. The thinking at such a desperate time was that…well, if it works for me, the benefit will flow onto everyone else! But there were, in the early days at least, more failures than successes. D4T:FAILURE…caused anaemia; P24-VLP:FAILURE…was hoped it would boost the p24 antigen – it did nothing: Goat Serum:FAILURE…though I did get a very scary skin rash from it; Vitrasert Implants: FAILURE…though due more to HAART eradicating the scourge of CMV retinitis. Were intended to leach Ganciclovir into the eye over a 9 month period, thus eliminating the need to have it injected into the eye regularly. Two minor operations to insert them, with an initial estimate of a 4% chance of developing cataracts. Turned out to be a 100% chance, thus further operations to remove the cataracts. Fun, baby!

I was shuffled onto the pension, and given rent subsidised housing by DOH (Department of Housing). The subsidy seemed like a good idea at the time. After all, weren’t we all eventually going to be killed by the Big H, so no one would be on it for that long? Famous last words! My alcohol consumption and chain smoking increased, if that was possible! Was losing weight at an alarming rate, and naturally no one noticed because I took to wearing baggy clothes to disguise it. Nothing quite like being delusional. Moved from Darlinghurst to Bondi. Nothing like moving away from the scene to help your health…not! Collapsed in the street, and admitted to St Vincent’s not with PCP as suspected but a collapsed lung. Two weeks later and a change of female GP’s saw me back in the doctor’s rooms while she read my hospital discharge report. Had they tested me for CMV retinitis? No! Was I having trouble with my vision? Yes, but I do wear glasses. Guess what? We’re sending you for a little holiday at Prince Henry Hospital (now closed). I was a little bit sick. Chronic CMV retinitis, chronic candida, chronic anemia, had 10 CD4 cells and weighed 48 kgs. Mmm, prognosis was not good. Well, it had been a good life. I was certainly joining a band of party people. But no! Life hadn’t finished with me yet. Protease Inhibitors had come along at an auspicious time, and within a fortnight I had been stolen from the arms of death. Mind you, that fortnight had been no picnic. Ganciclovir injections into the eye, Deca-Durabolin injections to help put weight back on, blood transfusions, and enough finger prick blood readings to last me the rest of my life. And the problems had just started for this return-to-lifer. Not dying when you are supposed to really fucks up your head space.

So started the next round of therapies. Peer Support groups; counselors; Caleo (Greek word which means “To Stick”, a treatment management group who help you maintain the impetus to take the billion pills a day (I was taking over 360 pills a week – anti-retrovirals, prophylactics, and pills to control side effects – at one stage) we were taking); clinics; dental care (now up and running); volunteer work (to keep one sane). What started out as volunteer work at the then PLWHA (NSW) Inc (now Positive Life) turned into paid employment as a research assistant. I started writing for “Talkabout” magazine, joined the Positive Speakers Bureau, and learnt to use a computer. A couple of stints back in full-time employment made me realise that big changes needed to be made with my life. By this time my health was pretty well back together. A couple of nights out pushed home just how few people I knew, however did lead to meeting my current (now ex) partner. A brief encounter with Indinivir sludge in my kidneys (which involved having a stent inserted then removed) also made me aware that for HIV+ people the unexpected can happen at any time. Yet another change of doctor. Self-empowerment had become an important issue, and I wanted a say in my health management, as distinct from being dictated to. Big changes were about to happen.

In 2000 David and I did a big (and expensive) holiday to the Red Centre. It was an amazing experience. Before leaving Sydney I had applied to the University of Technology in Sydney to do my degree in writing. Shortly after arriving back home I was informed that I had been accepted. Ah, the advantages of mature age AND disability. So spent three years doing my Graduate Certificate in Writing, was office- bearer for the Special Needs Collective…in fact I WAS the Special Needs Collective, and discovered I hated having to deal with the moronic “radicals” who called themselves the Student Association and did nothing except rant and rave, and waste student money. I was glad to leave uni. Towards the end of 2004 I decided to get my chef’s credentials from East Sydney TAFE, and crammed a 12-month course into 6 months. As much as I hated uni, I really loved TAFE and found it more grassroots and honest. David and I started Alderman Catering, a top-end catering business though it only lasted about 2 years as I found it very exhausting. I then sort of returned to my retail roots by opening a web site called Alderman Providore to sell Australian made gourmet grocery items. The site proved successful, and within 4 years I was opening my second site, this time specialising in tea, coffee and chocolate products. I got involved in a trial using Goat’s Serum to treat HIV, but again another waste of time. I did manage to get a skin rash from it, and managed to score a $1,000 for participating. In late 2009 the GFC hit, and online shopping took a major hit. After a disastrous Christmas that left me severely out if pocket, I decided to sell the business and put it behind me.

More eye problems followed, this time involving my blind eye. Back to the regular rounds at the Sydney Eye Hospital, and an injection of Avastin (a cancer drug that reduces blood flow) into the blind eye to stop it creating new blood supplies to an eye that couldn’t see. By this time, the interior of the bad eye was collapsing, and it took on an unnatural colour. Before this I hadn’t looked blind. Now I did! Scary how anyone you talk to can pick an anomaly – and stare at it while talking.

The next step, which sort of brings us up to date (this was 2011), was a major move. Plans to move north had been on the agenda for 10 years – in 2011 it finally happened, though we did jump the border which wasn’t in the original plan. No sooner were we there than my retina detached (I had been warned to eventually expect this, due to the amount of CMV scar tissue in the eye) in my one seeing eye…or rather was pushed off by all the scar tissue present from my original CMV infection. An emergency operation to scrape down the scar tissue, and replace the retina and fluid (called a vitrectomy) has seen my sight degenerate even further and I am now the proud owner of a white cane curtesy of Guide Dogs Queensland. It has become obvious that our two Jack Russell’s are not, despite their best of intentions, good seeing-eye dogs. I can see, though very poorly. A lot of life is a blur these days.

However, I am not going to complain. I have always enjoyed a challenge, and this presents yet another one. I gave up smoking 23 years ago, and drink only lightly and socially these days. I adopted a healthy diet and exercise program 10 years ago when I started getting unattractively over-weight and inactive.I have turned my life around by adopting this course of action. In 2013 I attended Southbank Institute of Technology in Brisbane and obtained my Certificate III in Fitness. I hoped this would lead on to becoming a Personal Trainer for mature-age and disabled people both individually and in conjunction with my local gyms. I was almost 60 by the time I finished. Just in time for the next stage of my life.

In 2014 David and I called an end to our 16 year relationship. It had run its course, and with a 14-year age gap…I’m the older…we were both at different stages of our lives. It was amicable, and we are still friends. However, it was the start of a year from hell. A disastrous 60th birthday followed, them an attack of shingles that was the worst Royal Brisbane Hospital’s Infectious Diseases Unit had ever seen, leading to an infection in the blisters that landed me in hospital with blood poisoning, followed by two weeks with a portable drip through their Hospital In The Home initiative (Neuralgia and numbness from this are still a problem 5 years down the line). Then our first rescue dog, Ampy, died. I was also faced with some serious decisions. With the parting of our ways, I could no longer afford to live in the house we were in being on a pension, and of the options open to me, returning to Sydney to move in with an ex from the 80s was the only viable one. I also made a nerve-wracking decision to have my blind eye removed, and replaced with a prosthetic. After years of ongoing problems with it, was time it came to an end, and the operation occurred in early 2015 just prior to my other dog, Benji, and myself returning to Sydney.

I stayed in Sydney only for as long as I needed to be there. I hated it! A cold, over-populated, rude city. Within 12-months, we…I include my housemate, who also came with me…moved to the Central Coast, where life is quiet, and more civilised. Life goes on…I’ve lived long enough now to start seeing the truth finally being told about many aspects of HIV – the high toxicity and ongoing problems caused by AZT, exploitation by Big Pharma, misuse of funding, unresearched and often inaccurate advice on therapies and treatments, the rushing through of many treatments that proved detrimental to those who took them. It’s time to clear the air, and take the sentimentality out of an often rose-coloured glasses view of the epidemic.

37 years eh! OMG where have those years gone? Despite all the discrimination, stress, anxiety, illness, deaths, survivor guilt and despair, there have been moments of great introspection, illumination, strength and enlightenment. That over-used word “empowerment” springs to mind and that is perhaps the one word that sums all those years up. Victim? No way! Survivor? Not in my words! And I have never been one to wallow in self pity. You just need to grab life by the balls, and get on with it. I trust that is what I have done.

Tim Alderman 2019

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Gay History: June 5, 1981. Pneumocystis Pneumonia. Los Angeles.

In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died. All 5 patients had laboratory-confirmed previous or current cytomegalovirus (CMV) infection and candidal mucosal infection. Case reports of these patients follow.

In honor of National Gay Men’s HIV/AIDS Awareness Day, I’m republishing my article on the first report documenting the emergence of the HIV/AIDS pandemic. That article, published in the CDC’s Morbidity and Mortality Weekly Report on June 5, 1981, describes five cases of an unusual form of pneumonia in atypical patients, all young men. The broader social and public health implications of these five cases were not understood at the time of the article’s publication, but would be in just a few unnerving months. In short time, it would become clear that this pneumonia, caused by a tiny fungal organism, was part of a constellation of diseases associated with a novel and highly unusual viral infection that was spreading rapidly through a subset of the American population.

This MMWR article is the first record of an emerging outbreak that, in just one decade, would be the second leading cause of death in young American men 25 to 44 years and have infected over 8 to 11 million people worldwide. As I note in my article, “the June 5th report is a symbol of a time before HIV/AIDS became ubiquitous, before it became a pandemic, before a small globular virus became mankind’s biggest global public health crisis … June 5th marks the beginning of a radical transformation in how disease surveillance and medicine was conducted.” The HIV/AIDs outbreak, since this report’s publication and the growing awareness of the virus, has profoundly changed medicine, public health, virology, and the lives of millions of people.

It often seems that gay men are disproportionately, and perhaps unfairly, bludgeoned with HIV educational and awareness campaigns. After all, this virus is an equal opportunist infector infecting both genders of all sexual orientations. And, yes, men that report having sex with other men represent a truly tiny proportion of the United States population, a slim 2% of the three-hundred million that live in this country.

However, as the CDC reports, gay men account for 63% of all newly diagnosed HIV infections in the United States and make up 52% of the current population of people living with a HIV diagnosis. Stopping the continued transmission of HIV/AIDS in this country critically relies on affecting change and promoting awareness among these men. In 1981, we just became aware of the HIV/AIDS virus. Today, we continue to bring awareness to prevention, testing, and treatment of a virus that continues to percolate through the same vulnerable population that was brutally affected nearly thirty years ago.

June 5, 1981. Pneumocystis Pneumonia. Los Angeles.

“Pneumocystis Pneumonia — Los Angeles,” in the June 5, 1981 edition of the CDC’s Morbidity and Mortality Weekly Report, was an economical seven paragraph clinical report cataloging five observed cases, accompanied by an explanatory editorial note on the rarity of this fungal disease. It seemed to be nothing out of the ordinary from MMWR, a publication that has been issuing the latest epidemiology news and data from around the world for 60 years. The report was included in that week’s slim 16 page report detailing dengue in American travelers visiting the Caribbean, surveillance results from a childhood lead poisoning program and what measles had been up to for the past five months.

Since 1978, Dr. Joel Weisman, a Los Angeles general practitioner, had been treating dozens of gay men in the city presenting with a motley collection of uncommon illnesses – blood cancers, rare fungal infections, persistent fevers and alarmingly low white blood cell counts – typically seen in the elderly and immunocompromised (1). In 1980, he was struck by two profoundly ill men and by the similarity of their symptoms, their prolonged fevers, dramatic weight loss, unexplained rashes and swollen lymph nodes. He referred them to Martin Gottlieb, an immunologist at UCLA who just so happened to be treating a gay patient with identical symptoms.

All three men were infected with Pneumocystis pneumonia, caused by the typically benign fungus Pneumocystis jirovecii, and soon Gottlieb would hear of a two more patients with the fungal infection from colleagues (2). The MMWR editorial note accompanying the report of these cases would mention that Pneumocystis pneumonia, or PCP, is “almost exclusively limited to severely immunosuppressed patients” and that it was “unusual” to find cases in healthy individuals without any preexisting immune system deficiencies. The disease would later be cataloged on immunological graphs illustrating the awful decline of the infected – first the CD4+ T-cell count falls as the viral load ascends, then a marching band of viral, fungal, protozoan and bacterial infections capitalizing on the loss of CD4+ T-cells. PCP is now known as a classic opportunistic infection of those infected with HIV/AIDS.

In the first sentence, the report would note that the young men were “all active homosexuals.” These five were all “previously healthy” men in their late 20s and 30s. They did not know each other, they did not share common contacts and they did not know of any sexual partners suffering with similar symptoms.

Three of the men were found to have “profoundly depressed” numbers of CD4+ T-cells. All five reported using inhalant drugs, or “poppers,” common in that era among gay men, which would later serve as a lead into this new syndromic disease (3). Cytomegalovirus, found in the five men, was also suspected as a culprit behind this strange outbreak. The editorial note stated definitively that “the fact that these patients were all homosexuals suggests an association between some aspect of a homosexual lifestyle or disease acquired through sexual contact and Pneumocystis pneumonia in this population.”

By the time the very first report on this acquired immunodeficiency syndrome, which we now know as AIDS, had been published by Gottlieb and Weisman and three fellow physicians in the MMWR, two of the patients had already died.

New reports showed up after the June 5th report, the list of cancerous malignancies and bizarre diseases killing young gay men blossoming in number, seemingly inexhaustible in scope and variety. The first reported cluster was in Los Angeles but by the summer and fall of 1981, reports would trickle in from San Francisco and New York City, and then Miami, Houston, Boston and Washington, D.C. would represent new epicenters.

The July 4th report on 26 cases of Kaposi’s sarcoma, a rare cancer that only appeared in elderly men of Mediterranean descent, in California and New York City was another pivotal report on this new syndromic disease. The entire December 1981 issue of The Lancet was dedicated to the disease and hypothesized on the origins of this immunological deficiency but, tellingly, none of the articles proposed an emerging infectious disease as the culprit. The disparate constellation of diseases seemed to be linked only by their aberrational appearance in men in what should have been their prime, their gay lifestyle, and abnormally low CD4 cell counts. It had no apparent origin, and physicians were scrambling to find an appropriate treatment to decelerate the rapid progression to death.

By December 1981, it became clear that this disorder wasn’t limited to gay men but also affected intravenous drug users, recipients of transfused blood products and immigrant Haitians. The escalating numbers of cases reported daily and the disastrous mortality rate – 40% of patients were dying within a year of diagnosis – began to sow panic in the public health and medical world that soon spilled into the public (4).

It would take three years before the virus was detected and AIDS was definitively linked to an infection caused by a novel virus, human immunodeficiency virus or HIV. In just a decade, AIDS would be the second leading cause of death in young men 25 to 44 years in the United States and would have infected over 8 to 11 million people worldwide (5). The most recent estimate for the number of people worldwide living with HIV/AIDS is 34 million in 2011, with 68% residing in sub-Saharan Africa (6). That year, there were 2.5 million new HIV infections and 1.7 million AIDS-related deaths.

Though the June 5th, 1981 report was overlooked at first, for many years it would be “one of the most heavily quoted articles in the medical literature” (2). And since its publication, we have seen a cataclysmic shift in how the interrelated worlds of public health and medicine view infectious diseases, especially how to prevent, control and educate the public about them.

June 5th marks the beginning of a radical transformation in how disease surveillance and medicine was conducted. In the seventies, the scientific consensus on infectious diseases was that they were largely eradicated, that they were finished. Vaccines had diminished their presence in modern society, and antibiotics and antivirals would sort out the rest. HIV/AIDS changed that mentality and reality. It seemed to come from nowhere, the blossoming epidemic completely unforeseen and unprecedented in its scope. The June 5th report is a symbol of a time before HIV/AIDS became ubiquitous, before it became a pandemic, before a small globular virus became mankind’s biggest global public health crisis.

Author’s note: This article was originally published in January 2013 at the Pump Handle blog as a part of a series on “public health classics,” exploring some of the classic studies and reports that have shaped the field of public health. Check out the original article here

References
(1) E Woo. (July 23, 2009) Dr. Joel D. Weisman dies at 66; among the first doctors to detect AIDS. Los Angeles Times [Online]. Accessed November 16, 2012 athttp://www.latimes.com/news/nationworld/nation/la-me-joel-weisman23-2009jul23,0,7095313.story

(2) E Fee & TM Brown (2006) Michael S. Gottlieb and the Identification of AIDS. Am J Public Health; 96(6): 982–983.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1470620/

(3) S Israelstam et al. (1978) Poppers, a new recreational drug craze. Can Psychiatr Assoc J;23(7): 493-5

(4) V. Quagliarello (1982) Acquired Immunodeficiency Syndrome: Current Status. Yale J Biol Med; 55(5-6): 443–452

(5) Centers for Disease Control (CDC) (1991) The HIV/AIDS epidemic: the first 10 years. MMWR Morb Mortal Wkly Rep; 40(22): 357. Accessible athttp://www.cdc.gov/mmwr/preview/mmwrhtml/00001997.htm

(6) UNAIDS (2012) UNAIDS World AIDS Day Report. UNAIDS. Accessible athttp://www.unaids.org/en/resources/campaigns/20121120_

Article Reference

Exonerating “Patient Zero”: The Truth About ‘Patient Zero’ And HIV’s Origins

The man blamed for bringing HIV to the United States just had his name cleared.

New research has proved that Gaëtan Dugas, a French-Canadian flight attendant who was dubbed “patient zero,” did not spread HIV, the virus that causes AIDS, to the United States.

A cutting-edge analysis of blood samples from the 1970s offers new insight into how the virus spread to North America via the Caribbean from Africa. More than 1.2 million people in the United States currently live with HIV.

The research, conducted by an international team of scientists, was published this week in the journal Nature.

“No one should be blamed for the spread of a virus that no one even knew about, and how the virus moved from the Caribbean to the US in New York City in the 1970s is an open question,” co-author of the research, Dr. Michael Worobey, a professor and head of the ecology and evolutionary biology department at the University of Arizona, said at a news conference Tuesday.

“It could have been a person of any nationality. It could have even been blood products. A lot of blood products used in the United States in the 1970s actually came from Haiti,” he said. “What we’ve done here is try to get at the origins of the first cases of AIDS that were ever noticed. … When you step back in time, you see a very interesting pattern.”

‘Patient zero’ and the power of a name

In 1981, researchers at the Centers for Disease Control and Prevention first documented a mysterious disease. In their research, they linked the human immunodeficiency virus, or HIV, to sexual activity.

In 1987, the National Review referred to him as the “Columbus of AIDS,” and the New York Post called him “the man who gave us AIDS” on its front page.

“We were quite annoyed by that, because it was just simply wrong, but this doesn’t stop people from saying it, because it’s so appealing. You know, ‘The man who brought us AIDS.’ Well, if it were true, it would be annoying, but since it isn’t true,

Gaëtan Dugas was dubbed “patient zero.”

However, the letter O was misinterpreted as a zero in the scientific literature. Once the media and the public noticed the name, the damage was done.

Dugas and his family were condemned for years. In Randy Shilts’ seminal book on the AIDS crisis, “And The Band Played On,” Dugas is referenced extensively and referred to as a “sociopath” with multiple sexual partners.

In 1987, the National Review referred to him as the “Columbus of AIDS,” and the New York Post called him “the man who gave us AIDS” on its front page.

“We were quite annoyed by that, because it was just simply wrong, but this doesn’t stop people from saying it, because it’s so appealing. You know, ‘The man who brought us AIDS.’ Well, if it were true, it would be annoying, but since it isn’t true, it’s even more annoying,” said Dr. James Curran, dean of Emory University’s Rollins School of Public Health and co-director of the university’s Center for AIDS Research.

Curran, who was not involved in the new research, coordinated the AIDS task force at the CDC in 1981 and then led the HIV/AIDS division until 1995.

“The CDC never said that he was patient zero and that he was the first person,” Curran said of Dugas.

“In addition to the potential damage to his reputation, it was also a damage to scientific plausibility. That there would be a single-point source to start the epidemic in the United States is not very likely. It’s more likely that several people were infected,” Curran said. “I think that the concept of patient zero has always been wrong and flawed, and scientists never said it.”

Dugas died in 1984 of AIDS-related complications. Now, more than 30 years later, scientists have used samples of his blood to clear his name.

Going back in time with blood

For the new research, Worobey and his colleagues gathered archival blood samples in New York and San Francisco that were originally collected for a hepatitis B study in 1978 and 1979. The samples came from men who had sex with men.

The researchers screened the samples and noticed that “the prevalence of HIV positivity in these early samples from hepatitis B patients is really quite high,” Worobey said Tuesday.

From the samples, the researchers recovered eight genome sequences of HIV, representing the oldest genomes of the virus in North America. They also recovered the HIV genome from Dugas’ blood sample.

As many of the samples had degraded over time, Worobey’s lab developed a technique called “RNA jackhammering” to recover the genetic material.

The technique involves breaking down the human genomes found in the blood and then extracting the RNA of HIV to recover genetic data about the virus, an approach that’s similar to what has been used to reconstruct the ancient genome of Neanderthals in separate studies.

“The major contribution which interested me the most was their capacity to restore full sequence genomes from very old serum samples using the jackhammer technique,” Curran said of the new research.

After analyzing the genomes, the researchers found no biological evidence that Dugas was the primary case that brought HIV to the United States, and the genome from Dugas appeared typical of the other strains already in the United States at the time.

The researchers discovered strong evidence that the virus emerged in the United States from a pre-existing Caribbean epidemic in or around 1970.

How HIV arrived in the United States

Sequencing genomes allows scientists to take a peek back in time to determine how a virus emerged and where it traveled by examining how many mutations appear in the genome.

Scientists estimate that HIV was transmitting in humans after a chimpanzee infected a single person sometime in the early 20th century in sub-Saharan Africa. The general consensus among scientists is that HIV then crossed the Atlantic and quickly spread through the Caribbean before it arrived in the United States, probably from Haiti, Curran said.

Scientists at the University of Oxford published a separate study in June suggesting that HIV spread through specific migration routes — based on tourism and trade — throughout the past 50 years as it made its way around the world.

The research team behind the new genetic analysis now hopes that its findings may lead to a better understanding of how HIV moved through populations — and how blaming a single patient for the pathogen’s rise remains troublesome.

“In many ways, the historical evidence has been pointing toward the fallacy of this particular notion of patient zero for decades,” Richard McKay, a historian of medicine at the University of Cambridge and a co-author of the new research, said at Tuesday’s news conference.

“The study shines light from different angles to better understand the complexity of an important period in the past,” he said. “In view of this complexity, one of the dangers of focusing on a single patient zero when discussing the early phases of an epidemic is that we risk obscuring important, structural factors that might contribute to its development: poverty, legal and cultural inequalities, barriers to health care and education. These important determinants risk being overlooked.”

Reference

Gay History: 30 Years Later, a Look at the First AIDS Drug.

The FDA approved AZT in a record 20 months, a move that remains controversial today

All these years on, we are finally telling the truth about this insidiously poisonous drug, and the great marketing job by Big Pharma to sell it to a desperately ill population of people, and doctors who were also desperate, to provide some hope for their patients! The movie “Dallas Buyers Club” tells some of the story, of those who wanted something better than AZT to assist them in staying alive until something beneficial came along – which it eventually did! Things were not quite so bad here as far as pricing went, as with our Medicare system, the drugs were listed on the Pharmaceutical Benefits Scheme as soon as they became available, and cost a mere couple of dollars per script to buy. But the big sell by Big Pharma also happened here, as did the results of several badly run trials. Like many, the biggest mistake I ever made back in those early days of drug treatments was to let my doctor eventually talk me into taking AZT – against my better judgement! And it’s not just me, but many others who will attest that all our immune system and declining health problems started at the same time we decided to take AZT. It’s not as if we were only on a couple of pills a day – we were on massive doses, and as I have already said, this drug was poison…”human Ratsac” was how it was described in a report from the “Concorde” trial…another unethically run trial, but one that didn’t sugar-coat the truth about AZT. Those who took the massive doses of AZT back in the late 80s/early 90s suffered from problems such as anaemia, peripheral neuropathy, and renal problems…and still do to this day!

HIV was first reported in 1981, but it wasn’t until six years later—in March 1987—that a drug to fight the virus was approved by the Food and Drug Administration (FDA). On the 30th anniversary of this milestone, Time magazine takes a look at the story behind the controversial med azidothymidine, commonly known as AZT.

Also known as Retrovir or zidovudine, the compound AZT was not originally created with HIV in mind but was developed in the 1960s to battle cancer. Decades later, scientists at pharmaceutical giant Burroughs Wellcome made a version of AZT to fight HIV.

To fast-track the med, the drugmaker conducted a trial with 300 people who had AIDS. After 16 weeks, it was halted because those taking AZT were doing so much better than those not on the med. The results were considered a breakthrough, and the FDA approved the drug on March 19, 1987, in a record 20 months, according to Time.

The approval was granted despite many questions remaining unanswered—for example, how long did the benefits last?—and despite other issues surrounding the trial itself. In fact, Time notes, the trail remains controversial today.

Then came a bigger controversy: the price tag. At about $8,000 a year ($17,000 in today’s dollars), AZT was unattainable to many.

Today, we have more than 41 drugs to treat HIV, many in combo form and with much fewer side effects.

Reference

Gay History: When Gay Journalists Were Closeted: A History of AIDS Coverage at ‘The Times’

Mark Frankel

November 23, 2015
Days after New York State approved marriage equality in 2011, Samuel G. Freedman, a School of Journalism professor and former reporter for The New York Times, mused to friends about how the world had changed since he had worked at the paper in the 1980s.
Now an enthusiastic proponent of gay marriage, The Times was then a place where gay reporters feared being exiled to obscure beats and watching their careers wither. Freedman’s musings centered on his friend and mentor, Jeff Schmalz, a brilliant Times reporter dying of the disease who in 1992 and 1993 produced groundbreaking articles about people living with AIDS.
“Jeffrey who?” people often asked. Out of those encounters has come Freedman’s eighth book, Dying Words: The AIDS Reporting of Jeff Schmalz and How it Transformed The New York Times.
Produced as an oral history of dozens of Schmalz’s colleagues and friends, the book and an accompanying radio documentary focus on how journalism responded to the AIDS crisis in the 1980s and early ’90s, when many gay and lesbian journalists felt tremendous professional pressure to remain closeted, and discrimination against them was widespread. It also recounts the moment AIDS became a full-fledged health crisis, breaking out of the gay and IV-drug communities into the larger population.
“Jeff’s reporting played a real role in starting to turn opinion, certainly within The Times, but also within the broader public, from fear, suspicion, finger-pointing and blaming gays, to empathy and acceptance,” said Freedman. The 60-minute radio program will be broadcast on some two dozen public radio stations as part of events marking World AIDS Day on December 1. That same day, Freedman will host a panel on Dying Words at 6 p.m. at the Journalism School.
Schmalz was a rising star at the Times in the 1980s, a consummate journalist and skilled newsroom politician and mentor to younger journalists. When Freedman arrived at the paper in 1981, he soon was among those taken under Schmalz’s wing.
Though out of the closet to close friends at the paper, Schmalz kept his orientation hidden from higher-ups such as Abe Rosenthal, its executive editor from 1977 to 1986, and then-publisher Arthur Sulzberger.
“Abe Rosenthal hired me and promoted me, and I owe him a lot, but in doing this research I became very aware of his antipathy toward gay staffers at The Times,” said Freedman. “And it also became apparent that, in a less visible way, Punch Sulzberger also had a blind spot about gays.”
Critics inside and outside the newsroom accused the paper of being late to cover the AIDS crisis.
In December 1990, Schmalz, then deputy national editor, suffered a seizure in the newsroom. The diagnosis was full-blown AIDS, then a death sentence. For Schmalz, the closet was no longer an option. “Jeff commanded tremendous authority at the Times. So for him to come out had a tremendously sensitizing effect on the paper,” recalled Freedman.
When Schmalz returned to the paper in mid-1992, he was sick but determined to report on AIDS. By then, the paper had a new editor and publisher and, Freedman said, was more accepting of its gay and lesbian employees.
Over the next 15 months, Schmalz captured the many faces of AIDS, gay and straight, in some three dozen articles. He profiled Magic Johnson, the Los Angeles Lakers forward who quit basketball when he was diagnosed as HIV-positive, and AIDS activists Mary Fisher and Larry Kramer. “In a weird way, the diagnosis set him free,” recalled his sister, Wendy Schmalz Wilde. “He found a new empathy for other people who were sick and dying.”
Schmalz’s reporting took AIDS “from a medical story, a public health story, a science story, and made it a deeply human story,” said Freedman. “He got on the beat right when this was a disease crossing the lines of race, class and sexual orientation.” His articles also raised the bar on the paper’s AIDS coverage, setting a standard for other news organizations. His last story, which decried growing public complacency, appeared several weeks after his death in November 1993.
Freedman teamed with veteran radio producer Kerry Donahue to produce the radio documentary, which will be distributed by the Public Radio Exchange. Funds came from the Journalism School and a Kickstarter campaign that raised $28,000. A significant backer was current New York Times publisher Arthur Sulzberger Jr., who contributed his own reminiscences to Dying Words.
Schmalz’s death still haunts Freedman. “Jeff was an example of a supremely talented person who died at 39,” he said. “The world is still losing incredibly talented people at young ages. It’s a reminder of the continuing need to do the research that will cure the disease and of the role that journalists need to play.”

In December 1990, Schmalz, then deputy national editor, suffered a seizure in the newsroom. The diagnosis was full-blown AIDS, then a death sentence. For Schmalz, the closet was no longer an option. “Jeff commanded tremendous authority at the Times. So for him to come out had a tremendously sensitizing effect on the paper,” recalled Freedman.

When Schmalz returned to the paper in mid-1992, he was sick but determined to report on AIDS. By then, the paper had a new editor and publisher and, Freedman said, was more accepting of its gay and lesbian employees.

Over the next 15 months, Schmalz captured the many faces of AIDS, gay and straight, in some three dozen articles. He profiled Magic Johnson, the Los Angeles Lakers forward who quit basketball when he was diagnosed as HIV-positive, and AIDS activists Mary Fisher and Larry Kramer. “In a weird way, the diagnosis set him free,” recalled his sister, Wendy Schmalz Wilde. “He found a new empathy for other people who were sick and dying.”

Schmalz’s reporting took AIDS “from a medical story, a public health story, a science story, and made it a deeply human story,” said Freedman. “He got on the beat right when this was a disease crossing the lines of race, class and sexual orientation.” His articles also raised the bar on the paper’s AIDS coverage, setting a standard for other news organizations. His last story, which decried growing public complacency, appeared several weeks after his death in November 1993.

Freedman teamed with veteran radio producer Kerry Donahue to produce the radio documentary, which will be distributed by the Public Radio Exchange. Funds came from the Journalism School and a Kickstarter campaign that raised $28,000. A significant backer was current New York Times publisher Arthur Sulzberger Jr., who contributed his own reminiscences to Dying Words.

Schmalz’s death still haunts Freedman. “Jeff was an example of a supremely talented person who died at 39,” he said. “The world is still losing incredibly talented people at young ages. It’s a reminder of the continuing need to do the research that will cure the disease and of the role that journalists need to play.”

Reference

Gay History: Lex Watson: Leading Gay Rights Activist and Trailblazer.

LEX WATSON, 1943-2014

For many of his generation and beyond, Lex Watson was the face of gay activism in Sydney.

For many of his generation and beyond, Lex Watson was the face of gay activism in Sydney. He was a foundation member of the Campaign Against Moral Persecution (CAMP), the organiser of the first gay rights demonstration in Australia, a longtime passionate advocate of homosexual law reform and of anti-discrimination legislation, a pioneer AIDS activist, and in later years, a keen advocate for the preservation of gay community history.

Lex Watson addressing gay rights activists setting up their ‘Gay Embassy’ opposite former NSW premier Neville Wran’s home in Woollahra to protest against Club 80 arrests in 1983.

CREDIT: ADRIAN SHORT

Alexander Watson was born in Perth on January 29, 1943, the son of Alec Watson, a medical practitioner in Geraldton, and his wife, Margaret (nee Newnham), a nurse. Lex started his education in Geraldton, then the family settled in Perth, where Alec became a well-known surgeon.

Despite his parents’ wish to place him at Geelong Grammar, or the King’s School in Parramatta, Lex was determined to go to Perth Modern. There he developed a lifelong love of languages, particularly German, and music, again particularly German, from Beethoven to the present day. At school he acted in Gilbert & Sullivan productions, directed by a teacher who remarked that he was ‘‘rather self-confident and arrogant’’, an observation often to be made of him throughout his life.

Lex Watson (left) and Robert French signing statutory declarations in 1983.

At puberty, Watson’s parents gave him a booklet on sex that contained a small non-judgmental paragraph on homosexuality. ‘‘So that’s what it is called,’’ he thought. He then looked up homosexuality in the school library, but all the texts he consulted talked of disease and perversion. Watson’s response was, ‘‘Why, they’ve got it wrong!’’ but it was a defining moment in his life.

Watson won a scholarship to the University of Western Australia, where he started in 1960. He did an arts degree and studied history and philosophy He read John Stuart Mill, whose classic liberalism became the touchstone of his life and later activism. He later became a supporter of the Council of Civil Liberties.

For his honours year, Watson transferred to the government department at the University of Sydney. It was there that he worked for the remainder of his academic life, teaching Australian politics to hundreds of students, many of whom became academics and political activists themselves.

The homosexual law reforms in Britain in 1967 sparked Watson’s interest and he became involved with reform in Australia because ‘‘it was needed and therefore you did it’’. He was in Canberra in 1970 on the weekend of the formation of the ACT Homosexual Law Reform Society and joined up. He then attended a public meeting in Sydney, organised by the Humanist Society, which formed a HLR sub-committee, which he became a member of.

Lex Watson as the Empress of Sydney in 1982.

These moves, however, were ‘‘wiped off the table’’ by the announcement by John Ware and Christabel Poll in September 1970 of the formation of the Campaign Against Moral Persecution (CAMP), the first openly homosexual group in Australia. Watson became a foundation member, and in early 1972, along with Sue Wills, became a co-president.

Ware credited Watson with making the organisation political, and it was Watson who organised the first gay demonstration, outside the Liberal Party headquarters in Ash Street, Sydney in October 1971.

Watson, as an academic, had contacts in the Liberal Party and got to hear of the challenge that conservative Jim Cameron was to bring against the federal pre-selection of Tom Hughes, after Hughes as federal attorney-general had raised the issue of homosexual law reform.

One of the major achievements of CAMP under Watson and Wills was highlighting the dangers of aversion therapy and psycho-surgery as then practised against women and homosexuals. That homosexual people then began to cease consulting practitioners for a ‘‘cure’’ for their sexual orientation was a triumph for CAMP.

Watson and Wills resigned from CAMP in October 1974 as the organisation concentrated more on its phone-counselling services.

Watson continued his activism and advocacy through newspaper articles in the gay press. In 1976 he, memorably and courageously, appeared on the ABC’s Monday Conference program in Mt Isa. Some of the audience were hostile, one member even pouring a bottle of sewage over his head. Watson maintained his composure throughout and won over the audience.

With the assistance of fellow academic and activist Craig Johnston in 1980, Watson approached Barrie Unsworth of the NSW Trades & Labor Council after the University of Sydney staff union had passed an anti-discrimination motion in relation to gays and lesbians. Unsworth was receptive and had a similar motion passed in the council. The move was the beginning of Gay Rights Lobby (GRL) and a new push for homosexual law reform in NSW, as well as support for a bill to incorporate homosexuality under the terms of the Anti-Discrimination Act.

Watson, in a dispute over tactics and his administrative style, fell out with GRL but that did not stop him and his fellow activists continuing to work together. After the police raid on Club 80 in 1983, it was Watson who suggested that the activists sign statutory declarations admitting to having committed buggery and to present them to the vice squad, seeking arrest. Watson was one of the first to present but the police had been forewarned and refused to make arrests.

He was a member of a delegation to premier Neville Wran in May 1984 on the morning of the introduction of his Private Members Bill to repeal the ‘‘buggery’’ provisions of the NSW Crimes Act. Watson attempted to persuade the premier to introduce an equal age of consent clause and when Wran refused, he argued for the inclusion of protections for persons between the ages of 16 and 18 years, which Wran enthusiastically agreed to. A new clause had been typed onto the bill when it reached the floor of the Legislative Assembly that day.

In 1982, the Chameleons social group had crowned Watson ‘‘Empress of Sydney’’, the first time for someone from outside the ‘‘drag’’ industry. He was proud of his only appearance in ‘‘drag’’, sporting a black velvet strapless gown. He wore the gown to the ‘‘Gay Embassy’’, a caravan that had been set up in front of the premier’s house in late 1983 as another move to push the law reform agenda. The embassy had been Watson’s idea.

Watson became aware of the problem of HIV/AIDS in 1982. He later became involved in the disputes with the Blood Bank, pointing out that the only solution to the implementation of sound public health policy relating to HIV was for the medical profession to engage in a dialogue with the gay community. He, and others, set up the AIDS Action Committee which, following federal government funding, morphed into the AIDS Council of NSW, of which Watson became the first president.

Watson later stepped down as president although he stayed on the committee. Truth to tell, he was not the greatest of administrators. He operated best as an individual activist, always sharp and on-message.

For many years Watson was also a block captain of marshals at Mardi Gras parades. In 2010, ACON awarded Watson and Wills their GLBTI Community Hero Award marking the 40th anniversary of the formal foundation of CAMP, and they were thrilled to ride up front in the 2011 Sydney parade.

After retirement from the University of Sydney, Watson became involved in the Pride History Group, Sydney’s gay and lesbian history group. He was president at the time that he died, assisting in the organisation of a history conference, set for November, on homosexual law reforms, his major life’s work. The conference will be dedicated to his memory.

Lex Watson is survived by his sister Wendy, brother-in-law Richard and nephews Nicholas and Ben and their families.

Reference

Gay History: The Photo That Changed The Face Of HIV/AIDS!

By Savannah Cox

Published August 1, 2015

Updated July 18, 2017

Source: Time

Nearly 25 years ago, David Kirby lay on the cusp of death. Kirby, 32, had nearly reached the end of his fatal fight against HIV/AIDS when journalism student Therese Frare took the photo seen above.

In the photo, Kirby’s gaze appears vacant; he is a man resigned to a fate that his family–also broken by HIV/AIDS–just cannot bring itself to see. For many, the raw anguish radiating from this photo exemplified the tragedy of the HIV/AIDS epidemic, which at this point in time had struck millions around the world.

The photo, which was later published in Life and then used by clothing company United Colors of Benetton in an advertising campaign, is said to have changed the face of AIDS.

When published, public understanding of HIV/AIDS was minimal. Many thought the disease confined its victims to those who identified as homosexual; few considered the damage it inevitably inflicted on an AIDS victim’s family. This photo helped change that.

Frare recently sat down with Time to discuss the photo, and her memories of living through–and documenting–a span of years that devastated countless families. We provide an excerpt below:

“I started grad school at Ohio University in Athens in January 1990. Right away, I began volunteering at the Pater Noster House, an AIDS hospice in Columbus. In March I started taking photos there and got to know the staff — and one volunteer, in particular, named Peta — who were caring for David and the other patients.

On the day David died, I was visiting Peta. Some of the staff came in to get Peta so he could be with David, and he took me with him. I stayed outside David’s room, minding my own business, when David’s mom came out and told me that the family wanted me to photograph people saying their final goodbyes.

I went in and stood quietly in the corner, barely moving, watching and photographing the scene. Afterwards I knew, I absolutely knew, that something truly incredible had unfolded in that room, right in front of me.

Early on, I asked David if he minded me taking pictures, and he said, ‘That’s fine, as long as it’s not for personal profit.’ To this day I don’t take any money for the picture.

But David was an activist, and he wanted to get the word out there David Kirby was born and raised in a small town in Ohio. A gay activist in the 1980s, he learned in the late Eighties — while he was living in California and estranged from his family — that he had contracted HIV. He got in touch with his parents and asked if he could come home; he wanted, he said, to die with his family around him. The Kirbys welcomed their son back.about how devastating AIDS was to families and communities. Honestly, I think he was a lot more in tune with how important these photos might become.”

David Kirby was born and raised in a small town in Ohio. A gay activist in the 1980s, he learned in the late Eighties — while he was living in California and estranged from his family — that he had contracted HIV. He got in touch with his parents and asked if he could come home; he wanted, he said, to die with his family around him. The Kirbys welcomed their son back.

Peta, for his part, was an extraordinary (and sometimes extraordinarily difficult) character. Born Patrick Church, Peta was “half-Native American and half-White,” Frare says, “a caregiver and a client at Pater Noster, a person who rode the line between genders and one of the most amazing people I’ve ever met.”

“On the day David died, I was visiting Peta,” Frare, who today lives and works in Seattle, told LIFE. “Some of the staff came in to get Peta so he could be with David, and he took me with him. I stayed outside David’s room, minding my own business, when David’s mom came out and told me that the family wanted me to photograph people saying their final goodbyes. I went in and stood quietly in the corner, barely moving, watching and photographing the scene. Afterwards I knew, I absolutely knew, that something truly incredible had unfolded in that room, right in front of me.”

“Early on,” Frare says of her time at Pater Noster House, “I asked David if he minded me taking pictures, and he said, ‘That’s fine, as long as it’s not for personal profit.’ To this day I don’t take any money for the picture. But David was an activist, and he wanted to get the word out there about how devastating AIDS was to families and communities. Honestly, I think he was a lot more in tune with how important these photos might become.”

Frare pauses, and laughs. “At the time, I was like, Besides, who’s going to see these pictures, anyway?”

Over the past 20 years, by some estimates, as many as one billion people have seen the now-iconic Frare photograph that appeared in LIFE, as it was reproduced in hundreds of newspaper, magazine and TV stories — all over the world — focusing on the photo itself and (increasingly) on the controversies that surrounded it.

Frare’s photograph of David’s family comforting him in the hour of his death earned accolades, including a World Press Photo Award, when published in LIFE, but it became positively notorious two years later when Benetton used a colorized version of the photo in a provocative ad campaign. Individuals and groups ranging from Roman Catholics (who felt the picture mocked classical imagery of Mary cradling Christ after his crucifixion) to AIDS activists (furious at what they saw as corporate exploitation of death in order to sell T-shirts) voiced outrage. England’s high-profile AIDS charity, the Terrence Higgins Trust, called for a ban of the ad, labeling it offensive and unethical, while powerhouse fashion magazines like Elle, Vogue and Marie Claire refused to run it. Calling for a boycott of Benetton, London’s Sunday Times argued that “the only way to stop this madness is to vote with our cash.”

“We never had any reservations about allowing Benetton to use Therese’s photograph in that ad,” David Kirby’s mother, Kay, told LIFE.com. “What I objected to was everybody who put their two cents in about how outrageous they thought it was, when nobody knew anything about us, or about David. My son more or less starved to death at the end,” she said, bluntly, describing one of the grisly side effects of the disease. “We just felt it was time that people saw the truth about AIDS, and if Benetton could help in that effort, fine. That ad was the last chance for people to see David — a marker, to show that he was once here, among us.”

David Kirby passed away in April 1990, at the age of 32, not long after Frare began shooting at the hospice. But in an odd and ultimately revelatory twist, it turned out that she spent much more time with Peta, who himself was HIV-positive while caring for David, than she did with David himself. She gained renown for her devastating, compassionate picture of one young man dying of AIDS, but the photographs she made after David Kirby’s death revealed an even more complex and compelling tale.

Frare photographed Peta over the course of two years, until he, too, died of AIDS in the fall of 1992.

“Peta was an incredible person,” Frare says. Twenty years on, the affection in her voice is palpable. “He was dealing with all sorts of dualities in his life — he was half-Native American and half-White, a caregiver and a client at Pater Noster, a person who rode the line between genders, all of that — but he was also very, very strong.”

As Peta’s health deteriorated in early 1992 — as his HIV-positive status transitioned to AIDS — the Kirbys began to care for him, in much the same way that Peta had cared for their son in the final months of his life. Peta had comforted David; spoken to him; held him; tried to relieve his pain and loneliness through simple human contact — and the Kirbys resolved to do the same for Peta, to be there for him as his strength and his vitality faded.

Kay Kirby told LIFE.com that she “made up my mind when David was dying and Peta was helping to care for him, that when Peta’s time came — and we all knew it would come — that we would care for him. There was never any question. We were going to take care of Peta. That was that.

“For a while there,” Kay remembers, “I took care of Peta as often as I could. It was hard, because we couldn’t afford to be there all the time. But Bill would come in on weekends and we did the best we could in the short time we had.”

Kay describes Peta, as his condition worsened in late 1991 and 1992, as a “very difficult patient. He was very clear and vocal about what he wanted, and when he wanted it. But during all the time we cared for him, I can only recall once when he yelled at me. I yelled right back at him — he knew I was not going to let him get away with that sort of behavior — and we went on from there.”

Bill and Kay Kirby were, in effect, the house parents for the home where Peta spent his last months.

“My husband and I were hurt by the way David was treated in the small country hospital near our home where he spent time after coming back to Ohio,” Kay Kirby said. “Even the person who handed out menus refused to let David hold one [for fear of infection]. She would read out the meals to him from the doorway. We told ourselves that we would help other people with AIDS avoid all that, and we tried to make sure that Peta never went through it.”

“I had worked for newspapers for about 12 years already when I went to grad school,” Therese Frare says, “and was very interested in covering AIDS by the time I got to Columbus. Of course, it was difficult to find a community of people with HIV and AIDS willing to be photographed back then, but when I was given the okay to take pictures at Pater Noster I knew I was doing something that was important — important to me, at least. I never believed that it would lead to being published in LIFE, or winning awards, or being involved in anything controversial — certainly nothing as epic as the Benetton controversy. In the end, the picture of David became the one image that was seen around the world, but there was so much more that I had tried to document with Peta, and the Kirbys and the other people at Pater Noster. And all of that sort of got lost, and forgotten.”

Lost and forgotten — or, at the very least, utterly overshadowed — until LIFE.com contacted Frare, and asked her where the photo of David Kirby came from.

“You know, at the time the Benetton ad was running, and the controversy over their use of my picture of David was really raging, I was falling apart,” Frare says. “I was falling to pieces. But Bill Kirby told me something I never forgot. He said, ‘Listen, Therese. Benetton didn’t use us, or exploit us. We used them. Because of them, your photo was seen all over the world, and that’s exactly what David wanted.’ And I just held on to that.”

After the Benetton controversy finally subsided, Therese Frare went on to other work, other photography, freelancing from Seattle for the New York Times, major magazines and other outlets. While the world has become more familiar with HIV and AIDS in the intervening years, Frare’s photograph went a long way toward dispelling some of the fear and, at times, willful ignorance that had accompanied any mention of the disease. Barb Cordle, volunteer director at Pater Noster when David Kirby was there, once said that Frare’s famous photo “has done more to soften people’s hearts on AIDS than any other I have ever seen. You can’t look at that picture and hate a person with AIDS. You just can’t.”

References

Sacrilege: Living HIV Outside The Square!

“Sacrilege” may seem like a strange word to use in relationship to ones life. Its religious connotation is “the violation or profanation of anything sacred or held sacred” thus by a very loose expansion of the meaning – a human life, as it is, in many respects, regarded as sacred. Stretching definitions even further – and many would not be surprised that I don’t take it literally – infecting it with HIV could be considered a sacrilege, be it intentional or unintentional. The sacred has been violated! Also, as a HIV+ man, it is expected that I will follow a set of “rules” as dictated by various community groups, doctors and specialists! To totally ignore the expected, and go off down your own path would be considered by many to be sacrilege!

I can’t contemplate continuing to live with HIV without viewing it within the framework of my life! No war is without its battles, without its dark times, yet still seeing the light at the end of the tunnel! If I had to use a word to describe myself, belligerant comes straight to mind – but then I think to myself “That’s a bit harsh!”. Okay…cantankerous is one that has been used by those close to me, so that’s sort of acceptable, and it’s true! Curmudgeonly… a word I love, but I’m not really surly enough! So I’ll just stick with stubborn! I could claim that it’s a Capricornian trait, but it goes deeper than that.

At 12-years-of-age, my stubborn streak was already settling in. Though unrecognised by me at the time, it was a survival mechanism that was to serve me well for most of my life. It is only when I look back to 1965, that I realise what a testing ground it was: my mother left my father; a bitch of a housekeeper who was to forever change our family dynamics; and my father jumping over The Gap with Kevin, my brother – resulting in my brothers death – would have sent a less resilient person into dark depths that they may never have risen from! Considering the lack of psychological & emotional support available at that time, to have come out of that year relatively unscathed had to show a stoicism way beyond that normally expected from one so young. By digging my heels in, ignoring all the negativity around me, and just “getting on with it” – a philosophy I still embrace – I was to set in place a mental tenacity that was to impact my life for decades to come!

There was no love lost between my father & myself! Even prior to Kevin’s death, I had seen – and felt –  a violent streak in his nature; almost a need to punish those who had a life contrary to his. He could be a right royal cunt! The only way I could establish my own independence – which had flowered rapidly after Kev’s death – was open defiance! He told me not to smoke…so I smoked; not to drink…so I drank; to get a trade…I went in every direction but; and to get my hair cut…I left it to grow – despite a threat, after an argument about it, to “knock my block off”! He even denied me a 21st birthday celebration, because he had been at war when his fell due…I organised it myself. My grandmother left me a small inheritance, and just after my 21st, I moved out of home, into my own apartment. After he remarried and moved to Vincentia (on the south coast of NSW), we had little contact. After his suicide via carbon monoxide poisoning in his car in 1978, I never cried a single tear – but just let out a massive sigh of relief! I was free! As the ultimate act of a true prick, he left me nothing in his will – it all went to my step-family! Just to show that they were all tarred with the same brush, directly after his death his sisters indulged themselves in a game of telephone harrassment against my step-mother. I was glad to walk away from them all!

As soon as the old man died, I came out! It is the one time my usual defiance was kept capped. I had seen what he wss capable of with my brother, and my survival instinct whispered to me to be  quiet about this issue. Again, I had witnessed him & his mates yelling “poofter” out of the car window to some poor guy who did nothing more than wear a pink shirt! As I said – they were pricks! Stubbornness does not necessarily equal a death wish! Then, having stepped out of the closet, I megaphoned my life choice to all and sundry, including my employees. No one seemed particularly surprised! There were some in my workplace who were not impressed with my sexual preferences, and made no secret of it! My pure indifference to them was reward enough. My decision to desert the security of a regular job had nothing to do with my detractors…it was based purely on a desire to break free of a life I wanted to leave behind. But the curve balls were to keep coming, with no inkling at that time of the odd parallel path that both being gay, and being HIV+ were going to lead me down!


Even as I was coming out in Melbourne in 1980, snippets about a lethal cancer, that was killing gay men who frequented the saunas in the USA, were appearing in the local press here. I read them, and like many others, though not panicking, was left with a feeling of unease. That unease turned to immense consternation over the next couple of years, as the reports became more alarmist, and HIV crossed the ocean to our shores. By the time they developed a test in 1985, I for one was already stacking the odds – and not in my favour! In retrospect, this may have been a defence mechanism against coming up HIV+…that if I did, I was already prepared for it, and if I didn’t I could just breath a sigh of relief. The former proved to be true!

Back in the day, there was a severe lack of counselling, and given the sheer volume of testing results coming in at that time, was cursory at its best. When I went to get my result – and I don’t know why I made the presumption I did – the positive result was not a shock. These were strange (ethereal?) times, and for those of us admitting to our – then – death sentence, it was almost like belonging to a select club.

There was a two year window given at that time, between diagnosis and the advent of AIDS, leading, so they thought, to an inevitable death. Some didn’t make it to the window period, and my first friend, Andrew Todd, died at the end of 1986. I made it to the two year point…and was still very healthy. By then, the window for those diagnosed in 1985 had been expanded to five years, so the waiting game for many of us continued.  Up to 1990 is a very convoluted journey, and I don’t want to rehash history that has already been covered in many writings, and is really outside the parameters of this article. I decided to make this a useful period, and did a number of trials. It was better than just sitting around and waiting. This was a time when I made my one bad decision regarding my healthcare – I allowed my doctor to – after a najor ethical battle with her – to put me onto AZT! There has been much written about AZT, and its history as a drug…which was not exclusively formulated for use with HIV. I am not a conspiracy theorist, but my thinking on HIV has always been a bit radical, and I, along with others, gravitate to the thinking that HIV and AIDS – despite our use of them as co-joined conditions – are separate illnesses, and HIV doesn’t necessarily lead to AIDS, but AIDS as an independent condition, brought about by the deterioration of the immune system. 

So, I had a diagnosis of HIV, with no related conditions that would have rated a diagnosis of AIDS. Even with a CD4 count on the decline, I still had good health – which admittedly may have been a lot better if I wasn’t knocking myself around by chain-smoking, and chronic abuse of alcohol – until…I started AZT! Many of those still around from that time will acknowledge that the decline in their health status is directly parallel to starting AZT. It wasn’t nicknamed “human Rat-Sac”for nothing. It’s negative affects from then up until now are also well documented. Damaged nerves, liver & kidney problems, the leaching of calcium from bones, and other neurological problems can all be traced back to AZT usage. I wish I had stuck by my guns, and refused to use it! There is no evidence that it saved one single life. I wouldn’t have refused trestment with other drugs that came along shortly after – I didn’t have a suicide wish – but I have no doubt that if I had refused AZT, some ongoing problems I have now would not have happened. I have an undisguised hate of Big Pharma, and its tactics, and lack of ethics where it comes to flogging a drug, and how they went about flogging this incredibly toxic drug to a desperate and unsuspecting demographic is truly horrifying – more on this shortly.

So, dispite heavy smoking, alcohol abuse, long work hours, and a shit diet…I made it to 1990, and with my health still okay. I won’t say I was unscathed, as the relentless list of those who died over this time, with many more to come, was physically, mentally, and emotionally destructive. I am by nature – and experience – a stoic in the face of death. I accept the reality, and inevitability of it – but any sign of the existance of God in this obliteration was missing – no just, loving God would ever allow this! My conversion to Atheism was complete. However, the combination of all that was happening was starting to wear me down, and encountering on-the-job bullying by an Area Manager brought about my decision to leave the workforce in 1993, and go onto disability, and get a housing subsidy. It was a forgone conclusion back then that this was the road to take because – after all – none of us would survive for all that long. At this stage, under the most positive of thinking, I gave myself two more years. 

I actually got to mid-1996 before it all started to come undone. I have written about the circumstances surrounding all the events that happened at this stage, so won’t repeat them here, but will give you an intimate insight into my thinking on my situation when I was finally admitted to Prince Henry Hospital in June, 1996. Given that I was already close to death when admitted, with a plethora of conditions that really should have killed me earlier, and that I really thought I would never leave there any other way than via a wooden box gives a good indication of how serious things were. It was in Mark’s Pavilion there that my stoicism, my acceptance of reality, possibly should have been tested, but instead gave me a calmness, an acceptance of my own potential death that I had pondered about prior to this. I was chronically ill, I was tired and in some respects, if other factors hadn’t intervened, death just seemed like such a pleasant, restful reality, leaving all that was happening behind, joining all those that I had loved and lost over the last 10 years. It was an acceptance of death that I wasn’t expecting to be quite so complete, so easy, so without fear. 

But I picked my moment, didn’t I! Big changes were happening in the treatment of AIDS, and shortly after being admitted, not going down the road of death, that I expected to go down, I walked – well, taxied – out of Prince Henry. I exited that taxi into a world that was in no way prepared for the living dead of HIV. If I ever thought my battles were behind me, I could not have been more wrong. The next couple of years – a long period of recuperation – were intense. There was a seemingly neverending period of specialists, doctors, clinics, pharmacy, counselling, peer support groups, drug compliance groups, massive – and I mean massive – amounts of medication, side effects, dental work, anxiety and panic attacks, and drug trials. It was a time where one wanted to initiate great change in the direction of ones life  – with no one there to assist. Change had to be fought for, had to be forced. All these community groups gathering money and prestige, sitting in meetings and forums, listening to the likes of me yelling about what we needed…and just turning deaf ears! It was a frusteating period where everything was years behind where it needed to be, and if you wanted to get on with your life without being trapped in the system, you had to do it under your own steam! So I did!

Some volunterr work, some work in the community sector, a flowering writing career that demanded and exposed…when I eas “allowed” as one didn’t question the system – led to a brief period of full-time work – that didn’t help my health at all – then onto university & TAFE to experience at last that which gad been denied me in my youth. This led to an interesting period of experiences, from spending 12 years talking about the HIV experience through the Posituve Speakers Bureau, to 15 years writing for “Taljabout” magazine and various other publications, starting several businesses – the most recent of which was destroyed by the GFC, to where I am now – happy, balanced, and reasonably fulfilled.

However, the last few years haven’t been without its challenges, and my mental tenacity, combined with a fairly laud-back approach to life, have seen me get through things without any apparent negativity. I do health care on my own terms these days, because if one just relies on mrdico’s, one would rattle like a pill bottle. I want less pills, not more! About 15 years ago, I halved my HIV medications. I have been waiting for some red-faced, fuming doctor to lecture me about it (has no one realised how rarely I get scripts?) but no one ever has. In the interim, my blood readings get better and better, with CD4s on the rise, and an ongoing undetectable viral load. Okay, I no longer smoke – gave that up in ‘96, drink bugger all, have turned vegetarian, and exercise daily, but nothing else. Big Pharma be fucked! Your drug resistance tests – a farce! You just don’t want people on old drugs! Over-prescribing? You bet you do…big time! I wouldn’t trust you as far as ai could kick you! 

Have I mentioned my shit vision? Whoops…overlooked that. Blind in one eye thanks to CMV (also covered in articles on my blog), and almost blind in the other. The most major decision over the last couple of years? Having my blind eye removed voluntarily, and replaced with a prosthetic. Does it stop me getting around? Not fucking likely! I might be slow, but I get there! I have a white cane (laughingly called my whacking stick), but rarely use it. I walk the dogs, do the shopping, get to gym! It might be done with a slight feeling of nervousness, but it gets done.

I don’t hold any grudges. What has been, has been! In a way, I thank my father for the rough younger years. It gave me a set of survival tools that have served ne well – and still do – throughout my life. Maybe I was born in an auspicious astrological period, or maybe my natural survival instincts are genetic, endowing me with stoicism and mental tenacity! Whatever it is, it has seen me through nicely! Life is to be enjoyed, and despite the occasional downs, it should be lived to its fullest. Just step outside that square, and do it on your own terms!

Tim Alderman (©2017)

Australian Gay History: Paul Dexter & The Gay Army


1983. Gay Politics: Sydney’s Mysterious (and Dangerous) ‘Gay Army’Posted on July 21, 2014 by Colin Clews

Anyone who was around in the early 80s will remember the media’s hysterical response to AIDS and the ease with which it attributed it to gay men. It wasn’t labelled ‘the gay plague’ or ‘gay bug’ out of sympathy for us.
So it was unsurprising that, in these hostile times, gay community organisations were doing everything they could to put across a true picture of the emerging crisis. As attacks on gay men increased dramatically in light of perceptions that we had ’caused’ AIDS, an intelligent and cautious approach was the order of the day.
Or, alternatively, you could get yourself into the headlines and onto TV by claiming to be the leader of a non-existent gay organisation and making outrageous claims. Step forward Paul Dexter, self-proclaimed head of ‘the Gay Army’ in Sydney, an organisation that he claimed “represents the gay community more than others”.
Gay Army Gay ConspiracyIn May 1983 he appeared as ‘the gay community spokesperson’ on a Channel 9 report on AIDS. His credentials were never provided nor was it explained why his views were more important that an organisation like, say, the Gay Counselling Service. Indeed, no one even bothered to ask for evidence that an organisation with the ridiculous name of ‘The Gay Army’ even existed. Nonetheless, he was up there with leading AIDS doctors and commentators like Larry Kramer.
In June 1983 the Sydney Morning Herald – a newspaper that really should have known a lot better – quoted his claim that “left-wing elements” were responsible for the outcry against AIDS publicity. They didn’t even bother to explain just what that ridiculous statement actually meant.
And yet, in spite of the obvious absurdity of this man, his fictitious organisation and his groundless claims, the Herald turned to him again the following year. Under the headline Gay group slates AIDS statement, Dexter – now “official spokesman for the Gay Army” – declared that AIDS was far more infectious than health experts claimed. “The advertisement suggests that AIDS cannot be spread by sneezing, coughing, breathing or mosquitoes but according to Mr Dexter, medical experts can give no scientific assurance of this.”
Whilst Dexter was quick to challenge medical experts on their authority, he made no attempt to justify his own. And, yet again, no one asked him for any, nor evidence that his Gay Army actually existed.
But, yet again, this was to be a case of not letting the facts get in the way of a good story. Dexter, it seemed, was happy to say anything to stay in the spotlight and the media were more than happy to report it. Take, for example, another headline Call for homosexual to spot gay clients, in which the “spokesman for the Gay Army” argued that “A homosexual should be behind the counter of the Red Cross Bank to spot any gay blood donors…”
The entire article was farcical as Dexter claimed that he had seen a gay man give blood while he himself was in the Blood Bank (“Of course, I didn’t give blood…”). Dexter knew he was homosexual because “He had effeminate gestures, was wearing a bracelet and his key ring was in his right hand pocket – which is a sign of being gay.”
His statements would be hysterically funny is they didn’t have such serious consequences. After stating, “Of course, you wouldn’t be able to pick out every gay but a homosexual would have a far better chance”, he went on to reinforce the conspiracy theory that HIV+ gay men were deliberately infecting the blood supplies: “A homosexual behind the counter would also deter any resentful homosexuals from giving blood.”
It’s hard to say who is the most irresponsible here; Dexter for his blind self-promotion or the media for carrying stories about ‘conspiracies’ and health experts concealing the true facts when they didn’t even bother to do the most basic check on Dexter’s own credentials. When it comes down to it, they both share a huge amount of shame and blame.

In 1985, Channel 10 did a report titled “The Truth About AIDS in Australia” (https://youtu.be/UKiiY5JUUvU). The witch-hunt was now in full swing. Popular 2GB talj-back host Mike Carlton, joined others in suggesting that gays were deliberately donating contaminated blood out of spite! The 10 report investigated, and lent support to, accusations that gay men were deligerately spreading AIDS! The charge was made in an anonymous letter sent to a New South Wales parliamentary committee inquiring into prostitution. The author suggested that heterosexuals who had been infected vua blood transfusions were innocent victims of an “evil conspiracy” in which homosexual activists deliberately infected blood supplies, so that their calls for government funding to fund AIDS would be acred on. Furtgermore, gays were knowingly infecting other men in their community to “get even” with old boyfriends because “the gay community is notoriously bitchy” .

The letters author, a “King’s Cross Homosexual” was also angry that a “fringe group of radical homosexuals” – the NSW AIDS Action Committee led by Sydney academic Lex Watson – was claiming to speak on gehalf of the entire gay community. “They are establishing paper empires to get government funds and couldn’t care a stuff about their gay brothers and sisters” he wrote. While the Network 10 program acknowledged that it was impossible to prove these claims, it remarkably stated that it could ” prove that the AIDS blood plan was seriiysly considered” because homosexuals in America gad contemplated such an act of political terrorism, and the “intimate links across the Pacific ensured the American plan became pillow talk down under”. The report did not reveal how most American gay men regarded this terrorist actio, nor explain why Australian homosexuals would contemplate the plan when the Commonwealth and the State governments were already responding to AIDS with more urgency than politicians in the Unired States had shown during the first three years of the AIDS epidemic.

The claims made in the letter were extraordinarily similar submissions nade to the mainstream and gay press by Paul Dexter, self-proclaimed leader of the Gay Army, which, as far as other gay men were concerned, consisted only of himself! Those who knew of his antagonism towards the AIDS Action Committee, and those who had begun to view the program cynically, would not have been surprised to see Dexter soon introduced as a “spokeman for the gay community” to confirm that a fringe group of radical gays were indeed spreading AIDS. As an “unbiased” member of the gay community, he supposedly served the purpose of demonstrating that homophobia was not the basis for the program’s investigation into the “evil conspiracy”. To many Darlinghurst gay men in the audience, hiwever, his presence only confirmed their doubts about the authenticity of the letter. 

It is interesting yo note that when a nan considered by Jenny Ross to be an inappropriate representative of the hemophilia community was interviewed by another television station, his comments were omitted from the program that went to air at the request of the Harmpholia Foundation. Despite the complaints of the AIDS Action Committee that Paul Dexter did not represent the general views of homosexual community, and that he was predisposed to making spiteful comments about some of its members, it was extended no such curtesy. Rather, Network Ten neglected to examine Dexter’s personal & political motives for accusing radical homosexuals of donating blood infused with HIV , just as the press had failed to challenge the factual basis of the doctor’s claims. Presumable, the print and electronic media would have been more thorough in their search and selection of their witnesses if they were to accuse National Party politicians or religious leaders into spiteful murder. Moreover, one can be certain that a public outcry would immediately follow if such accusations were made.

Paul Dexter was a small blip in the early days of HIV in Australia, but by setting himself as a self-appointed spokesman on the epidemic, and managing to gain as much exposure as he did, he created a lot of controversy, misinformation, and bias which in turn created its own problems. It is now difficult to even find any information on him…though like all bad history, he should not be forgotten! 

Tim Alderman (2017)

References

Learning to Trusr: Australian Responses to AIDS – Google Books https://books.google.com.au/books?id=1trSx2c_pEYC&pg=PA62&lpg=PA62&dq=paul+dexter+%26+the+gay+army&source=bl&ots=kyGf7ZjoJ9&sig=HaTIJYsl4eDZAyjNRCxgzB-QB7I&hl=en&sa=X&ved=0ahUKEwjTs7TsnrLVAhUPNpQKHUuaAhIQ6AEIIDAB#v=onepage&q=paul%20dexter%20%26%20the%20gay%20army&f=false