Earlier this week, a bakamoono.lk team member pointed out that Pulse Magazine used AIDS interchangeably with HIV when presenting a reasonably well researched article on the role of Pre-Exposure Prophylaxis [PrEP] as an HIV prevention tool in Sri Lanka. Her factual contention was that one does not contract AIDS, which is a syndrome that manifests itself when HIV, the virus that causes AIDS, depletes the body’s immune system. AIDS is a term used for the fourth and final stage of HIV. AIDS = multiple diseases that may manifest concurrently; tuberculosis, pneumonia, oral candidiasis, severe diarrhea, severe vomiting… none of it jolly.
Using HIV and AIDS interchangeably allows for the 80’s equation <HIV=AIDS=DEATH> to endure. Based on the evidence, they were not wrong back then, but this equation stopped being valid over three decades ago when treatment regimens started rolling out. To use a language of AIDS now is to further the stigma of fear that prevents people coming forward to get tested, and in certain instances, pick up the results.
I wrote a column for Pulse Magazine on HIV that was published in their September/October Issue in 2021, and I went back and read it to see if I had adequately addressed this distinction between HIV and AIDS.
Upon reflection, I could have done better. So, in the column below, I had indicated the lines that clarify without any doubt that HIV is the virus that you contract, and if left untreated, then AIDS may manifest, and yet, with treatment, you can even come back from AIDS. The 80’s equation no longer holds true… except for those who die in Sri Lanka. The annual report of the National STD/AIDS Control Programme shares disappointing data.
Why are people dying of a chronic manageable medical condition, now akin to Diabetes? What is preventing us from communicating basic facts so a to encourage people to come forward to get tested? Why can we not train our teachers, who struggle to deliver the existing Health & Physical Education (HPE) syllabus on HIV? This syllabus now includes information on the positive impact of treatment on the lives of those who live with HIV. Still no informations on condoms, of course. The irrational fear that the word condom printed in a textbook will lead to rampant sexual experimentation remains.
Would we prefer media institutions to educate our children on sex and relationships or should our schools have teachers with the requisite skills to impart relationship education? Why don’t we encourage our HPE teachers to respond to student queries, and create environments of learning, like we do for any other subject? Based on our experience with survivors of sexual violence in Sri Lanka, information related to sex and relationhip is right up there with keeping your heart and lungs healthy. It’s right up there with ensuring that we live sustainably. It surpasses learning religion as a subject you will be examined on for the O Levels. [It is disappointing that O Level HPE remains an optional subject.] The faith of each family is unique and revolves around local spaces of worship. These are the most sensible places of learning for those who wish to follow the tenets of different faiths, not schools. Schools must ensure that all faiths are represented and have the freedom and opportunity to express and participate in appropriate faith-based rituals.
Our hope is that our #Aragalaya will continue until we see education transformed, and the product of a school to be measured by their empathy, their respect and valuing of the other, by their kindness and mindfulness.
#cantpassiton, previously published as the Pulse Magazine Column – Outrageous: Sex, Relationhips & Everything In-between
Just before Kabul fell to the Taliban on August 15th, a BBC correspondent in Afghanistan was pushing a Taliban leader on their oppression of women. He cited incident after incident of violence and the calamitous paralyzing fear women felt at the impending Talban rule, and the violent punitive measures of Sharia Law. The turbaned leader responded calmly justifying the need for 100 debilitating lashes for unmarried adulterers, and the stoning to death of married adulterers. “Is it better to let these crimes go unpunished?” he asked, “when hundreds of thousands die of AIDS?”
A rich tapestry of clerical morality, willful ignorance, pseudo-science, and media-stoked fears have always ensured that AIDS related deaths validate oppressive societal norms and mores.
In the early 1980s the condition was thought to be exclusive to homosexual men, and so, before the CDC called it AIDS in 1982 the scientists called it GRID – Gay Related Immune Disorder. The sensationalist media called it the Gay Plague, echoing the Exodus narrative, as God’s representatives on earth rushed to claim that it was his judgment on those who transgressed the order of nature.
By January 1983, although heterosexual transmission was an evidence-based reality, the gay plague motif continued, compounded by the charge of promiscuity. Only those who fuck around like the immoral gays die of AIDS. It was still God’s judgment – mainly, the Judeo-Christian God, the precursor to the Islamic God of the Taliban. The other established gods didn’t seem to have such forceful views on the sex life of consenting adults. In 1984 they identified HIV as the virus that causes AIDS. i.e. HIV is what you contract from another HIV positive person. In classifying HIV, scientists determined that AIDS is the final stage of HIV, where multiple diseases that may manifest concurrently. E.g. Tuberculosis, pneumonia, oral candidiasis, and severe diarrhea.
Time Magazine Cover, February 1987
Beneath the ignorant bigotry and debilitating stigma was a fact. HIV transmission due to anal sex. There are FIVE body fluids that can infect another person with HIV; blood, breast milk, vaginal fluid, semen and anal mucus. To infect someone, one of these fluids from a person who is HIV positive has to get into another’s blood stream. During anal sex, in the absence of adequate lubrication, minute tears or ruptures may occur within the anal passage, around the anal orifice or on the penis that allows for HIV to transmit from an infected person to their sexual partner. This can happen during vaginal sex too, albeit with less regularity, due to vaginal fluid, if the woman is sufficiently aroused, acting as a lubricant. This is why condoms are so essential, and also water-based lubricants to be used in conjunction with condoms. [Oil-based lubes, even Baby Oil, thins out the latex of the condom and cause it to break during sex.] So, technically, even oral sex, sex between thighs or a hand job could lead to HIV transmission if one of the FIVE body fluids enter through a wound, cut, abrasion, oral ulcer i.e., any opening into the blood stream.
The most crucial factor in HIV transmission, however, which is more cognizable now in a post COVID19 world, is the viral load. Only those HIV positive people with a high viral load will infect another person.
Understanding this changed forever how we approach HIV, but it took decades and millions of lives before the non-scientists finally caught up with the facts, and still there are those oblivious.
By the mid-1990s early forms of antiretroviral therapy (ART) were proven to reduce viral loads and help people live longer. Specific forms ART also prevented transmission from a mother to her child during pregnancy, giving birth and breast feeding. These drugs were expensive, difficult to access, and millions still died, especially in Africa and Asia. But here was a scientific riposte that worked. Like COVID19 vaccines, the utilitarian question was how to get this to as many people as needed it.
[As with COVID19 vaccines the conspiracy theories bloomed freely too – this was created in a lab by Big Pharma to earn billions/it was a CIA biological weapon/the white supremacist engineered AIDS to wipe out black people – except there was no social media platforms yet to broadcast and amplify.]
It was the Indian pharmaceutical industry that rebelled and responded to this untenable human suffering. They ignored patent laws and produced generic versions at an absolute fraction of the cost. And since the early 2000s, living with HIV gradually became the norm, not dying of AIDS. Treatment’s ability to reverse the effects of even those at the stage of AIDS was groundbreaking as seen with Selina’s video – In the mid-2000s, India donated INR Billions worth of ART to sub-Saharan Africa. Today a month’s supply can cost USD15, but there was a time it cost over USD50 a day. Since the 2000s, the Ministry of Health in Sri Lanka provides Indian manufactured ART free to all those who get tested and are found positive.
#cantpassiton
The real revolution though was when by 2017 the research finally started coming in that those on ART, due to their undetectable viral load could no longer pass on the virus. To reiterate, that means, the FIVE body fluids – blood, breastmilk, vaginal fluid, semen and anal mucus – of those HIV positive people who are on ART can no longer pass on the virus because the treatment dramatically reduces the viral load to the point of it being undetectable. UNDETECTABLE means its UNTRANSMITTABLE – the U=U campaign was born. By 2018 Sri Lanka was certified by WHO as a country that had successfully eliminated transmission of HIV (and syphilis) from a mother to her child. And Sri Lanka set an ambitious target of 2025 by which to arrive at ZERO new infections, ZERO AIDS-related deaths and ZERO discrimination. The global target is 2030.
Time Magazine Cover, June 2005
It wasn’t easy to get here. And in some parts of the world, as apparent with Afghanistan’s Taliban, knowledge and attitudes remain stranded in the 1980s. The ineptitude with which we approach HIV, even with the evidence at hand, has always been frustrating. I worked with an AIDS hospice near Pune, India, where even in the mid-2000s with India exporting billions of dollars’ worth of ART to sub-Saharan Africa, death was far too frequent a visitor due to the lack of access to these lifesaving medicines. To access it you had to get tested. You had to admit to being HIV positive. The equation of HIV=AIDS=Death, which was still fundamental to deterrent approaches to HIV prevention [where a condom to fuck or fucking die!] had failed as a strategy, a failure exacerbated by the pious accusations of immorality and promiscuity that were by then well entrenched in the collective subcontinent psyche. It provided insight into how human, all too human, we really can be.
In the four years I worked with the hospice, husbands dropped off their wives and refused to visit, allowing them to die among strangers; pimps dropped off their brutally exploited sex workers, allowing them the dignity of death among strangers; we placed bets on what time lives would be expunged as we listened to their final ragged rattling breaths; if two people died within minutes of each other, as did happen, we had body shrouding races to see which team could prepare the empty frail carcass quickest for the pyre of cow dung cakes; we watched feeding rats scurry when summoned to collect bodies from government morgues with broken air conditioners that exuded a smell of death that even now is palpable… it was a macabre period.
I remember sitting with Rev Patricia Sawo near Nairobi in 2006 to discuss how we move beyond the blame and shame that had become the standard modus operandi in conservative societies to prevent HIV. Patricia was the then head of ANERELA+ [African Network of Religious Leaders Living with HIV], an organization she joined after her HIV diagnosis. Prior to that she had preached hatred and imputation from the pulpit, raining down fire and brimstone on the promiscuous HIV positive sinful sinning sinners… and from those conversations, and those that followed, I can distill her most honest reflection – “I didn’t know any better.”
“I didn’t know any better” surely cannot still be used to justify ignorance in age of free-flowing information… or, is it now more than ever a truism, as information is so partial and meticulously packaged for the ideological consumer?
So, let’s admit that the Taliban is right, hundreds of thousands do still needlessly die of AIDS – over 600,000 globally in 2020, a dramatic reduction from the near two million a decade ago. In Afghanistan that number is anything from below 200 to below 1900 [UNAIDS range estimate 2020]. The good news is that there were over 1000 adults and children accessing ART [UNAIDS 2020]. The bad news, Taliban now controls Afghanistan and may put a bullet in your head if you’re found to be HIV positive – a quick fix other extremist groups have used before in war tom regions.
In Sri Lanka, the only people with HIV who can infect another person are those who have not got tested, and so, have not been put on treatment. The Ministry of Health [MoH] is currently running a not very well publicized TEST & TREAT initiative to get to their ZERO target by 2025. We have more people living with HIV in Sri Lanka [an estimated 3600 – MoH 2021] than Afghanistan. We probably have less people dying of AIDS [<200 – MoH 2021]. But why are so many still dying when we have lifesaving treatment available, free?
Time Magazine Cover, February 1996
Magic Johnson contracted HIV in 1991. The head of a Sri Lankan network of people living with HIV also contracted HIV in 1991. She put her kids through school and university, she’s fit, and healthy, but she’ll never tell her story publicly, because as she reminds me whenever we talk about what a beacon she could be – My children and grandchildren live in Sri Lanka. ZERO discrimination by 2025… possible? What needs to change?
In August 2021, Moderna began HIV vaccine trials on humans. Someone tell the Taliban… and don’t forget to tell our homegrown bigots of every religious persuasion too.