Experience is not enough to teach you to understand things

Ignorance is a comfortable shelter

Experience is no guarantee of a quest for knowledge, or enlightened understanding of a situation. Nowhere is this more obvious than what I have seen of the broader gay community’s understanding of the core science and social issues pertaining to HIV/AIDS. [POZ]

Despite the public information and community activities promoted by many LGBTQ+ organisations to people, in places, and at events, the appalling ignorance of people to these issues is frightening.

Now, I do not intend to use this blog as an education aid, there is enough for people to search for and update themselves if so interested. However, I was reminded of a conversation I had years ago when someone aware of my situation treated me with disdain, disgust, and revulsion.

Quite inscrutable to understanding

It did not bother me; I have been a recipient of too many negative attitudes to be concerned about the chance encounters. What surprised me was when this same person years after the first brush informed me his parents have been HIV+ for over 20 years.

I held myself back from saying, how can you have this disease embedded in your family and then treat others badly? I could not understand how he until recently had not acquired knowledge or insight to interact with others with a sense of humanity. The absence of curiosity that belied the original conversation was baffling in the light of the shared experience.

It might well be that seeing his parents who he says are thriving today, on their antiretroviral (ARV) medications and in rude health, there were times in the past when they were poorly and ill, that witnessing those times had mentally scarred him. I did not probe any further, I was just weakened by the thought that experience is no impetus for understanding the ‘how is’ or ‘why is’ of anything.

Mind your language

There needs to be something else, an ingredient of curiosity and determination to learn and appreciate things. There are some many things to understand, the vagaries of prevention (PrEP), exposure (PEP), testing, viral load, CD4 counts, and social campaigns on U=U.

Fundamentally, there is also the matter of language and stigma, people with HIV are not dirty and conversely, not knowing your status if you are sexually active does not make you clean. Whatever your preferences, the greatest thing you can do for human dignity is to treat everyone with consideration, courtesy, and respect. Education is a good thing, with your learning, seek to understand the seemingly difficult and taboo things. [Counselling Today]

Blog - Dealing with sexuality and HIV stigma

Courtesy of the Stigma Project.

Thought Picnic: From chills to thrills in health updates

Singing of life

There was a time I was in a church choir just before Christmas, my croaky voice landed within the baritone range with the likelihood that if I had voice training, I might well have improved the range without straining my voice box.

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For me today, I could either be singing ‘Good Christian men rejoice’ and ‘As with gladness men of old’, it is not Christmas, but I have had that state of mind. My Christian faith is a source and wellspring of hope and strength that I cannot relegate to insignificance. It gives me the ability to see beyond the inconvenient, the uncomfortable, the disturbing, and the difficult or seemingly impossible.

Banishing the anxiety

The muddled messages of the government about the extremely vulnerable needing shielding from the Coronavirus left me in a quandary that I was expecting a letter from the NHS informing me of my vulnerability and the need to stay indoors for 12 weeks. [GOV.UK]

Visiting the website today, I notice the cohort I belong to had been removed from the list, but that is not before I realised the full gravity of what the government was planning for those who are extremely vulnerable. In one of the worst expressions of an intention regarding the health outcomes, some people in Wales received letters that led one of the recipients to say, “It was like having my death warrant being sent by the grim reaper. It made me feel worthless.” [WalesOnline]

Asked to give up already

The intention, for the people with vulnerable conditions, if they did fall ill due to the COVID-19 Coronavirus or they had a deterioration in their health due to their underlying conditions to stay at home to be cared for by friends and family, not to call 999 for emergency services whilst agreeing not to be resuscitated if they stop breathing or their heart stops. The people were to grant prior absolution to medical professionals from following the Hippocratic Oath.

It is one thing to initiate discussion on your personal end of life care, it is another for your own GP to inform you that they will fill in a DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) form on your behalf because the state has decided the limited resources and personnel in a pandemic we were poorly prepared for makes you expendable.

Courtesy of WalesOnline [Link]

Reading the letter sent a chill down my spine, the prospect that if anyone falls gravely ill that no medical heroism would come to your aid, rather you’ll be left to expire. The thought that when I had the January, what could be cured with a few doses of antibiotics would have refused me until the bacterial infection presents sepsis resulting in agonising death does not bear thinking of.

From despair to great relief

This in my view is the culmination of the mendaciously, heartless and evil herd immunity madness that the UK government proffered on the 12^th of March. Allow the vulnerable to be strafed by the Grim Reaper without respite, their martyrdom a glowing statistical sacrifice to the greater good of giving up their places in the health service to the presumably more deserving because they are younger, healthier and maybe still have more to contribute to society. Such is what makes cynics of a more caring humanity.

Blog - Thought Picnic: The vulnerable to be martyred to the Coronavirus in the UK

This morning the British HIV Association published an update, the first line was the summary and answer to many anxieties about vulnerability. “So far there is no evidence for a higher COVID-19 infection rate or different disease course in people living with HIV (PLWH) than in HIV-negative people.” [BHIVA]

Even better personal news

A few hours later, I got a call from the specialist nurse from my hospital, as my consultant had sent me a tweet that my scheduled appointment for the 3^rd week of April will be by telephone rather than a visit to the hospital. We had a discussion regarding the results from my last visit in October if there were any changes to my condition and how I was faring in my broader life.

One piece of information that would have determined where I was in the vulnerability spectrum was the CD4 count, it was the highest it had ever been from a nadir of 20 to over 400. For the past decade, it had struggled to stay in the 300s and now it had breached a somewhat magic figure. That made me really happy and glad.

Obviously, that was because I have been religiously taking my medication which keeps the viral load undetectable, but I also think the beginning and growth of a romantic relationship has contributed in no small measure to my sense of wellbeing. I have my Brian with an I to thank for that. There is a life to live out there, a world of abundance to thrive in and love of inestimable value to appreciate, cherish, and enjoy.

Editorial: Twelfth of May 2011

Concerning another monkey vaccine

Two news stories appear to coincide with managing the scourge of HIV/AIDS, on the one hand is the study of eradicating the primate variant of HIV known as the Simian Immunodeficiency Virus (SIV) in rhesus macaques making use of a genetically modified version of the rhesus cytomegalovirus (CMV).

The good news here is that this vaccine appears to strengthen the immune system to the point of controlling SIV and eventually reducing its progressive infective rate until the disease is abated.

However, there are many concerns with this study from the controversial view that patient zero contracted HIV from a chimpanzee to the concerns of introducing a strain of human CMV as part of a treatment regime.

Africans may not benefit

CMV belongs to the herpes family of viruses that is usually benign or dormant but can break out as chicken-pox, shingles, fever blisters (herpes I) or genital herpes (herpes II) amongst others, it is more prevalent in sub-Saharan Africa than anywhere else making that line of research rather risky and ethically questionable in terms of safety and assurances for effectiveness.

This study might well be of greater value to those outside sub-Saharan Africa but after the failures of a number of vaccine trials, many of which were aborted too, it is important to remain vigilant that all checks, procedures and monitoring are in place so as not to raise false hopes at first and then cajole subjects into trials that might be of greater detriment to their already weak health status.

Helping sero-discodant couples thrive

Accepting the fact of the prevalence of HIV/AIDS has been hard enough for some societies and beyond that the measures needed to prevent infection are fraught with cultural, religious, political, social and economic issues.

UNAIDS have released a study that heralds the reduction of infection between partners where one is HIV infected or in the jargon, sero-discordant couples. The study began with about 1,750 couples from 8 countries in Asia, Africa and South America.

Entry into the study required the infected party have a CD4 count of between 350 & 550 which represents a level at which the WHO does not require the patient to have commenced Anti-RetroViral (ARV) treatment.

Between news and scientific fact

One arm of the study was immediately entered into ARV treatment on commencement of the study and the other arm only commence treatment after two consecutive tests measured a CD4 count regression to between 200 & 250 or had developed an AIDS-defining illness.

The results show a reduction in transmission of HIV infection in 96% of the cases as reported by UNAIDS but the news story does not appear to comment on the significance of viral loads which is the amount of virus in the blood that could determine how infectious a person can be.

It is however known that ARV does reduce the viral load significantly to somewhat undetectable levels it does not however mean the complete absence of contagion.

Subtle observations with this study

The study that took in couples from the United States was aborted and though it was supposed to run for 78 months seems to have ended 3-4 years early because of the positive results though one should be concerned about the fact that low viral loads and higher CD4 counts for the time of that study does not confer immunity by any stretch of the imagination.

The lack of Western subjects is also instructive because medication in the study did not include multi-class combination drugs like Atripla though combinations of other discrete drugs would have been effective all the same.

At the same time, it is possible that Eastern Europe might have benefitted from this study though on balance the cases of heterosexual HIV infection would have been more prevalent in the areas that had the study.

HIV is more than a medical condition

It is important that the kind of complacency that appears to attend to HIV infection in the West because of more effective treatments does not cascade to these other study areas that included India, Brazil, Thailand, Malawi, Zimbabwe and South Africa, the absence of Nigeria from that study group should be investigated too.

On the whole, the progress in trying to control, manage or cure HIV is welcome but the news stories appear to herald situations which on closer scrutiny of the facts belies less of the optimism being communicated.

Most importantly, there are significant anthropological consequences of these studies between countries, cultures, traditions and laws coming north of the equator in Africa would have given this study much more empirical import just as allowing it to include the West, China, Russia and Eastern Europe. HIV in different societies is a lot more than a medical condition even in the broadest terms.

Acknowledgements

The following sources form the basis of this editorial; the news about the CMV vaccine against SIV was published by the BBC then related to drug regimes reducing HIV transmission as published by UNAIDS but 6 months earlier, the BBC had run a similar story.

The HIV Prevention Trials Network (HPTN) Study is fully documented at the HPTN 052 website. Meanwhile the list of available drugs for the treatment of HIV as at February 2011 is hosted at the AIDSMeds website. Regarding CMV the New York Department of Health offers some information about the Cytomegalovirus.