On World AIDS Day ....

As another World AIDS Day comes again we are left to ponder the loss of friends, colleagues and such from the related illnesses that have come over the years. Thankfully the days of said categories of persons dropping like flies in the late 1980s and 90s, when ones funeral clothes almost became uniforms as there was a service or two every month literally; the stores in downtown for example such as the now closed Rock-bottom or Hannah’s Better Buy, Lerner Shops, Ammars, Amart and others the staff could almost recognise some of us by virtue of our regular visits looking black shirts/pants/ties, dresses/hats (alongside women friends as a ‘guise to buy) for drag queens/cross-dressers and early trans-women. Some of us got so used to wearing black it became depressing, it is one of the reasons why I do not do funerals or candlelight vigils so much anymore that much as they remind me too much of those who have gone before. Like previous years we will have vigils and such again but in my near 25 years on this I am wondering if they have lost their usefulness or it is weariness on my part? Not sure, it’s starting to feel monotonous as the human component seems lost in translation but more so target meeting imperatives, statistics and analytics with social media explosion and despite these avenues rates are still high in MSM/transgender groups.

Once someone was missing from the social scene especially the folks from the lower socio-economic strata and displaced of homeless and one enquired, if the answer was there are at ward three of the Kingston Public Hospital, KPH or at the Chest Hospital for respiratory challenges, at UHWI or at someone’s house withering away as the host(s) watch helplessly then the colloquial adage would follow “dem have big A mi luv” (they have the big A as in AIDS my dear) or “dem a guh dung” (they are going down) and the inevitable would be forthcoming. The drugs or treatment courses then were not so effective then so quality of life was low, hence life expectancy as most persons I know who were taken were in their twenties or early thirties. KPH at one point became almost a holding pattern facility for persons at end stages of the disease intertwined with staff discrimination complicating matters. Some change has come since but the stigma still sits somewhere there and every now and again it rears its ugly head.

Gaëtan Dugas

At least one of the redeeming events of the year is the clearing of the ‘Patient zero’ (above) legacy and years of negative press where he was blamed for being the sole carrier and disseminating HIV in the US hence a spread. Why it took so long to right-size is yet to be properly and truthfully explained.

The side effects of the older generations of ARV or HAART such as Combivir AZT helped some but doomed others but the present first, second and third line courses are much better namely Atripla or Truvada with Efivarenz (EFV), the administration of the treatment courses especially from the regional health authorities through type 5 clinics and social workers is much to be desired frankly. The aforementioned Tenofovir as part of Atripla or Truvada in the form of Disoproxil Fumarate (TDF) is an issue for some, the newer Tenofovir Alafedamide (TAF) however that was presented as a better alternative with little migratory side effects from one to the other according to some experts was mysteriously left to the realm of treatment naive users only after much hype for the release of newer brands such as Genvoya. Many raised hopes around the world were dashed as persons who could afford it through their practitioners were exploring the migration from TDF to TAF. What has also happened to the much touted second generation maturation inhibitor that was to come to address the end stage of HIV replication and a major development in research in years? We are now hearing complaints of funding issues with research and development yet vaccine exploration in guinea pig land our dear Africa are on yet again.

The sudden stuttering of the support group meetings in St Catherine, Manchester and further westwards is one such issue also for me in terms of adherence and overall well-being, oh that continuity problem again. An pilot of sorts named ‘Brothers’ Positive on Positive’ was introduced in the lost or no-meeting times to compensate for not only continuity gap but also the missing depth of the meetings via the social workers as it turns out they are all but one evangelical Christians hence certain other sensitive subject matters are either not dealt with or are off limits and are not ventilated. Meanwhile patients are also now being asked to travel sometimes long distances to pharmacies outside their parish to fill prescriptions as dispensaries at clinics and hospitals are limiting who they are responding too albeit for the disabled, injured or critically ill persons is understandable. But ‘able-bodied’ persons as one social worker told one person recently have to go as directed to fill their prescriptions. The Drug Serv pharmacies which were designed to help offset costs are already crammed by the elderly mostly who wait for long hours as early as 5am or pay someone or ask someone to hold a space to have an early number to coincide with the 8am openings at Portmore, Union Square in Cross Roads for diabetic and hypertensive drugs mainly.

The availability of other supportive materials such as Iron tablets, B-complex capsules, Co-Trimoxazole (Bactrim) for infections of skin and so on is fickle; more amore complaints come to hand as prescriptions carry over with them not acquired although the kind doctors still write them on the list and suggest buying them. Trouble is not everyone can although they may be considered ‘cheap’ the announcement on Jamaica Information Service, JIS that more pharmacies will be added to the National Health Fund, NHF and HIV drugs to offer cheaper drugs seems calming for some but if the aforementioned clinics and dispensaries are not doling out the drugs generally and the overburdened Drugserv outlets I wonder how the government is going to fund the co-payment for private pharmacies facilitate this new dispensation according to the present health minister when we hear criticisms by even doctors of general shortages linked to or caused by “free healthcare” zapping monies from taxes. Many of us are still weary via announcement-ti-tis from previous announcements and that pharmacies closer to the patients will be made available instead of out of parish trips to fill prescriptions.

Of course the usual all is well nice rosy picture is painted by some complete with a please puss smile and altered or bettered versions individuals and entities that all is well and functioning near perfectly. Everyday some new group is around yet all of them combined cannot make one functioning unit, yet the rates are stagnant; while ‘experts’ boast about achievements on flowery worded radio and television interviews complete with farcical hypocrisy. And why are most of persons living with AIDS PLWHAs not feeling the presence of some of these groups on the ground?

Remembering good folks ................

Persons such as Leonard Officer my best friend and literally the voice for Jamaica AIDS Support (before the name adjustment of “For Life”) added at the end, hence JASL, one would call the office and his calming voice would answer the phone, even if your day was down at the time of the call the reassurance was comforting always given a warm customer experience in engaging the entity when they meant something for all intents and purposes, many can attest to this. Other friends such as former party promoter Donald “Fay Donnaway” Johnson who left us Good Friday 2001 was also one of those bubbly persons who jumped around and helped others then, including me in my difficult years 1996 post the short incarceration and three year court case on buggery; a total stranger to me prior but he turned up at Half Way Tree Court during my preliminary hearings and stuck with us (my co-accused) until the end and we with him as he died at home peacefully.

World AIDS Day indeed Human Rights work and observances of days have become monotonous to some including me, the stridency that once obtained in terms of prevention seems too relaxed and indeed populations have become too complacent given the lack of shock outcomes if you will to jolt persons into safety. As AIDS and related illnesses outcome can be controlled way better life expectancy has effectively doubled so people get or feel they can be reckless without serious consequences. But even as those matters attend ‘HIV blaming’ is also still an issue it seems as a pending court case has brought to bear. A pending court ruling slated for December 9 of a beheading case in 2012 has returned the issue front and centre.

As for the rates of infections in the midst of ever changing nongovernmental organizations growing in numbers, be they social media based or on the ground but they cannot seem to be in one accord to reduce said rates. The juxtaposing of bureaucracies, carrot baiting funders and such continue with no end in sight as the rates do not change. 32% effectively is the set number for the past 8 years since the snowball study in 2007 of MSM in Kingston in terms of prevalence rate and another 32,000 plus in the general populations are said to be unaware of their status with a prevalence rate of 1.6%, female sex workers coming from 25% down to 2.5% Mandeville and St Andrew of 201 subjects.

Homelessness via stigma, forced evictions and homophobia has surfaced at every phase of that study and others hence yet the NGO republic as is being cynically described in some circles of the intelligentsia have simply watched the problem fester and mature to a stinking sore in predominantly Kingston and elsewhere, yet very little by way of welfare has come but when HIV studies are to be conducted suddenly the populations are found and put to good use for reports and such. Then they are left to continue where they left off prior to the privileged visits. Strange that homelessness existed even before the formation of many of these NGOs some 25 years ago yet no serious answer yet, interest or the lack thereof is the elephant in the room interspersed with tokenistic gestures as feeding programs or care packages and after consuming the content the population is right back where they were found.

Coming from the days when fat lies were told to suggest MSM cannot be reached by interventions as the buggery law will interfere with such suggesting the facilitation of illegality which played right into the hands of the fanatic Christian right movement, and that issuing condoms will give a go ahead for anal sex that is illegal then we wonder why the prison riots of 1997 came to be when suggestions were made to have condoms in prisons, that has now been debunked thankfully, outside of that is the politics internationally (Tenofovir developments – TDF/TAF switch-a-roo for example) that is another matter, and as for PrEP (the chemical condom psychology ethics) that is unfolding even as I type meanwhile less persons are dying but with newer figures coming out recently of so called concerns on transgender infections rates the old figures have always been questioned especially by me, other early transgender activists and allies as the traditional ‘lumping’ of transgender in the MSM mapping as they are absorbed as gay or present as gay (male to female) and are made invisible by default or under the radar in terms of detailing specific (sub) groups. There is also the business of internal stigmatizations as for example persons are still doing this practice of taking photos of their negative test results and then cussing out or ‘bitching’ others who are positive which may help to complicate the matter if getting persons to test and safer sex eventually.

The aforementioned bureaucracy comes in here yet again as the lack of sensible programs when transgender were never engaged in any meaningful way until recently could explain why the rate was so high and stayed so for so many years. Specific groups require ‘outside the box’ responses and not the typical textbook and superficial interventions. The pigeon-holing every now and again of bisexuals as “a bridge for the virus” by epidemiologists past and present over the years outside of the creative responses and implied biphobia, bi-stigma yet bi-omissions, not to mention very little dribble regarding lesbians and risk for from program development or LGBT advocacy is just simply ridiculous and then we wonder why the rates won’t budge downwards since whenever. Simply relying on the mainstream spinoffs from traditional social marketing and adverts; commendable yes but the ‘high knowledge’ but little reactive actions problem persists. We all know that we must use condoms and while yet still very little push on abstinence or delaying sex messages, the sex industry is obviously not being engaged properly as evidenced in a recent dubious utterances by someone inside the family planning agency who are now the ones rolling out the HIV program. The P.L.A.C.E, Priorities for Local AIDS Control Efforts methodology for example has been adopted from a successful 2006 pilot which I was one of the outreach officers to cover street venues, adult clubs, tertiary level campuses, and plazas then but somehow the tailoring to our unique situations seems missing as it is just being rolled out as the text verbatim says with very little forward thinking by the powers that be, namely the country control mechanism for Jamaica and the Global Fund. Simply just having condom booths at LGBT events or hosting parities is not enough but if the people who are designing some of this are hardly not even from the populations how can they understand the issues when they refuse to learn as well.

What is next? Is the fundamental question though not openly asked by those who control the levers of the cogs of HIV, many continue the political correctness farce as a front; something has to give somehow and soon if any change is to come. When one can hear even younger folks cynical commenting “watch them” suggesting hypocritical pretence then one has to wonder what is really going on.

More anon

Peace & tolerance

H