The UK: My Serious Concerns About HIV Home-Testing Kits

Deep concerns about this

On reading a news item HIV Home-Testing Kits: Law Change Proposed, I found myself seriously concerned about this development that there is need for a debate as what this means for the UK.

As it stands, The HIV Testing Kits and Services Regulations 1992 prohibits the sale or supply of kits to members of the public who are not in the business of providing services as regulated under the following laws - the National Health Service Act 1977(1), or the National Health Service (Scotland) Act 1978(2) or the Health and Personal Social Services Order (Northern Ireland) Order 1972(3).

Fundamentally, I think it is a good thing that HIV testing be regulated and kept within the ambit of the law where the usage of kits will have a proper chain of custody from purveyor to deploying the tests for whosoever might need it whilst guaranteeing the elements of anonymity, privacy, secrecy and confidentiality having made the person fully aware of the implications of taking an HIV test.

One-sided views

My concerns are even more palpable when the foremost HIV/AIDS charity, the Terrence Higgins Trust celebrates this news on their Facebook Page having lobbied for this change in the law which in terms includes a possible conflict of interest by reason of the fact that they also provide HIV Postal Tests by blood sampling leveraging mobile telephony tools to provide results to gay men and Africans living in the UK.

The following quotes in that news story seem to have really good intentions but leave many questions unanswered:

“I hope that by removing the ban on self-testing kits people will be able to choose the right time and right surroundings to take a test and, if positive, help them get the best treatment available.” Public Health Minister Anna Soubry.

“People deserve to have a choice about how and where they test for HIV and proper regulation will make self-testing a safe and supported option for many more people across the country.” Lisa Power, policy director at Terrence Higgins Trust.

“We know that some people are already buying poor quality self-testing kits online from overseas which is why we have campaigned for a change in the law.” Deborah Jack, chief executive of the National AIDS Trust.

Hardly addresses the matter fully

I can relate to the sentiments expressed by these three significant HIV/AIDS specialists but offering choices and options is just half the story, I see nothing in these statements that provide safeguards against misuse or abuse when it becomes open-season for the unregulated and the public to acquire HIV test kits and use without restraint to elicit information that would have been protected in a more professional and organised setting.

Last year, Bisi Alimi, the renowned HIV/AIDS activist and human rights campaigner touched on a significant element of self-testing that goes beyond choice and control in this piece for the Guardian - An HIV home testing kit won't give you emotional support.

If we were to be honest with ourselves, the HIV home testing kit is not the equivalent of a pregnancy test, the results of both might well be life-changing but the beyond teenaged pregnancies and pregnancies by reason of the violation of the person, society is more accepting of the news of someone expecting, it is something you announce to as many as are close to you and well-wishers, it is not something you do for an HIV test result that proves positive for the many issues that it brings into the life and the immediate community of that person.

An unsatisfactory response

I engaged a number of activists, support workers and specialists in this field on Twitter before I decided to post a comment on the Terrence Higgins Trust – Facebook Page about my concerns, which appear below.

They did respond but I found their answers unsatisfactory laden with bloated organisational speak rather than the expected nimble adaptation responsive to the serious and real concerns that should be their core competence.

I posted a second comment, clarifying the fact that I am not against self-testing per se, but if there are no safeguards against the abuse people who might be coerced, compelled or put under duress by those with influence to take such tests outside a properly regulated framework, the consequences can be dire for those concerns.

It is not enough to say there are laws that safeguard abuse and protect the abused, if there are no immediate means to prevent and challenge overreach by the unscrupulous engaged in unconscionable activity, the damage would have been done long before redress can be sought, if ever it gets to that stage, by which time criminality has gained the edge of impunity just because those we have expected to ensure protection have prioritised choice and control over the duty of care, concern and compassion to play around with HIV infection and detection rate statistics at the expense of real people.

Safeguards or nothing

The law might well be abrogated, but we must not allow for this to be done without ensuring that the least, the powerless, the defenseless, the vulnerable, the helpless, the unfortunate and the disabled are adequately protected to pre-empt egress and abuse – that in the least should be the prime directive of any self-respecting HIV/AIDS organisation in the UK that considers humanity and human rights above all else and it is not too much to expect the Terrence Higgins Trust to be the greatest advocate to safeguard and protect before control and choice.

My Facebook Comment to the Terrence Higgins Trust

Akin Akintayo >> I think there are serious social and cultural ramifications for having HIV Home-Testing Kits beyond the idea that this puts control in the hands of people to determine how and where they want to be tested.

Having a HIV diagnosis is best managed in a professional setting, whilst it might be likely that those who discover their status might seek medical attention, there is no guarantee that they will, if they do not sink into mental depression and other issues in tying to handle the result outside of counselling environments.

An HIV self-test is in no way equivalent to a pregnancy test, the social ramifications of having a pregnancy test are hardly grave apart from in socially compromised settings like in teenaged pregnancies or those resulting from abuse.

In other settings, just as virginity tests are abused to violate women, I could see instances where these tests are administered under duress by those with influence over the tested, the consequences of which might be dire and grave.

I worry that this drive is being aimed at statistics rather when this is fundamentally beyond numbers to people and the way they exist within their communities along with the social dynamics that run within those communities.

Beyond home-testing, it just fills one with trepidation that some on discovering their status outside of medical supervision might also find ways to self-medicate by importing medicines from abroad and yet not know the progression of the disease in their system - their hubris in having such control might make them even greater vectors of the disease to the unwary - that will be unacceptable.

I will say again that THT should concentrate on persuading people to go for tests where they will have control, privacy, confidentiality and full protection of the law away from undue coercion and duress exacted by those who have undue influence over the lives of the people who need to test.

It is the harder part of your job, but at the same time it is the noblest part of your charitable activities if you chart this course.

Thank you.

Their response

Terrence Higgins Trust >> Thanks for your comment, Akin. We will continue encouraging people to test for HIV in the way that is most appropriate for them - GUM, community clinics, home sampling and - once established and properly regulated - self-testing. We believe all of these approaches have a role to play, and people have the right to decide for themselves how they want to test.

My second comment – awaiting a response

Akin Akintayo >> I appreciate the seemingly overarching view that "people have the right to decide for themselves how they want to test" the issue is how have you mitigated for the possible abuse, misuse, duress and coercion that I highlighted in my original comment and how will such people be protected?

Fundamentally, I am not against self-testing, per se, but I see no considered and detailed safeguards that makes this direction safe for those it might be imposed upon who will not have ready access to the essential legal protections in the immediacy of when they are abused.

There are social consequences and they must not be ignored to the point that whatever course is taken appears dogmatic.

Earth-queers quaking in Israel

Temple smarts and street dunces

It is a shame that sometimes we cannot look to our religious leaders to foster social cohesion and promote the need to help all peoples live together in harmony.

Their deep knowledge of presumably spiritual matters is sometimes expressed in crass stupidity about social, political or natural law issues.

Even those who believe in miracles do not oppose natural laws; no one would call for rain to come out of the ground nor would they expect the crippled to rise up and walk on pig trotters.

Then we have political figureheads of extreme and fundamental causes who in their ignorance and idiocy look for social cannon fodder to blame for simple natural occurrences which get passed off as acts of God.

Pastor President with Bible Constitution

Mike Huckabee the Republican presidential nominee aspirant represents one shade of that perspective where America would be in danger of having a pastor for a President and the Bible for the constitution – how that can be any different from Ayatollah’s Iran surprises me as so-called conservatives dyed in the formaldehyde of the past still ply in to vote for him.

Can anyone tell these people that human government is radically different from religious government? One requires popular support; the other thrives on the cult of the personality and worse things that impact on the efficacy of democracy.

Earth-queers quaking in Israel

However, the reason for this write-up surrounds the crass statement by a political leader from the ultra-Orthodox (read - not of these times) Jewish Shas Party indicating the recent earthquakes in the Holy Land were caused by gays.

In other respectable forums, a statement like that should make the person certifiable but because he is a politician, stupidity is taken for political savvy – my view – if many people vote for an idiot, it does  not suddenly make the winner of the popular vote smart.

History and experts

I am not going to go into a seismological survey of the Holy Lands but an expert in the geology of the Levant did indicate in November 2007 that the Middle-East was ripe for another earthquake.

Apparently, there are 400-year historical circles that offer a kind of pattern to these predictions with major earthquakes occurring at these times in history along the Jordan Valley in 31 BCE, 363 CE, 749 CE and 1033 CE – Other experts.

To go by the assertion of this political leader I would wonder what societal malaise might have taken a 400-year cycle to coincide with major earthquakes.

It is morally reprehensible for religious or political leaders to seek a minority group to blame for natural disasters and the sooner adherents and followers call their leaders to account the less their beliefs and dogma are subjected to ridicule.

Not 5 in the Israel of God

If I were to seek a Scriptural aside to this verbal atrocity one would only have to refer to the intercession of Abraham on behalf of Sodom and Gomorrah where God acceded that He would spare them if He could find 5 godly people in those two cities.

In the end, only 4 escaped the wrath of God in those 2 cities; Lot, his wife and his two daughters – so maybe the earthquakes in the Levant could have been prevented but for the unfortunate situation that not even 5 godly men could be found in the whole of the Israel of God.

I do not need to carry this argument any further without offering the likes of Shlomo Benizri the opportunity to make idiots of anyone who gives any attention to his comments.

What has any minority done to warrant unfair and dastardly attacks like this?

Seriously obsessed with gays

Obsessed about gays

The archbishop beat me to it, but one cannot help but notice the all-pervasive obsession with homosexuality amongst seemingly heterosexual macho men or fertile women all around the world. I do have time for Archbishop Desmond Tutu, a perceptive, practical, conciliatory world figure who I do respect.

The Church in its various guises has split over so many issues, in this day, it would have been more edifying if they were split on how best to handle to the scourge of HIV/AIDS - by missionary work or sending aid - maybe Darfur - by finding ways of isolating the government of Sudan or finding ways of safely getting medical and food aid to the refugees - or global poverty.

This is where the Church may be seen as relevant and responding to the needs of people, it also helps the work of evangelism as people see the work of Christ exhibited selflessly by fellow human-beings.

Galvanised on the negative

Unfortunately, the church cannot seem to galvanise itself on the work of compassion and love, their energies are being expended on the sexual preferences of people who would rarely visit church.

Those who visit and decide to fellowship in the communion are castigated and ostracised; they become the objects of pontifical proclamations of evil such that those barely interested in church do not bother themselves with the matter any more.

There may indeed be chapter and verse of fork-lifted scripture to condone and encourage animosity against homosexuals, but I cannot recall the Gospel being preached in that manner or tone - basically, you cannot get religion into people if religion would not first accept them as they are and then teach them how to live and grow in the tenets or doctrines of the same.

The gates are closed and slammed shut, long before the people who probably need church have had time to walk down the road that leads to the parish.

One would not be remiss at noticing that the church has definitely lost its way, the message of charity and compassion has been lost in the cacophony of conservative activism and some moral debate which in no way addresses fundamental human suffering as we see in the world today.

A right-wing ambush of shame

Move to Moscow last weekend and a peaceful protest to ask the Mayor of Moscow to allow a gay march, something that freely happens in most Western capitals is overrun by right-wing yobs throwing Nazi salutes for the purity of Russia.

It makes you wonder, if the spread of right-wing intolerance is the better image for a country or the simple acceptance of the fact that a minority people can be different and they too just have as much rights as any other citizen of that great country.

The question then becomes - what is it about homosexuality that agitates heterosexuals so radically?

Definitely, something deep down in heterosexual psyche is in need of psychoanalysis because I have never seen homosexuals get agitated about the gathering of homosexuals, they all probably grew up amongst that lot and have had to live with bigotry, intolerance and violence that comes at them every day.

That old rope

Many would say, I have heard that before, even the just recently deceased Reverend Jerry Falwell subjected himself to abject ridicule when he suggested that Tinky-Winky in the Children's TV show - Teletubbies was homosexual because of the purple colour of the body suit and his handbag.

No doubt it does look a bit suggestive; a spokesperson for children's rights in Poland picks up this dirty rag 8 years on. Ewa Sowinska first thought the character was female then thought male; asexual did not occur to her, fair enough.

She wants a psychological evaluation of Tinky-Winky to be done to determine if Teletubbies is suitable viewing for Polish children.

Now, I have seen how enthralled little children get with watching Teletubbies, it would be like snatching milk from the mouth of babies in order to protect them from - you tell me.

How do we get people like this to express such dastardly opinions in public and still appear sane? We are all obsessed with homosexuality - the sooner we own up the better we would feel about ourselves and the self-loathing that exacerbates the externalisation of unwarranted anger against harmless people who just want to get on with their lives.

That last question I asked 18 months ago lingers - Does gay marriage affect the relationship between you and your partner? If Yes; Why? If No; What is the problem?