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.