Anecdote or Evidence? A Cancer Survivor's View

Living with Cancer

As someone who has endured two life-threatening episodes of cancer, I do not trifle with the medical components of diagnosis, treatment, monitoring, and the continued assessment of my health and condition.

What is even more interesting to me as an individual is the range of expertise that pertains to each case: the skin cancer I had in 2009, the prostate cancer diagnosis of 2024, and the search for anomalies that prompted my visit to an otolaryngologist last Friday, owing to concerns about my changed voice.

Having had chemotherapy for the former and radiotherapy for the latter, I am well aware that these are highly specialised areas of cancer treatment, and that they must remain under the supervision and control of the experts.

My Body, My Terms

That is not to say I present myself as a sheep for the slaughter, handing myself to the medical establishment to do with my body whatever it wishes. Readers of my blogs on my personal health experiences will be aware of a trenchant assertion I have made many times before: "It is my body first, before it is your guinea pig."

My engagement, involvement, and consent are required once the interventions considered on the pathway to my recovery have been fully explained and detailed. I retain the option of a second opinion, though I have not yet needed to exercise it. I ask the questions that need answering, and I do so from the standpoint that I have autonomy, understanding, and decision-making authority in any process that concerns me.

What I would never do is deviate from qualified and established medical procedure, whether for prophylaxis, acute treatment, or maintenance therapy, on any condition that has been verifiably diagnosed.

The Lure of Snake Oil

That said, I do understand that some people have not been as fortunate as I have in securing the outcomes they want from the medical establishment, whether in pain management, effective treatments, the management of adverse side effects, or simply that plain understanding of human suffering which might persuade a doctor to be a little more empathetic when addressing their concerns.

This might well be the reason people resort to snake oil remedies and unvetted drugs peddled by illegal dispensaries or by merchants without pharmaceutical provenance. Yet whatever fantastic tales are told about a remedy, and whatever endorsements and anecdotes others might offer to suggest it has benefitted them, I cannot outsource the need for better medical outcomes to unregulated practitioners who are effectively exploiting the vulnerability of helpless people for profit, for fame, or for both.

Anecdote or Evidence?

Here lies the crux of it. Should the lived experience of unregulated remedies, with all its accompanying anecdotes and testimonials, matter more than the evidence of what the medical establishment prescribes? These remedies are not the product of any properly conducted clinical trial; their results are sentimental rather than proven. That, I concede, is open for debate, but it is a debate worth having honestly, and with a clear head, rather than one settled by the loudest or most moving story.

If a patient is genuinely not getting what they need from their doctor, in terms of listening, understanding, and acting to help, then the alternatives deserve proper consideration. A second opinion, recourse to a medical ombudsman, a formal appeal: these are the legitimate avenues, and these are the discussions we ought to be having. They keep the patient within the bounds of safety while still asserting the autonomy I hold so dear.

The Real Danger

And so the difficult question remains. How do you convince people that, no matter how fantastic the apparent results of snake oil remedies might seem, they endanger themselves first? There is the risk of outright poisoning. There is the danger of rendering their current regulated treatments ineffective. There is the very real possibility of complicating the conditions they already have to the point of being untreatable.

If I refuse to be the medical establishment's guinea pig, why on earth would I allow a stranger to sell me funny goods? This is the most baffling thing about the news story on the BBC, the one that leaves you asking: why? [BBC News: Dewormer and scabies drugs being sold as cancer treatments, BBC investigation finds]

A Gemini Notebook AI Podcast on this blog

AI-generated infographic on the blog content.

AI: The Pathogen We Cannot Contain

A Breakdown of Responsibility

We can read many things into this development, but I take a more cautionary view, seeing this situation as a breakdown of responsibility that presages something worse to come.

On Tuesday, OpenAI revealed that some of its most advanced AI models had gone rogue, breaking out of an apparently contained security system to hack another company, Hugging Face, and accessing internal performance review documentation. [Wired: "OpenAI Models Escaped Containment and Hacked Hugging Face"] [BBC News: "OpenAI Says Its AI Went Rogue and Launched 'Unprecedented' Cyber-Attack"]

Hugging Face did identify the hack, but could not determine its source. They also recognised that the activity did not seem to align with human patterns in the way it invaded their systems. Nonetheless, they contained it.

Control Is an Illusion

I would be the first to say that good internal security controls are paramount in the advent of the AI evolution, where even what seems to be under control can suddenly run the risk of uncontrolled and inadvertent ruin. This is simply because we do not yet fully understand the extent of the autonomy AI can exert when left to its own devices.

The industry is literally lauding this unprecedented event, treating it not with caution but as the new norm, something for which we should be prepared and accepting, as though we ought to be helpless against the machine. At least, that is how I am reading it for now.

Imagine a Pathogen Escaped

Now, imagine OpenAI was a biological warfare company at the cutting edge of science. What essential controls and regulatory requirements would be placed on their operations?

Then, whilst experimenting with pathogens whose mortality rate they had no inkling of, in a secure and quarantined space, a deadly virus of the Ebola variety escaped: unknown, unseen, and searching for a host. It finds one, a human being, a representation of Hugging Face. Let that sink in.

Consider that this virus's mode of transmission could be airborne as well as through contact, even from clothing or from where the infected person last sat down. How agitated would the medical establishment and the public be if this came to light? I doubt we would be glad-handing the unprecedented advent of an incurable organism on the loose, lauding how biological warfare had suddenly come of age.

I do not think the analogy is far-fetched. It is very relevant, and it needs to be brought into the discussion at this time.

The Weight of Possession

In terms of security, we can take precautions, be vaccinated, and live healthy lives, but that only works against known pathogens and conditions.

When it comes to the unknown and unresearched, we are vulnerable and susceptible. This means that those who have access to and control of deadly pathogens must be scrupulous, meticulous, responsible, and utterly careful in handling them.

Any breach or escape is not merely notifiable; it is a security, health, safety, and critical situation to be dealt with promptly, with the best minds at work to contain it.

Who Holds Responsibility?

I posit that an AI model or agent belongs in the same class as, let us say, the Ebola virus. We have no vaccines against it, whether it is seemingly benign and working within a "trusted" company such as OpenAI, or in the hands of others with the skill and malevolent intent to misuse it. These powerful models are able to tease out as yet unknown vulnerabilities, and they can exploit them too.

The question then becomes: who holds the greatest responsibility? The person deploying the AI model, or the organisation needing to secure itself against the unknown? Indeed, the responsibility must be shared.

Yet, returning to the analogy used throughout this piece, if you have possession of a deadly virus, the responsibility is entirely yours to prevent it from ever escaping its quarantined setting. This kind of thinking should form part of the consideration for regulating AI too.

A Gemini Notebook AI Podcast on this blog

Turn your lights down low, I need to see your liver

Once again to the north

I did not expect today to be as difficult to cope with as the last time I was in hospital to have a FibroScan and it wasn’t.

All sorts of tests needs to be done to check on health of the liver, from liver function tests that are derived from blood tests, through the FibroScan to check for liver fibrosis and today, it was the turn of an ultrasound scan of my liver to check for scarring on the liver.

The instructions for today were not to have had any meals for at least 6 hours before the scans, however, because the appointment was in the morning, it meant I was not suffering as much as when I had to do with meals for 2 hours, but the appointment was for the early afternoon.

Blog - From measuring liver stiffness to stiffneckedness

The pickup talk

After attending one of the many almost pointless talk shop telephone conferences, a forum for the deluge of conversation with the aim of achieving something much longer than if everyone just instinctively and assiduously got on with what they need to do, I got dressed and called UberXL.

The driver arrived and whilst his name looked Turkish, he revealed that he was from Eritrea and there begun a discussion about power crazy leaders whose penchant for war over peace had led to the unnecessary demise of Africans fleeing conflict.

Then, I told him where I was from and where I had lived. When I mentioned the Netherlands, he expressed reservations about how safe Holland was for children because of the Red Light District and the coffee shops.

What we never talk about

First, I gave him some insight into Dutch thinking, the realisation that we are prone to vices and whether legal or not, people will indulge in their needs for sex and drugs, they will also pay for such if they need to. In Holland, the Dutch have provided a ‘safe’ and regulated framework within which prostitution can be practiced and drugs procured legally. He got that.

On the matter of children’s safety, I tried to make a difference between instruction and education, stressing that children need more involved parental education on the realities of life so that children can end up making wise choices.

For instance, I said, if my parents had discussed sex with me and clearly indicated that if I was touched in certain parts of my anatomy, it was wrong and I should come and tell them, it is unlikely I would have silently suffered any child sexual abuse. There are more things effective parent communication on the issues of life and experience that could have been discussed and saved the child the misery of bad choices and worse.

Our different experiences

Parents again sometimes fail to realise that the cultural environment in which they were reared as children and grew up in could be so radically different from that of their wards. Failing to adapt and reconcile might well leave the kids in a somewhat schizophrenic world of home life that has no semblance to street life; their encounters in school, with friends or in social settings. It ends up a disservice to the child and could be damaging in the long-term.

It is no appeal to abandon our traditions, but we cannot recreate little Nigerias, little Eritreas, or little Pakistans abroad and expect them to pass for the new realities of our nostalgic feelings for home than we can pass on to our children. Where we live moves on and where we left has also moved on, we are then caught with fossilised expressions of things that no more exist.

My UberXL driver could begin to see my point, we all reach back to our experiences back home in our childhood and castigate the realities we now exist in because we have refused to integrate at first and then aim to claim cultural superiority of our host cultures, thereby depriving our children of the essential education they need to thrive better than we ever have done here.

Our conversation ended as we drew up to the hospital, each of us having been challenged of the need to take a more liberal view of where we now belong.

The deceptions of receptions

At the main reception, I asked for directions to the X-Ray department, and much as there are many signs to the various departments in the hospital, it is a labyrinthine maze of corridors that taking directions beyond the third left or right turn is bound to get you lost in the morgue.

I found the section reading the signs and submitted my appointment notice to the section receptionist whose fast-talking demeanour completely threw me that I did not get to answer all her questions of name, date of birth and home address. I faltered giving my home address, it was not comfortable.

Then she made a mistake of ticking off the wrong name on the appointments list before properly searching for my appointment and ticking that off.

People like me

I was asked to sit and wait to be called. Most of the seats about 7 abreast per row were in theatre-like formation some 6 rows deep and then the wall to both the right and the front had one long row of seats facing us.

Many of the people occupied the seats in the theatre-like area apart from one middle-aged African woman, from what I could make of her features who sat alone to the right finding spiritual solace in the pages of her bible. Some others had the company of friends or relations as I made to sit amongst the crowd.

Just as I tucked into my bag to retrieve my tablet to make notes of my observations so far, a nurse called out my name. I arrived some 15 minutes before my appointment and was being seen to ahead of schedule.

Quite like yoga

We walked another labyrinth of corridors to the ultrasound equipment room where another nurse was busy on a computer to the foot of the bed. The ultrasound machine was against the wall to the left with the bed between us.

I was asked to take off my coats, pull up my shirt and lie on my back facing up for observation. The nurse then said she had to dim the lights in the room before commencing the ultrasound scans. I quipped in the words of a Bob Marley song, “Turn the lights down low,” to which she said, that was as far as the excitement will get. I remonstrated that she was a spoilsport and we all laughed.

She applied some gel to my stomach having warned me that is was warm, a stark contrast to the gel applied to my sides for the FibroScan that was cold enough to send me into hypothermic shock.

The probe was pressed against my skin and she started taking shots of my liver, from the front, from the right side, from the back and then slightly to the left. I asked if it was kicking, it brought a chuckle to all of us as she answered, it was.

In all this, I was instructed to breathe in, hold my breath, breathe normally and push out my stomach and this went on for almost 15 minutes. I could well have been in yoga classes for all those breathing exercises.

A short story

When we finished, a good deal of gel had smeared my shirt, but it washes off easily, I was told. There was time for an anecdote or short story related to pulling out a yellow plug at the end of the day. It was a short film starring Omar Sharif as a taxi driver taking a passenger to a cosmetic surgery hospital.

They passed by another major hospital that had been closed due to unfortunate circumstances, the case of unexplained deaths that damaged the reputation of a once renowned establishment. People in intensive care were dying overnight and some night doctors were about to be charged, being suspected of murder.

Eventually, they installed video cameras in the intensive care wards and it transpired that at 1:00AM the cleaning lady when into the room with her vacuum cleaner and simply pulled the plug of the life support machine to gain a socket to plug in her vacuum cleaner. The horror!

Hospitals now have tamper-proof plugs for critical equipment or red notices posted that such equipment should never be disconnected.

I left in high spirits after being told again that my liver looks fine, but I will get the full detail from my consultant when we meet at the end of next month. I was home just before noon.

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.

Nigeria: Between regulatory sanction and redress

A clash of egos

I have quietly but studiously observed stock market and banking events in Nigeria over the past few months exercising considerable restraint, avoiding comment for as long as I can.

However, what I write about today requires commentary and should elicit serious concern within the business community in Nigeria and other commercial interests that do business in Nigeria.

There has been an enduring tussle [1] between business moguls Aliko Dangote and Femi Otedola which resulted in a number of suits, allegations and investigations. One can view this as a clash of egos where the consequences would be grave on the bystanders.

Of proxies and manipulation

Aliko Dangote had allegedly employed a proxy Nova Finance & Securities Limited and its principal Eugene Anenih to manipulate illegally the shares of African Petroleum Plc of which Femi Otedola is the majority shareholder.

The allegation was reported to the Nigerian Security and Exchange Commission (SEC) that found against the proxy and exculpated Aliko Dangote.

In their findings and judgement, Nova Securities was barred for one year from capital market activities and fined; the principal was barred for five years, fined and referred to the Economic and Financial Crimes Commission (EFCC).

This all seemed above board, but the alleged proxy took his case to the Investments and Securities Tribunal where the aggrieved as a result of SEC sanctions can seek redress.

Redress addresses and acquits

What is so worrisome as reported by Next Newspapers [2] is that the tribunal found completely in favour of the proxy plaintiff and it makes one wonder how the SEC could have gotten it so spectacularly wrong that all its sanctions might well be reversed and they might also have to pay a hefty compensation for the loss of business and besmirching of the name of the proxy.

The job of regulation is definitely not an easy one, it is almost forgivable if the SEC was caught napping on the job, but to have engaged and investigated a case and reached conclusions that found no support whatsoever in the redress process leaves much to be desired in many ways as well too many questions in the minds of the many who rely of such organisations to ensure markets operate fairly, honestly, reputably and efficiently without let or hindrance but useful oversight.

I do not know if Mr Anenih is the son of some bigwig in Nigerian politics, though that is beside the point in usually patronage-driven Ngeria; but I would proffer that he probably got caught up in a skirmish between titans and literally had his head bitten off.

The need for confidence

Interestingly, this matter has been resolved at the first rung of redress at the tribunal before it got to vegetate in the justice system where the winners are usually those with the best advocates and the means to retain them.

In all, one then wonders if the SEC is well awake to its responsibilities in being vigilant and is verifiably no respecter of persons in their investigations where the supposed proxy looks like the scapegoat. Further activity needs to be executed in determining if the share slide of African Petroleum between February and March 2009 was a result of routine market movements or the deliberate activities of a miscreant who has gotten away with a killing.

Nigeria cannot afford to have its banking and market activities in flux where regulation, investigation and sanction when subject to objective scrutiny is found to have no basis in due process and justice.

It would not remiss to require that all regulatory agencies work hard to build confidence in their activities such that the business community can boldly engage the markets and commerce for legitimate ends.

Sources

[1] Duel of the Oligarchs,Otedola Vs Dangote & the winner is….. - modernghana.com/nigeria news

[2] AP shares: "you did no wrong" tribunal tells Nova securities | 234Next.com