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Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts

Friday, 17 April 2026

Men's things XXXII: For the Boys in the Room: Why Your PSA Matters

Life After Radiotherapy

Much as I have not been giving frequent updates about life after prostate cancer radiotherapy treatment, I can say that life continues with gratitude.

The usual side effects persist; the urinary symptoms are not as concerning and remain quite manageable, there is no discernible bowel issue, and weekday nocturnal insomnia gets some respite with weekend lie-ins.

My voice still vacillates between a weak, hoarse whisper and the normal timbre I am known to have. It does need checking out. When my mother first heard the weaker end of my vocal spectrum, she started casting and binding in the name of Jesus on the phone, with no exchange of pleasantries; it literally freaked me out.

Monitoring My Progress

I have a biannual consultation at the Christie Hospital with an Oncology and Urology nurse, as part of the aftercare monitoring, which may continue for another couple of years. This means that within two weeks of that appointment, I must obtain a Prostate-Specific Antigen (PSA) test, usually from my GP.

My most recent PSA level has now fallen to the lowest reading recorded since that first test in February 2024, which began the journey to an aggressive prostate cancer diagnosis.

I have written quite a bit about what this has involved, but may I suggest that you also listen to the AI Podcast for November 2025, where each of the terms related to a prostate cancer diagnosis is explained in detail.

An AI discussion podcast
on blogs published in November 2025
Reflections on Health, Heritage, and Humanity

Sharing the Good News

Meanwhile, I am doing fine, happy with the progress and thankful for the support and encouragement I get from my partner, Brian, my friends, and my colleagues. Upon receiving the result, I posted a comment in a wider Microsoft Teams chat, where I addressed them thus, with a link for them to assess their prostate cancer risk:

For the boys in the room.

I got some good news earlier today. Having undergone prostate cancer radiotherapy treatment about 18 months ago, my PSA is now the lowest it has ever been. Obviously, there is a hospital visit to review the situation.

Please, take some time to check your risk.

Thanks

Check your risk in 30 seconds | Prostate Cancer UK

Take That First Test

I take every opportunity to advocate for checking your prostate cancer health and going for at least that very first PSA test.

Beyond that, I try to address the concerns and fears that attend having your delicate bits inspected by medical personnel, as I have been through the whole gamut of touches and feel-ups. My verdict: nothing to fear and everything to gain, catching issues early and dealing with them promptly.

I hope you all find this helpful. Until the next update on men's things.

Blog - Men's things XXXI: Can Intimacy Be Reclaimed After Prostate Cancer?

Blog - Photons on the Prostate - Three Things I Wish I'd Known

Blog – Photons on the Prostate - A year from starting radiotherapy

Blog - A prostate cancer diagnosis, one year on

Blog - Men's things - Prostate Cancer blogs

A Google NotebookLM AI Podcast on this blog

Sunday, 18 January 2026

Thought Picnic: When Support Becomes Self-Insertion

A Childhood Memory

It was July 1977. My father had lost his great-aunt, the wife of my great-grandmother's younger brother. From letters he and his great-uncle exchanged in the 1960s, I could see this man had been a highly respected mentor and confidante. The funeral would take place in our hometown, and we would all attend.

At the graveside, as the priest finished the oblations of dust to dust and ashes to ashes, we all proceeded to sprinkle earth on her coffin. At that moment, I became inconsolably distraught. I began bawling and weeping, overcome with grief. I literally became a distraction. Even as we left the graveside, people continued to console me.

One thing I noted about that day was that no one else, not even the grandchildren, put up such a performance. I was genuinely affected, but others might have wondered why I was weeping more than the directly bereaved.

Learning to Respond

Understanding how to respond to human misery is essential in ways that may not be easily understood. We often mistake our kind of engagement as sharing in the burden of others' misery when it is not.

This became quite apparent to me after my first encounter with cancer. Before that, I had neither the understanding nor the frame of reference to appreciate what people were going through. I could offer a sense of concern, perhaps a lot of sympathy, and possibly some empathy.

On occasion, I have inserted myself into another's misery by narrating my own tale of woe instead of listening to them and offering both comfort and succour.

Nowadays, my experience of cancer, its mental toll, pain, and other life issues makes me knowledgeable enough. Yet I would never suggest to someone in that situation that I know what they are going through, even when I understand their predicament based on what I have experienced.

Finding the Balance

Fundamentally, what is important is not being more affected than those who are truly affected, more distressed than those genuinely distressed, or becoming too ingrained in a situation to which we have no direct connection or relationship. We need to be aware of the degree of affinity, determined from intimate to acquaintance, and further to belonging, whether in a community or through some other sense of identification.

Then again, there is a place for activism on behalf of others. Causes with which we identify can benefit ourselves and others, addressing issues like disengaged officialdom, injustices, advocacy, and knowledge sharing, as I do when informing others about prostate cancer.

However, my prostate cancer awareness activity does not become one where I begin to bear the prostate cancer risk of others. That is not helpful to anyone, and that is the broader lesson: be conversant without becoming absorbed, be understanding without becoming overbearing, and beware of inserting yourself into an issue so completely that you become the issue through how you express yourself about matters for which you have deep feelings.

A Google NotebookLM AI Podcast on this blog

Sunday, 30 November 2025

Men's things XXVIII: Shame, no national prostate cancer screening

An Unexpected Conclusion

I catch up on the news through the refined medium of chat shows, so I was unaware of the day's developments when my friend called to get an opinion. It was the news that national prostate cancer screening has not been recommended for men in the UK.

Whilst I am disappointed by the development, the science and research might suggest it could cause more harm; men could be diagnosed and overtreated for something benign. Because the usual growth rates for prostate cancer are quite long-term, stretching into more than a decade, immediate intervention is not always needed.

I appreciate all those arguments, but I can only share my own experience.

Pushing for Action

Firstly, the decision to get a PSA test was primarily at my own instigation and insistence. My GP had blood test results suggesting I had an anaemic deficiency for over two months, and did nothing about it until I asked why a reading was off the scale. During that investigation, I tacked on the PSA test.

As a black man aged 58, I fell into the cohort of those who could be affected by prostate cancer. Then my father indicated that he had it too, though I could not conclusively ascertain the facts.

The urinary symptoms of incomplete emptying or urgency I had attributed to the expected rather than the unusual. I was not expecting anything untoward.

Towards a Cancer Diagnosis

In early February 2024, the PSA reading was borderline on the high side of the normal range at 3.5 ng/ml. The other issue was that I had folic acid deficiency anaemia. I got a prescription for folic acid supplements and returned for another blood test at the end of March 2024.

By then, my folic acid levels had fallen outside the normal range, but the more concerning issue was the PSA at 4.0 ng/ml over the course of seven weeks.

The doctor then took the initiative to invite me to discuss this reading and conducted a digital rectal examination (DRE). His conclusion was an enlarged prostate gland with no nodules, but we needed to determine why.

This led to a referral to a hospital urology department, which, within weeks, scheduled a multiparametric MRI (mpMRI) scan at the end of April.

Challenging the Orthodoxy

At which point, I was reading up about tests, results, and indicators in the diagnostic path for prostate cancer. I then got an appointment with the urology department to discuss the MRI scan results.

We had barely exchanged greetings when the specialist literally blurted out, "We need to do a biopsy." No assessment, review, or discussion before telling me that. I pushed back and asked what the reasons were behind the decision, as the whole thing was both shocking and a surprise. The specialist would win no prizes for bedside manner.

Along with the many questions I asked, the answer that made me acquiesce was when he told me the PIRADS score was 4.

That result meant there was something concerning that had to be checked. There was no comfort with the ultrasound-guided transperineal biopsy of the prostate; even the lidocaine injections were painful, but I braced myself.

Cancer of the Prostate Gland

I had an appointment to review the results in mid-June. But my medical data in another hospital was merged into another assessment in early June, and there I learnt of the diagnosis of adenocarcinoma of the prostate gland.

When I met the urologist at the urology department, I told him I already knew, and we should cut to the chase. It was Stage 2 cancer, a Gleason score of 7 (represented as 3+4), contained in the prostate gland, and immediate treatment was recommended. I opted for radiotherapy.

In the process, I consulted with Prostate Cancer UK. I realised I could only be put on the longer hypofractionated radiotherapy over 20 working days, as my prostate was too enlarged for surgery to consider what could be saved of any sexual function, and brachytherapy could lead to serious complications.

You Always Excise the Cancer

Prostate Cancer UK felt I should have opted for active surveillance, but I had come so far in the medical analysis to back out. Apart from the fact that, besides the recommendation to treat it, I was not going to endure the presence of cancer in my body, waiting to see what it might do in years or decades.

Whilst the side effects were close to debilitating, they were manageable with good advice from the cancer health nurse consultant that my company recommended as I began treatment.

As prostate cancer leads the cause of deaths from cancer in men in the UK, and it impacts black men twice as much, the decision not to recommend national screening is quite unfortunate.

Get Screened and Scream Too

Even those with the BRCA gene mutation that suggests greater susceptibility to cancer will not find that out unless they are screened for it, probably in a separate medical checkup.

Reviewing all my medical notes, I cannot find any indication of any BRCA1 or BRCA2 gene mutation, and yet I have had two episodes of cancer malignancy in the space of 15 years.

Obviously, it means men must have a voice in their individual medical situations and advocate for the necessary interventions towards the best outcomes.

From my perspective, every time I have a platform to speak about men's health, I will say: if you're a black man over 45, you need to get the PSA test and go the full course until you are satisfied everything is fine.

Then, if anyone in your family (and that is mother, father, sister, or brother) has had cancer, get checked too. Demand to be seen as a person before you become a statistic.

Putting your health first, above any cultural, societal, or personal embarrassment, is paramount. Prostate cancer is treatable, especially when caught early. The lack of a national screening programme does not make it less incumbent on every man to step up and be part of ensuring that prostate cancer is no longer the biggest cause of cancer deaths in men.

Thank you.

BBC News: Streeting 'examining evidence' after experts advise against prostate cancer screening for most men

References

Blog - Photons on the Prostate - A year from starting radiotherapy

Blog - A prostate cancer diagnosis, one year on

Blog - Photons on the Prostate - XVIV - I Just Can't Wait

Blog - Men's things XXVII: The inconvenience of incontinence

Blog - Men's things - Prostate Cancer blogs

Key

The PSA unit ng/ml is nanograms per millilitre.

Monday, 10 March 2025

The Slave Bible - A Closer Look

Another look at the Slave Bible

In my original blog about the Slave Bible yesterday, I expressed muted outrage at the role of the Anglican Bishop of London and his involvement in commissioning the book. Beilby Porteus, the Bishop of London from 1787 to his death in 1809 was a rather different person than I portrayed in my first assessment of the situation.

Blog - The Slave Bible

History would suggest, the bishop was the first in authority to challenge the Anglican Church’s stance on slavery in a concerted campaign that lasted almost three decades. He was an abolitionist who stated his case in sermons and in the House of Lords, long before the cause became popular.

The bishop was an abolitionist

In his advocacy, he was concerned about the plight of about 300 slaves on the Codrington Plantations in Barbados that was bequeathed to the Church of England in the early 18th Century and was overseen by the Archbishop of Canterbury and a committee of Church of England bishops.

From the time he was Bishop of Chester through when he was translated to the bishopric of London, Bishop Porteus worked with slavery abolitionists, and much was made of the fact that disease and maltreatment led to the death of about 40% of the slaves within three years of their arrival that the slave cohort needed constant replenishment from West Africa.

Besides these myriad issues, the bishop was desirous of proselytising the slaves and this must have informed his decision to commission an abridged bible for the slaves of the British West-Indies, as one of the most passionate advocates for the cause of the slaves, he by default assumed responsibility for their spiritual welfare. I can conclude from this reading of history that Bishop Beilby Porteus was neither malevolent nor evil.

Between the marketing and the product

A careful reading of what pertains to the content of the Slave Bible requires nuance over the sensational reductive view that essential parts of bible history were expunged. We can attribute this view to the publicity machinery of The Museum of the Bible (MOTB), which has had its share of controversy and scandal in terms of the provenance and integrity of exhibit acquired for display at the museum.

An academic assessment of the assertion of the MOTB would suggest a variance from the reality. The writer purports an exaggeration by the MOTB when in fact the book does contain verses of liberation as much as some pertaining to slavery were left out. Though the compendium leaves out the book of Revelation, it is not bereft of eschatological hope expressed in other epistles of Apostle Paul. [The Revealer: The “Slave Bible” is Not What You Think]

It would appear Bishop Porteus is both misrepresented and vilified by the MOTB to whatever ends of widening the participation of visitors to the museum beyond its evangelical roots. As I can only offer commentary on the reported events and observations along with not having access to the said Slave Bible to verify any of the claims, my only shocking discovery is to learn that such a book existed, the circumstances around which the book was published are quite different and open to debate.

Where history leaves us

It is obvious from the onset that the bishop met with both deaf ears and opposition to his abolition quest, as Founder of the Society for the Conversion and Religious Instruction and Education of the Negro Slaves, “envisioned a collection that expanded beyond biblical texts and included liturgy for public worship.” It is questionable whether the result achieved that aim.

However, while certain abridged versions of the bible available today as excerpts of the Psalms, Proverbs, or mainly the New Testament of the Gideon bibles found in the bedroom drawers of international hotel chains have not suffered the manipulation and cannibalisation of the Slave Bible, the motive in its origin seems both honest and malign to our reading today.

What cannot be disputed is the Anglican Church of England was integral, participatory, and a beneficiary of the evils of the slave trade and slavery. 

Saturday, 14 April 2018

ACT UP brought the focus back to the urgency for human lives

[]
Setting the scene
I was all emotional when I left the cinema on Monday having gone to watch a film titled 120 BPM (Beats per Minute) [French with English subtitles] that was brought to my notice by my friend.
It was a historical perspective of ACT UP Paris in the early 1990s created along the lines of the direct-action advocacy group ACT UP in the United States.
To the many of us who live with HIV or have had the amazing turn-around from full-blown AIDS, we owe the greatest depth of gratitude to the people who initiated the ideas behind starting the AIDS Coalition to Unleash Power (ACT UP) and how they carried through their advocacy until governments and Big-Pharma were responsive to the plight of all afflicted by the scourge.
At the expense of the dying
From the early discovery of that disease that began to cut a swathe through first the homosexual community, then drug users and unto haemophiliacs, the governments of Ronald Reagan, Margaret Thatcher and Francois Mitterand simply ignored the fact that people were suffering and dying from this new disease.
We saw pictures of emaciated bodies, scientists were involved in a race to understand the disease and especially in the United States mostly for personal glory and national one-upmanship rather than for those who stood to benefit the most from their research efforts. The people who were dying cut down in their prime out of institutional indifference and corporate inertia, there appeared to be no urgency towards the emergency.
I could not have felt a better sense of justice when The Nobel Prize in Physiology or Medicine 2008 honoured the French side of the research efforts and spurned the American side of the battle. Some of the people were playing with lives that were precariously at the precipice of total annihilation through AIDS.
Dragging their feet as people died
It was in the light of this discovery and understanding of the virus that pharmaceutical companies began to work on new drugs but were holding back research results and preventing the early adoption of experimental drugs that could possibly immediately health outcomes for people who already had HIV.
This is where ACT UP’s advocacy forced the question, pushed the debate and ultimately compelled governments and institutions to not only recognise the health emergency but get engaged in eradicating AIDS.
A primer on direct action advocacy
The film centred around the debating forum of ACT UP Paris with their Chatham House type of rules of engagement, the strategies for making the headlines, the resistance they faced from the authorities and pharmaceutical companies before they could no more be ignored and the real issue itself, for all the protests and advocacy, it was essentially about real human-beings, their private fears, their public rage, the loves of their lives and the loss of many who succumbed to AIDS.
More poignantly, ACT UP in its concept and activity was a model of activism that had people normally marginalised, usually persecuted, and generally ostracised decide they had had enough of being isolated and ignored by society, maybe even criminalised by the establishment to identify with a cause for which they had nothing to lose because many in their community including themselves were dying.
It was a movement of existential urgency and by that, it brought attention, engagement and radical change to the way HIV and AIDS was tackled and managed. There is no doubt that advocacy groups like ACT UP are needed today to fight for rights and freedoms that the comfortable and unafflicted enjoy. It is to those who found the courage to upset the status quo that I dedicate this, for without you, we would not be here.
If it is the only film you watch this season, it would have been worthwhile. 120 BPM (Beats per Minute) [98% on Rotten Tomatoes]

Friday, 15 December 2017

Opinion: Caught between the hijab and the Bar

Where religion should belong
Readers of my blog would be well aware of my many writings about religious expression and even more stridently of the need to send religion back to where it belongs from its intrusive and overbearing cacophonous disturbance in the public spaces to the private contemplation of the individual, to the heart and the conscience of the adherent and to the sequestration of the temples where people of similar beliefs can fellowship without encumbrance.
I feel strongly about the need for the separation of the state and religion, that it is our humanity in the expression of kindness, understanding, empathy and compassion that should reflect the consequence of having adopted any belief system as a religion.
Understanding constitutional protections
In many countries, the constitution protects religious expression and rarely dictates how adherents should choose to practice their religion, it, however, does not give untrammelled licence to any adherent to foist their belief system on another, even if the religion so adjures its adherents to proselytise and win converts.
My concern about religious expression in the public space is deep, the reason being when tenet is taken out of the ambit of society and given to a figure representing a deity, that construct makes the tenet unquestionable, unchallengeable and unaccountable. To the extent that the adherent might believe that their interpretation of their perspective of their deity figure is subject to no temporal scrutiny with the danger that zealotry leads to extremism and worse.
Why civil law must reign supreme
As I have said before, even between adherents of the same belief system, they cannot believe to the same intensity, be persuaded to the same duty of devotion and be equally compelled to act on unction without the prism of reason. It is important that this difference in religious perspectives is accounted for in civil society and also as long as we do not live in a theocracy, civil law must reign supreme in the public space.
It is with these foregoing arguments made that I categorically state that I have no sympathy for the principal whose call to the Nigerian Bar was deferred because she chose a form of religious dress over the formal and formally prescribed dress code for the ceremony of being called to the bar.
The Samaritan’s example was hardly religious
I do not believe that the choice of apparel is necessarily the deepest expression of religion or that it overrides our core humanity which when laid bare is nothing about beliefs but that we are just human. This is the standard set by the Samaritan who saw a fellow human being in distress having been robbed, beaten and wounded by the wayside.
The Samaritan made no enquiry of the victim’s beliefs before he tended to the victim and took the victim to an inn to be cared for, paying in advance for the treatment of the stranger. It was after the story was told that the Samaritan became the Good Samaritan until then he was just an ordinary, if not bloody Samaritan.
Fighting a cause rightly
Now, the principal on the matter of being called to the Nigerian Bar had opportunity and privilege that could have been better deployed, managed towards a reasonable goal, but we must look at the landscape in question.
The Body of Benches is the association legally constituted to call qualified people to the Bar, it is their sole responsibility and it is in no way delegated. They make the rules and have both the power to honour, to sanction and to discipline those to whom they have granted to become Barrister and Solicitor of the Supreme Court of Nigeria.
There are a set of requirements in terms of qualifications and presentation that need to be met to be called to the Bar and in the ensuing ceremony, there are standards required of those so called to meet and respect. In those standards are explicitly listed dress codes that are formal, austere and broadly secular in nature. Being called to the Bar is no opportunity for conspicuous self-expression when formality and uniformity is the code.
Obviously, if any part of the code needs to be challenged, there are means by which the people concerned can bring their considerations to the organisation to which they are affiliated and through persuasion and discourse come to some agreement as to whether a change is necessary, or things should remain as they are.
Use your brains, not your brawn
In my view, the principal is schooled in the art of legal advocacy and persuasion, that skill could have been brought to bear on the matter of altering the dress code to accommodate different inclination from the norm, what an organisation like the Body of Benchers must not entertain is the precedence of people having licence without consequence to bend or break the rules because they feel so persuaded.
It would be uncharitable to opine that the principal is suddenly the most devoted of her belief system who has now received such compellingly new revelation that serves as a compulsory requirement for the Body of Benchers to supinely bow to, but that is the elephant in the room, the situation where someone has decided to challenge order with their interpretation of an unrelated belief system.
A perspective of equality before the law
If the Body of Benchers were to submit to this kind of expression without legal argument properly presented in a learned rather than in an activist zealot manner, it would create a recipe for chaos with no inclinations of what new demands might be chanced by others to put before the Body of Benchers.
Equality before the law has to mean something, just as the respect of the rules promotes that same equality. Once religious apparel is excused, what is to say the principal would not subject clients to extraneous hurdles of zealotry before representation?
There are many arguments to be made for and against this subject, a lawyer by training should make the right argument with case law, the principal was called to the Bar, but called to incite religious animus and be found at the front of a mob.
No one is stopping the principal from choosing what to wear, but when there is a dress code, that is the dress code.


Friday, 3 January 2014

Nigeria: Presumed Substandard Tyonex HIV/AIDS ARV Drugs Removed From Circulation

Click to large
I received this picture on Twitter earlier.
I am pleased to read that the concerns raised about SubStandard HIV/AIDS ARV drugs have registered with NAFDAC and they have taken appropriate action to suspend with immediate effect all the ARVs manufactured by Tyonex Nigeria Limited.
I first wrote about this in November http://goo.gl/fYINqS and then when I got hold of the said drugs in December I posted another blog and wrote to NAFDAC about the issue http://goo.gl/kQOh8t
Obviously, NGOs have been clamouring about this for months and to have a letter acting on the issue is a very successful outcome for all those whose vulnerability has somewhat been abused by failings in the drug administration system.
There is much work to be done to build on this success, it is however wonderful news.


Monday, 23 December 2013

Nigeria: These Sub-Standard ARV Drugs are Completely Unacceptable

Until now
Just over a month ago, I wrote about the issue of sub-standard anti-retro viral drugs (ARVs) in Nigeria, and when some of my friends contacted people who were supposed to be in the know about the management and distribution of ARVs in Nigeria, they appeared to pooh-pooh the idea.
The message coming back was that the complainers were not interested in using drugs manufactured in Nigeria, that they wanted foreign-sourced drugs.
Handling the ARV drugs
Well, this afternoon, I handled with my own hands the drugs, a bottle from India and Nigeria of the same formulary of ARVs (Zidovudine [AZT] 300mg, Nevirapine 200mg, Lamivudine [3TC] 150mg), but that is where the similarity ends.
It is important that we clarify that the drugs are not fake, they are sub-standard, and I would illustrate what I mean with pictures to follow.

The Indian manufactured bottle is on the left, the Nigerian manufactured bottle is on the right, and the first thing that you see is the poor quality of the labelling.

By comparison the shelf-life of the drugs is 35 months for the Indian version and 23 months for the Nigerian version – A first indication of a difference in quality or standards.
The question of Storage

The problem seems to come down to information on this part of the bottle label. The Indian version is to be stored below 30°C and protected from light and moisture, the Nigerian version should be stored in a dry place below 25°C and protected from sunlight.
A double-take to the World Bank website for the average temperature and rainfall in Nigeria  and in India for the 110 years to 2009 suggests the average temperature in Nigeria only dips below 25°C in December and January, and it has a higher average range than that of India. [World Bank Group][World Bank Group]

Besides this, whilst Nigeria does not have as much rain as the monsoons of India, the rainfall is spread across more months suggesting the climate in Nigeria is broadly humid resulting in more months of precipitation.
It goes without saying from this basic observation that the instructions on the bottle of the Nigerian manufacture ARVs must at least be the same as the ones for India – Store at below 30°C, in dry place, protected from light and moisture.
Between English and French

It is also interesting to note the difference been the English and the French instructions on the Nigerian bottle. Apart from the typographical errors where the obvious one is physician spelt as pyhsician, why Anglophones should be concerned about sunlight and the Francophones are more affected by humidity, escapes me.
A French-speaking observer of this said, “It is full of typos, and badly translated from English.” In other words, this is patently shoddy work and that is just the labels on bottles on life-saving medication.
With the permission, my French-speaking friend, reviewed the French part of the label and his comments appear below:
Chaque ma' dicament contient:
[...]
La prescription des pyhsician seulement.
Gader tout medicament hors de la portes des enfants.
Mettax su frais bas de 25°C. Protegez de l'humidite.
It is just about understandable.
It should be:
- médicament not ma'dicament
- physician, wrongly spelt is an Anglicism, in French it should read: Seulement sur prescription médicale
- gader (keep) is misspelled = garder
- la portée (reach) misspelled
- Mettax misspelled = mettre (keep/store) but should be "conserver"
- su misspelled = au (at)
- bas: poor translation of "bellow" = en-dessous
All the accents are missing and overall it say on prescription only, keep away from children store below 25°C, protect from humidity.
It does not make any reference to sunlight.
Why Tyonex could not get a French speaker in Nigeria to properly translate the English portion of the label to French escapes me. I am sure Google Translate would have done a better job. It is unprofessional, shoddy and really dampening in confidence.

Inside the bottle

Opening the bottles, the quality becomes evident, the Indian version has a desiccant, the Nigerian version does not, the tablets or caplets as the label indicates are in a cling film bag all coated with the white dusty powder of the pills.
The Indian version remains intact to the touch whilst the Nigerian version leaves a chalky residue on the fingers when touched and when held firmly between the thumb and a finger, it disintegrates as seen below.

I note that in the blog I wrote last month, this is what the AIDS Healthcare Foundation said – ‘The press release suggests the drugs “are brittle, break easily and dissolve in one's mouth before swallowing, and furthermore the package presentation is substandard, with poor labelling that resembles the work of professional counterfeit drugs peddlers.” [AIDS Healthcare Foundation]’
The standards are poor
It goes without saying that poor manufacturing standards without consideration for the socio-economic and climate conditions in which the drugs would be used can inform the rapid deterioration of the medications leading to sub-par efficaciousness of the medicines, the consequences which can be dire and life-threatening to patients who need these drugs to survive.
Even if the drugs were to be kept in a fridge, the power situation in Nigeria precludes that, it only means that standards should be significantly raised to improve the quality of these drugs, and one cannot say what other drugs are poorly packaged and distributed as these.
This ARV is Manufactured by, Divine Essential Formulations and Distributed by Tyonex Nigeria Limited at the same address in Igando, Lagos State, Nigeria. [Other Tyonex Anti-Retro Viral Drugs]
What is NAFDAC doing?
It is more shocking to read from the label that these copies of the ARV drugs are manufactured under licence from the Federal Ministry of Health in collaboration with Millennium Development Goals (MDGs) under the auspices of the MDGs 2009 Conditional Grant Scheme. [UNDP NIG (PDF)]
The label also has a NAFDAC Reg. No: A4-6854, which begs the question of what standards of inspection and quality that organisation imposes on drug manufacturing companies to ensure the general public are not put at risk.
There is every reason to believe that the manufacture of short shelf-life, poorly labelled, badly packaged and low integrity ARVs means corners have been cut in the system, somewhere between the bureaucracy and the businessmen who are probably paid to do a better job than this.
Act now!
It is the duty of everyone to ensure that the chain from sourcing of formulation through dispensing to the patient ingesting the drugs is maintained to the highest standard of manufacture and integrity for us to be confident that drugs meant to save lives are not placebo effect dummies with no efficacious value.
I also hope everyone involved including activists ensure that they are compromised and bought off by the system where the lives of ordinary people are impacted.
When I was contacted about this issue last month, the person had suffered a precipitous fall in their CD4 count to 25% of what it was 6 months before. That is just unacceptable, and it indicates a sense of urgency and an emergency that needs to be addressed with immediate alacrity.
There were no other indications in the bloods that could account for that result apart from the Nigerian manufactured ARVs, and it would appear more of the Indian manufactured ARVs are now being distributed in Nigeria.
Additional Information:
NGOs Condemn the Supply of Sub-standard ARVs at Treatment Centres in Nigeria: http://youtu.be/YO4r1sZffrM

Tuesday, 12 November 2013

Nigeria: The issue of sub-standard ARV drugs is a critical emergency

The drugs are not working
I was contacted this morning about a grave and critical issue where the person believed their life was imperilled by the use of therapeutic drugs meant to manage HIV/AIDS.
My first reaction was one of shock before I collected my thoughts to determine where I could get more information about critical pharmaceuticals in Nigeria, the management of their standards, the organisations that cater for HIV/AIDS sufferers and the supply chain that governs the acquisition and distribution of anti-retro viral drugs (ARVs).
Sub-anything is serious business
It is important that we differentiate between fake drugs which is not the issue and sub-standard drugs. Fake drugs would be the passing off of different chemical concoctions as the real medication, whilst sub-standard drugs will pertain to potency, quality, shelf-life, efficacy and utility of the medication.
These elements raise serious issues where sub-standard or possibly sub-strength drugs might well not manage the virus in the blood leading to a rapid deterioration of health presenting AIDS.
The other aspect of this is where sub-strength drugs might lead to drug-resistance if the commensurate dosage is not adjusted for potency needing the use of second-line and more expensive non-generic drugs. The environment in Nigeria will probably leave many at greater risk if their normal medications are not working and the bleeding-edge medications we have access to in the West are out of reach.
No excuses are satisfactory
The worst situation to be in is not so much to have no access to ARVs, but to be given ARVs that are effectively placebo drugs, and that is both unacceptable and a health emergency.
Now, there are organisations in Nigeria that may want to easily explain this away and link it with some social response to the provenance and pedigree of the drugs.
The “Made in Nigeria” label may not lend itself to sophisticated goods, but I doubt those on the receiving end of these life-saving treatments have carried their everyday hedonism to the level of refusing to use their drugs because they do not have designer labels.
A known problem
Searching for “Sub-standard ARVs in Nigeria” on Google, I found a YouTube video highlighting that this is an emergency and Treatment Action Movement (TAM), a coalition of HIV treatment activists across Nigeria, in collaboration with the AIDS Healthcare Foundation (AHF-Nigeria) gave a press release on the matter. [AIDS Healthcare Foundation]
The AIDS Healthcare Foundation (AHF) will probably put a few backs up with their advocacy and activism. They are more than a necessary organisation in the fight against the scourge of HIV/AIDS, the inertia of the government and other vested interests in the face of unacceptable statistics and paucity of programmes to get more people tested and treated, especially in Nigeria. [AHF - Nigeria]
Old but useful drugs
The TAM-AHF press release mentions a company but more importantly, the drugs in use are the AZT/3TC/NVP and the TDF/3TC combinations.
The WHO recommends the use the AZT/3TC/NVP combination for the treatment of Antiretroviral therapy (ART), ART-eligible pregnant women in developing countries, which also means that we cannot afford substandard drugs or episodes of recidivous decline to drug apathy for whatever reasons and the reasons appear to be many.
Besides treating HIV/AIDS patients, it is critical we prevent the transmission of the virus in-vivo to the foetus during gestation.
Really poor standard
The press release suggests the drugs “are brittle, break easily and dissolve in one's mouth before swallowing, and furthermore the package presentation is substandard, with poor labelling that resembles the work of professional counterfeit drugs peddlers.” [AIDS Healthcare Foundation]
This is just unacceptable either from the perspective of quality and quality controls to giving the HIV/AIDS patients the confidence to ingest their medication and have the medication be efficacious.
Whether binding agents or preservation agents are poor used or corners are being cut for profiteering, I expect the people who are the public faces of HIV/AIDS advocacy to be at the forefront of pushing for improved standards rather than present excuses for this seeming atrocity.
One voice for many
The person who contacted me had both the opportunity and the options; there are millions who do not have any of the opportunities and the options, that person has but they must be heard too.
It is a cause of our wider humanity beyond Nigeria and its local problems or politics to ensure that either these people have a voice. The Federal Ministry and other agencies must arrest an untenable situation by demanding better standards of drug-formulary or we have to embarrass them for unconscionably allowing avoidable deaths through the dereliction of responsibility, their diminished oversight functions and their lack of purpose towards managing the HIV/AIDS epidemic.
Once again, the issue is about sub-standard drugs and not fake drugs, it is an emergency; shoddy quality controls just would not cut it, and the raising of standards must be of the utmost urgency.
We obviously need to research this issue more to appreciate the extent to which people might be put at risk, but one person on sub-standard ARVs drugs is one too many presaging avoidable and preventable tragedy.
Thank you.


Wednesday, 14 March 2012

Opinion: Invisible Children & Joseph Kony


This is an opinion piece unlike my usual blogs, I have simply expressed a whole range of views and posted no links within the text. Thank you.
The numbers are big
Nine days on, the legendary #Kony2012 video has had over 78,000,000 views, 1,329,774 likes, 95,942 dislikes – that statistic alone shows the interest, the passion and impressions conveyed – I expect the numbers to retain this basic ratio.
Now, I will not attempt to rehash the issues here, a simple Google search will reveal opposing arguments for and against the video apart from the attacks that Invisible Children has suffered in the last week.
A striker without a team
In my view Invisible Children must feel like a striker in a home football match that got the ball, dribbled the visiting team until he was left with just the goalkeeper, kicking the ball right into the net scoring a goal.
Meanwhile, his team mates stayed on their side of field, retreating towards their own goal in disgust that the striker had scored, the prospect of winning the game being so repulsive that neither the striker nor the team could celebrate, the referee being on the verge of disallowing the goal for the fact it looked like there were three teams instead of two on the football pitch.
That is a somewhat extreme analogy but it so clearly represents the state of affairs today.
It’s not unusual
Invisible Children is an advocacy group that mainly informs and engages people in the work towards helping communities that have been destroyed by the menacing antics of Joseph Kony’s Lord’s Resistance Army (LRA).
Their fund-raising activities are not so entirely unique; for decades we have had pop concerts staged for the enjoyment and entertainment of more comfortable parts of the globe to help disadvantaged groups and countries buckling under the weight of all sorts of disasters. Tickets, T-shirts, bracelets, bangles, packs are all means of exchange with the hope that the profits will end up helping the unfortunate.
Another interesting narrative was that of the White Saviour Industrial Complex where the white man comes from afar as Messiah to helpless and hapless ethnic populations. I cannot subscribe to this notion with regards to Invisible Children, the principals could easily have been happy-go-lucky filmmakers travelling around the globe taking snapshots of poverty and suffering but they got involved, got engaged and developed strong relationships in the spirit of compassion and humanity.
It may not have been obvious to some, but the 6-year old son had knowledge though maybe not fully understanding what his father did in Africa, he recognised the people his father had brought to their home and for his little mind had a clear sense of the need for justice.
That White Saviour Crap
A better and extreme example of the White Saviour Industrial Complex is illustrated in the recent game-hunting trip of Donald Trump’s sons to Zimbabwe. Having killed a bull, an elephant and a crocodile they justified their actions by saying they donated the meat of the dead animals to apparently very grateful villagers who could be fed for up to a month.
There is no need to go into the detail of whether the locals were allowed to shoot wildlife that is under threat of extinction in their neighbourhoods but white men could come from afar shoot for thrills and rather than skin the animals for trophies, the meat is given to the hungry savage natives – even one can only be in praise of such uncommon kindness.
Making complex issues simple
Invisible Children gets accused of over-simplification, there probably is just cause in that view but this is a very complex problem and complicated problems do not get solved by relating to the problem as complex or cmplicated but by breaking the problem down into componential parts then resolving each of the simplified tasks until all the simplified tasks of that complex problem are solved, thereby, solving the problem.
In the case of the film, the complex situation had to be simplified for the consumption of a global and varied audience, situations like this will go for the lowest common denominator – simplicity – this simplicity allows for the very basic information to be conveyed and easily assimilated.
It is however incumbent on the viewer to conduct additional research if more detail is required in better understanding the problem.
As in football
Returning to football analogy, more often than not, if one has not had the opportunity to watch a match what the person needs to know is who won. One can then delve into detail as to who scored, when, how the teams played, what strategies were used, the controversies of refereeing, who the substitutes were, the number of fans in the stadium, who the commentators were and where on the league table the teams have ended up.
In other words, football is a complex interaction of commerce and sport, skill and application, conditions and aspirations, 90 minutes or more, goals, personalities, fans, moods, permutations, statistics and whatever else to raucous, volatile armchair analysis – depending on the audience you package the information to suit the ease of consumption.
Just the facts
I do not think Invisible Children is war-mongering by associating with the Ugandan army in the pursuit of Joseph Kony and the splintered remnants of the LRA scattered beyond the borders of Northern Uganda. The fact is if Joseph Kony is to be apprehended Uganda is the only country in that region with the means to go after him.
We must not forget even though there may not be recently recorded LRA atrocities that Joseph Kony is an evil man who needs to be brought to justice for his crimes against children – recruiting boys in an army with the options of death of killing one of their own and girls being co-opted into sexual slavery – there is no authority or length of time that can exculpate this absolutely rotten and despicable man.
For reconciliation
That is not to say the Ugandan regime does not have its faults, it simply calls for a kind of Truth and Reconciliation model that will allow the children who were once abused and are entering adulthood to find their places back in society as able and prosperous members of their communities and worthy ambassadors of their country against these acts. All parties involved should also be made to confess to their complicity in allowing for this untenable situation to fester for so long.
It is a hydra-headed conundrum and Invisible Children has only gone after one of the many heads, I would have hoped the momentum generated despite the other apparent failings would have had others tackle the other heads of the hydra but in ferociously attacking Invisible Children we have ended up within the context of the first football analogy of my blog.
If Invisible Children is guilty of anything, it is at worst naivety; a case of not fully understanding the problem but nevertheless doing something in the context of what they do understand and from the clamour that has ensued it has become evident that they appear to have done a lot more than those who know and understand the problem too well but have failed to act.