Thought Picnic: 13 years on antiretroviral (ARV) medication

Taking treatment for HIV/AIDS

I was put on first-line antiretroviral (ARV) drugs on this day 13 years ago, on the 9^th day of admission to the hospital, seriously ill, in pain, and after a battery of tests and biopsies. At that point, the consultants and specialists had agreed on the course of treatment to address HIV that had deteriorated into AIDS with the opportunistic infection of cancerous Kaposi’s sarcoma.

Other schedules for my treatment were being planned as I was informed the next day. I started on Kaletra (lopinavir/ritonavir) and Truvada (emtricitabine/tenofovir), two of the former and one of the latter, once daily, I tolerated them well apart from occasions of diarrhoea. Within 6 weeks of that regime, my HIV viral load had been reduced to undetectable. [Drugs.com: Drug Interactions between Kaletra and Truvada]

Changes to medication

I was kept on this medication until May 2010 which was over 3 months after my last session of chemotherapy and when literally all other medications had ceased before I was put on Atripla. Today, I am on its therapeutic equivalent as branded Atripla has been withdrawn from the market because it is no longer under patent and the demand for branded formulary has fallen with the introduction of generic alternatives.

However, the more reason for writing this blog is to indicate that the antiretroviral drugs are efficacious, they work, they considerably diminish the effects of HIV leaving you with an undetectable viral load and usually an increasing CD4 cell count that gives you the ability to fight off disease.

Healthy status and medical adherence

With an undetectable viral load, you cannot pass on HIV, which has given rise to the U=U Campaign, Undetectable = Untransmittable. People of ARVs adhering to their medication and having regular check-ups on their blood chemistry and sexual health can expect to live as normal as possible lives.

This is all possible if one is under medical supervision and no decisions are made regarding the use of medication without expert instruction, even if by some good fortune, there is some indication that HIV has been eradicated by whatever means. Your HIV consultant must have fully tested and verified that claim before you change anything regarding your medication.

For me, I am a living testimony of how medicine with expertise, the support of many, the hope that helped my faith, that HIV even when you have fully developed AIDS-defining illnesses can be brought under control with medical intervention. Once again, it is not a celebration just sharing facts about my own experiences.

Blog - Reflecting on 20 years after an HIV-positive diagnosis

Reflecting on 20 years after an HIV-positive diagnosis

 “In a perfect world, the positive would be open and the negative would be open-minded.” From a Grindr profile.

Preamble

Do not be afraid to take the test

Face up to the new reality

Avail yourself of all the help available

Do not be afraid to ask questions and seek clarification

If the medicine is not working for you, say so

It is always your body first before it is their guinea pig

It is your life, do not be ashamed of living it

Do not only survive but strive to thrive

Tell a story, your own amazing story

The day I knew

I write this today, not as a celebration, yet I am living witness to and a beneficiary of such amazing human ingenuity. Without certain advances in medicine and pharmacology, there would be nothing to celebrate.

Twenty years ago, on a cold Friday morning, I visited my local Genito-Urinary Medicine (GUM) clinic in Amsterdam, to receive confirmation that the blood test I had taken almost two weeks before had indeed tested positive for the Human Immunodeficiency Virus (HIV) and with that, alone to bear the news of my new circumstances, the 20^th of September 2002 became a date to remember.

The booklet I was given after my HIV diagnosis on 20/09/2002.

I cannot say for how long I had been infected with HIV, I had gone for a regular check-up since I was in an at-risk category and for the first time, I decided to take the HIV test, then resolved to receive and accept the result. For at other times including in the UK when I had gone for other sexual health screenings, I had either declined an HIV test or asked not to be informed of the result either way.

Medicine leads the situation

The said date comes with a medical result rather than an assumption or some premonition of my status, the science and the medicine with the essential expertise must always lead the determination and the management of any infection or disease.

Whatever the symptoms might be, until medical intervention has had its input, you do not have a diagnosis, it worries me that even as recent as 6 months ago, someone approached me to ask if his symptoms were indicative of being HIV positive just because I was also HIV positive. 

I am not a doctor, there is no way I could confirm or give any reassurances, he had to go for the test and be ready to attend to the reality of the result and the further consequences of having that possibly life-changing information.

Those that went before

How I became HIV positive is beside the point, I subscribe to the AIDS Memorial Instagram page and picture after picture speaks of the lives of people touched and lost to HIV/AIDS, amazing, talented, beautiful, extraordinary people cut down in their youth, mostly at a time when there was nothing medicine could do for them.

We celebrate them with purpose and fondness, for What Is Remembered Lives, they were people like me and literally in the same age group, I met many who passed on in the 1990s. Their experiences and lessons learnt contributed to the body of knowledge that has defined what HIV medicine has become.

Then I consider the reasons why I allowed HIV to ravage my body for 7 years before I did anything about it.

Fear

Initially, I was afraid of the truth, for if I had taken the test earlier and the result was positive, what benefits and advantages in society would I lose and how would that knowledge impact many aspects of my life? That fear is real, and it comes from an understanding of how society easily ostracises things they do not understand. Strangely, I was not afraid of dying.

Blog - In Telling: Beware of pill rumours (2022)

Stigma

When I learnt that I was HIV positive, I had to be careful with who I shared the news. The first person I told was my pastor when I returned home. When I told a friend which whom I had sexual relations going back a few years, what I got was constant abuse and vituperation, it was vicious and unrelenting, I could not tell if it was he could no longer meet me as he used to because he never once did reveal to me if he had contracted HIV along with the likelihood that I might have contracted it from him. We move.

Knowledge of what HIV was then and even now is still poor, and this is also in the LGBTQ+ community, there are many advances in medicine and drug formulary that manages this virus, but you still hear or see people use clean and by inference, you are dirty if you are HIV positive.

Worse still were people ready to use that knowledge to blackmail or threaten with exposure and harass with the law, and I have seen my share of that.

Blog - Dealing with sexuality and HIV stigma (2017)

Blog - Experience is not enough to teach you to understand things (2020)

Blog - Normalising HIV Challenge against stigma (2020)

Denial

I suppose this was my greatest undoing for when I learnt that I was HIV+, I did nothing about it, the booklet I was given along with phone numbers of doctors to contact went onto my bookshelf as I quietly contemplated what my future might be.

When people told their stories of what drugs they used and the attendant side effects, the thought that I would need to regiment my life to such strictures, privations, and suffering, did not appeal to me, I desired a more leisurely life and sought the community of similarly affected people who did not discuss it, but indulged themselves.

Blog - When I had the murderous cancer of denial (2020)

Reckoning

At the time of my diagnosis, you were not immediately put on any therapeutic treatment, certain indicators had to be met to qualify, however, by 2008, my health had begun to deteriorate so much that I seemed to ignore or just not notice what was happening. These changes were observed by those who saw me from time to time, usually from one holiday to another.

On my left sole, a patch appeared that looked like Athlete’s Foot and I treated it as such, but all fungal treatments did not alleviate the problem, it became sore and painful that I walked about with a tightly bandaged foot, still full of fear of what it might be and in denial of what it really was.

I tried everything but the medical route to address the matter to no avail, as the pain became unbearable, I made an emergency call to my doctor, as I could no longer wait for a regular appointment.

At the first sight of my foot, she immediately said, “This is serious, I need to refer you.” She dressed the fungating tumours as she made the appointment to see a specialist, the result of which was a hospital admission 6 days later with full-blown AIDS and my foot being consumed by Kaposi’s sarcoma.

Living

Once the seriousness of my situation was determined, I was admitted to the hospital on the 22^nd of September 2009 and began antiretroviral (ARV) treatment on the 30^th of September 2009. My consultant gave me a reality check. “We can treat this,” he said, “but it depends on how you tolerate the treatment, if you do, you’ll be fine, else, you probably have 5 weeks.”

I took my first course of chemotherapy on the 5^th of October 2009 and 6 subsequent courses to the 8^th of February 2010. During this course, the cancer lesions had completely healed by December and the HIV viral load was undetectable, my CD4 count which was at a nadir of 20 struggled to rise beyond 200 for years, now it is over double that.

I have taken a more studious and responsible approach to my medical situation since 2009, being quite aware of new treatments, and changes that might be beneficial and seeking the best outcomes for my wellbeing.

Beyond the medicals, I decided I would not live as if I was dying, for in whatever time I have left, I could live a fulfilling life. I have done a postgraduate course, travelled the world, fallen in love, and am planning a new chapter in life.

With reference to the booklet, I was given on the day of my diagnosis, on skimming through, the expected reactions after a diagnosis were denial, shame, anger, fear, sadness and depression, guilt, and confusion. I told the nurse who was crying at my plight, that this booklet is missing the most important message on such a life-changing event, the message of hope.

Before I put the booklet away, I wrote on it, HOPE, BELIEVE, LIVE and that is what I have done since then.

Gratitude

I am thankful for the grace of God that has sustained me, the love of my partner, Brian who in immeasurable ways has encouraged and buoyed me in difficult times much as we share the reward of happiness and companionship.

My best friend, Kola who never let me fall to the ground, the de Wolf family, my neighbours who were there to love and bear me up, John Coll, of blessed memory, and my ex-partners, Marc and Steven, still there with all consideration and friendship, old friends as Peter, Kayode, and Ola, new friends made who have brought new perspectives with the celebration of life, Bisi and Funmi.

My longsuffering parents, troopers and allies in ways beyond compare, my siblings all, prayerfully supplicating on my behalf, I suppose, there is a lot to celebrate about life itself. Yet, this story can never be fully told, at least not in a blog, it is just a sketch of what life has been.

References

Blog - A primer on cancer and chemotherapy (2009)

FOR AKIN - …on bravery, honesty and thriving. (2017)

Blog - How I battled HIV stigma (2021)

The Hospital blogs (September/October 2009)

In hospital to kill the pain

Golden red and painless

The looming abyss of a deep biopsy

Seeing hospital meals again

Getting off the pain train

Crutches on the drip

A relocation from the cacophony

Scuttling cancer with chemo

Nausea abates by suppository

A slumbering machine operator

Waiting for chemo

A life of cytostatic ostracism

I'm alive after my autopsy

One more night

Home - At last

Experience is not enough to teach you to understand things

Ignorance is a comfortable shelter

Experience is no guarantee of a quest for knowledge, or enlightened understanding of a situation. Nowhere is this more obvious than what I have seen of the broader gay community’s understanding of the core science and social issues pertaining to HIV/AIDS. [POZ]

Despite the public information and community activities promoted by many LGBTQ+ organisations to people, in places, and at events, the appalling ignorance of people to these issues is frightening.

Now, I do not intend to use this blog as an education aid, there is enough for people to search for and update themselves if so interested. However, I was reminded of a conversation I had years ago when someone aware of my situation treated me with disdain, disgust, and revulsion.

Quite inscrutable to understanding

It did not bother me; I have been a recipient of too many negative attitudes to be concerned about the chance encounters. What surprised me was when this same person years after the first brush informed me his parents have been HIV+ for over 20 years.

I held myself back from saying, how can you have this disease embedded in your family and then treat others badly? I could not understand how he until recently had not acquired knowledge or insight to interact with others with a sense of humanity. The absence of curiosity that belied the original conversation was baffling in the light of the shared experience.

It might well be that seeing his parents who he says are thriving today, on their antiretroviral (ARV) medications and in rude health, there were times in the past when they were poorly and ill, that witnessing those times had mentally scarred him. I did not probe any further, I was just weakened by the thought that experience is no impetus for understanding the ‘how is’ or ‘why is’ of anything.

Mind your language

There needs to be something else, an ingredient of curiosity and determination to learn and appreciate things. There are some many things to understand, the vagaries of prevention (PrEP), exposure (PEP), testing, viral load, CD4 counts, and social campaigns on U=U.

Fundamentally, there is also the matter of language and stigma, people with HIV are not dirty and conversely, not knowing your status if you are sexually active does not make you clean. Whatever your preferences, the greatest thing you can do for human dignity is to treat everyone with consideration, courtesy, and respect. Education is a good thing, with your learning, seek to understand the seemingly difficult and taboo things. [Counselling Today]

Blog - Dealing with sexuality and HIV stigma

Courtesy of the Stigma Project.

World AIDS Day 2017

It’s strange, I’m in a different place,
As if I had run a really hard race,
In all the sweat and toil, I found grace,
No plans I made could ever retrace,
The steps that brought me to this place.

In the days and times of great pain,
Before my eyes, it laid so plain,
That the things I had worked hard to gain,
Were nothing if this scourge left me slain,
I learnt many lessons on the power of pain.

We who live as it courses through our veins,
And stand as beacons to hope that reigns,
With our HIV we run knowledge campaigns,
That AIDS and stigma won’t keep us in chains,
To know for sure, do take a prick to the veins.

With condoms maybe you’re protected,
Without it, know the risk of getting infected,
I take my ARVs as the doctor intended,
By PrEP or that, we know life is extended,
On being undetectable, we’re all protected.

The story that weaves a curtain of loss,
It was a death sentence not giving a toss,
Our knowns and holds beyond it cross,
Every World AIDS Day is not a gloss,
But one to give meaning and purpose to our loss.

Remembering Fela (1938 - 1997) through our shared history of AIDS

Remembering Fela

When I heard that Fela Anikulapo Kuti had died on the 2^nd of August 1997, 20 years ago, I was very sad and I mourned him. He was the outlier, labelled the outcast who outed the potentates and powerful in their abuse of power and privilege.

His shrine was hardly a mile from Yaba College of Technology where I was a student from 1982 to 1985. There was an elite fraternity that invited him to perform on the grounds of the school and we the poor students had to find sneaky ways to view his performance from outside the barricades.

I suppose others will write about Fela’s life, his politics, his beliefs and ideology along with his activism, I would write here about a shared affliction.

Lesions and pain

On the day after Fela died, his brother, Professor Olikoye Ransome-Kuti announced that he had died from complications due to AIDS, further commentary suggests he had Kaposi's Sarcoma which is a form of cancer and the other parts of that commentary that indicated how he suffered might well prove that is what killed him.

On the 22^nd of September 2009, a little over 12 years later, I was admitted to hospital after a desperate visit to my doctor a few days before, when she saw the lesions on the soles of my feet and decided they looked serious, very serious indeed that she had to refer me twice.

What became lesions, started some months earlier as common Athlete’s foot until my self-medication attempts did not see it off before it began to seep pus and then became unbearably painful. Much as I was already aware that I was HIV positive, I was not on medication and to everyone around me but myself, my health was deteriorating and failing without me paying much heed.

Full-blown AIDS

When I did make it to hospital, and the first checks indicated the lesions were not related to diabetes, I was put on strong antibiotics which from my research suggested they were to attack fungating tumours, that was the first confirmation that I had fearfully thought was the case some weeks before, I had a cancer, but I did not know its name.

I will not be surprised if Fela also found himself in the same situation, in excruciating pain, the tell-tale lesions hidden from view, for usually, Kaposi’s Sarcoma can show on the face, in the mouth, or anywhere on the body, mine was on the soles of my feet, and so, it only made them quite painful to walk on.

After a few days, the antibiotics failed, I was running a temperature and some deep biopsies were ordered, 9 injections of lidocaine after, the pain was just as demanding of attention and reaction, I folded a piece of tissue paper into a thick mouth guard and bit on it as the doctor poked into the heart of the lesions.

The results came back a week later, I had Kaposi’s Sarcoma as a result of having succumbed to full-blown AIDS, I was dying.

Endure or die

My consultant came to chat to me and said, “We can treat this, it depends on how your body takes the treatment, if it takes, you’ll be fine, else you probably have five weeks to live.”

In a strange land, amongst people of a different tongue apart from friends and neighbours who became my support network, I had no closer relation to turn to as the gravity of my situation sank in. I was by then on antiretrovirals (ARVs) for almost a week when 5 days later I was put on a regimen of cytotoxic chemotherapy.

I was on chemotherapy for 5 months every three weeks, though, by December, all the lesions had gone, my HIV viral load was down to undetectable but the pain of cancer lingered for another two months after that.

Healthcare options and choices

I sometimes wonder if Fela ever had access to anything like the care I had, though a late diagnosis presenting AIDS, there was a lot that could be done for me once they determined what the cause was, what the lesions were and what treatment was effective against it. The cost of my treatment was also borne by insurance for there was no way I would have been able to afford the cost.

If I transposed this situation to the UK, my feeling is my doctor would have seen the lesions and adopted a wait and see attitude rather than act with urgency. I am not sure of what the options would have been in Nigeria.

Making known to the public that Fela had AIDS before he died might have sown panic in the populace apart from the stigma that comes with being HIV positive that still exists today.

Get checked, get treated

The antiretrovirals of 1997 might not have given much respite to Fela as he succumbed to AIDS, however, if anything can be learnt from Fela’s and my situation, it is the need for regular check-ups and on diagnosis, prompt intervention for treatment before things go seriously downhill from there.

Now, antiretrovirals are quite effective and are mostly free, they give people with HIV life expectancies similar to the uninfected, the advent of Pre-Exposure Prophylaxis PrEP now reduces to a minimum the transmission of HIV for those without the virus, and studies now indicate that if your viral load is undetectable then the virus is un-transmissible. [Undetectable = Untransmittable]

In conclusion, as I remember Fela today from the perspective of our shared history, I ask that you get regular check-ups, get informed, get treatment and get on with your life. I got a second chance and I am here to share my story 8 years after AIDS and cancer.

Explainer between HIV and AIDS

AIDS is caused by HIV and it is a catch-all term for opportunistic infections that take hold when the immune system is completely compromised. A regime of antiretrovirals would give the body a fighting chance because HIV gets suppressed, the viral load goes down, the cells that can fight infection and disease gain ascendancy along with the drugs administered and you go from having full-blown AIDS to having HIV with an undetectable viral load and a chance to live again.

World AIDS Day 2014

Today is World AIDS Day 2014.

Know your bodies

The stats may not be fully known, but the estimates are in the millions of those who have gone by reason of AIDS. Big names, somebodies, 'any bodies', nobodies, the first two probably knowing and finding some respite maybe in medicine to arrest the rampaging HIV that presents AIDS.

The 'any bodies' are those who probably do not know that they have HIV and might well learn that they have it when they have developed AIDS. Yet not all hope is lost, people with medical intervention have come back from the life-threatening claws of AIDS to live lives just affected by HIV.

The nobodies however are those who have despite knowledge of their conditions neither have access to treatments, monitoring or drugs to arrest HIV and eventually succumb to AIDS.

Knowledge is progress

My view of the World AIDS Day is for the 'any bodies' and nobodies to become somebodies, people who know their status because they have access to be tested regularly. Who when tested have the counselling and information to make informed choices and if found to be HIV positive have access to medical expertise and drugs to live productive lives.

Being infected with HIV does not have to be a life sentence, it is a manageable condition with easy to use medication and a wealth of support and expertise that means no one has to suffer alone.

Beyond this, we need to move beyond the stigma of HIV and AIDS. All sorts of circumstances might have brought on the disease by commission, omission, happenstance or accident, there is no need to be judged or be judgemental.

Knowing the truth

We also need to move the management of HIV/AIDS out of the domain of desperation where charlatans, snake-oil merchants and so-called faith healers prey on the vulnerable for profit and fame.

HIV/AIDS is a medical condition, first and foremost; any assumed or considered change to that condition must always be assessed fully from a medical perspective. This is regardless of whether the person believes they are healed or they believe progression of the disease has been halted.

It is pertinent that HIV/AIDS remains under the supervision of qualified medical personnel.

Know your life

And so, on this World AIDS Day, this is what I advise.

• ·         Know your status and renew this knowledge at least every year. Get TESTED regardless.
• ·         If your status indicates being HIV positive, seek immediate medical intervention, you might be put on ARVs and these drugs are usually free.
• ·         Do not for the fear of the knowledge of your status allow HIV to waste you away, there is abundant help for you to have a useful life.
• ·         If you have exposed yourself in unsafe activity, enquire if you can have access to PrEP, this like the morning after pill.
• ·         We are all sexual beings, it is a natural human need. Do not be embarrassed about your sexual life that you deny yourself opportunities to live longer after you have discovered you have a sexually transmitted infection, no matter how minor it looks, seek help and remedy.
• ·         Learn more about HIV/AIDS and know how to keep your health and yourself safe.

The AIDS Ribbon is courtesy of PhotoBucket

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.

Blog - Nigeria: These Sub-Standard ARV Drugs are Completely Unacceptable

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

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.

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

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

Europe: HIV Testing Week - Get Tested

Some important links

The First European HIV Testing Week – 22^nd of November – 29^th of November, 2013.

HIV Testing Information – Avert.org

Why test – European HIV Testing Week

Management of HIV/AIDS – Wikipedia

Summary of new recommendations for the management of HIV/AIDS – WHO [PDF]

We love sex

There are some facts we need to get out of the way from the onset.

We are sexual beings; we are programmed to desire and find some satisfaction with sex.

Whether sex leads to procreation or is used for pleasure, practiced in search of a thrill or done to fulfil fantasies, sex or the lack of it defines a quadrant of our lives.

We have as human beings adopted higher moral and social values concerning sex to first establish consent, per adventure, maybe even a relationship regardless of the pairing of genders to express ourselves sexually.

Our weaknesses

Much as we strive to maintain norms, we have foibles or weaknesses driven by sexual appetite, some that we curtail, and others to which we yield.

We love or we lust, we are faithful or we cheat, we abstain, or we indulge; it is very easy to find aversion to sex or the fondness for sex defining what we believe and do.

That is why sexual health is of the paramount importance regardless of how we find or ignore sexual expression.

It is for that reason that we have the first European HIV Testing Week from the 22nd of November until the 29th of November.

The world is wild our there

For whether we trust ourselves or lay that responsibility on others, we know where we have been imperfect and inadvertently taken risks in search of many things including thrills.

Unsafe sex giving more feeling and heightened excitement, that chance encounter in a nondescript place with a stranger, being on the down-low because low down it is just so good.

The other day, your prudish reserve got a swerve, your saintly halo gave way to regret, guilt and remorse, you swore and vowed, yet found yourself still where you thought you had forsaken.

Inhibitions that lost their moorings in a moment of crazy and wanton abandon, decidedly or involuntarily.

Maybe none of this resonates but if you do have sex and you can only vouch for what you do, your trust in others is no defence for exposure you open yourself to when you find a willing partner.

Test to know

Testing brings many benefits, knowledge of what your status is with the peace of mind that comes with being told you are fine or the early detection allowing for prompt intervention and favourable outcomes for your health and wellbeing. (Avert.org)

Having HIV is no more the death sentence it once was if it is put under management with medical expertise and antiretrovirals (ARVs). The medicines are efficacious and potent, this matter is not one to procrastinate such that the virus ravages the body to the point that complications result in AIDS as the body yields to opportunistic infections bringing the threat of death.

Get your test done, now

All this avoidable with knowledge garnered from testing and using the free services for diagnosis, treatment, medication, therapy and support networks.

The at-risk groups identified in need of urgent action are men who have sex with men (MSM), migrant populations and ethnic minorities.

Living in Europe we cannot afford to be ignorant of what the options are for controlling and managing the HIV epidemic starting with ourselves, and that is why you should schedule a test today.

Thank you.

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.