How We Should Be Discussing HIV in Sierra Leone

In 2014, I lost my friend to AIDS.  AIDS is a set of symptoms and illnesses that develop as a result of an advanced HIV infection which has destroyed the immune system. I remember vividly walking into a large grey room at the back of Connaught hospital to find my friend’s single bed in the corner as dim light filtered into the room. I walked over, sat on their bedside and smiled. We stared at each other knowing we had to savor these last moments together. I was frustrated and angry, wishing my friend had disclosed their status to me earlier, I would have encouraged my friend to get treatment and possibly, they would still be alive today.  Yet, I knew it wasn’t about me nor what I could have done. I knew my friend felt ashamed. Shame was what inhibited their choice to seek help. All I could do as my friend slowly passed away, was to reflect my love for them, to remind them that they didn’t have to feel anything less than human dignity, the same that we all share. It is in the memory of my friend and the fullness of their humanity that I write this blog. 

HOW WE TALK ABOUT HIV MATTERS: I grew up in Zambia in the late eighties/early nineties as my father moved all of us to a small village in the south-east region of the country. He was a young aid worker and we were living in both exciting and devastating times in Southern Africa. It was the golden era of Zimbabwe, economically flourishing and weekends were best spent in Harare. South Africa had just seen the release of Nelson Mandela from prison and his ascent to the Presidency a couple of years later. Pan-Africanism was on a high in our home, and yet as a continent, we were about to face our biggest borderless war yet – the rapid rise and devastation of HIV. I witnessed the havoc caused by the disease at a very early age, as people living in this small village in Zambia, including my home-school teacher, silently passed away. My parents were losing friends faster than they could count. I remember my father being very adamant that it was fear and closely held cultural beliefs that perpetuated the disease. To be honest, my father blamed the Pope whose refusal to encourage the use of condoms, in communities that were deeply religious, resulted in fueling the rise of HIV. Both my parents always supported their friends with compassion. At funerals, my parents contributed what little they had. I saw how respectful they were even though I didn’t fully understand the depth of the disease nor its worse offense yet, the narrative stigma and shame it brought to communities and families. 

This is why I worry about the recent news making rounds in our Sierra Leonean community on the rise of HIV/AIDs, especially when the information is often not explained properly or flat out incorrect. I see people sharing, re-sharing and exclaiming HIV/AIDs is REAL!  Life is real, as are its complications and its solutions. I am flippant here only because I truly detest the phrase, it never does justice to the complexity and nuance required of any issue it is applied to. An example of its vapid use was in the early days of Ebola. But, I digress. I worry because we are conflating HIV and AIDS. HIV being the virus, and AIDS a set of symptoms caused by the HIV virus - 'a person is said to have AIDS when their immune system is too weak to fight off infection, and they develop certain defining symptoms and illnesses'. This is the last stage of HIV, when the infection is very advanced, and if left untreated will lead to death.

GETTING THE INFORMATION RIGHT: If the purpose of re-sharing new figures on HIV/AIDs is to encourage us all to have better testing health practices, or to advocate for accessible, affordable, reliable and good quality health care, I would find this much more inspiring. Instead it feels like fear-mongering especially when articles with misleading headlines like this, “In Sierra Leone 1.5 Million people are affected with HIV/AIDS” are released. When it reads “affected with HIV/AIDS”, we have to ask if it is meant to read ‘affected by’ HIV/AIDS which would include people living with HIV and our communities at large, or did they mean ‘infected with’. In actuality, what I think the article is trying to highlight and rightly so, is that Sierra Leone’s prevalence rate is at 1.5%. Here is a GOOD  article that addresses this. Let me explain. When we speak of the incidence of HIV, it means the number of new infections.  While prevalence (which the article may be referring to), is the number of existing cases.  So, when the data reads Sierra Leone has a 1.5% HIV prevalence rate, it means that 1.5% of the population has the virus in them. When you see an incidence of 4 per 1000 population, it means out of 1000 people, 4 people were infected with HIV in a given time period (usually a year). 

The confusion arises when people want to see both incidence and prevalence numbers go down quickly; this is incorrect. Incidence going down is what we want to achieve, remember incidence is the number of new infections within a given time. A decrease in incidence means that prevention methods are working; including treatment of people living with HIV in order to keep their viral load (amount of HIV) low and/or undetectable and thus un-transmittable. For us to achieve this we must tackle the issue both at a social and institutional level, meaning really address harmful social norms that contribute to stigma and fear, as well as strengthening our health care system, from detection, to counselling to consistently receiving and taking medication. We need to encourage safe sex practices, clean-needle usage among many other social interventions. Personally, I would like to stop hearing about friends who have friends who are doctors who go about disclosing people’s status’. Lack of confidentiality is what keeps many from seeking and continuing treatment. 

In terms of prevalence numbers, prevalence meaning the number of people already living with HIV, when the numbers suddenly drop it could mean that people with HIV have had the disease evolve to AIDS, and are dying from it. This actually means that our social and health care structures are failing our people. For example, the nationwide shutdown of health centers during the recent Ebola crisis led to a 25% decrease of people living with HIV accessing their medication, which is arguably a contributing factor to the increasing AIDS related deaths we see today. The road to recovery post-Ebola is a long and arduous one and I suspect we’ll continue to see the effects of its aftermath for years to come.    

In a country like ours, where poverty is a finger-touch away, everyone must see themselves as interconnected fibers in an expansive fabric of structural poverty. What may not infect us at an individual level, affects us as a collective. How we talk about diseases such as HIV and AIDs, that have a long and turbulent history of socially disrupting and dividing communities, has the ability to perpetuate greater stigma and discrimination against not only people living with HIV, but also vulnerable populations like sex workers, men who have sex with men, people who inject drugs and adolescent girls and young women – particularly those who are married/having sex with older men. 

THE GENDER DYNAMICS: I encourage all of us to take our health more seriously, HIV like Ebola or Hepatitis B or C, is indifferent to tribal affiliation, gender, class and age. It does not discriminate; a set of complex social and medical factors do. When I lived in Freetown, I would go to Marie-Stopes to get tested about every six-months, for everything. I have had such pleasant experiences there. Regular testing is particularly important for girls and women because HIV disproportionately affects women and adolescent girls due to unequal cultural, social and economic status in society. You can read more about the inequities that contribute to making women, and especially adolescent girls, particularly vulnerable to HIV. These structural, economic and cultural inequities perpetuate power imbalances between the sexes making it difficult for women and adolescent girls (ages 13-19) to not only negotiate safe sex or access health care services, but also break the cycle of intimate partner violence (IPV) that many are exposed to.  For example, in West and Central Africa, 64% of new HIV infections among young people in 2015 occurred among young women. 

WHAT YOU CAN DO: For more information about HIV/AIDS statistics please go to the UNAIDS country profile for Sierra Leone. I urge you to learn more about PrEP, which stands for pre-exposure prophylaxis. It is a daily pill that can help prevent HIV. If you don’t have HIV, taking PrEP everyday can lower your chances of getting HIV from sex by more than 90%. It is now commonly available in most countries; hopefully in Salone too; and is especially useful for at risk communities. If we don’t have it, we should be advocating for it.

Demanding access to quality health care for everyone is crucial to our collective wellbeing, it is a right worth fighting for. A right that every single person in our country is entitled to regardless of class, gender, sex, religious affiliation and so forth. It is within a rights-based framework that I hope we speak, discuss, share information and advocate for more robust HIV data, prevention and treatment opportunities. If for nothing else, but for the sake of people like my friend who passed away in silence and shame, and because we are committed to building strong health care systems nationwide - for our collective good. 

Edited By: Edwina Manyeh