Living Positively with HIV for 10 Years

Transcript of a Twitter interview conducted by Elnathan John on May 7, 2014 with Bisi Alimi.

Bisi Alimi, a human rights campaigner and health advocate who rose to notoriety when he first came out as gay on NTA. He started his advocacy work at the height of the HIV epidemic within the Nigerian MSM community in the late 1990s. In 2004, Bisi’s open declaration of his sexuality, caused a turning point in the discussion on sex and sexuality in Nigeria. In July 2012, he was invited to the White House by President Obama for his work with black gay men in Europe. On May 7, 2004, Bisi was diagnosed with HIV. He continues to passionately do his advocacy work from his base in the UK. This interview marks 10 years of Bisi living ‘positively’.

I first interviewed Bisi in November 2012

 

EJ: My first question Bisi, what was your first reaction when you got the test results saying you were positive?

BA: Honestly, considering the number of friends I had lost before then, I was sure it was going to be positive. Still, I was shocked and upset when I was told I was HIV positive. It was like a big cloud of a broken dream.

EJ: Were you in Nigeria at the time?

BA: Yes I was in Nigeria. Actually I was tested at the National AIDS Conference in Abuja in 2004.

EJ: What was the climate like at the time with regard to access to HIV care? Where did you first receive treatment?

BA: You see prior to that time, I didn’t even know much about treatment at all in Nigeria. I was so naïve. Also because of the fear, shame and guilt, I didn’t even tell anyone about my status apart from people present. I was waiting to die. I had seen friends dying, so I was like, well it’s a matter of months until I am gone.

EJ: Many people link HIV to homosexuality. However health sources cite over 80% of HIV transmission from heterosexual sex. How, in your experience does ignorance about HIV affect stigma?

BA: You see the conversation that HIV is homosexual disease is right and wrong and I will try to explain. HIV as we now know it was first discovered among gay men in America in the late 1970s to early 1980s. So it was kind of okay to link the virus to that community, however further digging around found that it is not so true. Scientists had found out that a similar virus had wiped out a community in the Congo around the late 1960s to early 1970s. So then the global interest started. However depending on who is telling the story the answer is different. The good thing about ownership of the virus by the gay community is that it brings the right sentiment. I guess you can only face one stigma at a time. So they [gay people] wanted to remove the HIV stigma as a pathway. But in the context of Africa, it is a different story. Heterosexual couples are driving the virus. [About ignorance and stigma], this is multilayered. First there is the image of HIV you see on TV. You know the skull and the two bones – it is scary. Then there is the religiosity or morality around the whole sex thing. HIV is seen as being a punishment.

EJ: Would you say you have had more stigma as a gay man?

BA: Yes I have faced more challenges in life as a gay man [more] than as being HIV positive. Though it’s funny, I am more comfortable talking about my sexuality than my HIV status. I never mentioned I was living with HIV until 3 years ago. I just could not deal with another source of rejection and hatred.

EJ: Women are particularly affected by HIV in Nigeria - in 2011 an estimated 1.7 million women, a 3% prevalence rate. As an activist, what special strain do you think this puts on women in Nigeria?

BA: A lot. I am fortunate to have worked with many powerful women in the field of HIV. And these are brave women. Here are some of the challenges on women: They cannot negotiate sex so they are exposed to all form of diseases. And the women who have the gut to [try to negotiate sex] will have to deal with domestic violence every day. Then there is the shame that comes with being positive. The accusation that it is the fault of the woman. This is common in Africa where, for pregnant women, HIV is mostly diagnosed during pregnancy. So the man still doesn’t know he has it. So everyone blames the woman while the man refuses to get tested. Then comes the guilt of giving it to the baby. There is also the issue of poverty. Women are mostly poor in Africa due to the system that enriches men. I am lucky to have been one of few young Nigerians who were involved in training women on condom negotiation in the 1990s. But what is the use if a woman knows how to negotiate condom use and the husband doesn’t care? So we have a lot of work to do around this issue. A lot of work.

EJ: What do you think the impact of the anti-gay law is on HIV care and prevention in Nigeria?

BA: That’s a very good question. The gay law does no one any good at all in Nigeria and I will explain. I am not asking that the law be changed. That’s not the issue for tonight. I am educating. So 17% of gay men in Nigeria are living with HIV, that’s more than the 6% of the total population. Because of social stigma, the men are forced to marry women whom they will have sex with without condoms. A law like we have in Nigeria that is banning clinics providing HIV care for gay men is a bad law. It will drive [gay] men underground and make the fight against the virus very difficult. I am sure we know not every gay man will be as mad as me and a couple of others and be honest [about their sexuality]. I think I support banning same sex marriage in Nigeria (because no one asked for it – it is a government strategy to gain attention), but I want universal access to healthcare for all.

EJ: Nigeria has 4.1% prevalence rate and although 1.5million need to be on ARVs (anti-retroviral drugs) only 359,181 are. Do we have a crisis?

BA: Asking if we have a crisis at that rate is like asking a man whose house is on fire if he is in crisis.

EJ: You have spoken to me about the National Agency for the Control of AIDS (NACA) response to HIV. What do you think they are doing wrongly?

BA: NACA is doing a lot of things wrongly. I am sorry I think the head of NACA should leave. Yes let it be on record that I asked for sacking or resignation of Professor Idoko. He is doing more harm than good. Nigeria with its wealth, resources and people should be teaching the world how to win the war against HIV. Yes I know we are using the WHO guidelines, but access to ARVs in Nigeria is still survival of the fittest in 2014? I see Nigerian delegates at IAC and they are there to buy and sell and not learn. It’s a shame really that people are sent to these conferences not because of what they know but who they know. It’s 2014 for god’s sake.

EJ: There are biomedical breakthroughs to prevent transmission like pre-exposure prophylaxis for example. What do you think this means for HIV moving forward?

BA: I think it is part of the many options most at risk groups can take to prevent themselves. We not only have PreP we are now looking at Microbicides and many other tpes of technology that we can use. This means fewer infection rates. And we are seeing a decline in infection because more people are on treatment. So let’s put all options on the table: condoms, PreP, treatment, circumcision, Vagina rings and all. I have been on treatment for 5 years now, I am undetectable and my chances of passing on the virus are very low. These are great strides we are making. Once we join hands together to fight stigma, the battle is ours to win.

EJ: As a person living with HIV, how do you stay positive?

BA: The first thing I did was to accept the reality that I am living with the virus. I couldn’t run away anymore. The next step was that I reached out for help. I know I can’t do it alone, I need others to inspire me. Thirdly, I accepted that the only way to fight the virus is to take my pills. No short cuts. Prayers won’t help. Fourthly, I learn to live positively. I talk about it, I give it a face and support others. What we don’t know is, we get more when we give more. It’s the law of nature. I learnt to give my time and myself. I eat well. I make sure I eat good food and I rest well. I am too lazy to exercise. Lol. Finally, I think positive, it is not a joke that there is power in positive thinking. It’s true. We need to know that HIV is no more a death sentence. But we need not rest on our laurels. There is more work to be done. We can achieve an HIV/AIDS free generation if we love more, fund more, research more and show more compassion.

EJ: Does being positive affect your dating life?

BA: Yes this does affect my dating life. I am lucky to have dated HIV negative guys all my life. But gosh, it’s such a hassle that initial disclosure. And the fear of rejection. It’s just overwhelming. I remember a guy I met recently who I really like and who likes me so much as well. He broke up with me because I am positive. So there are still issues out there, it’s really daunting.

EJ: Thank you for having this chat with me Bisi.

BA: It’s been great talking to you again as usual.