In 1986, when the first HIV case was reported, being told that one was infected with HIV was like handing out a death sentence to that individual. Not only was there barely enough information, there was no preventive medicine and we were told there was no cure. Fifteen years down the line, there is still no cure but infected persons don’t have to die anymore as the introduction of anti-retro-viral (ARV) drugs have helped to keep infected persons alive.

Before now, many were not so lucky as they lost their lives to the dreaded disease. Those who were not killed by the virus died out of excessive fear or from shame resulting from stigmatization and discrimination meted out by members of the society and sometimes members of their own families!  Yet, AIDS as an advertisement proclaims “no dey show for face”.

On the 1st of December every year, the United Nations Celebrates World’s AIDS Day. Today, we feature three young women with compelling stories of their battle with the dreaded disease; from a state of despondency to a point of finding love and having children. We call them the champions of HIV and AIDS.

“Having children who are HIV-negative
fills me with joy.” – Lucy Attah

Lucy Attah is a mother of two. She holds a B.Sc. in Public Administration from Lagos State University. She is the executive director, Women and Children Living with HIV & AIDS, an NGO that gives support and home based care as well as public enlightenment and advocacy.

How and when did you find out that you are HIV positive?

I found out that I was positive 13 years ago; when I was pregnant. My doctor advised me to take a test. I did and when the result came, I found out I was positive.

Was that test a compulsory one for all pregnant women?

No, it was just a new thing altogether and I took the test without pre-test counselling. When the result came, it was a big blow. I went through psychological trauma because in those days, being HIV positive was like a taboo.

What should be the proper steps to taking a test?

People should be counselled before going for a test and they should also get education about the disease. They should go for pre-test and post-test counseling. That is very important.

When you got your test result, how were you able to overcome the shock?

Well, at the time I got the test result, I had newly given my life to Christ. So, I felt it was the devil coming to tempt me. I remembered the word of God that 10,000 will fall beside me and nothing will happen to me. So, I began to claim those positive things I hear. Also, I started gathering information about HIV and AIDS. When I became knowledgeable about HIV, I overcame the fear and trauma and was able to live strong.

Thirteen years ago, access to drugs was almost a big problem. How did you cope?

Drugs were not available and where it was available, it was expensive. It was sold for over N100,000. The price further discouraged people especially in the communities from knowing their status. It was a big problem and that was why faith claimants were coming out to say they have cure and collecting about N500,000 from people to cure them.

So, how did you cope financially?

You can’t just test positive and be on drugs immediately. As at the time I tested positive I was very strong. My immune system was very high so it wasn’t enough reason for me to start drugs. So, I didn’t start drugs until after a year or two.

The issue of stigma, how did you cope?

I think I was the one who actually stigmatized myself. I was afraid and I kept asking myself: “How did this happen?” But when I acquired enough knowledge, I was able to overcome quickly.

So, at what point did you decide to be open with your status?

I attended a conference in Durban, South Africa in 2000. At that conference, I saw a lot of positive people. I attended a lot of sessions, gathered new information and realised that all hope was not lost. I decided that I would do something when I came back home. I not only came out but it was at that conference that the idea of my NGO was born.

How did family and friends react?

People don’t want to talk about HIV and even when you want to come out, they tell you not to. After I started taking my drugs, I broke the news to my mum. So she was not so worried.

So, how has life been – living positively open?

It’s been good. I am happy knowing that I’m touching lives. Life is about meeting the needs of other people. It is very fulfilling. God is using me world-wide to touch lives, not just in Nigeria. I was among the first set of people in Nigeria to give HIV a human face. So, I’m glad that God has used me to touch the lives of women and children living with HIV in Nigeria who would have died of ignorance.

What message would you send out to women at a time like this?

At a time like this, I’d advise Nigerian women of child-bearing age to know their HIV status because then they would know what to do to have HIV-negative babies. After all, we are talking of an HIV-free generation. I’d also advise our government to pay attention to theneeds of women living with HIV and AIDS and to get them actively and meaningfully involved in decision making.

We also want to see a situation where women attending anti-natal clinics are catered for free of charge. They should remove all the charges because it is making women to patronize traditional birth attendants and it’s not helping our cause; if we truly want an HIV-free generation.

In all of your travails, what would you say really helped you?

I’d say it was my hope in God. Secondly, the information I gathered changed my view of life. Then, with my status, God gave me HIV-negative children. That gave me joy and I feel fulfilled as an African woman living with HIV and who wants to have children who are negative. The first one is nine years and the second is six years and they are in school doing well. So, I feel proud.

So, there is hope for other women?

Yes, of course. They can have children and go on to do other things for themselves. I am currently looking for a school to do a masters degree now. So, being HIV positive is not the end of life. I also want to appeal to communities – that they should show love because it could be anybody. They could be stigmatizing somebody not knowing that some of their children or family member is positive. The only thing that would make people come out openly is to show love and care. They should reduce stigma because it is God that owns life. There are rich men and women who have died of other illnesses and yet those with HIV are still alive. So, being positive is not the end of life.

“Love from family members
made the difference” – Aminat Alli

She was only 24 years old when she found out she was HIV positive. She wasn’t only positive but the disease was at the verge of blowing into AIDS. Anyone looking at her today would never believe how close to death she came. With proper family care, love and drugs, her life is back on course. She not only found love but went on to have a lovely child. Aminat Alli is not only an inspiration to many but a voice for many young people. As GIPA Workplace Adviser to Nigerian business Coalition Against AIDS, she advocates for policies in the workplace to prevent discrimination against member of staff living with HIV. Here, she tells her story and her battles with the dreaded disease.

How did you find out that you were HIV positive?

In 2004, I was very sick and after much diagnosis, my family doctor couldn’t find anything wrong with me. He suspected tuberculosis and referred me to Mainland Hospital, Lagos but they could not detect tuberculosis. I was later asked to go do an HIV test at Salvation Army Hospital. When the result came, I was HIV positive. At that time, there was no counselling and when they told me I had HIV, I felt very bad and worried for my parents and how they will watch me die young.

With knowledge now, what is the proper thing before one goes for an HIV test?

There should be counselling because it gives room for the person to understand the process and have information as to what to do if he or she is found positive.

You had no counselling before your test. So, what did you do after the result came?

Like I said, I thought about how my parents will mourn over me. My older sister who took me there was devastated. We were again referred to AIDS Alliance Nigeria, coordinated by Mohammed Farouk.

We met a counsellor who talked with me and told me she was HIV positive as well. I didn’t believe her. I felt she was just saying it to make me feel better. She invited me to a support group meeting; from there we were asked to go to Nigeria Institute of Medical Research (NIMR). I was so weak I didn’t have the strength to cry. But there, I saw many other people. I also met with a counsellor after which I was asked to buy immune booster. During that time, I could not eat but after being treated for TB for three months, I felt better and was later placed on ARV.

At the time you started taking drugs, what was access to treatment like?

Medication was not totally free. It was subsidized so I was paying N1,000. Before now, it was so expensive that after we got home from the clinic, my father called a family meeting and told my older siblings how they will all have to be contributing to help me stay alive.

Did you have to endure any form of stigmatization?

When I was with my mum in Surulere and very sick, some people were already insinuating behind my back that I might be HIV positive. My brother-in-law now said I should move in with them so that they can take care of me. I think the only time I was really discriminated against was when I was in school at Yaba College of Technology. I was a member of the anti-AIDS club. There, I disclosed my status and a member went out to tell his friends. Our president then had to take disciplinary action against him and suspended him. Although he came to apologize to me later, I said it was no problem because he had made my job easy as I had planned to come out open with my status. Initially, I felt bad but I later overcame it.

What gave you strength during this time and what inspired you?

I’d say my family. They were there for me. If not for them, I won’t be here because the doctor said I was at the verge of AIDS. My family stood by me; they didn’t say, let’s leave her to die. My brother-in-law, I cherish him a lot. Some families would send their own away not to talk of an in-law. He stood by me and that gave me hope to live on and to pursue my dream.

Another thing that inspired me was when I saw the likes of Mohammed Farouk, Rolake Odetoyinbo. It made me want to do something. After regaining myself, having access to internet, I went to Google to read more about this disease that wanted to kill me and to find out people who are involved with HIV.

So, the people making a difference – especially those two I mentioned really inspired me as well as my family.

From a state of despondency, you went on to have a relationship and then a child. How did it happen for you?

When I knew my status and overcame the fear of death, I bounced back and carried on with my life. I never thought I would date not to talk of having a child. But along the line, when I saw other people who had HIV and have children who are healthy, the next thought on my mind was how to have a healthy baby – even if out of wedlock. I didn’t care

because my mother already thought I would never have children and the only way to convince her was to go ahead and have one.

Luckily for me, an old secondary school mate of mine whom friends used to call my husband at the time was told by other friends that they had seen his wife on TV talking about HIV and that I was positive. He just showed up, looking for me. To cut a long story short, we met and he asked me out. The first thing I did was to tell him that I’m HIV positive. He said he didn’t mind; that he knew. Although, we are not officially married, we are engaged and we have a baby.

When you look back to where you are coming from, what would you say it is like living with HIV?

Living with HIV has not been easy; taking the drugs everyday and people talking behind your back and not being able to do some things.

When I had my baby and couldn’t breast feed, it hurt. There are times I go out and my baby is crying and people are like, ‘breast feed your baby”. You feel bad because you can’t. My mother-in-law is great in this regard. When people tell her: “This your daughter-in-law is not breast feeding her baby”, she tells them that I have been breast feeding all through the night and I need a break.

There are also times when you feel lonely and wish this HIV was not there. After I got on my feet, I was determined to move ahead. I said to myself that this disease that wants to kill me, before it kills me, I have to achieve something in life. My family being there and meeting a guy that is so accommodating and always there helped and gave me a determination to do the things I am capable of doing.

“Living with HIV has brought out the side of me
I never thought existed.” – Temitayo Oyedemi

Ten years ago, in her early 20s, Temitayo Oyedemi found out she was HIV-positive. It was a piece of news that shattered her world.

Believing a death sentence had been handed down by the doctors, she dropped out of school, gave up on life and for seven years waited for death to come. However, when she got relevant education on the dreaded disease, her views changed and she picked up the pieces of her life again. Today, she is not only living positively open, she is also an

advocate for women who have been raped.

How did you find out that you were HIV positive?

I was in pains because I had blisters on my body. I went to the hospital, nobody knew what I had. They kept tossing me here and there. At some point, they conducted an HIV test without telling me. When the result came, the doctor asked me to send for my guardian because I was living with my pastor then. He came and the doctor disclosed to him that I was HIV-positive.

Although it was wrong; they should have told me first, looking back now, I think it was better because if they had told me directly, maybe I would have committed suicide.

At that point, how much knowledge did you have about HIV?

The only thing I knew about HIV were those images of skeletons they used to show on TV. So, when I got the news, I felt I’m going to die any moment from now. But my pastor wouldn’t let me. They would pray, fast for God to heal me. There was a day he told me that he had told God to look on their faith and answer them because he knew I had no faith that I would live. And that was how it was. I knew absolutely

nothing and so for seven years. I lived in denial believing I won’t get better. I dropped out of school and just wanted to die. There was a time I did a CD4 count and it was 13. It was so low that the doctor couldn’t believe I could still move about. Now, I know all those prayers kept me alive.

For you, was it easy to access drugs?

Drugs were not so accessible. But my doctor assured that he would help me get them because he had two patients that he used to help. And, the places where there were drugs, people didn’t want to go. They were afraid that the receptionist there or somebody might probably recognize them. So, we had situations where someone collects and sells to people who are too ashamed to go. Some share their medications with other people all for fear of discrimination.

When I started taking ARV, medication was N12,000 but I couldn’t be a burden to my siblings and the church. So, I didn’t start medication until 2005 when it became N6,000. I used to get three months’ supply.

Today, I thank God that it is free.

Were you ever discriminated against?

I have never really been discriminated against or stigmatized. The only time I came close to that was once when I went to the clinic and the cleaner vehemently refused to allow me use the toilet. You know that at an ARV centre, it is no secret that everyone who comes there is HIV positive.

Although, she was saying that she is the one who washes the toilet, I knew that in her heart, she was refusing because of my HIV status. I left but I think somebody must have told her that she messed up because by my next appointment, she came up to me and apologized. That was the only time I was ever discriminated against. I have lived with HIV for 10 years and apart from this incidence I am yet to be stigmatized.

So, what made you think you should come out with your status?

For seven years, like I said earlier, I was just there. I didn’t want to do anything. I was just non-chalant about life itself. But around 2007, I just started feeling that I should do something; work around people living with HIV, just to see people like me and see how they work and live.

So, I came to Lagos and saw (information on) the PATA’s women leadership and mentor training programme. I applied and was invited. I came and was amazed to see these women that are also living with HIV doing very well at their different locations. I was really encouraged and for the first time, I felt I wasn’t alone. I felt a sense of belonging. And, of course, after that, I did a public disclosure.

I have not regretted that decision of being open with my status. I am so glad that I am part of the people that demystified HIV and let people know that this is how we look like – normal people and not the skull and skinny pictures portrayed in the media.

What do you do in terms of advocacy?

I’m an advocate of PEP, post exposure prophylaxis. It is a combination of anti-retro-viral drugs that are administered to rape survivors or health care workers that have just had a needle prick in the process of treating someone with HIV.

PEP has to be administered within 72 hours after exposure. It means that if you have just been raped last night, go to the nearest ARV centre and ask for PEP. It will prevent you from getting infected since you are not sure of the status of the rapist or the person you were treating when you got pricked. You must take it within 72 hours because it takes that long for HIV to attach itself to our blood stream. After 72 hours, there is nothing PEP can do.

What good would you say has come out of being positive and open?

I am a reserved person by nature. I like to sit at the back and watch things happen. But living with HIV has brought out the side of me I never thought existed. Now, I can stand before people and talk about HIV. I was at two panels at the just concluded HIV/ATDS Conference in Vienna and I couldn’t believe I was the one addressing experts and they were listening to me.

So, what is living with HIV like?

The fact that I have to take medication twice a day could be

depressing. There are times I get tired and need a break. But each time I remember that I have to live and I love life, I go and take it.

It’s a challenge to have to swallow pills twice a day. So, once in a while, you have that feeling.

Many people who find themselves living with HIV often think HIV is the end of the road where relationship is concerned. Has the virus been a barrier for you?

It has never been. The seven years that I lived in secrecy, I never thought I could have a relationship. I never thought some one could look at me and say “hey girl!” But honestly, I’ve never lacked for relationship. I have a man in my life and he is doing well.

Right now, somebody somewhere is getting that news you got 10 years ago that you are HIV positive. What would you say to such a person?

If I tell you the road is going to be easy I’d be lying. But I know that you need to be strong and please erase the images that you are used to seeing (in the media) because that is not who you are. Go to the nearest clinic and register and do your base-line test. And, for those who are wondering and asking what is good about HIV? You won’t know until you get tested.