“Taking an HIV test may be one of the best things you ever do”

Interview with Winnie Ssanyu Sseruma, HIV Mainstreaming Coordinator, Christian Aid, London

Many people wrongly think that testing HIV positive is the end of life. Ms. Winnie Ssanyu Sseruma, who has been living openly with HIV for 21 years, is as she says, “a living example that this is not the case.”

Winnie was educated in Kansas, USA, where she graduated with a BA in Sociology. She now works for Christian Aid as HIV Mainstreaming Coordinator and she is based in London. She has coordinated several social research studies as an independent consultant and written many articles looking at the social and medical issues affecting people living with HIV. For seven years until October 2006, she chaired the African HIV Policy Network (AHPN), the only policy organisation looking at the sexual health issues of African communities and working for fair policies for Africans living with HIV in the UK – providing training, support, research and information.

In this exclusive interview with The AfroNews, Winnie highlights how HIV is transmitted and the importance of testing for HIV. She says that while knowing the facts about HIV is great, “taking that extra step to get a test maybe one of the best things you ever do.”

Winnie, you have been living openly with HIV for 21 years. Please share with us practical ways of living a healthy, positive life with HIV.

I wish I had a formula for living well with HIV, I would not have to work so hard because I would be very rich. I am afraid that there is no formula. What works for me may not work for somebody else. What I can say is that, it hasn’t always been that easy trying to be positive about life. When you are told that you have a disease that is compromising your immune system and that there is no cure for it, it is so hard to take on these facts. But you have to take each day as it comes and try not to let your thoughts or the challenges that you face overwhelm you. The most important thing is not to live in denial, to seek the support that you need (what ever form that may take) and to get on with living the best way you know how. Many people living with HIV worry too much about what other people think about them, I don’t. We all have the ability to tap into that inner strength to get us through the hardest of situations. My case is certainly not a unique one. But practically, I am privileged to have lived in places where I can have easy access to treatment and care, I have a network of supportive family,  friends, and employers who facilitate my financial independence and a determination to live.

HIV is spreading at an alarming rate among members of the Black community in the UK. What do you think is responsible for this?

The biggest challenge is having an honest and rational discussion about HIV in the Black (African, Caribbean, Asian) communities. Some people want to bury their heads in the sand (denial), others think they know enough but they really don’t and others would rather spend time discussing where HIV came from or dwell on myths than face the real issue. As some wise people have said in the past, when your house is burning, you do not stand there, watch and ask where the fire came from. You put out the fire and then search for the source of the fire once the fire is out. This is the situation we are in where HIV is concerned. We need to deal with the HIV epidemic and not be distracted. People need to actively listen, learn, protect themselves from HIV and be compassionate to those living with HIV.
How can we curb its further spread?

What people need to know, (especially people in Black communities around the world because we are disproportionately affected by the virus) – is how HIV is transmitted to protect themselves and their loved ones. They need to stop moralizing the issue and to encourage as many people as possible to go get tested so that they can get the support they need whether they are positive or negative. 

Why is it important for people to go for HIV test?

It is the only sure way of knowing whether you have the virus or not. You can’t tell by looking at someone, you can’t tell for sure through any number of symptoms. People can live well with the virus for a long time without showing any outward symptoms. Another thing is that it is not automatic that if you had sex with somebody who is HIV positive you are also HIV positive. We see a lot of discordant couples (where one person is HIV positive and another is not). The earlier you test the better. If you end up being HIV positive, you can access treatment easily (especially in the UK) and your life expectancy will be near normal. If you test HIV negative, you can have peace of mind and arm yourself with better information on staying negative. From my point of view, it is a win-win situation.

Many people think that testing positive is the end of life. What’s your message to them?

Well, I am a living example that this is not the case. When I was diagnosed HIV positive in 1988, I didn’t think I would be here now let alone talking and writing about living with HIV. I was afraid and scared in the first few years, but I didn’t let the fear get to me to stop me from living. In those days, there was no effective medication, the prognosis for HIV was very poor and HIV related stigma was at its worst. Even some faith leaders and their congregations jumped on the band wagon. Nowadays, HIV is a treatable and manageable disease. Sure HIV changed the course of my life, but I am pleasantly surprised with what I have achieved and continue to achieve, even with a life threatening illness. I love life and have never felt better. The very basic message is learn the facts and everything else will fall into place.

How can we fight the stigma of HIV/AIDS in our communities?

In order to fight HIV related stigma in our communities, we have to talk about HIV with / to our young people, get the Faith leaders to talk about it in the places of worship and to stop demonizing people living with HIV. HIV is a virus, not a moral issue and not a crime. There are a lot of other social issues that we have to address within our communities that make people vulnerable to HIV such us gender inequality, sex, sexuality, homophobia and the list goes on. HIV related stigma is a complex issue that does not have a simple solution. It needs a long term strategy. Talking about issues that make people vulnerable to HIV is only a start.

You have coordinated several social research studies as an independent consultant and written many articles looking at the social and medical issues affecting people living with HIV. You have also spoken at high level conferences on HIV most recently at the UN General Assembly Special Session on AIDS in New York, USA. What’s your view on the messages being communicated to people about HIV/AIDS?

I have to confess that there are a lot of mixed messages out there and sometimes it can be difficult to unpack all the issues. At the same time, there are certain things that people choose to believe because they suit their purposes. Some examples are – Condoms don’t work, abstinence only programmes work and HIV was the work of the White people to get rid of the Black people. All of these are misleading statements. HIV requires a comprehensive approach based on scientific evidence. We cannot afford to have half baked or misleading information out there, it is costly in more ways than one.

What we know is that condoms are the only methods we have at the moment of preventing sexual transmission of HIV. Condoms work, they are not immoral and they do not make people more promiscuous. Abstinence works in conjunction with methods of HIV prevention. HIV is transmitted through infected blood, through sex with an infected person, from an infected mother to an unborn baby and through breast milk. HIV treatment works by suppressing the virus and prolonging the lives of those infected with HIV. These are the facts.
In many parts of the world, most people living with HIV do not have access to care and treatment. Why do you think this is happening and what can be done to solve this problem?

I think is important to know that not everybody who is living with HIV actually needs treatment, at least not right away. Eventually all those living with HIV will need treatment at some point unless someone decides that they do not want it – which sometimes happens. At the moment, there are about 10 million who need treatment in middle to low income countries. Only four million of these people are getting treatment but it is still an improvement and things are gradually getting better. We have to keep advocating for everyone who needs treatment to get it. We need to hold our governments (especially in African countries) accountable. They should be providing effective healthcare to their citizens and not leaving it to foreign donors or misappropriating money they get from the global fund. We need to continue to rally pharmaceutical companies to lower their drug prices so that those drugs can become more affordable or to appeal to them to relinquish the patents on their drugs so that companies which make generic drugs can be able to make the drugs cheaply.

Gambian President Yahya Jammeh has been claiming that he has a cure for HIV/AIDS. What’s your comment on this?

There is no cure for HIV/AIDS at the moment and it may be a long way off. Our best strategy is keep people from getting infected and treating those with the virus. The claims of the Gambian president are irresponsible and disappointing to say the least.

Any other comment?

Some cold facts are that the majority of people living with HIV have never taken a test. Therefore they continue to infect others unknowingly. People living with HIV on treatment are unlikely to infect others because they have the necessary information to protect themselves and treatment makes them less infectious. Knowing the facts about HIV is great, taking that extra step to get a test maybe one of the best things you ever do.

To know more about Christian Aid’s HIV work please go to www.christianaid.org.uk

If you are concerned about HIV, need to know where to get a test or need information on HIV treatment, please call a free treatment information phoneline: 0808 800 6013 on Monday – Wednesday from 12 noon – 4:00 pm. You can also check out this website www.i-Base.info

By Stephen Ogongo