The recent International World AIDS Day, once again brought the issue of HIV/AIDS to our attention for 24 hours. However, we cannot afford to get complacent and relegate the discussion to a day’s event. I say that because people living with HIV/AIDS don’t live with it for a day. They eat, sleep and wake up with it and HIV has not gone on holiday since it was discovered in the early 80s. I wrote a piece for Al Jazeera about my experience in the village of Igabiro,Tanzania, and how the community was fighting the disease together. But there are other regions of Africa, where the story is different. That is why I believe it is relevant we keep this dialogue alive.
Winnie Ssanyu-Sseruma was one of the first people from the African diaspora community in the UK to go public about her HIV status in 1999, when she declared her status on the front cover of a magazine. Her objective? To counter the stigma and discrimination she encountered within her community Over a decade later, Ssanyu-Sseruma remains relentless in her work to raise awareness about HIV/AIDS in Africa and in the diaspora. In her own words, Winnie Ssanyu-Sseruma and why HIV is not about morality. It is about HUMANITY.
Belinda: How important is World Aids Day to the mission you are on, when it comes to making more people aware about Aids?
Winnie: World AIDS Day is a perfect platform to raise awareness and re-educate people about issues like HIV and AIDS. Research on attitudes towards HIV in Africa and African communities in different countries has shown that Africans who are well off, or in higher education, those with reasonably good jobs are most likely to be in denial about HIV. Additionally, although many Africans know about HIV, and possibly know someone with HIV or someone who has died from HIV related complications, many still believe that they could never get the disease. They do not believe they are at risk. It is important to continue to raise HIV awareness at every possible opportunity.
Belinda: People don’t live with HIV on World Aids Day alone, as such, what is the message you want to share about the continuous need to address HIV/AIDS in Africa?
Winnie: First, it is important for people to have discussions about HIV with their families, at work, in churches or any other place so that we can eliminate the stigma attached to HIV. The more people can talk about HIV, the more they learn, then they will be able to deal with HIV rationally and this will inevitably go some way to help to reduce the devastating impacts of the epidemic. Secondly, it is not enough just to talk and or learn about HIV but we need to take action on all levels – on an individual level to practice what we learn, for example using condoms regularly and consistently and getting regular HIV tests. Collectively, as Africans we need to rally our governments in Africa to do more in tackling HIV. Donor funding and HIV treatments from the West are not sustainable. Africa needs to find ways of solving its own problems or we will continue to regress as a continent.
Belinda: Where is Africa in terms of getting to grips and dealing with the current state of HIV/AIDS on the continent?
Winnie: Some countries and some communities are succeeding as far as raising awareness is concerned, but many are failing by either doing nothing or just tackling prevention and not treatment, care or support. Many African governments do not have decent health budgets, and those which do are not addressing HIV adequately. HIV has become big business and corruption is literally putting a lot of African lives at risk in more ways than one. Just dealing with the prevention aspect of HIV is not enough. All countries and or communities should aim to prevent, treat, care and support those affected and living with HIV. It can never be an either or.
Belinda: How much more work have we got to do in order to get to par with the rest of the world?
Winnie: There is a lot of good work happening on the ground in Africa and in African communities outside the continent. But we need to get more people involved at all sorts of levels. We should not try to compete with other countries or continents, because the circumstances are different. What we should try and do is to see that whatever resources we have as a continent or those we get from donor countries are utilized properly and go to serve the people they are meant to serve. It is shameful to know that HIV money from the global fund goes in the pockets of some African leaders at the expense of people literally dying from HIV and AIDS.
Belinda: You were diagnosed over 20 years ago and you are still with us but there are people in the motherland, who don’t make it past five years, do you agree that the various national governments on the continent need to rethink the treatment mandate they currently operate on?
Winnie: I have been extremely lucky but I am by no means unique. I have somehow managed to be in the right place at the right time to be able to access support, the best treatment money can buy and care to stay alive. If I was living inAfrica, when I was diagnosed I really don’t think I would be alive today. That is the sad truth. An HIV diagnosis to some extent is still a death sentence inAfrica. None of the HIV treatments are manufactured in Africa. We are completely dependent on India and the western world where treatment and funding for treatment is concerned. In this very uncertain economic environment, funding for HIV treatment is going to be cut and people who had already started treatment are going to find themselves without these life saving drugs. Those who should be starting treatment are not going to be able to start. Yet we know from all the scientific research that is it better to be on treatment as early as possible. Funding cuts means treatment cuts that includes treatment to prevent mother to child transmission. The consequences of the situation outlined above, does not bear thinking about. African leaders do not have a plan B!
Belinda: Where stigma is concerned, how much work do we still have to do and get people to come out of the denial state about HIV/AIDS?
Winnie: HIV related stigma is the reason why HIV continues to devastate Africa. The stigma attached to HIV stops people from testing, fuels denial and stops those living with the virus from accessing the critical support and treatment that they need. The stigma related to HIV is alive and well and basically killing people. Part of the reason I speak out is to confront this stigma head on. Some people want to write off people living with HIV as hopeless, not able to contribute to society because we may be dying soon or are perceived as irresponsible or immoral. Speaking up not only helps to change these sort of attitudes but it is necessary to keep communicating the fact that people living with HIV are part of society and need to be valued just as much as those who are not. Stigma manifests itself in a lot of different ways. Some people are not aware that they are even stigmatizing people living with HIV. Take for example – there are many countries which still require an HIV test in order to obtain a visa to travel to a country and others deport people who are found to be living with HIV. For 20 years the US had a travel ban on people living with HIV, that ban was only lifted in January 2010. People have to deal with their own individual attitudes towards HIV and those living with the virus and then collectively we need to challenge laws that continue to discriminate HIV positive people. Many people will tell you they have no problems being in the same room with an HIV positive person, but ask them what they would do faced with a decision to live or even marry somebody who has the virus. There is a lot of work still to be done on eradicating HIV related stigma.
(The Youtube below is from TEDxEuston 2010, where Winnie challenged societies atitude to HIV/AIDS. I remember she was looking forward to celebrating her 5oth birthday and she made it. Saw her again at TEDxEuston 2011, she was looking fly!)
Belinda: In terms of helping people who are living with HIV/AIDS, who are still very afraid of letting others know that they live with HIV in some parts of Africa, how can we deal with that fear so people can be open and free?
Winnie: We all have to constantly educate ourselves on these issues and then have some frank discussions with our families and network of friends. I remember when I was still living in North America, on two occasions a group of friends were discussing various social issues and on both those occasions the subject of HIV came up. None of my friends knew I was living with HIV at that time. A few of them said they would not sit of the same chair or sleep in the same flat with somebody they knew had HIV, others didn’t say anything which was also not a good thing from where I was sitting. I was contemplating disclosing to some of my friends but hearing how they felt, I decided not to. The stress of not being able to confide in anyone and feeling so isolated and alone nearly killed me. It took me nearly six years to tell that set of friends about my HIV status. At the time when I disclosed to them I thought I didn’t have long to live because I was ill with pneumonia and tuberculosis, I thought I was going to die. The way to help those living with HIV is by being compassionate, understanding and non-judgemental.
Belinda: How have attitudes changed from the time that you were first diagnosed right up until now?
Winnie: Attitudes towards HIV and people living with HIV has definitely changed since 1988. Many people know how HIV is transmitted, many people know ho to protect themselves (whether they practice what they know is another matter) and there is HIV treatment to give people living with HIV a better quality of life. There is far more support out there if you know how to tap into it or are willing to embrace this support.
Belinda: What do you think the next 10 years holds for Africa as far as combating the HIV/AIDS virus is concerned?
Winnie: There are two scenarios, I think. The first one is the optimistic one where less and less people inAfrica will be infected because the young generation are actually taking the prevention message on board. With more and more people living with HIV and accessing treatment, there will be few babies born with HIV and mother to child transmission will be eradicated. Once again because more and more people living with HIV will be on treatment, the HIV virus will weaken and will no longer be infectious. The worst case scenario is that donor funding will dry up and less and less people will access treatment. More people will be infected, mother to child transmission of HIV will continue and HIV will still be with us for another 50 years to come. I prefer the first scenario.
Belinda: Do we have enough activists helping to raise awareness at the local and national levels and how can this trend be changed, so we can get the message out to more people?
Winnie: There are no where near enough African activists working in the HIV field. Many people do not want to be associated with anything to do with HIV, just in case, someone thinks they could be living with it. It goes back to the stigma attached to this the virus. Too many Africans worry about what other people think and refuse to live their own lives.
Belinda: Are we failing the next generation by burying our heads in the sand about this?
Winnie: The generation we are failing is our own. There is anecdotal evidence to show that young people in several African countries are listening to HIV prevention messages and changing their behaviour. In 2010, at the International AIDS conference,Vienna, Austria, the UN reported that it had done research in 17 African countries and found that young people were putting off sex until they were older, they were also using condoms much more than adults and the HIV prevalence among young people in these countries was on a downward trend.
Belinda: There are different elements to take into account when dealing with HIV/AIDs in where Africa. From the traditional faith healers to religious bodies and the attitudes that come with all of that, how can we better connect these different areas so we are speaking with one voice and stop confusing people?
Winnie: We have to bring everybody into the fold and communicate the reality about HIV and AIDS. We cannot compromise on the truth. The reality is HIV is preventable, it is treatable but at the moment there is no cure. No traditional healer or religious leader has been able to cure HIV and if one says they have, then they are bending the truth. HIV is not about morality, it is about humanity. Let us stop moralising HIV. Religious leaders and faith leaders have huge audiences they preach to. We need to work with them, provide them with the facts about HIV so that they can also help to educate their audiences about HIV.
Belinda: What do we as Africans and the leaders of the continent in order to help ourselves out of this hole?
Winnie: African leaders need to stop being selfish and start to rethink the way they utilise donor funding as well as their country finances. As a continent it is deplorable that we have vast amounts of mineral wealth but cannot feed ourselves or sustain our people in any way. The world is changing and donor funding is going to become extinct. It is important that African leaders find ways in whichAfrica become less dependent on the western world and start utilising the resources that the continent has properly. What on earth do these leaders discuss at the AU summit? HIV is not the only challengeAfrica has. There are many more and we have the potential as a continent to achieve so much, but our leaders continue to let us down.
Image of Winnie Ssanyu-Sseruma: Femi Sunmonu
Read Winni’e Blog for The Independent Newspaper: Winnie Ssanyu-Sseruma
Africa AIDS Analysis: Fox From Zim
World Aids Day Logo: ILLAWARRA Q INFO
