From a Whisper to a Roar – Increasing momentum for the HIV and AIDS response globally

December 1, 2013

From a Whisper to a Roar: Increasing momentum for the HIV and AIDS response globally

With the HIV epidemic in its fourth decade, the focus has shifted from the dark days of the height of AIDS to the reality of what it is like to live long term with HIV.
Questions such as: how can we keep HIV at the top of the global political agenda; what is the daily reality for the millions of people living with HIV around the world; what are the long-term implications of taking antiretroviral therapy (ART); why are we not seeing a decrease in the level of new infections; why is stigma and discrimination still an issue; and how can we change behaviour to reduce HIV transmission, are prominent and perplexing in this new era.

Many of these questions were discussed at the seminar entitled ‘From a Whisper to a Roar – AIDS in America, AIDS in Africa: Stories of Resilience and Response to living with HIV’. Held in the Irish Aid volunteering centre in Dublin on Thursday 31st October, a suitably wet and windy Halloween, the event was hosted by Concern Worldwide pre their ‘HIV Gathering’ workshop week.
It was most definitely worth venturing out for the event as the speakers were the esteemed veteran activist, artist and writer Mary Fisher from the US and Edna Lugano working with Concern in Tanzania.
Edna was speaking on behalf of Sauda Ntakiteye, a Tanzanian farmer who has lost her husband and six children to AIDS. Sauda is living with HIV herself and taking care of her grandson Majaliwa. Broadcaster Dil Wickremasinghe of Global Village, Newstalk facilitated the event that was attended by a “who’s who” of veterans from NGOs working with people living with HIV in Ireland and overseas.

One of the key messages that came out of the seminar was the discerning fact that HIV is no longer on the top of the political agenda; it’s no longer the ‘disease du jour’. This is truly a tragedy as the 2013 Millennium Development Goal (MDG) report tells us that the indicator for access to ART for all who need it by 2010 was missed. It is hoped that this goal can be reached by 2015 if current trends are maintained, but unfortunately overall knowledge of the virus and how to prevent it spreading is unacceptably low.

Another revelation is that in the US in particular, as Mary Fisher categorically stated, ‘education is not working’. The figures for the number of people contracting HIV in the US have consistently been of the order of 50,000 every year for the past ten years. But why? How can it be that with all the information available and efforts made to prevent the disease there is no reduction in new infections? The answer seems to be complacency: Joe / Josephine Public thinks, “it can’t happen to me” or “people like me don’t get HIV”. Now that there is a course of treatment available for HIV the perception is that it is not such a high priority to get tested and to know your status. You can take a pill if you get infected. Yet ART cannot cure HIV.
The reality is that while treatment is now widely accessible, being HIV positive and taking ART long term can have many side effects from cardiovascular disease to cancer and mental health issues. Some of these are only now becoming apparent as there are more and more people who have survived and who are living for decades on ART.

Stigma and discrimination is another persistent problem. As one commentator at the event said “we need to stamp out stigma”. Human rights are not being upheld in many countries, both developing and developed, and this is having an impact on efforts to turn the tide of this disease. In developing countries, same sex relationships are punishable by imprisonment and even death. In some developed countries adolescents are deprived of the information they need to protect themselves against the disease by the refusal in certain quarters to speak openly to young people about sex, safer sex and protection from sexually transmitted infections.

Let us hope that the whispers of those who continue to suffer stigma and discrimination will be heard. That the message of those who roar on their behalf will be heeded by the powers that be, so that by 2031 we can see an end to this HIV and AIDS.

(L to R) Breda Gahan, Dil Wickremasinghe, Edna Lugano, Nelson Obiora Okonkwo and Mary Fisher (31st Oct. 2013)

 

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