As the representative for the International Community of Women living with HIV on the Conference Coordinating Committee for AIDS2014, my aim over the past two years was to get as many women living with HIV from as diverse backgrounds as possible onto the International AIDS Conference programme.  I have been successful in terms of the plenaries and symposia, with over a dozen women living with HIV, from Africa, Asia, Central America and the Pacific presenting. They include, Dr Lydia Mungherera, Uganda, who founded the award winning "Mama's Club" in Uganda; Jenifer Gatsi, who has been working with Namibian women to challenge their government over forced sterilizations, and L'Orangelis Thomas Negron from Puerto Rico, who was born with HIV and started a blog "Ovaries of Steel".

However, in terms of the number of conference delegates who are women living with HIV, I am disappointed to say the least, and I now start to question the value of much of the work that is carried out under the guise of the response to HIV.

Only one in every thousand of the 12,000 delegates at AIDS 2014 will be a woman living with HIV who has been fully funded by the International AIDS Conference to attend. This is an appallingly low figure. Although the scholarship committee has quotas for women and for people living with HIV, these categories are not cross tabulated, which has resulted in proportionatley much higher numbers of HIV-positive men and HIV-negative or status-undisclosed women being awarded scholarships than HIV-positive women. Men living with HIV were twice as likely to be awarded a scholarship than women living with HIV. Obviously there were fewer scholarship applications by women living with HIV than those of other applicants. But does that mean we should exclude many of the women working at grassroots level from this conference?

Time and again during the planning for this conference I have heard that we need to bring the science back into the AIDS conference, but is that really what we need?  Yes, we are closer to a cure for HIV than ever before.  Yes, we can stop people dying from HIV if they get access to treatment.  However, the reality is that only one in three people on the planet who need them has access to antiretrovirals (ARVs).  Why?  Because of the stigma that still surrounds HIV 30 years after it was detected.  How do we shift this barrier that stops people from wanting to know their status and taking action about their HIV-positive status?  The only way is to involve the global community of people living with HIV. 

Women living with HIV are diagnosed HIV-positive at higher rates than men are, often at antenatal care clinics during pregnancy.  WHO guidelines for pregnant women living with HIV, launched last year, promote "Option B+", which offers anti-retroviral therapy to women at point of diagnosis, and recommends continuing ARVs for life, regardless of CD4 count or clinical stage. This was hailed as a breakthrough on how to eliminate transmission of HIV to newborn infants and keep their mothers alive.  It backfired. 

Recent research in Malawi indicates that women who are put on ARVs at the point of diagnosis during pregnancy are five times more likely to be lost to follow up than other women. This means women who are being diagnosed and immediately put on ARVs are turning their back on health care centres. Why?  Anecdotal evidence indicates that women are afraid of the stigma, afraid to go home and be the first person in the family to be diagnosed, afraid they will be blamed, afraid they may be beaten up because of it. ICW members have heard of women who have thrown their ARVs in the rubbish bin as they leave the clinic for fear of them being found in their possession. 

So yes, we need the science, but we also desperately need the input of women living with HIV to talk about ways to combat stigma and discrimination on the ground.

Over the last months I have seen a myriad of policy documents and statements on how to respond to the epidemic, but the reality is that it can only be successfully tackled by engaging communities of women living with HIV. Women constitute over half of the world's population of people living with HIV. Women are more vulnerable to HIV. Women face more discrimination after diagnosis with HIV than men do, and are physically and verbally abused more frequently because of their HIV status than men are.

Women need to be involved in the response.

We need trained positive women counsellors at every testing site where significant numbers of women are diagnosed with HIV, so that those newly diagnosed can meet somebody in the same situation, and we can start to break down the stigma and barriers at the point of diagnosis.

Every two years, scores of people around the world work towards creating a new International AIDS Conference programme.  Has the AIDS Conference become a self-perpetuating industry ?  Is it possible to halt writing more and more policy documents and start putting these resources into breaking down the stigma at grassroots level with peer-led programmes like Stepping Stones and mother's clubs?

The upcoming conference has a small but powerful line-up of HIV-positive women presenters from all over the world. Unfortunately what it does not have is a large contingency of women living with HIV to meaningfully engage in the debates and discussions that are really needed at every level.

Perhaps with the realisation of the imbalance in HIV-positive female delegates at the conference, we will do better next time. We need to ensure there is positive discrimination towards women living with HIV, enabling them to speak in the public arena about how women on the ground are making a real difference in tackling the response to HIV.

This article is part of 50.50's long running series on AIDS Gender and Human Rights exploring the ways in which global policies ignore the gender dimensions of the pandemic, and the impact this has on women's human rights. We are publishing daily during the 2014 World AIDS Conference in Melbourne July 20-25.