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ICW Global Speak Up

3 July 2018

Nothing For Us Without Us

Are you a woman or girl living with HIV?

Please consider filling this important survey on the link here and add your voice and participation by sharing your values and preferences.

The World Health Organization (WHO) is currently updating its HIV treatment guidelines and would like to understand how Women living with HIV feel about the advice given in these guidelines. WHO are interested in your views on the combination of drugs for WHO recommendation as the first choice of antiretroviral therapy (ART) for treating HIV.

You may have responded to a similar survey in early May however Since then new evidence about possible side effects connected to a relatively new drug, Dolutegravir, (DTG) has come to light. In recent weeks however a potential safety issue was identified linked to possible birth defects in babies born to women taking dolutegravir. These birth defects, called neural tube defects, happen very early in pregnancy, in the first four weeks, when a woman will usually not yet know that she is pregnant.

Please note that Neural tube defects are serious abnormalities that affect the development of the baby’s brain and spinal cord. The safety issue with dolutegravir presents a potential risk for women living with HIV who are on DTG, but more research is needed before WHO and other authorities can say that this is a     definite risk and give definitive guidance to treatment programmes and women living with HIV.

WHO, in consultation with ICW and other community organizations, felt it is important to update and repeat this survey so that women living with HIV can express their opinions about treatment options based on this new evidence.

We need to have this data collected to help inform the guideline development process.

Kindly fill in the questionnaire and support one or two more women or adolescent girls to fill it. You can also share the link with the women and girls in your network and help get our collective women’s voice heard in this very important process that impacts our lives and that of our children.

Please see the Values and Preferences survey link here

For more information kindly get in touch with our Advocacy Manager Florence Anam on

You can help us amplify our impact and improve the lives of women and girls living with HIV

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