This article outlines progress in realizing the sexual and reproductive health and rights of women and girls living with HIV over the last 30 years from the perspective of women living with HIV. It argues that the HIV response needs to go beyond the bio-medical aspects of HIV to achieve our sexual and reproductive health and rights, and considers relevant Joint United Nations Programme on HIV/AIDS (UNAIDS), World Health Organization, United States President’s Emergency Plan for AIDS Relief (PEPFAR), Global Fund and other guidelines, what engagement there has been with women living with HIV and whether guidelines/strategies have been adopted. It has been written by women living with HIV from around the world and a few key supporters. Co-authors have sought to collate and cite materials produced by women living with HIV from around the world, in the first known effort to date to do this, as a convergence of evidence to substantiate the points made in the article. However, as the article also argues, research led by women living with HIV is seldom funded and rarely accepted as evidence. Combined with a lack of meaningful involvement of women living with HIV in others’ research on us, this means that formally recognized evidence from women’s own perspectives is patchy at best. The article argues that this research gap, combined with the ongoing primacy of conventional research methods and topics that exclude those most affected by issues, and the lack of political will (and sometimes outright opposition) in relation to gender equality and human rights, adversely affect policies and programmes in relation to women’s rights. Thus, efforts to achieve an ethical, effective and sustainable response to the pandemic are hindered. The article concludes with a call to action to all key stakeholders.