Collective voices  

The HIV/AIDS epidemic of the 1980s and 1990s transformed the role of patients in healthcare. As people died while research and drug approval moved slowly, patients and their communities refused to remain passive.   

Direct-action groups such as ACT UP campaigned for accelerated research and drug approvals and called for more diverse patient groups in clinical trials. Activists also protested the high drug costs that were a barrier to life-saving treatments.   

Patients, activists and medical allies challenged the traditional view that doctors should make decisions on behalf of patients. More collaborative approaches to healthcare were demanded.    

The AIDS Quilt UK, inspired by the American AIDS Memorial Quilt, gives communities a powerful and personal way to remember those who have died. The quilt makes visible the scale of the epidemic to the wider public.  

Modern advances in HIV prevention and treatment have transformed lives, driving United Nations targets to end AIDS as a public health threat by 2030. However, global treatment inequalities and stigma persist. The history of HIV/AIDS activism reminds us that patients and healthcare allies are powerful agents of change –ensuring that the patient voice is heard.