A snapshot of the birthplace of modern patient advocacy

Monday, 4 July 2016

Many of the patient advocacy strategies and interventions used today were first used and developed in the Castro District in San Francisco, California, USA in the 1980s. Today an enormous rainbow flag flies proudly over the Castro proclaiming its confidence, vibrancy and community spirit.

Memories linger in the Castro of a dark time when the community faced annihilation from inside and out. In the 1980’s the community was under attack from an unknown and devastating disease that was killing its young men, and attacked by the media, politicians and society that forced it to retreat and to the brink of collapse.

With their backs to the wall, the community fought back. A number of activists and patient advocates got together and developed creative advocacy strategies, tactics and organisational approaches to rewrite the book on patient advocacy.  They pursued one of the longest and most successful social and patient advocacy campaigns against acquired immune deficiency syndrome (AIDS) in history.

Instruments of change

They developed some key instruments of change that many people use today:

  • Patient-centric, culturally and linguistically sensitive awareness, information, guidelines and education campaigns
  • Through-the-line media and events campaigns, a highlight of which was the Names Quilt
  • Collaborative partnerships across industries and groups
  • Community based health literacy programmes, screening and counselling
  • Patient Registers: used not only in epidemiology, but also in contact tracing
  • Expert patient advocates who engaged in campaigns, health literacy, and patient education and support programmes
  • Social marketing for health promotion and policy advocacy
  • Parliamentary briefing papers
  • All Party Parliamentary Groups
  • Strategic health litigation
  • Gerrymandering to gain local power and control over health legislation

A lasting legacy

The legacy of this advocacy is monumental. What was once a certain death sentence has now become a chronic illness that can be managed successfully with effective antiretroviral therapies and psychosocial support.  San Francisco’s biotech industry is on the brink of finding a cure. This will be the global legacy of the 1980’s patient advocates from the Castro.

Find out more

Read our long-form article exploring the Castro community’s plight for more information.

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