Impact of Advocacy on the Microbicides Field

1. Impact of Advocacy on the Microbicides Field Microbicides 2006 Pre-Conference April 23, 2006

2. The Global Campaign for Microbicides We are: A unifying platform for NGO activism and civil society interaction with scientific community and other stakeholders Our goals are to: • Raise awareness and mobilize political will for increased funding for microbicide research and eventual access; • Create a supportive policy and user environment for the timely development, introduction and use of new prevention technologies; and • Ensure that as science proceeds, the public interest is protected andthe rights and interests of trial participants, users, and communities are fully represented and respected.

3. Advocacy for many reasons • Mobilizing resources • Focusing attention on access, acceptability and affordability issues • Ensuring that eventual consumers’ voices are heard throughout development • Ensuring that the public interest is protected and respected

4. Frederick Douglass – 1818-1895US abolitionist & women’s rights advocate “Power concedes nothing without a demand. It never did and it never will.”

5. In the beginning……. Late 1980’s “If they can put a man on the moon, why can’t they make something we can use to protect ourselves from HIV?” Early 1990’s: Women’s Health Advocates on Microbicides (WHAM) First ethics consultation pre-dated launch of phase 2 or 3 studies of novel microbicides in developing countries

6. Advocacy work on ethics now…… • Build capacity in the activist/community sector for ethical deliberation and debate • Help give voice to community and civil society perspectives on trial design and ethics issues • Help forge consensus around ethical debates that could delay progress • Negotiate difficult line between urgency of the HIV epidemic and maintaining rigorous ethical standards

7. Preliminary annual funding needs Annual funding needs to double! All combined: Need $280 million

8. Making community voices heard… • In 2000 – concern about ever repeating the N-9 trial experience • Advocates called for “early DSMB look” for Savvy Phase 3 trial

9. 2005: Some advocates halted trials in Cambodia & Cameroon

10. Demand for Partnership between researchers and community CABs alone are purely advisory Authentic partnerships require: Activities and mechanisms that promote collaboration between communities, civil society, and research teams in decision-making, problem-solving and program implementation

11. These partnerships shape how trials are done by… • Building trust between community and researchers • Ensuring exchange of relevant information • Protecting the rights of trial participants • Supporting ethically sound and scientifically rigorous research that meets public needs • Providing tangible benefits to the community as well as individual participants • Reducing vulnerabilities of participating community • Preparing stakeholders to advocate collaboratively for resources, policy changes and preparing for access

12. Advocates protect the public interest…. • Spotlighting unproven product claims: • Lime juice • “Freedom Lube” • Genvia perhaps? • Addressing policy barriers to optimal trials • Laws against clean syringe access • US restrictions on HIV prevention funding

13. Advocates raise emerging issues… • Need for increased investment in rectal microbicide research • Need to attend NOW to concerns about microbicides for HIV positive women and men • Need to think NOW about impact that microbicide introduction will have on sex workers

14. Advocates contribute to success by… • Increasing pressure for adequate resources • Working to assure adequate Standard of Care • including ARVs, contraception & sexual health care - which helps participant recruitment and retention • Fostering engagement among stakeholders which • minimizes controversy and risk of disruption • informs essential acceptability and access work • Leads to collaborative advocacy to funders • Highlighting new issues and priorities

15. Going forward……. • Joint literacy training • Community literacy for researchers • Research literacy for communities • Joint advocacy efforts • Research alone can’t correct health disparities BUT • Activists, researchers and host communities can jointly advocate to governments and funders to do this