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Defining the role of civil society in HAART provision in HIV prevention trials

Defining the role of civil society in HAART provision in HIV prevention trials. Morenike Ukpong Nigeria HIV Vaccine and Microbicide Advocacy Group. Declaration.

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Defining the role of civil society in HAART provision in HIV prevention trials

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  1. Defining the role of civil society in HAART provision in HIV prevention trials Morenike Ukpong Nigeria HIV Vaccine and Microbicide Advocacy Group

  2. Declaration The views expressed here are entirely mine and do not represent the views of the organisation I represent and should therefore not be quoted as representative of NHVMAG’s position

  3. HAART provision for trial volunteers.. Questions? • Where the trial sponsors are committed to providing ARV to seroconverters, who provide for • Those who screen out because they are HIV positive? • Who provides for the family members?

  4. Another question … 2. Where trials are committed to ARV provision for seroconverters, how are these commitments going to be tracked, delivered, paid for, monitored and continued years after the trials are over?

  5. I think…. The roles of the civil society in ensuring HAART access by seroconverters during HIV prevention trials can be defined in trying to answer these questions

  6. Roles In defining the role of civil society (and other actors) within the framework of EQUAL partnership in HIV prevention research agenda, there is a need to define responsibilities Within the context of what is evolving, the community/civil society is asking to come on board the research agenda as EQUAL partners. It therefore needs to define for itself, the roles it can play in this partnership

  7. Access to HAART Roles can be defined within the context of access to HAART • While trial sponsors would like to provide treatment to seroconverters, there must be a conducive environment for this. Therefore civil society can advocate a. for defined national policies to address treatment access during clinical trials as the consensus seem to be about country level definitions on the specifics of this process

  8. Advocating for national policies.. This is because HAART access during HIV prevention trials is more of a moral negotiation issues which happens within country context rather than that of a moral obligation by research sponsors. Therefore to facilitate HAART access for trial volunteers, there is a strong need for the development of national HIV prevention trial plan or some guidelines or SOC which defines this within the local context.

  9. Seroconverters b. For changes in donor policies especially that of the US government (which presently sponsors a lot of these clinical researches) which prohibits the use of clinical funds AFTER the end of a trial. c. For the legalisation of the rights trial volunteers who most often are vulnerable populations that may not be able to openly access these treatments when the need arise

  10. Second role Even within the research agenda, the civil society on board the research planning process must see to it that well structured plans are developed to address: • Adequate and optimal care for volunteers who screen out of trials • Adequate and optimal care for seroconverter’s family • Implementation mechanisms for ART access even when the clinical trial ends

  11. Third role The civil society should just not ensure that the second role identified is achieved, but must follow through to facilitate effective networking with community organisations within the trial sites that provide care and treatment for infected individuals who are screened out or who seroconvert during trials taking cognisance of the GIPA principle.

  12. Forth role I have defined the need for civil society to advocate, help develop and facilitate relevant processes. Finally, it is important that the civil society must act as a watchdog and monitor the process thereby ensuring that all stakeholders play their respective roles, are accountable and are transparent in the process

  13. Implications …. No one organisation can do all these. Partnering with civil society for HAART access may therefore mean the researchers may be involved with multiple community based organisations in a manner that is effective and coordinated. Each research efforts would need to define these mechanisms within the local context.

  14. Conclusion.. While the civil society may have identified roles in ensuring access to HAART by trial volunteers during HIV prevention trials, I think we have a greater role in ensuring that appropriate benefit packages are defined for communities through a transparent, consultative process. Access to ART by seroconverters are long term promises with some possibly unacceptable terms. The community should truly decide on needed benefit packages.

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