18 Dec #HVAD2018 South Africa – Smart Partnerships, Meaningful Community Engagement
Commemorating 2018 HIV Vaccine Awareness Day (HVAD), the VARG partnered with Ubuntu Research Foundation (URF), a community initiative led by a group of young women who work in HIV research and have an interest to mobilize multiple key stakeholders and advance health research in the Eastern Cape (EC) province of South Africa. The event was held on 26 May, in Mthatha, a town where HVTN 702 is conducted.
The EC province lies along the Indian ocean coastline and prides itself with a rich heritage, culture, natural and diverse landscapes rich in aqua-culture as well. It is also home to a number of South Africa’s liberation leaders, like Winnie-Madikizela Mandela, Nelson Mandela, Oliver Tambo, Steve Biko and many others.
On the flipside, the province is also one of the poorest, with health rating high on the list of its major challenges. It is home to a population of over 6 million people with a general life expectancy of about 63 years. It has one of the lowest employment rates in the country, experiences a number of health-related challenges with HIV rates estimated at 12.1% and women being the hardest hit, as it is in the rest of South Africa.
This is what motivated Ubuntu Research foundation to facilitate a critical conversation that will challenge various role players who can play a key role in advancing research as part of a response to address health and HIV challenges. In addition to being a host to HVTN 702, the ECHO study is also conducted in the province.
The event brought together multiple critical stakeholders who are influencers at multiple levels in the area, who include the following:
- Walter Sisulu University Faculty of Health Sciences (the dean’s office and post-graduate students)
- The Mayor or representative from OR Tambo municipality
- Eastern Cape AIDS Council, its Civil Society partners and Women’s Sector representatives
- Community Advisory Board members
- Representatives from the Chieftaincy
- Department of Health
Topics of discussion:
- The role of clinical research in HIV, health and communities
- Building broad systematic infrastructure for Research and Development
- HIV Vaccine research and development landscape
- Support for and involvement of communities in HIV vaccine research
- Next steps in supporting current research and sustainability
Key issues that emerged from the panel discussion and group discussions, highlighted:
- what it would take to have the community realize research as one of the critical paths to advancing good health and address its structural drivers.
- there were strong questions from the audience that sought to understand how communities are part of decisions to conduct research as well as
- how to ensure they are not used as a data collection vehicle for other purposes either than benefiting the communities.
There were questions on balancing risk from benefit as part of clinical trial conduct as communities are vulnerable. The question of oversight of CAB members came in to the spotlight as well, highlighting that they are not as empowered to play their role effectively thereby protecting communities, whilst advancing research. The discussions largely focused on community ownership of research, including trial participants who do not receive feedback on research findings. The conversations highlighted the progress on the vaccine research site and an update that the site has been recently initiated to begin the study. Further reference was made to a study that “never came back to share outcomes with the community” and how this can be prevented with HVTN702.
(The trial in question was identified as ISS T-003, an Italian funded phase Il, randomized, double-blind, placebo-controlled trial to evaluate the immunogenicity and safety of a therapeutic, recombinant, biologically active HIV-1 Tat Protein Vaccine in HIV-Infected, Anti-Tat Negative, ARV-Treated Adult Volunteers . The study took place in South Africa and involved the recruitment of 200 participants between 18 and 45 years of age. The total amount of time required for participation in this study was a maximum of 51 weeks (approximately one year). Participants were asked to visit the research clinic at least 12 times during the study including administration of the Tat vaccine, or placebo on 3 occasions, at 4-weekly intervals.)
The meeting recommended that communities should influence the research agenda and this advocacy position should be championed by URF. The meeting also discussed the value of and support for research that is aimed at improving health systems and that research should be made popular in communities for them to understand and support it. Within this discussion, an example of successful research that emerged from and informed by the community in this region was shared Prof. E Blanco-Blanco about a study that effectively addressed diabetes in the Mthatha community, even though due to funding it was not sustained.
- There should be capacity building drive to ensure communities are at the centre of driving research from an informed premise.
- The current HVTN study ought to be supported so as to be a good example of involving communities and have the understand research better.
- All the discussions and next steps mapped out the role URF has to play in its role and was assured of the support from the various stakeholders
- The ECAC chair invited and tasked URF to be a facilitator with the support of the council in reviving the research sector in the province’s AIDS
- council and there will be follow up to this regard from the secretariat.
- The VARG will continue to be a partner in all the URF, especially as they relate to advancing HIV vaccine research.
- Advocacy for Prevention of HIV and AIDS (APHA), was also proposed as a key partner in all HIV prevention and health research
- For all of the proposed work to take place, resources and fundraising was agreed upon as critical and that partnerships between the universities,
- and other partners will ensure the work is taken forward.
- As an important highlight, the fact that May 18 is HIV Vaccine Awareness Day, it was agreed upon that URF will commemorate this day annually.