Siane: the bridge connecting science and communities
Dichaba Siane is the Botswana-Hardvard AIDS Institute Partnership Community Advisory Board (CAB) Chairperson and also a representative of ICAB and CSS (Community Scientific Sub-Committee) in the US. He talks to SunHealth about his work.
Tell us about your role as the chairman of the CAB and why it is important for HIV vaccine/cure development?
As the CAB Chairperson, my role is to organise meetings with the executive committee where we make plans for the year as well as the budget for the board. We have regular closed meeting sessions with principal investigators and study coordinators to discuss protocol and new updates from ongoing studies.
The purpose of CAB is to provide HIV/AIDS life experiences that will assist in the development and implementation of research, build community capacity to provide input and support to the researchers and also bridging the gap between the scientific community and the public, where we as the board sit down with involved scientists to discuss protocol and disseminate information to our respective communities.
We have confidentiality grounds that we adhere to as community board members which do not allow us to disclose some of the things we discuss in our meetings. We also seek permission from village gatekeepers such as village Chiefs before carrying out any outreach in a particular village.
Discuss the importance of establishing a positive relationship between communities and research scientists? It is very important to have a positive relationship between communities and research scientists because the community is doing us a favour in allowing us to carry out our researches in their environment. It also allows us to translate protocol to the community and communicate ethical codes to scientists.
This is very important to the HIV cure/vaccine development because being an advocate for people living with HIV, I see the potential for HIV treatment through therapeautic interventions aimed at prevention and clearance of HIV reservoirs in HIV infected infants/children and adolescents.
For example, the results of one of our studies from HPTN 052 led to the WHO (World Health Organisation) starting a programme called 'Treat All'. This is where I feel as the CAB chairperson I played the greatest role.
What do you find most challenging about the work you do in support of HIV clinical research? Being a buffer of sorts between communities and scientists as this is where provisions and guidelines facilitate bringing two worlds together.
Both sides have varied practices, cultures and beliefs on how best to reach an end goal; the excitement is to make one work with consideration of the other. Advocacy in remote areas is also quite challenging because majority of them are uneducated, trying to explain protocol is a problem sometimes.
What do you wish other people knew about your work? The efforts of clinical research from basic concepts to large scale trials are extremely important investments towards finding health solutions. All forms of medical treatment we enjoy today are a different type of miracle that takes a lot from varied scientific fields, communities who take part, civil society, media and most importantly people and governments who fund this work.
Every individual in the world has a role to play and more people are needed to play that role so we can reach a solution faster. What kind of contribution can the science community make to promote integrity? And what would you like politicians to do in order to promote integrity as an integral dimension of excellence in research?
The science community has contributed to integrity through programmes like PMTCT and administering of ARVs to prevent HIV infections, thereby preserving the integrity of living without the virus. I would like to see politicians rally behind scientists and my board, so that they also can be knowledgeable about HIV related issues as an integral dimension of excellence in research.
If you could change one thing in the African research ecosystem, what would that be? The one thing I would change in the African Research ecosystem would be the resources, to increase resources towards these researches and further educate the communities in the importance of these researches.
What diverse approaches do you use in order to disseminate research results raise awareness and tackle issues of stigma in communities? We try to diversify our approach by organising outreach activities, holding kgotla meetings and visiting various institutes such as schools and clinics to try and raise awareness on HIV issues to reduce the stigma which is caused mainly by a lack of understanding. I have also learnt the importance of diversity in carrying out our researches, for example interacting with people of different sexual orientations.
How do you perceive Botswana’s needs in terms of HIV/AIDS advocacy today? How about Africa as a whole? HIV advocacy in Botswana today is doing very well there has been significant progress over the past few years in dealing with issues of HIV/AIDS. However resources are still not enough to reach remote areas which are affected as well.
Africa as a whole is improving considerably also, taking from a number of networks doing clinical researches supported by NIH and other organisations.
Looking at how far we have come as a country to fight HIV/AIDS, the milestones we have made, what do you think is still keeping us from significantly reducing our rate of HIV infections? A lack of adherence to treatment is what is holding us back from significantly reducing our rate of HIV infections. This is the result of a lack of knowledge and education, caused mainly by a lack of resources to carry out that education especially in remote areas.