SCI Foundation is now Unlimit Health. Learn more about what the change means for our ongoing efforts to eliminate neglected tropical diseases
By Ashley Preston, Programme Advisor, SCI Foundation
I started collaborating with the Ministry of Health in Kenya in 2021 as part of the ADOPT research project. The project is led by the Pediatric Praziquantel Consortium (PPC), of which SCI Foundation is a member. The PPC brings together pharmaceutical companies, governments, researchers and NGOs to reduce the impact of schistosomiasis by developing and providing access to a new treatment for infected infants.
Praziquantel has been used as a treatment for schistosomiasis for many years by health programmes in affected countries. However, it is not suitable for preschool-aged children (at the age of six and under) mainly due to its bitter taste and the large size of the tablet posing a choking hazard.
Clinical trials for the potential new pediatric treatment option have been completed, providing evidence that it is safe and effective.
Now, through ADOPT (funded by the European & Developing Countries Clinical Trials Partnership and the Global Health Innovative Technology Fund), there is an exciting opportunity to work with ministries of health and partners in three endemic countries – Kenya, Uganda and Côte d’Ivoire – to collect further evidence to support effective access to and delivery of this new investigational drug for preschool-age children, once it has been registered.
In order to ensure access, it is critical to take into account the perceptions and needs of affected communities. To be able to do that, we need an effective strategy to raise awareness and engage the community.
Recently, I travelled to Nairobi in Kenya to support the Ministry of Health as they kicked off their plans to develop an effective advocacy and social mobilisation strategy for roll-out of the potential new pediatric treatment option, once approved. The activities started with a two-day kick-off workshop, led by the Division of Vector Borne and Neglected Tropical Diseases within the Ministry of Health, and attended by other key partners including the research institutions African Institute for Health and Development and Kenya Medical Research Institute, county representatives from the Ministry of Health, and other divisions including the Department of Disease Surveillance (polio campaigns), the Department of Neonatal and Child Health (known as Malezi Bora) and the Division of Community Health Services.
The workshop led to fascinating discussions around existing community perceptions, how current social mobilisation strategies targeting preschool-age children work, and what can cause barriers to uptake of the potential new treatment option.
It is clear that communities trust their community health workers, but people still have reservations particularly in relation to side effects, based on experiences of schistosomiasis treatment among school-age children through mass drug administration programs. Communities and religious leaders can be powerful allies if engaged successfully, but other health campaigns have met serious challenges having failed to engage key community groups effectively.
Rumours that medicines or injections are secretly intended to sterilise children or that a disease is caused by witchcraft, have been extremely damaging to other health campaigns. If such misinformation is allowed to spread, it can derail the success of the programme.
The importance of treading carefully and thoughtfully can therefore not be understated. We are aware that treating infants and toddlers is a very sensitive area and introducing a new medication can raise understandable concerns and fears.
However, the PPC are also passionate about reducing the effects of the disease because we know that infants and toddlers suffer without treatment. Therefore, it’s vital to come to a shared understanding of the importance of this potential new treatment option with the community and the caregivers of children as of six years of age and under.
In my view, although social mobilisation may often be overlooked in healthcare programmes, it is a crucial element of the implementation process. If the perceptions of the communities are not taken into consideration, and their concerns are not listened to, achieving the PPC vision to reduce the global disease burden of schistosomiasis will be challenging.
So, what’s next? The PPC and ADOPT partners will continue supporting the Ministry of Health to gather all the key information, from the different levels of the health system and the community, to be able to develop an effective advocacy and social mobilisation strategy. This will be used to support future delivery and access of the potential new treatment option in affected communities, once registered.