Participants supported healthcare workers being paid and supported to ensure a higher continuity of care. As Leshner commented, “Stipending of the community health workers is an essential phenomenon. You cannot do it with volunteers alone.”

Participants also believed technology has a key role to play in supplementing this education, be it via mobile phone applications or Internet or DVD-based training or educational materials. As Leshner said, “There are a lot of ways in which we can do a better job of putting information in accessible and understandable ways and [of] find[ing] ways in which to use information technology more concretely.”

The formulary of medications to treat MNS disorders needs to be improved, and demonstration projects need to be established to improve the reliable availability of medications in rural areas. Major, broad improvements to the quality of MNS care in SSA are a major challenge, but they are not insurmountable. As mentioned, many of these pieces are in place, and the outlines of future research and programs are also in place. What is most needed now is the support to drive them forward.

Throughout the world, advocacy plays an important role in improving care in all diseases, and this situation is no different. Champions are needed to bring relevant issues in front of the people who can make the needed changes in each country. “There needs to be a voice in leadership at the policy level, and there need to be advocacy groups that will argue these causes,” pointed out Leshner. But leaders are needed at the local levels as well. Leshner went on to say, “My own experience is that advocacy by patients—by members of patients’ families—is the most effective form of advocacy.”

Educating the general public about MNS disorders is an important step to fighting the stigma that afflicts patients with MNS disorders. Change is a long process, but by continuing the hard work that has already begun, advances can and will be made—and the goal of providing quality care to those suffering from MNS disorders will be achieved.



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