Multiple sclerosis (MS) care and research is lagging behind in the Middle East compared to countries in Europe and North America, according to research presented at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2016 Congress taking place in London through Sept. 17.
Two presentations in a session titled “Challenges for care and research in MS outside Europe and North America” (Session 1) painted a picture where lack of both awareness and funding make life difficult for the increasing number of MS patients in the region, as well as for researchers working to understand the disease.
In the talk “Challenges for multiple sclerosis care and research in the Middle East,” Bassem Yamout, with the American University of Beirut Medical Center in Lebanon, stated that the increasing number of patients developing MS in the Middle East is putting a strain on resources.
There is also a lack of awareness about MS among medical professionals, often leading to wrong diagnoses or a long path before a diagnosis is set. He noted that this lack of knowledge needs to be dealt with in multiple ways, ranging from local educational symposia to grants allowing MS specialists to get training at North American or European MS centers.
A large part of Yamout’s presentation concerned treatment. The cost of MS therapies are supposed to be covered by government agencies in most of the Middle East countries. But the current economic instability there, along with the hefty price tags of many MS drugs, particular newer ones, has made governments hesitant to reimburse patients for expensive MS treatments.
Such a lack of funds also has a negative effect on the general MS healthcare quality, including the availability of specialists, radiological facilities, physical therapy centers, and other support services. Since the lack of awareness about MS is also widespread among the general public, the use of unconventional or unproven treatments is common. Yamout also noted that even patients with access to MS treatments often don’t adhere to the therapy.
Legislation regarding the rights of disabled people to not be discriminated against and have access to public facilities and jobs is also lagging.
Research, Yamout pointed out, is hampered by the lack of resources — financial and human alike. In addition, well-structured, large MS patient registries are lacking in the Middle East. This is, however, likely to change, as the Middle East North Africa Committee for Research and Treatment in Multiple Sclerosis (MENACTRIMS) recently started a project with the aim to establish and unite registries in the region.
In the second talk, from the Tehran University of Medical Sciences in Iran, Mohammad Ali Sahraian confirmed many of the points made by Yamout. The presentation, “Challenges for care and research in MS in Iran,” built on data gathered in a survey of 650 MS patients, as well as researchers focusing on the disease.
The survey was composed of 20 questions, aiming to identify the most important challenges MS patients meet. The main issues were the high cost of medications, a lack of telephone-based counseling, and the difficulty in getting access to a proper medical team.
Researchers, conversely, were concerned that a lack of awareness, as well as compliance, to research and investigations were slowing research efforts. There were also problems linked to research infrastructure, as university professors and assistants did not get enough dedicated time for research. Projects also took a very long time to be approved.
“The research infrastructure, including human resources, laboratories, equipment and funding is also lacking in the Middle East, and is another major challenge that need to be addressed in the near future,” concluded Yamout.