Background:
The Atlas of MS 2013 was made available to the public during the annual meeting of the European Committee for Treatment and Research in MS (ECTRIMS) held in October of this year. The Atlas is a comprehensive overview of population patterns of MS, as well as the distribution of resources to diagnose, inform, treat, rehabilitate, support and provide services to people with MS, around the world.
The extensive monograph contains information that was first collected in 2008 by the Multiple Sclerosis International Federation (MSIF) in partnership with the World Health Organization, and has been updated to reflect recent advances in MS treatment and now includes data from countries that were not surveyed in 2008. In addition, information on pediatric MS and neuromyelitis optica (NMO) is presented.
Insights and Objectives:
The purpose of the Atlas of MS is to serve as a central database of worldwide information on MS, while identifying and addressing gaps in medical and supportive resources. Ultimately, the knowledge obtained from this work will:
- Assist governments and policy makers to develop campaigns and initiatives that will provide better support for people with MS
- Encourage researchers to engage in international collaborations such as the Progressive MS Alliance (PMSA)
- Improve medical services and allow for adequate distribution of clinical resources for more effective diagnosis and treatment of MS
- Raise awareness amongst, and increase communications to, necessary stakeholders about the impact of MS around the world
Major Findings:
Prevalence - Where does MS exist around the world?
The MS Atlas first describes worldwide trends in MS prevalence. They note that the number of people with MS around the world increased from 2.1 million in 2008 to 2.3 million in 2013, with the ratio of women to men remaining at 2:1. This finding coincides with what has been reported in the literature. It is not clear if this increase is due to better diagnosis and reporting, or to other causes.
The Atlas point out that MS is present all around the world, but varies greatly between regions. North America and Europe have the highest prevalence of MS, and Sub-Saharan Africa and East Asia have the lowest prevalence. Recent findings have also demonstrated that prevalence varies within regions and across latitudes.
Treatment – How is MS managed around the world?
The second half of the MS Atlas summarizes the treatment of, and support for, people with MS around the world. In the majority of the 52 countries surveyed, a professional health care team was available for people with MS. This team can include: a neurologist, MS nurse, physiotherapist, urologist, gynaecologist, ophthalmologist, pharmacist, clinical psychologist, psychiatrist, speech therapist, social worker, pain management specialist, dietician and other related occupations. It notes that availability of specialists does not mean they can be accessed by people with MS. Several countries reported limited access to specialists due to cost, availability, and transportation.
For 76% of countries, cost of disease-modifying therapies (DMTs) was part or fully funded by government. In these countries, at least one first-line therapy was available (interferons and glatiramer acetate); 50% had access to more powerful therapy (natalizumab), and 45% to oral therapy (fingolimod). Government funding varied greatly amongst countries, with most of the high-income countries and none of the low-income countries receiving support from government. Affordability was the number one reason in all countries for not everyone with MS taking DMTs.
With rehabilitation gaining momentum in the treatment of MS symptoms, it was not surprising that 99% of the countries surveyed implemented rehabilitation services. Cognitive rehabilitation was the least practiced type of rehabilitation.
Canadian connection:
Several MS Society funded researchers are doing compelling work to assess patterns of MS in different Canadian populations and across various regions. This critical information provides organizations like the MS Society of Canada a snapshot of MS across the country, and allows for the identification of inadequacies in treatment and services.
"We are seeing the benefits of collaboration between researchers, clinicians and patient organizations like the MS Society of Canada as we work together to align priorities and address the issues of central importance to Canadians affected by MS," says Neil Pearce, National Vice-President, Government Relations, MS Society of Canada.
"This is welcome news for governments across Canada as we work together to improve access to more treatments and advocate for more responsive health & social policies, practices, and programs that can make a big difference in the lives of so many people."
For more information or to find data for your country, region, or the world go to www.atlasofms.org