Prevalence of MS Increases to 2.3 Million People Worldwide, according to MSIF 2013 Atlas of MS Survey
Results from the 2013 Atlas of MS study reveal that the estimated number of people living with MS worldwide has increased 9.5% from 2.1 million in 2008 to 2.3 million in 2013. The global median prevalence increased from 30 (in 2008) to 33 per 100,000 (in 2013). Prevalence (how many people have MS at any given time) was higher in North America and Europe (140 and 108 per 100,000 respectively) and lowest in Sub-Saharan Africa and East Asia, at 2.1 and 2.2 per 100,000 respectively.
The Atlas of MS survey is a large international study conducted by the Multiple Sclerosis International Federation (MSIF), a global network of MS organizations with 44 members worldwide, including the US National MS Society. Representing 79% of the world’s population, the study includes data collected from 124 countries, including 12 new countries added since the 2008 survey and 20 countries that participated in 2008 but did not provide an update in 2013.
The Atlas of MS database (www.atlasofms.org) provides information on the epidemiology of MS and the availability and accessibility of resources for people with MS at country, regional, and global levels. The final version of the questionnaire covered a wide range of issues organized into the following topics: epidemiology, services and support, diagnosis, clinical management, treatment, quality of life, Neuromyelitis Optica (NMO) and pediatric MS.
Not all countries were able to provide data related to newer topics such as NMO, including USA and Canada, or pediatric MS. Data related to incidence (number of persons diagnosed each year) was somewhat more limited than that of prevalence with only 52 of the 104 participating countries providing incidence data. And in some countries, such as the United States, incidence and prevalence data may be outdated.
MSIF emphasizes that incidence data is important for monitoring changes in rates of MS over time and in specific populations, where it can provide more accurate measures than prevalence. It is also reasonable to assume that resources for MS patients may be limited or nonexistent in the 89 countries who did not participate in the 2013 survey.
Key findings from the survey:
- MS is found in every region of the world, however one in five countries has no national or local organization supporting people with MS. The number of countries with such organizations has increased since 2008, from 73% to 80%, and new groups are being established.
- The 2:1 ratio of women to men with MS has not changed significantly since 2008, although in some countries women are three times as likely to develop MS than men.
- Average age of MS onset is 30 years, although up to 5% of people with MS develop it before the age of 18. The most common presenting MS symptoms were sensory (40%) and motor (39%), while the least common were pain (15%) and cognitive issues (10%).
- There are an estimated 7,000 people under 18 with MS in the 34 countries that provided data, mainly in Europe, Eastern Mediterranean and North America. However, many countries do not have robust systems to monitor MS, such as patient registries.
- The number of neurologists worldwide has increased by 30% since 2008 and the number of MRI machines in emerging countries has doubled. High income countries (income = > US $12,616) have 100 times more neurologists per capita than low income countries.
- Substantial inequalities exist in the availability of and access to disease-modifying therapies. Of the 90 countries that provided a reason why not all people with MS are receiving DMTs, affordability was ranked as the most common by 46%, which rose to 86% in the 21 low and lower middle income countries that answered this question.
- The cost of disease-modifying therapies are subsidized or fully funded by the government in 76% of countries. Government funded DMTs were available in 96% of high income group countries, but in only 45% of lower middle income group countries and in none of the low income group countries.
- More research is needed to measure the indirect costs of MS and to understand the sources and causes of inequalities in access to support, healthcare services and therapies.
- Epidemiological studies and the establishment of registries are needed to more closely monitor MS and related disorders.
Take some time to peruse the database on the Atlas of MS website (www.atlasofms.org). It is fascinating and indeed "the most extensive worldwide survey of the disease [which] provides a clearer picture of MS around the world and how it is being diagnosed and treated."1-3
Have you ever experienced any of the following financial struggles due to your MS?