Introduction

Multiple Sclerosis is associated with a number of high costs. In 2008, MSIF commissioned RTI International to undertake a comprehensive literature review identifying the current state of research in the epidemiology and economic impact of MS worldwide. This report, released to mark World MS Day 2010, provides independent quantitative evidence for estimating the global economic impact of MS.

Findings of the study are summarised below. To read the full report and executive summary click here.

Total costs of MS varied widely across countries for which studies have been conducted but are substantial in all countries. The total (prevalence weighted) average annual cost per person with MS in 2007 (based on existing studies from 15 countries) was $41,334. Over a lifetime it is estimated that the average financial cost of MS in high income countries is more than $US 1.2 million per person. Loss of employment, or early retirement, is considered the single largest cost factor contributing to this financial cost.

Costs of MS

Types of costs were divided into three broad categories: direct, indirect and intangible costs, with the view to understand more fully the kinds of costs that MS demands of the individual and society.

Direct costs
Direct costs are those incurred by the individual or society as a direct result of the disease. In the report these costs were divided into medical and non-medical subcategories and cover everything from visits to neurologists to the costs of installing wheelchair ramps at home, and the value of care-giving provided by family, friends or professional carers. The responsibility of caring for the person with MS often falls on those closest to him/her and this can affect the carers’ ability to work. Often carers are forced to work shorter hours in order to care for their loved one, or increase working hours to compensate for their loss of income. For carers it is essential that employers are understanding, supportive, and flexible where possible to enable carers to continue working in order to support those who cannot work themselves. Direct costs accounted for 26% to 87% of the total costs of MS

Indirect costs
Indirect costs, which accounted for 13% to 74% of total MS costs, are those costs which are related to MS but cannot be attributed directly to the disease itself. Loss of work is often the most costly contributor to the overall cost of MS since the average age of onset of MS is 29.2 and can dramatically affect or curtail the working life of the individual. The symptoms of MS, which can include physical disability, fatigue, cognitive impairments, transportation difficulties and speech impairments, can make finding and retaining employment difficult especially where employers do not support the changing needs of the employee.

The costs incurred can include short-term and long-term absence from work during periods of relapse, reduced working hours, changing the type of work to a less physically challenging and stressful nature (often at a lower pay), and early retirement.

Intangible costs
Intangible costs are those costs that are often most difficult to measure and can include changes to the quality of life of both the individual and his/her friends and family. In the 13 studies that were analysed with relation to quality of life, several patterns emerged. Firstly, the impacts on physical functioning are larger than those on social functioning or mental functioning, and secondly that physical quality of life deteriorates as the disease progresses over time. Significant impacts on social and mental functional were also found over time. These studies show that a diagnosis of MS does not necessarily affect the ability of the individual to engage socially or mentally, but that physical engagement may be the biggest barrier to activity that the individual faces - especially in the early stages of the disease. With this in mind, it is important that employers offer a variety of solutions to make work more accessible to those with physical disabilities.

The Way Forward

MSIF hopes that the report will be used by people affected by MS, national MS societies and governments to highlight the economic impact of MS nationally, regionally and globally and to develop initiatives to improve the quality of life of people affected by MS.

These initiatives could include (but are not limited to):

Employers

• educating employers about the nature and symptoms of MS and its impacts on family members and carers and persuading employers to develop policies to protect the rights of people with MS and other chronic diseases and their carers


• encouraging employers to provide flexible disability and workplace benefits and job modifications or accommodations (e.g. flexible work schedules, accessible work areas, adaptive aids, appropriate room temperature, etc) to enable people with MS (and their carers) to remain in work for longer

• improved government policy on resource allocation and better integrated healthcare service delivery that is cost effective, accessible and available to all people with MS, with a view to keeping them in employment

• strategised / prioritised funding for research into the understanding of the causes of MS and development of better treatments, including treatments that may slow MS progression to delay people’s exit from the workforce


• cost benefit studies of therapies for MS and of benefits of early treatment


• studies on economic impact of MS in individual countries where the data doesn’t exist (these studies can be used to raise awareness and in health policy decision making). RTI developed a costing tool to help estimate the costs of MS in countries for which data is not available