Access to affordable health care has been a fundamental question for all developed nations, and remains particularly relevant to the United States today. It is crucial that patients with chronic or life-threatening illnesses have continuous access to quality health care, and that the cost of that care does not become burdensome or unbearably costly.
The National Multiple Sclerosis Society gives a simple definition for multiple sclerosis. It is “an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.” It is also a disease that affects at least 2.3 million people around the world, with the risk of disease for the average person in the United States being estimated at one in 750.
Since multiple sclerosis is an unpredictable disease, results are measured by the course that the disease takes, and how the symptoms affect the quality of life in the individual. This means that patients with MS require frequent evaluations, as well as a willingness to embrace new treatments.
Symptoms are progressive and occasionally permanent. As the disease worsens, so does quality of life. Sometimes symptoms can regress, and sometimes they can relapse. It is imperative that no matter what the stage or condition of the individual living with multiple sclerosis, patients have access to health care and an awareness of the relationship between the severity of their disease and the financial burden that it can have.
Quantifying the Effects of Multiple Sclerosis
A recent study has been published in the Multiple Sclerosis Journal relating an increase in severity of the disease to a higher financial burden on the individual. The study, titled “New insights into the burden and costs of multiple sclerosis in Europe,” gathered self-reported data from over 16,000 patients in more than 16 European countries.
Environment is at the center of the mystery surrounding the development of multiple sclerosis. Years of analysis have suggested that there is a relationship between geography and development of MS, with European nations and the United States at the center of those affected. While it is not impossible for diverse ethnic groups to develop MS, it is far less likely, with the majority of cases originating from peoples of European descent who have geographically relocated somewhere along their family history.
The severity of the disease was assessed through the Kurtzke’s Expanded Disability Status Scale (EDSS). This method has been the standard in quantifying the extent of disability since it was developed by John F. Kurtzke in the second half of the 20th century. The EDSS functions on a 10-point scale, where 0 is absent of any symptoms and 10 is death due to MS.
The patients who participated in the study were separated into three groups based on severity of their MS. Patients who scored between 0 and 3 were placed in the ‘mild’ group. Scores between 4 and 6.5 were deemed ‘moderate’ cases, and individuals scoring between 7 and 9 were ‘severe’ cases.
The clinical meanings of these numbers pertain to a progressively level of disability. Though the study split patients into three groups, the EDSS steps are split evenly between the first 5 points and the latter 5 points. A score of 4.5 is clinically defined as fully ambulatory without aid, though some limitations may be present. A score of 5.0 clinically denotes impairment of a full day of activity, and only being ambulatory without aid for 200 meters. Beyond a score of 7, which places patients in the ‘severe’ category in the study, individuals are restricted to wheelchairs and no longer able to walk.
In addition to the EDSS, patients scored their quality of life using the EuroQol Five Dimensions questionnaire. This allowed the study to compare the quality of life results of individuals living with MS against healthy individuals.
The Relationship Between Cost and Severity
Researchers were able to determine that the average cost per year for individuals with a mild case of multiple sclerosis was 22,800 euros, or approximately $26,300. Individuals with a moderate case of MS averaged 37,100 euros annually, or about $42,800. Finally, individuals with a severe case of multiple sclerosis faced average yearly costs of 57,500 euros, about $66,340.
The progression of the disease was found to have drastic effects on quality of life as severity increased. In mild cases of multiple sclerosis, the difference in quality of life was negligible when compared to scores of the general populous. However, when the disease became severe, quality of life plummeted to below zero.
Perhaps the most significant factor in lower quality of life was pervasive fatigue and cognitive difficulties in almost all patients with MS. The difference between mild and severe groups is in the amount of care required, and the ability to walk or perform self-maintenance tasks.
The study also revealed differing levels of impact that health care accounted for as the disease progressed. Patients in the mild category found that their health care accounted for 68% of their total costs, while health care for patients with a severe case of MS accounted for 26% of total costs. Squarely in the middle of these two groups, health care for individuals with a moderate case of the disease found health care to comprise 47% of their total cost.
Researchers wrote that the “costs were dominated by production losses, non-healthcare costs and DMTs,” which is an acronym for disease-modifying therapies. The production losses stemmed in part from a difference in working capabilities between severity groups. Members in the mild group are still able to work, which translates to fewer production-loss costs. They also require fewer community services, versus patients with a severe case of the disease who are both unable to work and often require community services.
The disease-modifying therapies also play a significant role in the costs of having multiple sclerosis. DMTs are commonly prescribed to individuals with mild cases of MS, where modifying the outcomes of MS are a more feasible option.
Yet researchers found that their results varied widely from country to country. The conclusion of the study finds that “resource consumption was heavily influenced by healthcare systems organization and availability of services.” Researchers went on to write that “availability of given services” is the most significant factor in health outcomes for those living with MS.
Solutions for Rising Costs
While loss of productivity ability and non-health related costs cannot always be anticipated, patients with MS have much to hope for in a field that is being better understood with each passing year. While the effects of MS vary from person to person, work for individuals with disabilities is becoming more accessible, and many live with MS without experiencing debilitating loss of functionality.
While DMTs incur the most significant healthcare related costs, they can also prove to have the most positive health outcomes. The aim of anyone living with MS should be to promote overall health and prevent relapse, and ultimately, to find ways to maintain a high quality of life even in the increasing severity of disease.