Multiple Sclerosis is an expensive disease, both in monetary measures and in quality of life measures. Not just the exorbitant costs of the disease-modifying treatments, but the indirect costs from lost productivity, the costs of informal care, and the costs associated with a diminished quality of life.
Has your neurologist ever said to you - "this is the best time to have MS."
What? Is he or she crazy? Why would I chose ANY time to have MS?
Not too many years ago, there was very little neurologists could do to help their MS patients. If you had an exacerbation, you underwent high-dose steroids or plasmapheresis. If you had symptoms, you tried something to help relieve them.
Doesn’t sound that much different than the present. The difference is, however, that we have several disease-modifying treatments which have been developed to delay the progression of the disease and hopefully prevent some of the permanent disability. See The Role of Disease-Modifying Treatments (Part Two in Series).
Why do patients choose to not use one of them? It comes down to a cost-benefit ratio.
Cost (potential): expense of the drug, undesirable side-effects, lack of efficacy, inconvenience, financial sacrifices
Benefit (potential): fewer lesions, fewer relapses, delayed disease progression, improved quality of life, extended time to contribute to society
Currently, the approved disease-modifying treatments for multiple sclerosis cost some serious money and an annual expense none the less. Here is their estimated cost at this time:
Tysabri: $30,000 + infusion center charges ranging from $6500 to $65,000
Alone, the drugs exhibit a tangible cost to the payer (ie. insurance company, government agency, or the patient himself). Then consider the cost of medical care and rehabilitation, the indirect cost of extra care provided by family and friends, and the intangible cost of diminished quality of life.
The challenge, then, comes in demonstrating the cost-effectiveness of intervention. By preventing temporary disability resulting from relapses (now) and permanent disability from slowing disease progression (later), the main economic benefit (to the payer) is in future cost-savings generated by less disability which lead to maintaining a higher HRQOL. See Quality of Life for MS Patients: Is it Health-Related? (Part One in Series).
Since clinical trials were conducted only for short periods of time and we are just now reaching the 15-year mark from when the first disease-modifying treatment reached the market, the measure of long-term cost-effectiveness is yet undetermined. Sure there are the BENEFIT trial and the PRISM study, but it would be nice to see more long-term evidence. See Early Intervention in Multiple Sclerosis: Knowledge is Power.
Health economic studies assess what resources are needed to treat MS, their cost, and what health outcomes are produced by various treatments. One measure which is useful for this purpose is Quality-Adjusted Life-Years (QALY), which has been specifically developed to measure correlations in overall HRQOL and cost. QALY is not useful in the clinical setting, but relevant for decision makers at the policy level who make decisions on healthcare-resource allocation. See Sassi F. Calculating QALYs, comparing QALY and DALY calculations. Health Policy and Planning 2006; 21(5):402-408.
How is QALY used in making healthcare decisions?
Payers are interested in cost-containment, budget impact (how much it will cost), cost-effectiveness, and how their payment will contribute to outcomes such as HRQOL, quality of care, and survival. In most European countries, cost per QALY is demanded before decision are made by reimbursement agencies regarding a new treatment. Some countries, however, including the US, have not fully adopted this practice. See Flachenecker P and Rieckmann P. Health Outcomes in Multiple Sclerosis. Current Opinion in Neurology 2004 Jun; 17(3):257-61.
Some patients may worry that if proposed Health Care Reforms are implemented in the US, then access to treatments and therapies will be limited. However, the same principals used to approve payment and access for DMTs in Europe can be used to justify the expense of Comprehensive Rehabilitation and Psychosocial Interventions.
Evidence-based medicine is a focus of health care reform efforts. However, the evidence is in our favor and indicates that early and aggressive interventions are useful in preserving HRQOL which is of great importance to patients. Since most MS patients will live with the disease for decades, and since HRQOL is already poorer as compared to individuals without MS, it is of utmost importance to give priority to improving Quality of Life status for patients by medical professionals and policy makers.
Support early use of disease-modifying treatments to delay disease progression and to protect from accumulated disability. Support comprehensive rehabilitation with early use and generous benefits; the neurological physical therapist is one of the best tools to maintain and improve QOL for MS patients. Support early detection of psychosocial components of MS with particular attention to diagnosing and treating sexual dysfunction, depression, and cognitive dysfunction.
For a discussion of the Overall Costs for MS patients in the United States, read the following study which was conducted in 2004. Although the numbers are outdated, the methodology and theory behind the analysis remains true. See Kobelt G, Berg J, et al. Costs and Quality of Life in Multiple Sclerosis: A Cross-Sectional Study in the USA. SSE/EFI Working Paper Series in Economics and Finance No 594, December 2004.
In this, MS Awareness and Education Month, what would you want the public policy makers to know? How best could services be made available which would help to improve your Quality of Life? ** Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.**
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.