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.