A Really Frustrating, Nasty Disease

The New England Journal of Medicine, which you can't read because you're just common rabble, hence no link, has a major review article on current knowledge about Multiple Sclerosis (Frohman, Racke and Raine, NEJM 354(9)), plus an editorial by Allan Ropper about the drug Natalizumab. I read these with considerable interest because someone I care about has MS.

MS is not a disease that gets a lot of interest in the public health community, because we have no idea why people get it, there is no known strategy for prevention, and the only way to treat it is with expensive drugs that don't work very well. However, there are important social dimensions to this disease, as to any other. People with MS often have difficulty with steps, are unable to climb stairs, and may use wheelchairs or scooters. This means that architectural barriers stand in the way of full participation in work, schooling and social and cultural activities for people with MS. My cousin, when she needed accomodations to get to her office, encountered discrimination and hostility from bureaucrats at her workplace.

Although the available treatments can only slow the progression of the disease, they do make a difference, but they are costly. People with MS who are fortunate enough to have good insurance through employment (as my cousin, a lawyer who works in the public sector, does), can receive state of the art treatment, but people who aren't that fortunate have a choice between accepting disability status and poverty in order to qualify for Medicaid, or working to support themselves and not getting any treatment. Not much of a choice, and one more reason to have universal, comprehensive health care that is not linked to employment.

The typical course of MS begins with a relapsing/remitting phase in which people experience episodes of symptoms, and periods of improvement. But after many years, most people enter a progressive phase in which symptoms get steadily worse. The disease process in MS is not completely understood, but it is an autoimmune disease in which the immune system attacks the cells that form an isulating sheath around the nerves, leading to sensory and motor deficits. In the later stages, there also may be brain damage and dementia. Some people, however, have comparatively mild disease and never experience the worst symptoms.

Natalizumab is a so-called monoclonal antibody, a drug that mimics a chemical of the immune system and selectively inhibits the activity of certain immune system cells that are involved in the MS disease process. It reduces the frequency of relapses in people in the relapsing/remitting stage by quite a lot, although it has a less pronounced effect on the development of disability and doesn't appear to do much of anything for people in the secondary progressive phase. Unfortunately, after it was introduced, some people who took it got a disease called Progressive Multifocal Leukoencephalopathy, which is caused by a normally harmless virus that apparently becomes dangerous when the immune system is disrupted by Natalizumab. Further trials have found this problem to be rare, so perhaps we will see Natalizumab reintroduced for more widespread use soon. But it is far from a cure.

So that's it. The only way to really stop this disease is to spend money on high technology biomedical research, and hope the folks in the white lab coats will figure something out. The usual questions about resource allocation apply, but we are talking about an enormous human cost and most people will agree that it's definitely worth it to keep looking, hard, for an answer.