Data speak for early therapy

MHH study on the autoimmune diseases NMOSD and MOGAD: High socio-economic costs and reduced quality of life

The photo shows Dr. Hümmert and Professor Trebst, standing in a corridor of the MHH.

Dr. Hümmert and Professor Trebst. Copyright: "Karin Kaiser / MHH".


When it comes to rare diseases, there is often a lack of meaningful studies and findings on the socio-economic costs of illness and the quality of life of those affected. The Department of Neurology at the Medical School (MHH) has now filled a gap in this area. In a multicentre study, a team investigated these aspects in the rare autoimmune diseases neuromyelitis optica spectrum disease (NMOSD) and myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD).  The result: the diseases are associated with high costs, averaging around 60,000 euros per year, for those affected, their families and society. And the effects on the quality of life are also enormous, depending on the severity of the disease. The study was published in the renowned journal "Neurology".

The disease comes in relapses

NMOSD and MOGAD are autoimmune diseases that, like multiple sclerosis (MS), usually cause relapsing inflammation of the central nervous system (CNS). The spinal cord and the optic nerves are frequently affected. In Germany, approximately 2,000 to 2,500 people suffer from NMOSD. "The disease episodes can cause, for example, visual disturbances up to blindness, muscle spasms and paralysis, pain as well as urinary and faecal incontinence. Despite intensified relapse therapy, permanent impairments can occur," explains Professor Dr. Corinna Trebst, head of the study and vice director of the Department of Neurology.

Large multicentre study

 "Reliable statements about disease-related costs and quality of life provide a basis for health policy decisions and for increasing the quality of care for our patients," says initiator and first author Dr Martin Hümmert, explaining the background of the study. Until now, there was insufficient data on NMOSD and MOGAD in this regard.  Dr. Hümmert coordinated the study together with Professor Trebst. 212 patients were included in the multicentre study - a very large number for a rare disease. "This was made possible by the NEMOS study group, a network of more than 60 NMOSD centres in Germany, Austria and Switzerland," says Professor Trebst. MHH Neurology is one of the leading NEMOS centres. Through the network, the study initiators were not only able to interview affected persons and their families, but also to access data from other centres and a central patient register at the same time.

High informal care costs

Comprehensive data were collected on the consumption of medical and non-medical resources and on the patients' ability to work. The average annual per capita total costs of the disease amounted to about 60,000 euros. The most important cost driver was informal care costs, i.e. financial burdens resulting from the fact that, for example, not care services take over the care of those affected, but rather devoted relatives. Often they have to reduce their working hours considerably. "The share of informal care in the total costs is 28 percent. That made us listen attentively," reports Professor Trebst. Other cost drivers are indirect costs, such as for home modifications for the disabled, and medicines, especially immunotherapeutics. "As the severity of the disease increases, the socio-economic costs rise dramatically," notes Dr Martin Hümmert. "At the same time, the quality of life of those affected decreases." On average, patients had a worse quality of life than those suffering from multiple sclerosis (MS).

Cost-intensive immunotherapies

When treating NMOSD and MOGAD, doctors pursue two goals. On the one hand, they want to combat the acute symptoms during a relapse, and on the other hand, they want to prevent further relapses. While high-dose cortisone and blood washing procedures are used for relapse treatment, immunotherapies are used for long-term treatment. In the study period, 2017 to 2019, these were comparatively inexpensive off-label therapies that had not yet been approved. They accounted for 13 percent of the total costs. In the meantime, there are two approved immunotherapies in Germany. "This is a huge advance in treatment, our patients can benefit greatly from it," says Professor Trebst. At the same time, however, the costs for the new therapeutics are immense. The new in-label NMOSD therapeutics are among the most expensive drugs worldwide.

Health policy discussion is necessary

"Since our survey took place immediately before the new immunotherapeutics were approved, our study data in a way provide a basis for the cost assessment of new therapies for rare diseases," says Dr. Hümmert. "However, it is already clear that a health policy discussion is needed on how the long-term care of our patients with innovative therapies can also be secured in the future." Professor Trebst adds, "From our point of view, the results of the study speak for early, individually tailored and cost-effective therapy to prevent long-term disabilities and maintain quality of life."



For further information, please contact Professor Dr Corinna Trebst, or Dr Martin Hümmert,, telephone (0511) 532-2390. Further information about the NEMOS network at

The original paper can be found here .