Stakeholders call for more awareness to navigate multiple sclerosis challenges

Bengaluru: With the World Multiple Sclerosis (MS) Day themed on navigating MS having recently concluded, stakeholders continue to push for steps to effectively address the challenge of diagnosis and affordable treatment.

MS, an autoimmune disease that affects the central nervous system (CNS), causes a breakdown of the protective covering of nerve cells. This leads to a wide range of symptoms, including vision changes, difficulties in walking and balance, numbness, tingling, and fatigue.

Arun Mohan, honorary vice president, Multiple Sclerosis Society of India (MSSI), noted that misdiagnosis is still a problem.

“I was diagnosed with MS in 2014, but my first symptoms of Nystagmus (uncontrollable, repetitive eye movements) and slurring showed in 1994. I was treated as a Parkinson’s patient for six months in 2014. There are a lot of misconceptions about the disorder, which also has psychological impacts,” he said.

Dr Netravathi M, professor of Neurology at Nimhans, Bengaluru, and MS expert, noted that the incidence of MS is one to five per lakh people.

“MS symptoms mimic those of other CNS demyelination disorders. Migraines also can have white matter changes, which can lead to a misdiagnosis,” she said.

Out of all disease-modifying treatments, the drug Rituximab has an 80% efficacy, but it is not included under insurance, nor is it discounted for MS patients, despite being used for other diseases such as Non-Hodgkin Lymphoma (a type of cancer of the lymphatic system) and rheumatoid arthritis.

“Rituximab is not approved as an MS treatment by the Food and Drug Administration, USA. Testing is still ongoing worldwide. Rituximab needs to be taken only twice a year with Solumedrol, a corticosteroid. It costs Rs 40,000 per one-gram vial, which is cheaper than other drugs such as Tysabri, which costs about Rs 1 lakh per vial and needs to be taken every month,” said Arun.

Dr Netravathi highlighted that delays in the right diagnosis lead to patients delaying the required treatment, which might cause disease progression.

“Most medicines are costly and are a burden on both patients and caregivers. However, large case studies show Rituximab is very effective across the world. Our data on 100 patients has shown good results,” she noted.