‘InsureMyMS’ campaign fights for comprehensive coverage for multiple sclerosis patients

Typically a person with multiple sclerosis (PwMS) pays on an average anywhere between 10 K to over a lakh every month depending on one’s condition, Jaya adds.

At the Multiple Sclerosis Society of India (MSSI), members are extremely concerned over the treatment costs. “This is the biggest challenge that the community faces,” says Renuka Malaker, national joint secretary, MSSI. MSSI has approximately 3000 members spread across 9 chapters in the country (including in Pune).

With no medical subsidies, MSSI members point out that what hurts even more is that they are not provided with any personal insurance cover, once diagnosed with MS. “My personal experience of multiple rejections and silence from the various insurers in the country immediately after my diagnosis, pushed me into working on this project nationally for MSSO alongside with another MS warrior Ram Kumar with an aim to get a financial risk cover for every PwMS in India. This is our basic right to health,” Jaya says.

The `InsureMyMS campaign’ that is underway aims to raise awareness about the gaps in insurance coverage for a person with multiple sclerosis. “We cannot accept a status quo where MS patients are left without the coverage they desperately need,” says Malekar. “This is an online campaign where we are reaching out to relevant agencies and talking about the multiple challenges that PwMS face,” Malaker adds.

According to experts at Mayo Clinic, with MS, the immune system attacks the protective sheath (myelin) that covers nerve fibres and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerve fibres.

MSSI is also conducting a survey to build evidence and hopes to bring out a white paper in the form of recommendations to provide a deeper understanding of the issue. “At least 70 percent of participating MS patients believe that their insurance providers do not adequately understand their condition and its financial implication,” Malaker said. “The aim is to reach out to policymakers to develop a financial risk cover for PwMS once diagnosed, ensuring timely treatment to arrest the disability,” she added.