Support us to ensure people living with MS are not left behind in National Health Data

Petition Closed

Support us to ensure people living with MS are not left behind in National Health Data

This petition had 5,825 supporters

Multiple Sclerosis Society of India started this petition to Shri Mansukh Mandaviya, Hon Minister, Ministry of Health and Family Welfare and

Are we counted?

Covid-19 has shown us how inequalities in access can stop us from living our lives to the fullest. Difficulty in access to affordable healthcare or treatment gets accentuated when one is living with Multiple Sclerosis or MS - a rare progressive disease of the nervous system - during a pandemic. 

My name is Anjali Vyas and I was diagnosed with MS in the year 2014. But my life-threatening problems are at the risk of being overlooked as there is no comprehensive data on how people like me live in India. We are not counted and therefore we are MISSING - missing from health policy, insurance or research. 

Presently in India there is no mechanism for capturing data around Multiple Sclerosis in the country. Will you help me reach out to policy makers to develop such a mechanism?

Without your support, I am afraid me and many more affected by Multiple Sclerosis will remain unheard.

Please do sign my petition!

- Anjali Vyas, India

 

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There is said to be roughly 145,800 people estimated living with MS (source: www.atlasofms.org in India. The number perhaps may be much higher. Recently, steps have been taken to create a hospital based registry through the National Policy for Rare Diseases, 2021. But it is feared that it might leave behind many people living with MS, like Anjali above, in our very large and diverse country. The India MS Map - a crowd sourced mapping exercise by the Multiple Sclerosis Society of India - shows that 79% of respondents do not avail government health facilities and therefore possibly be missed from the national data.

The Multiple Sclerosis Society of India has launched the #NumbersMatter Campaign to bring attention to the fact data is important. Absence of data causes barriers in access to affordable treatment, policy formulation and research for Multiple Sclerosis, Therefore, there is an immediate need for a mechanism to collect comprehensive data on Multiple Sclerosis at the country level.

We appeal to you to sign this petition in solidarity with the cause of the people living with Multiple Sclerosis in India. This will be submitted to the Ministry of Health and Family Welfare, Government of India to call on them to ensure that every MS person is counted and none are left behind!

Petition Closed

This petition had 5,825 supporters