Human Chain Project to Raise Funds for MS Patients

  • On February 1, 2009, a group of caregivers of multiple sclerosis patients and members of the regional MS Society chapter will form a human chain with the aim to create awareness and raise funds for the treatment and rehabilitation of MS patients.

    Multiple sclerosis is an expensive disease and many patients cannot afford the cost of treatment.  An all too common experience for many MS patients.

    With just a handful of patients a few years ago, the city today has around 200 people afflicted with MS, a chronic progressive disease of the central nervous system. Of these, only a few can afford treatment as it costs as much as Rs one lakh a month.

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    Costs what?

    Rs-1 lakh = 100,000 Indian Rupees = approximately $2050 USD in today’s exchange

    What else could one buy with Rs-1 lakh in India?  Well... a new car called the Nano!!

    Yes, the story comes from India and features an event Sunday scheduled by the Pune chapter of the Multiple Sclerosis Society of India (MSSI) to form a human chain along Jangli Maharaj Road in Pune.

    Pune is the 7th largest city in India and the 2nd largest city in the state of Maharashtra of which Mumbai is the capital.  The distance from Washington, D.C. to Pune is 8070 miles or 12,987 kilometers.  That’s a fair distance; however, the world is getting smaller and the boundaries of country, continent, and oceans matter less.

    Recently a question was posted on HealthCentral requesting information about financial assistance available for Rebif.

    Only problem is that the patient lives in Mysore, India and MS LIfelines, the program which provides support for Rebif patients, explicitly states that their program is only for patients residing in the United States.  Perhaps those of us living in the US should feel fortunate in that respect.

    However, stop for a moment and contemplate the information discussed so far.

    • A mother of an MS patient in India writes into a website hosted and primarily staffed by persons in the United States asking a question about financial assistance for her young adult son who has MS.  With the internet, we are all neighbors and can reach out to help each other with support at any time of the day or night.
    • A Pune chapter of the MS Society of India is conducting an awareness and fundraising campaign to assist in financing the treatment and rehabilitation of a relatively small number of patients, no more than 200.  Even in India, financial assistance is necessary for patients.

    More from the news article:

    "A course of three steroid shots costs over Rs 10,000. Of the 74 MS patients registered with the MSSI, only a few can afford the treatment," said Jyoti Ronghe (45), who has been afflicted with MS since 2000. "Needy patients will be given financial help using the funds raised during the event," she added.

    Wow.  So a round of steroids costs $200 USD even in India where we are often given the impression that pharmaceuticals are cheaper than in the United States.


    Multiple sclerosis is a condition in which the immune system attacks the central nervous system, leading to destruction of the myelin tissues covering the cells.

  • Symptoms range from speech defects to paralysis. "You should see a doctor
    if you even develop any one of these symptoms," senior neurologist Sudhir Kothari said.

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    While there is no permanent cure for the condition, it can be managed through physiotherapy and other treatments and is also not contagious, neurologist Pradeep Divate stated.

    Dr. Sudhir Kothari is head of the Neurology Department of Poona Hospital and Research Centre and Vice President of the Society for Neuro Sciences, Pune.


    Dr. Pradeep Divate is head of the Neurology Department of KEM Hospital, Pune and a neurologist of Sahyadri Hospital.

    I sincerely hope that the participants in the Human Chain are able to use the awareness created to raise not only enough funds to provide treatment to the needy patients in Pune, but to demonstrate a greater need for support and assistance throughout India for patients with incurable, chronic illnesses which have expensive price tags attached.


    Needs are needs no matter where you live.


    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: January 30, 2009