INDIA MS PERSON OF THE YEAR! 2019 Group Captain Prabal Malaker

A retired Indian Airforce Test Pilot who has flown almost every aircraft in the Air Force inventory in his time from MIGs’, Jaguars’, and Mirages’, to large transport carriers like the Avro and AN-32. He is a qualified flying instructor, who has imparted training to several young pilots.

His message to fellow MS persons is very straight forward, “If you have a problem, accept it. Work within those challenges and carry on with life. Keep your mind strong and paths will open up”, says a 63-year-old Multiple Sclerosis (MS) person, who has never learned to give up against all odds.

Life seemed to be going well until August 1998, when he was diagnosed with the progressive form of Multiple Sclerosis. He had a near-death experience when his plane, upon landing caught fire. Neurologists said that this could have possibly triggered off an autoimmune response to cause MS. In 1999, he was permanently downgraded from flying and his career came to a standstill. He had to retire from active service at the young old age of 52 years!

This was the time when he was introduced to MSSI Delhi by none other than Mrs. Sheela Chitnis, Co-founder of MSSI, by his sister Gopa who was living in Mumbai at that time. He joined the Delhi office as a volunteer to serve many other people like him. He has been in a leadership role and together with a team of some very dynamic volunteers who work shoulder to shoulder to improve the lives of people living with MS. He has been instrumental in setting up systems and procedures for smooth execution of projects, services, and initiatives that are offered to registered members of the society within Delhi NCR.

Prabal is a foody and a movie buff, however, going to movie halls and restaurants in a wheelchair was becoming a challenge since most of these places were not handicap friendly. He decided instead of getting stuck in the house and giving up all the things he enjoyed he would embark on a single point mission; To bring about change in movie halls and restaurants so that a wheelchair user could enjoy barrier-free access. Due to his single-handed and persistent effort, the Disability Commissioner has served notice to Movie Hall Operators which includes PVR, INOX, and Cinepolis A notice has also been served to 480 restaurants and the hotel of Delhi State to conform to the harmonized guidelines of barrier-free access for PwD.

Being an avid traveller, he has conducted accessibility audits for hotels and tourist sites in Jodhpur, Udaipur, Ranakpur, Sarnath, Varanasi and Sri Lanka for a Cox & Kings Accessible Holiday segment called Enable Travel.

He heads the advocacy arm of the MSSI Delhi chapter and has been engaging with the Delhi State Disability Commissioner on a regular basis to bring about change in policy and assessment guidelines for disability and advocates for the right of people with Multiple Sclerosis.

We wish him good luck and good health always!

International Day of Persons with Disabilities is an international observance promoted by the United Nations since 1992. It has been observed with varying degrees of success around the planet. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It also seeks to increase awareness of gains to be derived from the integration of persons with disabilities in every aspect of life. Each year the day focuses on a different issue. This years theme is, “The Future is Accessible”.

As a part of the national advocacy action plan we had identified the need to address the poor understanding of MS among external stakeholders, disability groups, government, media, and the general public. MSSI members, volunteers and persons with MS along with their caregivers participated in the Symbolic Walk to Freedom that started from the iconic India Gate in the capital city of New Delhi to commemorate the International Day of Persons with Disabilities. This event was organized by NCPEDP and the America India Foundation. Before the walk, MSSI’s India MS Person of the year, 2019 Gp. Capt. Malaker, along with members of other newly recognized disabilities were invited on the dias to release the blue and yellow balloon as a symbol of freedom from the bondage which is social, psychological, societal and individual. There was a gathering of nearly 5000 people and we were able to create a lot of visibility and awareness about Multiple Sclerosis. We gave away pamphlets with information about MS & MSSI. As a way to create awareness, we displayed placards with slogans that convey the need of the hour for Multiple Sclerosis which included Know Multiple Sclerosis, Change assessment guidelines, No Data on Multiple Sclerosis, No research, Reduce cost of Treatment.

Ironically even though the theme is Future is Accessible, that is not the reality on the ground for a person living with MS in India because they are still struggling with inappropriate assessment guidelines, lack of data of prevalence of MS in India, no research on drugs and treatment that might work. All of this leads to lack of access to schemes, social benefits, insurance and employment. We have a lot to do to change that.

Participating at national level events provided impetus to our work in the area of advocating for the rights of persons with MS.

Introduction: MS International Federation conducts various meetings that are attended by their Member organizations.  These meetings include World Conference, International Networking meeting which is held once a year and is hosted by one member country or the other.  In addition to this, they either have other meetings with smaller groups or allocate slots within the 2 above-mentioned meeting for various working group & committees, which again member organizations can attend in person or digitally. While some of MS societies can afford to pay for their travel and stay, others need to raise the money/funds to do so like MSSI has been doing.

There were about 90 volunteers, staff and people with and affected by MS from 34 countries across the global MSIF movement attending the MSIF International Networking meeting held in Athens Greece from September 13 to 16 2019 conference.

This time in addition to Mr Viresh Oberai (President) and myself we were able to secure sponsorship from MSIF for Mrs. Mama Gupta (Member representing India on International Resource Alliance). Though MSIF had agreed to support Anjali Vyas who was also assisting us in the translation of the MSIF animation videos Unfortunately due to a health emergency she was advised by her doctor not to fly hence could not attend.

We are very thankful to MSIF and the Greek MS Society for their wonderful arrangements and warm welcome extended to us

Highlights of the meeting were 

People with MS Forum: well-being and quality of life

Every two years people with and affected by MS gather to give direct input into the work of the movement. This year, the Forum focussed on well-being and quality of life with MS. Participants contributed to the well-being element of the Progressive MS Alliance’s research strategy and discussed programmes to reduce social isolation among people with MS and family caregivers. This was stimulated by an excellent presentation on the topic by EME, Spain.

The Forum participants also provided guidance on content, audience and format for an information resource on ageing with MS, which will be further developed by MSIF’s International Resource Group, for publication in 2020.

Mamta Gupta who started off with helping me on the International resource alliance has now seamlessly transitioned into being an integral part of this working group. What makes it an enjoyable is that we have created a great procedure of communication wherein she writes to the head of Inter Resource alliance only after we both have discussed and arrived at a decision.

1. Joane Tiknor, Canada reached out to us for Urdu and Punjabi translations.
2. Appreciation on Hindi and Telugu translations from Victoria on the videos of MS and low self-esteem, a resource developed by international resource group
3. Sharing events and awareness ideas with Egypt, Mai Shawary New Chair of MSIF board, Reema and Ahmed Darwish.
4. Taking Anthroposophy forward with Germany with Herbert
5. Discussing alternative therapies with other countries
6. Pedro from Canada, Dimitri from Greece she is a champion are friends on Facebook…sharing their events
7. Have made other friends made on social media
8. In her observation, she has also said that we need to look into the representation from India on the PwMS advisory committee.

In my 2018 report, I had mentioned that We still need to be represented in the Person with MS Advisory Group.

In my 2017 report, I had mentioned that the group discussed the Principles to Improve the Quality of Life, the importance of tackling societal attitudes and support for mental health were emphasised.

MS Organizations’ relations with the healthcare industry

I participated in these sessions as a member of the CEO Advisory Group where the discussions focused on relations between the healthcare industry and MS organisations. Of course, the industry is vital – we all want MS drugs to be developed, in European countries as well as in the US they provide much financial support for research which is very ethical and professionally done. However, since this is not the case in India that is something we need to think about when it comes to collaboration with the healthcare industry,

The CEOs reflected on the following in Athens: trust issues, power imbalance, or ‘micro-branded’ campaigns and websites with a lack of transparency about the companies behind them. I had mentioned that pharma and healthcare Industries work very differently in different countries and we need to know how MS societies have been successful in their partnerships with companies. MSIF will set up some working groups with industry to try to address such issues, with important input from the CEO discussions in Athens about what results we want to see.

Atlas of MS

This session was facilitated by Rachel King who is International Evidence Manager and she is working on publishing the 3^rd edition of the MS Atlas. There were 3 group exercises followed by discussion and identifying challenges and possible solutions. When MSIF starts work on the MS atlas we will be informed on the methodology, timeframe. Since I am on the MS Atlas working group I will send updates as and when I get them and will also provide detailed information on what MSSI will need to do at the national as well as chapter level on a conference call with GC members and Chapter heads

MSIF is developing the next Atlas of MS, providing vital data about the number of people with MS and the support, care and treatment they can expect in different parts of the world. The CEO Advisory Group explored a new addition to the next Atlas: the survey of people with and affected by MS. In particular, participants debated the pros and cons of aiming for global coverage or of focusing on a selection of countries for this survey.

Some CEOs, particularly from organisations where recent, national surveys have been undertaken, were reluctant to burden people in their countries with another survey that might not result in change for them. Some felt that we would be able to get higher quality data if we focus on fewer countries. Others made the case that global coverage would yield vital indicative comparable data that could be used both at the global level by MSIF and by individual countries in their advocacy.

117 countries recruited. India being one of them

Patient-Reported Outcomes: Launch & Lancet

There was a presentation of the Patient-Reported outcomes project that MSIF and the Charcot Foundation launched at ECTRIMS, with the Italian MS Society as the lead agency and involvement from the Australian, Danish, German, UK, US and Swiss MS societies. The Lancet Neurology published an article about this initiative please click the link to read the article based on your interest: https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(19)30357-6/fulltext

Access to treatment

The Council, the Board, the Fundraising and Finance committees, extensively discussed proposals developed after the MSIF Board’s decision in April 2019 to explore if they should expand the MSIF-movement’s ambitions.  MSIF Board of Trustees has created a task force of the board (Viresh is a member of this task force) to create a global program to improve access to treatment for people with MS. The goal of this program is the people with MS should be diagnosed as soon as possible and promptly be offered DMT that is right for them, to minimise diseases activity, optimise their brain health and help them live their best lives.

The proposals, developed by staff with a Taskforce of board members were built on all the experience gained so far in the access work from different countries. They will step up the work to improve access to treatments and healthcare, underpinned by more capacity building. The proposal is planned to be put up for approval in April 2020 to the MSIF board. If approved the program will be implanted in around 6 countries globally. It is important that we implement the current project being funded by MSIF on ADVOCACY providing significant benefits to MSPs in India if we would like to be selected as one of the 6 countries for the new global program of MSIF

Under the global initiative of access to treatment, the application to the WHO’s Essential Medicines List (EML) was developed by experts from the medical fraternity, member organisations and PwMS. Medical expert inputs on epidemiological and clinical management are provided by Dr Kameshwar Prasad from the India perspective, he is in touch with Dr Gavin Giovanoni and many other neurologists. In fact, he was the one to bring out the fact that cheaper drugs have not been included in the EML and especially in India where MS treatment is exorbitant there needs to be access to affordable treatment

Pasting below the relevant section of the Executive summary

Medicines for multiple sclerosis: The Expert Committee recognized the public health need for effective and affordable treatments for multiple sclerosis (MS) but did not recommend the addition to the EML and EMLc of glatiramer acetate, fingolimod and ocrelizumab at this time. The Committee acknowledged the application’s approach to increase access to MS treatments by prioritizing selected treatment options. However, the Committee noted that some relevant therapeutic options for MS were not included in the application (azathioprine and natalizumab) or were not given full consideration (rituximab). The superiority of presented medicines over other therapeutic options in the outcomes considered (benefits, harms, affordability) did not clearly emerge. The Committee would, therefore, welcome a revised application which comprehensively reviews the relative roles of relevant available medicines for MS.

The Lancet has published an editorial on MSIF’s application to the WHO’s Essential Medicines List, which you can read here: https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(19)30390-4/full text.

MSIFs New Chairman Board

The Council also elected a new Board and a new Chair – Mai Sharawy (2nd from Right) from Egypt took over the reins from Weyman Johnson who retired after leading MSIF for the last eight years. Mai is very aware of the work we do in India and is extremely encouraging. Weyman Johnson & his wife are  yoga enthusiast and has expressed that he is very keen to know how the yoga project of Hyderabad does and especially said to keep him in the loop which is a big thing for us

Learnings and improving

With 90 delegates from across the world, Athens was an opportune moment to review where MSIF is with the movement’s global strategy. During the Council and Board meetings, we explored the successes and challenges of our collaborations, and ways of improving how we work effectively as an international movement.

One issue that was highlighted was the need for stronger measures for and descriptions of our progress and the differences we make. It was also agreed that discussions about the next strategy might focus on a few key areas rather than on all aspects of our mission.

It was stressed that all member organisations – small, large and from whatever region – should benefit from the networking and the efforts of the movement. We might, therefore, explore how organisations with similar needs can work in clusters, or how we can ‘match-make’ between two or more organisations.

In 2017 report I had mentioned that the Way forward was to request MSIF advocacy workshop for our Staff & Volunteers that was successfully achieved

In my 2018 report, I had shared that I was particularly impressed by the fact how progress has been made in building a stronger, broader movement through collaborations. For instance, in the Arab region through collaboration with MENACTRIMS. I shared that MSSI is collaborating with ICTRIMS for the first time as a national body with representation from all of our regions to work together with Medical fraternity, healthcare companies & government. I was being able to bring the India perspective about the challenges we face in our country with respect to lack of awareness leading to late diagnosis & lack of access to affordable treatment.

In my Rome conference report, I had shared a lot of learnings which included the following

• We should learn from the success of Italian, Danish and Australian MS societies on how they have a strong Youth MS group, are decision-makers and board members of their own MS societies.
• MSIF plans to conduct a global survey of MS person and MS organizations
• MSIF is working towards publishing the 3^rd edition of Atlas of MS in 2020
• Most of the MS societies have a medical advisory board that helps in bringing a better understanding on what patient welfare societies can do to further improve the quality of life of people with MS. Information on treatments and updates on research is an area where India lacks information We have made a good beginning at ICTRIMS and Professor Comi is one of the world’s leading MS neurologists and a pioneer in the development of disease-modifying therapies in MS who we all met at ICTRIMS mentioned in his speech that doctors in India are showing interest to work with MSSI which is a very good thing.
• Multiple Sclerosis Spain (EME) has repurposed the Quality of Life Principles by producing a visually engaging guide that accompanies each principle with a set of tips. We can definitely do this and engage with Spain to understand better how we can replicate this
• I learnt that in 1995, the Society of Lebanese Friends of People with Multiple Sclerosis (ALSEP) was established in Zahle to provide support for people with MS in Lebanon. It relies on a small voluntary board to run its activities, including physiotherapy, providing information about MS, and organizing awareness-raising activities. They have done some great work in advocacy and demanding reduced cost for MS treatment and have managed to get it down by 75%. We also must work in full earnest on the advocacy project so that this activity can be showcased at a global platform in the coming years.
• After attending the parallel session Online and teleservices I met Cynthia Zagieboylo (President CEO National MS society USA and Dr Timothy Coetzee (Chief Advocacy, Services and Research Officer for the National MS Society USA) to discuss potential collaboration

A lot of the learning and partnerships have worked out and next time we must raise funds and have energetic people on various committees representing India and continue the process of learning from other international MS Societies

Prepared By
Renuka Malaker (Hony National Secretary)