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All India Meet Kolkata – Chhulo Aasman

{mosimage}Date: 1st February, 2009  
Time:  8:30am thru 4:30pm
Venue: Nazrul Manch  – Kolkata

Pre-registration – days preceding the meeting.
Friends of Max (FOM) converged on the City of Joy from various parts of India which included Mumbai, Bangalore, Delhi, Kashmir, Chennai, Gauhati, Agartala, Calicut, Ranchi, Kanpur, Hyderabad, Cuttack, Tripura , Pune besides other towns and cities.  Most FOM who came in to Kolkata for the meeting arrived a day or two before the D-day.  

The hosts who were the local FOM residing in Kolkata did a fantastic job of arranging for the stay in guest houses in and around the venue.  Before the meeting, all FOM travelers from outside Kolkata were well settled due to the hospitality of local FOM even though many met each other for the first time.  The day before the meeting , the 31st , saw all the volunteers from all over the country converge at the guest house where the Max India team was staying . The whole day went in a flurry packing the kit bags and getting to know one another ; those who were meeting for the first time . At the venue , some last minute arrangements were being taken care of and a dress rehearsal for the play that was to be enacted was also going on side by side . A dry run of the big day’s agenda was conducted by Amma and all the various teams of Volunteers given their responsibilites. Pat joined us straight off the plane from the US and we were all set !!

AIM meet Kolkata – Registration 8:30am
By the time the first set of volunteers arrived at the venue, the place was already full of eager participants and FOM lined up ready to register themselves.  The Registration process was divided into 4 regions namely North South East and West to enable FOM from the respective regions to register.  All FOM upon registration got a gift kit-bag which consisted of a calendar, a note pad, the Book of Stories and FAQ in three languages, the trade mark FOM keychain & a weekly medicine box. After that, they all proceeded to sign up on a huge map of India depicting the region they represented and got a white T-shirt.  Subsequently, all the FOMs had tea & breakfast before proceeding to enter the meeting place i.e. the main hall.  

Dignitaries who arrived early were our Chief Guest Mr. Ranjit Shahani (Vice Chairman & MD – Novartis India Ltd.), who never misses our meetings , Guest of Honor Lucy Hickinbotham (Head of Oncology Affairs, Asia Pacific Region, Novartis AG) Mohammad Masih the Chief Whip of the Government of West Bengal , Pat Garcia Gonzalez (Founder & Executive Director, The Max Foundation), Mr. Tyagi (Head Business Unit Oncology Novartis India Ltd.) and  Dr Raghunadharao and Dr Ashis Mukherji who were there bright and early.

9:30am  Chhulo Aasman
The program started with the National Anthem and Poonam Kankani and Sangita Sen the comperes for the day saw to it that a seamless flow of events took place.  This was followed by the lighting of the lamp by the Chief Whip, Viji Amma, Pat Garcia Gonzalez and Lucy Hickinbotham , Mr Shahani and Drs Raghunadharao and Mukherji. The stage then came alive with a breathtaking dance performance by Bidhan da and his troupe , students of the famous Mamta Shankar school of dancing . The flavour of Bengal culture charmed one and all. Ayeshah the Max Station in charge of West Bengal opened the day with an introduction and welcome address on behalf of The Max Foundation.  The slogan for AIM Kolkata was “Chhulo Aasman” which literally translated to reach for the sky.  The underlying message being; that no matter what problems one comes across, if you try, you can overcome all hurdles.  FOM meeting in Kolkata got a brilliant motivating line.  And Ayeshah reiterated the commitment of the Max Foundation to be there for all times and saluted Novartis for their generous programme through which thousands of families were living fulfilling lives.

10:30am   Important Talks
Speaker:  Mr. Ranjit Shahani (Vice Chairman & MD – Novartis India Ltd.)
Mr. Shahani talked about the current ‘works’ of Novartis in the field of Leprosy and Malaria.  These two diseases affect millions of people around the world; and India being no exception.
Glivec:  Mr. Shahani explained the difference between original innovation and incremental innovation by way of examples.  One such example was that the wheel was an original innovation while a bicycle was an incremental innovation.  He pointed out that Glivec was an example of an original innovation as opposed  to an  incremental innovation. Novartis has distributed Glivec via The Max Foundation worth thousands of crores  in India so far.  

Speaker:  Ms. Lucy Hickinbotham (Head of Oncology Affairs, Asia Pacific Region)
Ms. Hickinbotham spoke about the new program at The Max Foundation in India called Novartis Oncology Assistance (NOA).  This program has been introduced since the beginning of this year.  Under this program, all newly diagnosed CML and GIST patients who need Glivec shall be evaluated by an independent body and based upon their evaluation Novartis would donate the medicine to all eligible patients. We were reassured that the NOA program shall in no way effect patients currently under the GIPAP program.  GIPAP patients shall continue receiving their dose of Glivec at no cost.  The GIPAP program now enlists more than 10,500 patients from across India.   

Speaker:  Pat Garcia Gonzalez (Founder & Executive Director, TMF)
Ms. Gonzalez spoke about how The Max Foundation was founded.  Max was diagnosed with Leukemia in 1988 at the young age of 14.  He succumbed to the illness in 1992 at the age of 17 after fighting a difficult battle with outstanding courage.  TMF was founded as a non-profit in Max’s memory.  The objective was to improve the lives and survival rates of patients who were effected with blood related cancers worldwide.  
Years later, Novartis teamed up with TMF to launch a program by which they would distribute Glivec to patients effected by Chronic Myloid Leukemia and GIST.  

Speaker :  Viji Venkatesh Country Head and Asia Pacific Coordinator TMF
Amma presented a special Tribute to those unseen pillars of the GIPAP programme without whom none of the advances made in the past years could have been possible. The team from the Global Max Foundation Offices, the clinical coordinators of various hospitals and the stockists from whom we collect our precious Glivec were all shown on the screen in a loving audio visual presentation.Tracing the past twelve months since the last All India Meeting in Bangalore she also spoke about the various cities in which meetings had been held which brought so many of us together .  It was wonderful to recognize familiar faces in the slide show from all those cities.

11:30am  Play titled “Hum Honge Kaamyaab – We shall overcome”
The Kolkata team presented a play to the audience  
Cast:  Navin Agarwal, Stuti Koner, Neel Kankani , Pooja Kankani , Samiran Sen , Professor Koner, Ramnath Sheshadari, Subir , Sushmita and Sangita Sen and Bharat Kaul as the Sutradhar.

Background
The chief protagonist of the play was Navin.  His character is one of a typical working family man who’s married with 2 children.  The play starts off with Navin having difficulty coping with family affairs at home due to body aches and tiredness. Consequently this results in irritation/intolerance in dealing with his wife and his children.  Over a short time, this condition deteriorates progressively to a point where he decides to see a doctor with his wife.  The doctor jumps the gun by informing Navin that he may have CML on conducting preliminary tests but informs him that further tests are requires.  

Diagnosis
Navin is shattered as his world seems to be coming down on him.  His wife decides to call his best friend Neel for moral support.  Neel immediately decides to get Navin checked with another doctor , an Oncologist for a second opinion.  Neel encourages the children to search for information on the internet and he also informs Navin that there’s nothing to be afraid of as there’s a drug called Glivec by Novartis which, manages CML effectively for one to lead a normal life.  After his diagnosis, Navin is worried about the high cost of medication but soon finds out that there’s the donation programme by Novartis administered by a group called The Max Foundation that aids in distribution of Glivec at no cost for those eligible.  Navin is brought into Max’s family and gets more than just Glivec.  He meets other FOM also going through CML and quickly becomes their friend.  

Effects of Glivec
Over time, Navin starts feeling better.  His CML is under control and life is back to normal both at work and home.  His children are very supportive in making sure their father take his medication on time.  However, at this stage, Navin gets lax about taking his medication.  He starts to think that all his symptoms have gone and he does not require the medication as he is feeling better now.  At this stage, his family and Friends of Max inform him about the fall-out of neglecting his medication.  Navin’s children are well aware of the importance of taking medication regularly as they’ve been using the internet as a source for information.  

Summary of the play
This play depicts a typical family and what they go through when a member of their family is diagnosed with CML.  The play goes through a typical cycle of Leukemia diagnosis in an Indian household.  It brings out the physical, emotional, financial and social & moral stress/issues that the family goes through before finally overcoming each hurdle.  

Each one present at the meeting watching the play could definitely identify with one character or the other from the play.  Patients could definitely relate to Navin’s character.  Their family members or care givers could relate to Navin’s family.  

Support of family and friends is very important in overcoming the hurdles presented by diagnosis of Leukemia.  The importance of taking medication regularly is if utmost importance.  Sharing with close friends can be productive as it results in support.  Meeting other FOM can be highly motivating as a lot of positive ideas and suggestions emerge in dealing with CML.  

Testimonials & BHAI-GIRI
Few selected FOM from Kolkata shared their stories to the FOM present at the meeting.  This was followed by Pramod and Nirmesh who presented a spontaneous skit full of humor in true Mumbai don style.  Inbuilt in all their puns and punches were important messages namely:-
To fight CML by managing the side effects as Glivec is effective in CML management.  
Take your medication regularly!!!
Before we broke for a sumptuous lunch served on the venue grounds , Rajat Dada and Beena ji presented a comprehensive Vote of Thanks.

2pm   post Lunch session
The Doctors panel was introduced by Vidya ji and Sharon of Max India while Kolkata FOM Neel welcomed the doctors noting how this interaction was always the highlight of our meetings .

Dr. S H Advani – MD FICP, FNAMS – Jaslok Hospital & Research Centre, Mumbai
Dr. Sarmila Chandra – Haemato-Oncologist – Park Nursing Home, Kolkata
Dr. R. N. Ghosh – Head of Department – Haemato-Oncology – Thakurpukur Cancer Centre Welfare Home & Research Institute, Kolkata
Dr. Pankaj Malhotra – Assistant Professor, Hematology – PGI Chandigarh
Dr. Ashish Mukherjee – Director, Netaji Subhash Chandra Bise Institute
Dr. Senthil Rajappa – Associate Professor of Medical Oncology – Nizam’s Institute of Medical Sciences, Hyderabad
Dr. Raghunadharao – Professor & Head of Department, Medical Oncology – Nizam’s Institute of Medical Sciences, Hyderabad
Dr. Tapan Saikia – Head Medical Oncology – Prince Aly Khan Hospital, Mumbai

Dr Ashis Mukherji opened with a welcome note and Dr. R. N. Ghosh presented with basic information on CML.  
Dr. Tapan Saikia introduced the concept of Case Studies and this was followed up with a typical case study by Dr Pankaj Malhotra.  The case study format was undertaken so a lot of questions from the audience were unilaterally answered effectively by the panel.  

Case study presented on managing side effects and compliance.
Over all, most patients can manage the side effects of Gliveec.  The efficacy/survival rate from 5 years of data for patients on Gliveec were extremely good.  However this required periodic monitoring by way of tests which include complete blood count as well as the bone marrow or the bcr/abl test.  

Case study presented on Gliveec used by elderly patients.
A case study was presented regarding a patient who went off Glivec completely in an attempt to pursue alternative homeopathy treatment.  This patient had his white blood counts stable initially.  However, by the time the patient discovers that his white blood counts have increased, its too late.  The patient during the absence of Glivec administration progresses to blast phase and succumbs to CML.  The importance of continued medication without breaks is highlighted by this case study.  

Case study presented on female patients in context to medication vis-à-vis pregnancy.  
This case study covers issues related to pregnancy.  A patient consults her doctor and is advised to go off Glivec for a certain time during her pregnancy.  However, after the stipulated time suggested by the doctor, the patient has to get back on to Glivec.  

Following the case studies, the doctors took questions from various FOM who were who were on the GIPAP program.  Almost all the questions were patiently answered by the panel of doctors present at the meeting.  

4:00pm Vote of Thanks
Viji Amma once again thanked all the doctors, chief guest and guests present at the meeting.  She declared that an important announcement was to be made by the Chennai FOM.  Sriram along with his other Chennai FOM were called upon the stage and they announced that the next AIM 2010 would be held in Chennai.  

Before ending the day, the troupe from Shanti Niketan performed an elegant and graceful  dance on “Hum Hoonge Kaamyab” or “We shall overcome”.  Everyone present at the venue was touched by the song dance sequence.  The day ended with FOM and other members at the meeting breaking for tea and then the eagerly awaited Volunteer Dinner hosted by the Kolkata team before returning  home.  

What I take back home from the AIM – Kolkata meet.  
The AIM meeting in Kolkata was very different from the one I attended on 5th June 2005 in Mumbai.  
Although I had not met most of the FOM from Kolkata, there was an instant bonding.  The hosts made our stay hospitable in every possible way.  They provided all assistance in arrangement of accommodation and travel within the city and being our guides for tours in Kolkata.  I take back home a new bond of friendship from FOM Kolkata.    
The meeting was attended by a staggering 1000+ which included FOM and their family members, friends and/or caregivers and there were over 10 doctors on the panel.
Information was diverse ranging from Novartis Glivec original innovation
The information was very diverse and ranged from Novartis work in other areas to their newly commissioned NOA program.  
The significance of taking Glivec regularly.
The importance of sharing one’s stories with close friends and FOM as it inevitably leads to support.  
Last but not the least; I take back “Hum Honge Kaamyaab – We shall overcome”.

The Max Foundation’s success lies on the collective efforts of those responsible for its conception, execution and management.  My special thanks to Novartis, Pat , Viji Amma, Vidya ji, Beenaji, Ayeshah, Sharon, Ashok and Ashok.  


{mosimage}Reported by Kerul Patel

 

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