A Report by Ramanathan Seshadri
The Leadership Summit 2016 was held at the picturesque city of Kochi on 17th and 18th of December 2016. As the morning of 17th December dawned, FOM leaders from different city chapters started arriving. The registration desk was in place and all formalities of registration, check-in to the assigned hotel was completed during forenoon and the attendees converged for lunch at the Venue.
The meeting started with a wonderful welcome address delivered by Beena and Pramod. Friends of Max extended a warm welcome to the attendees to the city of Kochi.
This was followed by an inspiring film on the Friends of Max that was presented by Bindu Sujeesh. The film depicted lucidly the story of three of the FOM advocates Hira Goma, Kerul Patel and Suresh Pawar highlighting their journey after they had been diagnosed with CML. The film went on to conclude that they were only three representatives of the 17500 patients who are under the umbrella of Friends of Max. The recurrent theme was alike, that the persons who were traversing did get a jolt when they were detected with CML, but with some comforting support, could overcome and continue with their normal life and even excel in their respective fields. The celebrity Salman Khan, a well acclaimed advocate, also spoke up in support of the activities of FOM.
Thereafter Nirmesh and Pramod in their customary Bhai & Bhidu format engrossed the audience with the different happenings of the recent past and assessed their impact on the activities of the Friends of Max. They broadly categorized them under negative and positive depending on the nature of impact and summarized that the positives outweighed the negative.
Most notable among the negatives primarily were the recent change in government policy to impose customs duty on Glivec which has very adversely impacted the distribution the drug to the 17500 recipients.
Among the highlights were the tremendous successes of the Chai for Cancer campaign and FOM’s registration under FCRA which could enable it to accept overseas contributions. They also touched upon the recent change in Government policy and its impact. They advocated that FOM would need to go on a Membership drive to enroll more of the 17500 patients in its fold.
One distinctive feature of the Leadership Summit held over the different years has been the august presence of Madam Pat Garcia-Gonzalez, the CEO of The Max Foundation who always makes it a point to attend the meet, all the way from Seattle in the US. Madam Pat presented a keynote address as the Guest of Honour and gave a lucid picture of the different changes in the horizon which have ensued in the past year making it a challenging year for all in the fraternity. Primarily, the levy on Glivec that was being distributed free to the 17500 patients and the challenges arising out of it, were touched upon. She lamented that potential patients could not get added to the program for the past ten months. However, she went on to say that changes are bound to take place but they bring about opportunities too. The need of the hour therefore imposes a responsibility to do something for the future by planning with foresight and arriving at promising solutions.
The meet unfortunately missed the presence of one of its very dear patron Mr Ranjit Shahani, the Vice-Chairman & Managing Director of Novartis India who has always been there to support Friends of Max. Although Mr Shahani could not be present for the occasion, his address was read out by Beena. He was pleased to let the audience know that Glivec had been conferred with the ‘Discovery of the Decade’ award in 2016 by the Prix Galleon Foundation. He also emphasized that Novartis has been making every effort to provide patients with access to drugs and shall continue their endeavors. He also commended the patients of CML who have braved the different challenges and have remained firm and strong like the Rock of Gibraltar.
There was an interesting talk by Amit Vaidya who runs an NGO called The Healing Vaidya Foundation. Shri Vaidya touched upon the different Do’s and Don’ts a patient needs to know to fight the disease. His main strategies hinged at being positive and have a positive outlook towards the different aspects like side effects. Notwithstanding that, suffering would be there but acceptance is the key and the aim of a patient should be to fight the disease rather than let the disease take control.
The enlightening panel discussions with doctors which are always a cherished hallmark of FOM meetings was up next. Two of the doctors in different fields, Dr Nikhil and Dr Raghu, were called upon to conduct the panel discussions. The panel discussion was split into three segments to cover the different facets of the domain.
The first session was moderated by Dr Tapan Saikia and had the following doctors in the panel.
Dr V.P. Gangadharan
Dr S. Ramanan
Dr Pankaj Malhotra
The following FOM members were also in the panel:
Shailaja from Hyderabad
Rajdeep from Delhi
Shajahan from Calicut
Nandini from Chennai.
The session addressed the essential topic of Late Toxicities of TKIs and addressed the different side-effects some of the patients encounter while taking TKIs and the doctors’-panel suggested suitable remedial action.
The side-effects were distinctly taken up organ wise and the following areas were touched upon:
Lungs & Pleura
Gastro Intestinal Track
The second doctor session was moderated by Dr Hari Menon and had the following doctors in the panel:
Dr. Rejiv Rajendranath
Madam Pat Garcia-Gonzalez CEO, The Max Foundation
The panel dealt on the topic of Treatment-free Remission. They went on to educate the house on the changes taking place in this area, the different trails and data that are available and the approach taken by different doctors . The session evinced considerable interest as there was a paradigm shift in the approach from a line that hitherto was that patients starting on TKIs required taking them lifelong to discontinuing of the drug under intensive monitoring. The session comprehensively addressed the approach being taken by doctors worldwide towards discontinuing of drugs on different levels, duration and remission. The aspects of relapse, legal protection, and psychological effects of stoppage were coherently addressed. Worldwide statistics that are available were also deliberated which projected that 40 to 48 % of the patients could be off the medicine in the coming days.
The third medical session was moderated by Dr Pankaj Malhotra and had the following doctors in the panel:
Dr. Rejiv Rajendranath
The session deliberated on the different guidelines that were in vogue on different aspects of CML treatment. Dr Malhotra in his opening remarks emphasized that CML is the most common leukemia in the adult population in South Asia and the median age of patients is 30 to 40 years. The Asian guidelines in vogue with regard to economical or financial aspects, literacy levels and treatment-abandonment were also touched upon. The different examination doctors carry out on potential CML patients was elaborated, including general examination like:
History of physical examination
Spleen size (Sokal Score)
CBC & Seeum Chemistry (LFT, RFT, Uric acids, Calcium etc)
Evaluation of co morbidities
Ultrasound of the abdomen
H BS Ag, HCV, HIV
HLA test etc.
The CML specific examination would include
CBC with DLC
Bone marrow aspiration and biopsy
Bone Marrow Cytogenetics
RT/RQ PCR from Peripheral Blood
Type of Transcripts
HLA test etc were broadly discussed
The standard starting therapies and dosage were presented
After a captivating session with the doctors, the meeting moved on to deliberate upon the efforts that could be made to harness technology and have systems that can be an aid to the patients. Amrita Patidar and Viji Venkatesh got the session started by saying that advancements in technology are sprinting at a rapid pace and this has thrown up a lot of devices, mechanisms and applications that can be put to good use by the patients in the areas of awareness, compliance and dissemination of information.
Broadly four sub-sessions covered different such potentially useful developments:
- Manoj Panicker and Abhishek Patidar covered the salient features of a CML App that has so many helpful features.
- Nirmesh and Ravi Kumar educated the audience about the in-house FOM page giving valuable information about CML today.
- Sesh and Roopa Mahesh demonstrated a portal that would enable different FOM City Groups to be in the know of different happenings and reminders through SMS.
- Vicky and Nikhil gave insights on how the WhatsApp features and systems could be effectively used for gain.
There was a very special session to conclude the day for which Shashikant invited Madam Pat Garcia-Gonzalez to the podium. Madam Pat narrated the tremendous success of the Chain for Cancer campaign as a fund raiser and lauded the painstaking efforts of setting up Chai for Cancer Addas in different areas of the United States including the office of The Max Foundation at Seattle. She also commended a Max Foundation functionary Ms Tracy for generating a mammoth $ 9000 from one Adda. She called upon the Trustees of FOM, India and handed over a cheque of $20,000 which was raised from the different Adda’s held over the year in the USA.
Madam Pat later went on to say that The Max Foundation has instituted an Excellence Award to recognize Excellence in Exemplary Achievement, Outstanding Contributions in champion the cause of The Max Foundation. She announced that she had immense pleasure in announcing that the Board of Max Foundation had decided to confer Ms Viji Venkatesh, Region Head of The Max Foundation – India and South Asia with the coveted award for 2016.
Ms Viji Venkatesh accepted the award and spoke that she was greatly humbled and honored to be receiving The Excellence Award. She offered her sincerest gratitude to her team for this honor.
The Meeting adjourned for the day for dinner.