9/22 International CML Day dawned wet and wild with late monsoon rains lashing the city but by the time all of the team and volunteers reached Kharghar, where the imposing campus of ACTREC is housed, about 60 km away from Mumbai, the frenzy had abated.
Being launched on this day was also a worldwide campaign based on a poignant , yet heartbreakingly straightforward appeal made by one young , bemused yet indignant boy in Thailand fighting CML.
He had asked his treating doctor “What is my PCR? “only to be told there was no need for him to worry about it and all would be well.
Out of that single appeal, The Max Foundation decided to create a movement that has made an indelible mark on everyone involved in CML world over. Thus was born the ‘What is MY PCR?” Campaign.
Background and Preparation
All of us at Friends of Max, led by totally motivated and inspiring Trustees who are representatives from each region came on board almost as soon the Campaign was announced. We believe that at the monthly Trustee meeting, they rose as one to the game plan when it was laid out in front of them by Amma.
We all know that in India, all the leading oncologists and hemato-oncologists have always kept pace with the latest trends in treatment protocol and the CML challenge has been met by them head on. In the face of the revolutionary changes wrought by the advent of treatment by Imatinib and the growing number of survivors, they took it upon themselves to offer their patients the best care and as the importance of periodic monitoring became apparent, to do their best to offer them the guidance and testing facilities needed.
The leading treatment centre for Cancer in India stands tall in the international arena of cancer care and so we did not have to go any further than our physicians in Tata Hospital to a) Allow us to hold the 9/22 celebratory event in their premises and b) get them to endorse the PCR Campaign with their wholehearted support .
So the gala event was planned, permissions obtained and responsibilities doled out to our volunteers in the FOM and Max India team.
Calls were made to the patients (an exhaustive list , an exhausting task but with a by now very experienced “Call team” this was taken care of well in advance . Confirmations coming in helped the Max India plan the programme and other related logistics.
Banners and other publicity material was next on the list and some excellent coordination with our staunch supporters Point Blank and Max India ensured we had everything we wanted , and on time !!
Amma tells us that a long meeting with Dr Hari Menon of Tata Hospital ensured that there was perfect understanding on the direction the content of the agenda would take. In the 11th year of treatment with Imatinib , with thousands of patients now living and leading their “new normal” lives , it was essential the emphasis of intervention now move from basic issues handled earlier to compliance and the importance of periodic monitoring to ensure good adherence behavior as well as keep track of their continued progress.
Dr Hari agreed to speak on the importance of CML Day and was happy to have us set up the Panel Discussion on “The importance and role of PCR in monitoring – Challenges faced and Solution offered” .
A celebratory Cricket Match was also planned between FOM and the team at ACTREC, where the event was planned. This is the state of the art satellite Centre of Tata set up on the outskirts of Mumbai which houses the BMT unit and over the last few months the CML OPD too has shifted there. So it was wonderful when their Director, Dr Rajiv Sarin invited MAX and FOM to conduct this all important programme in their premises.
The Big Day
The Registration Desk was set up, as were the all-important What is MY PCR stall and the FOM stall. The FOM and MI volunteers took their places and as the patients and their families walked in, hot breakfast was served to all by the Tata Hospital (Tata Hospital were the gracious hosts , providing delicious lunch and refreshing tea in the afternoon too) The physicians joined us during breakfast itself and by 10 am , when our EMCEE FOM Trustee Sujeesh called the meeting to attention we were all ready .
Dr Sarin, Director of ACTREC joined Dr Hari Menon and Dr Manju Sengar and his welcome address set the tone for the meeting. In a most unassuming manner, speaking in chaste, charming Hindi he acknowledged the need for designating a day apart for CML . He said as a Radiation Oncologist, during the early years, he and his other Registrar and Intern colleagues were always shown the typical CML Spleen as an example of this particular leukemia’s presenting symptom. Now, with Imatinib the whole CML scenario had changed and indeed a day set apart would help create awareness and establish good, long term disease management.
He had wonderful words for Novartis, who he said, have set an unprecedented example of a perfect access programme that should be emulated by others. He reserved his sweetest compliments for FOM and the Max Foundation for being there for patients and their caregivers at all times and offering valuable and effective support.
Dr Hari then came on stage to explain in his gentle yet disciplined manner the rationale behind designating 9/22 as CML Day. And spoke of the rewarding experience that managing CML patients had become thanks to the access programme put in place by Novartis and managed by MAX.
No FOM /MI meeting is complete without the trade mark Bhai & Bhidu show which has now achieved cult status here. Their 30 minute skit took the audience through various important, landmark notifications, giving a background explanation of what was to follow during the day. They laid the base for the PCR Campaign as well as explained the role and responsibilities of MAX and FOM. And, importantly, the changing face of the access programme in recent years. Considering there were many new patients in the audience, this was all the more relevant.
We were happy to see that Dr Sarin, who had said he could be with us for just 20 minutes, was practically glued to his chair and made no effort to leave. So entranced was he, to see the story of MAX and FOM unfold.
It was time for the official launch and the physicians were proud to come up on stage to do the honours. Outside, the PCR Stall had already attended to all the participants and distributed buttons and FAQ booklets. Later on the volunteers shared that many patients had lingered at the stall expressing their views on the campaign. All eager and positive.
It was then Amma’s turn to make the MAX presentation, and we could all feel the audience, including the physicians and the ACTREC staff were ready to listen to the story of Max, the access programme and the PCR Campaign and why this was specially chosen by MAX as a worthy and patient focused effort .
With slides made with the help of information from the PCR website Amma set about explaining the concept, the goals , the partnerships as well as the implementation of the campaign.
Then it was time for Dr Hari to explain in detail with a medical slant the importance of PCR testing and he held the audience spellbound. His talk led naturally to the all important Panel Discussion where he was joined by Dr Manju Sengar and three of the FOM core group members –all of them role models in compliance and peer support skills.
The more than an hour and a half long discussion on the need for periodic monitoring of BCR ABL levels with the PCR test, the challenges faced by patients, both financial, mental, cultural and social and sharing of the members of the panel as well as the audience providing solutions and guidance was a session that left everyone very, very satisfied. As always, the ice had to broken first before the audience opened up and this was done, as always, by the trusted sure fire method of planting a few questions with FOM volunteers.
It was time to break for lunch and Ayeshah was to present the vote of thanks, calling the MI team on stage as well as the FOM volunteers who had made the calls to the families inviting them. This is a great “know the team “exercise for the patients are able to put a face to the voices they hear.
But before that, there was one surprise item on the agenda. Dr Hari, who had his brought his guitar along keeping in mind a request Amma had made to him the previous meeting. He said, smiling shyly, I want to sing for this wonderful gathering.
You can imagine the gasp of amazed joy when Amma announced the surprise act – here was their seemingly stern and shy and reticent Dr Hari getting fitted with the collar mike and already strumming his guitar.
And then we were treated to some wonderful Bob Dylan and Simon and Garfunkel numbers. And if some of the audience did not understand the songs, they understood the language of love that had made Dr Hari go up on the stage and serenade them!!! What more could one need to celebrate CML Day?
But there was more to come. After a delicious lunch the grounds were inspected and sadly, the rains had dampened and damaged the Cricket pitch and it was feared that no match could be played. But spirits were not dampened and the rains were not allowed to become a wet blanket.
Cricket was replaced by Football and the two teams were at it before you could say Catch 22/9!!!
A refree with a whistle was appointed, the teams with their captains and goalkeepers announced and even a loudspeaker for Amma to give the mandatory running commentary. And even though she stumbled with differentiating between the Goal Keeper and Wicket Keeper and could not tell the Centre Forward from the Cover Drive or Mid on, she did manage to engage all the spectators and keep the energy levels running.
The game was exciting FOM leading 4-0 and then ACTREC catching up and equalizing to 4-4, and then winning on the Penalty Shoot Out.
Our hosts were the best hosts and we were happy to lose to them ( Of course we had loaned our star player David Vaz to them.
Look at the pictures that will be uploaded in the website to catch the full flavor of the event.
Manoj Panicker FOM Mumbai