This year, World CML Day (22nd September) marks the 20th anniversary of the approval of the first targeted therapy in CML. It made a life-changing prognosis for CML patients all over the world and hence is considered as a landmark moment.
Every year Friends of Max and The Max Foundation celebrate World CML Day by organizing a Patient Support Group Meeting to bring together patients, caregivers and physicians. This year, as part of our World CML Day activities, we created a simple survey to gauge the Disease Awareness Levels amongst CMLers and their caregivers.
The Survey was circulated widely by Friends of Max over social media platforms like Facebook, Twitter, LinkedIn and Instagram; as well as WhatsApp and an Email group. By 9th September we had received 783 responses from 17 different countries of which 85% were from CML patients and 15% were from caregivers of CML patients.
The Survey helped us gain some very deep insights into the disease awareness levels and the information gaps that exist amongst patient groups and we wanted to share our learnings with our family of CMLers. So we decided to organize a Virtual Gathering with our CML family and an expert panel comprising of oncologists, prominent patient leaders, FOM Trustees and the Max team. This Virtual Gathering was organized on 19th September 2021 at 4PM on the Zoom platform. It was attended by over 120 patients, their caregivers, physicians and the Max team from all over India. We also had patient representatives from Nepal and Bangladesh attending this meeting.
The meeting began with FOM Trustee Pramod George explaining the importance of the World CML Day and why it is a day to be celebrated. He beautifully turned the exchange of chromosomes 9 and 22 into a love story, “A girl in room no. 9 started visiting a boy in room no. 22…..” He further stated that all CMLers are blood related and the date 9/22 is to be celebrated because it marks the rebirth of CMLers across the world. (TS- 0:02:14 – 0:05:01)
FOM Trustee Nirmesh Prakash then took the meeting forward and explained the rationale behind conducting the survey exercise and do so in his trademark “Bhai & Bhidu format”. (TS- 0:05:33) Some of the key points he mentioned were –
1. To ensure that everyone stays connected and updated in the world of CML – new techniques, medicines and treatments.
2. Friends of Max’s motto is “Together We Share and Learn” and we want to share what we have learnt from our physician partners, patient leaders and The Max Foundation.
3. To encourage people to research and find out more about CML.
4. To hear the voice of Friends of Max and get their feedback with respect to what we can do in the future to help reduce the information gap amongst patients and caregivers.
FOM Managing Trustee and The Max Foundation’s Region Head for South Asia – Viji Venkatesh then very kindly greeted the guests and shared her thoughts on the meeting so far, which was followed by a quick presentation on the Methodology and Outreach of the Survey by FOM Communications Manager Aashray Paul. (TS- 0:18:11 – 0:20:48)
Following a quick introduction of the day’s Expert Panel comprising of Dr Pankaj Malhotra, Dr Jude Vaz, Dr Raghu Krishnasawmy, S. Parameswaran, Dr Dipanwita Maiti and Beena Narayanan – we dove straight into the Analysis segment.
This segment was moderated by Viji Venkatesh and Aashray Paul and dealt with every single question featured in the survey. The results for each question were put on screen and panel members gave their explanations of the correct answer as well as their valuable insights on the level of difficulty, why they felt that people were able to answer/ not answer a particular question and other valuable suggestions. (TS- 0:21:07 – 2:20:00)
The Max Foundation’s Programme Officers Sudha Samineni & Anshika Tandon presided over the Open Discussion segment next and took the discussion to the audience. (TS- 2:20:21 – 2:53:24) After receiving some very useful feedback from the attendees, Max Programme Officer Priyanka Kandalgaokar delivered a very grateful Vote of Thanks. (TS- 2:53:25 – 2:58:19)
Casual conversation then started with the 60-odd attendees who were still keenly listening to the discussions. One thing led to another and Viji Venkatesh started an impromptu round of Antakshari where the sporty Dr Pankaj Malhotra stole the spotlight once again with his rendition of “Yaara o Yaara”. (TS- 3:03:00)
What a perfect way to end an amazing evening full sharing and learning together!
– Report by Aashray Paul, Communications Manager, Friends of Max.
*TS = Time Slot in the YouTube video
To read the in-depth analysis of the survey by our expert panel, click here.