At the Support Group Meeting organized by The Max Foundation for Friends of Max, on Sunday, 17 December 2023, for CML patients of Basavatarakam Indo American Cancer Hospital in Hyderabad, Pramod Kumar Agarwal, FOM Trustee and City Chapter Leader, was interviewed and asked to share his views:
- How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?
Support Group Meetings play a very vital role in the lives of patients diagnosed with CML. Once diagnosed, patients are curious to know more about CML and how it is going to affect their lives. They have so many questions to ask and due to lack of time and maybe some hesitation, they are unable to ask their physicians during their OPD visits. Having such meetings helps them to get their answers which in turn boosts their confidence and gives them the inner strength to cope with CML. They also understand that they are not alone in this and are able to discuss their condition better with their doctors. Both patients and care givers get moral support and strength to overcome and live life in a dignified way.
2. Now it has been 20 years since we have been doing patient support group meetings, how do you think the meetings have evolved, what are the new changes in the discussions and workshops that you are seeing.
Today in our group there are many patients who have been taking their medicines for the last twenty years or so. While on one hand our meetings help newly diagnosed patients find their answers on the basics about CML and managing the treatment side effects, on the other hand new sessions are continuously being added to help older patients (who have been on treatment for ten years and more and have been coming for our meetings year after year) to find answers to new and important topics like life expectancy, Treatment Free Remission (TFR) and other such advancements from the world of CML.
The special workshop on ‘Know about CML’ App, helps patients to learn how to use technology to manage their CML, was conducted for patients for the very first time. Know Your CML App, which is a mobile App has been developed by CML Advocates Network, for CML patients by CML patients. The workshop helped to provide and teach the patients about the various features of the App and how it can be useful to them to track their CML and use as a self-management tool.
The Q&A session with the physicians was very informative. It was conducted in a friendly manner where the respectable doctors patiently provided answers to all the queries that were raised by the patients. As always, such sessions help to foster bonding between the patients and their treating physicians, thus helping patients to fight CML with ease and comfort.
At the end of the meeting the popular Art Therapy workshop was organised. All patients actively participated. Using art and colours to express their feeling of gratitude towards doctors, Novartis, The Max Foundation and Friends of Max, many new artworks were created. Art therapy workshop has always been an amazing session to provide an opportunity to patients to express what they are going through in life and how meetings like these are instilling a sense of hope and confidence in them.
3. What would you like to see in future meetings?
I would like to see FOM benefits reach more and more CML patients from weaker economic backgrounds, who with their diagnosis are finding it hard to manage things. FOM should try and contact such patients and make them aware of the various projects run by it like its Project Shiksha, At no cost diagnostics by CORE and the monthly Patient Support Group Meetings conducted by The Max Foundation for FOM.
We should also try to get the resource and information about the various State Government schemes run for our patients. This information slide must be prepared and the patients should be made aware of the same during our support group meetings.
4. In your experience with Support Group meetings, can you share a specific instance where you witnessed a notable impact or positive outcome for a patient?
I remember this patient’s case who during an eye checkup was diagnosed with CML. He was recommended to get in touch with The Max Foundation and its MAS program for access to free treatment. The patient who could not see but due to the MAS program has been able to fight and survive CML. It has helped to make his life somewhat easier. There is also another incident which comes to my mind about a patient who has been given the confidence and encouragement to go for Treatment Free Remission (TFR). FOM’s membership program is also making a positive impact on the CML community by reducing the financial burden of diagnostic tests, travel costs and increasing bonding with doctors.
