A CML and GIST Patient Support Group Meeting was organized by The Max Foundation for Friends of Max, on Saturday, 18 May, 2024, in Nashik. Milan Hakani, attending Pune FOM City Chapter Leader, was interviewed and asked to share his views:
1. How do these gatherings impact individuals, and what emotions surface when connecting with the FOM Community?
This is my second meeting in Nashik, which I attended alongside fellow FOM Pune City Chapter Leaders/Volunteers- Shashikant ji, Yogiraj ji and Suniti ji. While registering patients in the morning, we witnessed how eagerly they, along with their caregivers and families, look forward to these meetings. These gatherings are like an energy drink, which adds an extra “josh” and gives them new confidence, to face their CML diagnosis. The patients also get an opportunity to meet and express their gratitude to The Max Foundation, Amma and to Friends of Max, who have been tirelessly supporting them and their families for the past twenty years or so.
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?
Over the past twenty years, much has changed in our society, in the field of CML treatments and in patients’ lifestyles. These meetings serve as a platform for patients to stay connected and updated with the latest information in the world of CML, including managing treatment side-effects, planning for pregnancy, when and how to stop taking medicines, and accessing quality and affordable diagnostic support, among other topics. During the Q&A session, the patients have the opportunity to ask their questions to the physicians and The Max Foundation team as they progress in the CML journey. The meetings provide a safe platform to find appropriate solutions and to make informed decisions.
3. What would you like to see in future meetings?
In future meetings, on behalf of FOM, we should offer updated information on cancer-related insurance, workplace support for patients, and their special status in society. In addition to doctors, we should also invite experts from these fields, such as insurance and HR professionals, to provide comprehensive insights.
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?
It was very satisfying to see that no patients, caregivers and family members had any objection to their photos being published. This demonstrates a fearless mindset, which I believe is a direct outcome of the meetings, discussions and workshops that we conduct. Secondly, I was very pleased to see the baton being taken forward by two young girls who took the lead in the discussions and supporting patients.
Overall, the meeting helped dispel misunderstandings and misconceptions about cancer, fostering confidence in patients and their families.
