The concept of patient-driven support group is still alien unfortunately in Malaysia. As I elaborated in previous posts, it was much to do with the taboo of cancer in our society. Patient still feel the shame and stigma of being labelled cancer sufferer and often suffer in silence. They retreat into their shell. Change in attitude cannot come soon enough and the moment I heard about the formation of a support group for Chronic Myeloid Leukaemia back in 2006, I jumped in to offer support pretty quickly. MaxFamily was born then, through the initiative of patients living with CML, who came together since the drug used to treat this form of cancer was provided by the Pharmaceutical giant, Novartis via an international NGO, the Max Foundation.
Since the Max Foundation supervise the provision and distribution of the said drug, Glivec, it was only natural for them to offer support for their clients. From this, the impetus for the formation of MaxFamily was seeded. The society has grown from strength to strength, much through the hard work and effort of the MaxStation Coordinator Miss Ong Mei Ching, ably supported by the committee members of the MaxFamily, and their President, Dr Razak, an Orthopaedic Surgoen and CML patient who is also on the medication.
The MaxFamily organises regular meetings, as a forum for patients and caregivers to learn more about their disease and also offer peer support especially to new patients. Their assistance has proven valuable and I am sure many of the members benefited greatly from such meet. Over the years, I was lucky enough to participate in their events, either as a speaker or facilitator. I even insisted on a few occasions to be present even if was not invited. I think they got the hint and decided to invite me this time …..
Their last meet was held at Shangri-La last Saturday, in conjunction with the ASEAN Federation of Haematology meeting held on the days previously. I participated in the public forum but the highlight of the show was most definitely the talk given by Dr Alan Teh. We were concerned at the beginning that the talk may be too technical, but it proved to be pitched just right, initiating a great Q&A session before the break. As Glivec has been proven to be a potent agent to control the disease, Dr Teh highlighted the importance of disease monitoring. He laid down the justification of regular check-ups and tests, how to deal with the known side-effects of the drugs and the alternatives should the drug fail. He also eluded to the fact that the drug was stopped, CML may return and patients may become ill again.
The forum came after the break, the panel being myself, Mr PT Teoh, a patient and Puan Jamaliah, wife of a CML sufferer. The session was mediated by Dr Razak. It addressed expectations issues and the often overlook psychological aspect of the diagnosis. I have to admit that the current state of affairs in terms of consultations may not be ideal but in light of the pressures of time and burden of work, the doctors looking after the patients with CML in general were doing the best that they can. We are certainly moving towards the age of patient autonomy, but the power can only be put in good use with good patient education and understanding by the Physicians.
After the serious discussion, came the fun. One of the MaxFamily member, Tony, is a local artist and has written a moving song about the Foundation, which he sang on the day. All together, it was a good session although I was hoping the turnout to be a bit better than it was. For more informations on the MaxFamily or CML treatment in general, please click here to land on the MaxFamily website.