Tuesday, 23 February 2016

Last words: The public awareness campaign on palliative care

#LastWords is a film made for the Indian Association of Palliative Care. Palliative care or end of days care is an alien concept in India with just 1 in 100 patients in need actually getting it. Awareness about this stream is the biggest hurdle and this film is an earnest attempt to bridge this gap and popularise palliative care. The film draws insight from nurses, who happen to be majority who hear the last words of dying patients, rather than their family members. When nurses across India recount the last words they have heard, it not just leaves a lump in the throat, but raises the all- important question-do not the dying deserve dignity? Should not the quality of death be as important as the quality of life? The end is a new beginning in this direction.

Monday, 22 February 2016

Pediatric Hematology Oncology Journal (PHOJ)

The pediatric oncology community in India has steadily been expanding and taking several giant strides as well as small steps in the field of research, capacity building, networking, developing standards, etc. One such important step is the genesis of a dedicated journal to display and disseminate high quality scientific work from India. The editorial board led by Gaurva Narula as well as the leadership of the Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics have to be congratulated on this initiative. I have no doubt that the excellent quality of work being done in India would provide the perfect foundation to take the journal to a level where it becomes one of the preferred destinations for global pediatric oncology research.

Wednesday, 3 February 2016

Tuesday, 8 December 2015

Collaboration - in Africa and in India

Collaboration among colleagues, institutions and indeed countries has been a cornerstone in the successful journey to improving the outcomes of children with cancer. The scientific literature is replete with examples of such collaborations. At the same time, there is also a glaring absence of scientific literature related to childhood cancer on collaboration among individuals and institutions in low and middle income countries till recently. There have been several positive developments in the last decade, most notable among them are AHOPCA (collaboration among Central American countries) and GFAOP (collaboration among several francophone African nations) and the benefits of these collaborations are becoming quickly evident.

Another such collaboration is the Collaborative Wilms Tumour Africa Project, a remarkable initiative by colleagues from 8 institutions in 5 countries in Sub-Saharan Africa (Cameroon, Ethiopia, Ghana, Malawi, Uganda).

Their aim is very simple - take a curable childhood cancer (like Wilms tumour), treat in a standard scientific manner keeping in mind the local support services and at the same time build capacity in terms of guidelines, pathology, radiology, supportive care, etc. Having received funding from several organisations including World Child Cancer and the the International Society of Pediatric Oncology, the project has taken off well and has recruited more than 100 patients into the study. It is truly my honour to be associated as an ambassador to this project. I personally, continue to be inspired by the whole project and the individuals involved including my dear friend Trijn Israels. More information on this can be found on the dedicated website http://paedonc.wix.com/wilmsafricaproject.

And this brings me to India, where we have also suffered from the lack of collaboration among individuals and institutions. This is now rapidly changing and the rejuvenation of Indian Pediatric Oncology Group as well as the start of two multi-centre studies on Hodgkin disease (already recruiting in 11 centres in India) as well as on acute lymphoblastic leukmeia (recruitment to start shortly) under its umbrella are exciting developments. More on this in the future.