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The 6th National Conference: Teen & Young Adult Cancers

 

Harshad Purandare (FOM Volunteer during the Conference at Tata Memorial Hospital, Mumbai, 2-3 Sept 2017) believes in “structured activism” at three levels:  Government, Societal & Institutional levels. Here is his Report:

Teenage, Young and Adult – the most important phases of anyone’s life. All three phases are super dynamic and the transition is complex. When cancer strikes on the top of this journey, things become very complicated. A person suffering from this life-threatening condition has to change all priorities when already there are many others. Life stalls and then the long journey starts towards achieving the new normal. The TYA Conference was about addressing all the challenges and approach towards a better solution for people suffering from the condition during these phases. It becomes very important to understand TYA in a different perspective as the issues, expectations and approach towards TYA is very different.

I got an opportunity to be a part of the advocacy panel. Discussions were built around how cancer advocacy should be seen and improved: what challenges do people face, what is this concept, how does it help people, and what all is needed. There were multiple questions that were discussed with the aim of understanding how cancer advocacy can actually help bring about change for TYA cancer patients.

My two cents to the discussion was around pitching advocacy at the right stage. Advocacy cannot and should not be just activism. It has to be a structured activism which reaches the right audience at the right time via the right approach so that it can make a definitive change.India currently needs activism at 3 levels or rather at three different institutions types, all the more so in cancer space and specifically in TYA.

1. Government – Government holds true power in defining public health landscape – be it regulations, policy, tax related changes, subsidy, NGO related work, activism, prioritisation of health, or anything which is important and is applicable to the masses. We need to hit this spot real hard at the right time and in a regular fashion. It has to be seen in the form of a dialogue where we can build a sense of trust and true voices are heard and worked upon.

2. Society – Society needs awareness more than activism. In the Indian context, stigma still plays a big role and people don’t seek care, speak about it, discuss about it. Society as a whole is not so welcoming in nature. The masses still hold pre-conceived notions which are really bad for people’s health. A big transition is needed to change this mindset and this can only happen if we talk about it more, with more rationale and clarity of thought. The more that patients become self-aware and comfortable with their state of health, the better society’s acceptance will be.

3. Institutions – Advocacy is not just limited to places where people are not aware of  conditions in the real sense. It is very much needed in the spaces where the actual treatment happens. There are multiple rights and concerns which are not appreciated in the best way across our healthcare delivery institutions (there are challenges that the institutions face as well, but doesn’t mean we should skip our concerns and rights because of this). Information asymmetry still plays a major role in making patient less self-aware and confident. There is a need for processes which looks at treatment in a holistic approach, rather than just from a provider’s perspective. We can bring about some difference only once we at least start a conversation around these aspects.

I believe advocacy plays a very critical role in making a difference to the lives of those who don’t really have the power to raise their voice or demand something over and above all the demands which are necessary and not sufficient. Platforms like TYA should be strengthened even more so that we can move in a direction where people live comfortably with this ‘Crab’ synonym disease with the best normal they deserve.

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