In the global oncology landscape, “Patient Centricity” is everywhere. It’s on corporate banners and in mission statements. But as a patient advocate in India, I often find myself asking: Who is paying for the dignity of that seat at the table?

In the West, it is increasingly standard for pharmaceutical companies and non-profits to offer honoraria to patient advocates. They recognize that lived experience is a specialized, unique expertise that cannot be found in a textbook.

The Reality in India: Inclusion or Illustration?

In India, the story is very different. With rare exceptions, most organizations – including global pharma branches and well-funded non-profits – often treat patient advocates as ornamental rather than essential.

While everyone else in the room is there in a professional capacity, advocates are frequently expected to provide their time and insights for free. Even more concerning is when sponsored events fail to cover basic logistics or travel. In these scenarios:

• The Oncologist is compensated for their clinical expertise.
  
• The Organizer is compensated for their coordination.
  
• The Patient Advocate is often expected to self-fund their participation, essentially paying out of their own pocket to represent a community that is already struggling.

The Advocate’s Dilemma

This creates a painful choice:

• Keep attending: We maintain our hard-won seat at the table, but we risk validating a system that treats our lived experience as a “nice-to-have” add-on rather than a core contribution.
  
• Stop attending: We lose our influence, and the conversation reverts to an era where decisions are made about us, without us.

From “Showpiece” to Partnership

We will always be volunteers for our cause – that is where our heart is. But there is a line between volunteering for patients and being used as a showpiece for a corporate agenda. We shouldn’t have to choose between our dignity and our impact. True partnership means that if an advocate’s voice is essential enough to be on the agenda, it is essential enough to be respected with the same equity shown to every other expert in that room.