Tag: health

The Price of a Seat at the Table

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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.

Why Speaking Up for India and LMICs in Global Healthcare is Non-Negotiable

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I recently had the privilege of representing India at a global advisory board meeting for lung cancer. These meetings are vital for shaping the future of oncology, yet a familiar pattern emerged: the discussion on “access” was almost entirely dominated by the landscapes of the US and the European Union.

While the challenges in those regions are real, “access” takes on a completely different meaning in India and other developing nations. In our context, it isn’t just about administrative hurdles; it’s about the fundamental availability of life-saving innovation for millions who are often left out of the global conversation.

The Power of the “Living Experience”

During the sessions, I made it a point to politely but firmly steer the conversation toward the missing voices of India and LMICs. It is easy for global boards to view these regions as “emerging markets,” but the reality is that we are the global hotspots for lung cancer. If we can solve the access puzzle in India, we can solve it anywhere.

I was heartened to see this message resonate. Shortly after the meeting, a senior colleague and representative from Australia shared his takeaways on LinkedIn, specifically highlighting that developing nations in Asia Pacific and India must continue to stand up to be heard.

Why Your Voice Matters

This experience reminded me of three critical truths for advocates:

  • Visibility is the first step to Access: If we aren’t at the table – or if we stay silent while at the table – the world will continue to design solutions that don’t fit our reality.
  • Data + Experience = Impact: Combining Health Technology Assessment (HTA) with the “living experience” of patients creates a narrative that even the most complex geopolitical or economic systems cannot overlook.
  • The Ripple Effect: When you speak up, you aren’t just influencing the person across from you. You are providing the language and the courage for other leaders to carry that message back to their own countries.

Moving Forward

Advocacy is often a long, uphill climb, but seeing the immediate impact of a single intervention at a global meeting is a powerful motivator. We must continue to demand that the global oncology conversation reflects the global reality.

Our voices are not just “participation” – they are the essential evidence required to build a more equitable healthcare future.

No One Should Fight Alone!

Vivek

Announcing the “Kusum Memorial Cancer Foundation”: A New Chapter in Patient Advocacy & Research

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We are proud to announce the official launch of the Kusum Memorial Cancer Foundation – a registered public charitable trust in India dedicated to transforming the cancer care landscape for patients, caregivers, and communities across the country.

stablished in memory of our Kusum Malik Tomar – India’s longest survivor of Stage IV lung cancer of her time, participant of number of clinical trials & research medicines, a patient advocate and co-founder of ALK Positive India, whose courage and resilience continue to inspire our commitment to dignity, hope, and scientific progress for cancer patients and caregivers. This Foundation represents a powerful vision for equitable, compassionate, and research-led cancer care and stronger patient voices in healthcare and policy.

A Mission Rooted in Impact

The Kusum Memorial Cancer Foundation has been established with a clear focus:
to empower cancer patients – especially those affected by lung cancer – with access to the latest treatments, evidence-based information, strong community support, and meaningful engagement in clinical research and policy.

This trust serves as the legal and governance umbrella for initiatives that have long been part of our community’s work and ethos, including:

  • Rise To Survive Cancer – our flagship patient advocacy platform
  • ALK Positive India – India’s first oncogene-focused support group for ALK+ NSCLC patients, established in year 2017
  • The White Ribbon Project – India – a movement to break stigma and drive lung cancer awareness and action, established in year 2025

Vision & Core Focus

At its heart, the Foundation is committed to a future where every cancer patient – regardless of cancer type, genetic profile, or socioeconomic background – has equitable access to cutting-edge treatment, compassionate care, and empowering support systems.

For the Foundation, advocacy is not just a cause — it’s a commitment to elevating patient voices, strengthening clinical research awareness, and influencing policy for long-term systemic change.

Governance & Commitment to Ethics

The Kusum Memorial Cancer Foundation is registered in India as a non-profit, non-commercial charitable trust. All activities are carried out without profit motive, and benefits are open to everyone irrespective of caste, religion, gender, race, or socioeconomic status.

This governance foundation ensures that patient welfare, transparency, and ethical practice remain central to every initiative.

Together, we can ensure that no one has to face cancer alone.

Read more about the Foundation’s vision, details and initiatives:
🔗 Visit the Foundation page on Kusum Memorial Cancer Foundation

This time for Africa

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In West Africa, a region of 16 countries has only one PET scan machine. Forget about treatment—the struggle begins with basic diagnostic tests. Meanwhile, in another part of the world, India’s capital region, Delhi NCR, has around 20 PET scan machines, and in the US and EU, dedicated PET scans exist solely for animals. This stark contrast underscores the urgent need for equitable healthcare access..

After doing workshop for Lung Cancer Patient Advocacy in Asia (HongKong), it was privilege to do Patient Advocacy workshop in Africa along with global patient advocacy leaders at first-ever IASLC PAN Africa Lung Cancer Conference in Ghana.

Though resources in Africa are limited, the passion and determination are immense.

Recognizing Champions of Change

Huge appreciation for:

  • Caleb (Nigeria’s first lung cancer patient advocate, a friend, a change maker, and the one whose brainchild this conference is)
  • Jill Feldman (Founder of EGFR Resisters, 16-year lung cancer survivor, one of the most passionate lung cancer patient advocacy leader, and a dear friend)
  • Dr. Upal Basu Roy (Executive Director at LUNGevity, the largest lung cancer NGO, a great human being, and a bhai to me)

Their leadership and dedication made this conference and workshop truly impactful.

Moments That Moved Me

After my talk, three moments made me realize: Good Deeds Go Far!

  • Dr. Nini (Oncologist, Nigeria): “Your advocacy helped not just Indian patients but also Africans accessing ALK lung cancer care.”
  • A Ugandan medical student: “I’ve followed your work for years—it inspired me to enter & better serve patients.”
  • An African patient advocate: “If he can do it in India, why can’t we in Africa?”

A Call to Action

I remain committed to improving healthcare—not just for Indian cancer patients but for all of LMICs & global healthcare. I urge every stakeholder to join this mission.

Let’s continue to #SparkAChange and take this movement forward. And until we achieve this, remember what my Kusum used to say – Losing Is Not An Option!

#EveryLifeMatters
#NoOneShouldFightAlone
#PatientAdvocacy

Vivek

National Cancer Grid Annual Meeting

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Late post…..I got the incredibly opportunity to have represented the voice of patients at the National Cancer Grid annual meeting in partnership with the Government of India, WHO, ASCO, and other global organizations. I had the privilege of sitting on a panel with some truly remarkable leaders, including:
– Prof. K VijayRaghavan – Principal Scientific Advisor to PM of India
– Dr. Ravi Kannan – Padma Shri and Ramon Magsaysay Awardee
– Mrs Usha Thorat – Dy Governor RBI and Hon. Secretary ICS
– Prof. Om Narasimhan – London School of Economics
– Dr. Anant Bhan – Ethics Mentor and Mental Health Researcher
– Prof. Nachiket Mor – Scientist, Economist, ISB, Lancet Commission
– Dr. Yogesh Kalkonde – Public Health Practitioner
With invaluable inputs and support from Dr. CS Pramesh, Director, Tata Memorial Hospital and Dr Soumya Swaminathan, WHO chief Scientist.

What makes this moment even more special is that I’m now part of the founding team of the National Cancer Grid for Mental Health in Cancer. Our mission is to integrate mental health care within comprehensive cancer treatment programs and make this a national standard across India.

The event brought together over 300 esteemed leaders in oncology, public health, and research from 14 countries and national & global organizations including National Health Authority, eminent professors from IIT, WHO, ASCO, focused on strengthening cancer control across India and ASEAN.

This powerful collaboration reaffirmed a vital message: when science, ethics, economics, and patient values unite, we can build a healthcare system can truly be proud of. Here’s to making a difference, step by step. 💙

And indeed, it was lovely to meet with so many friends of patient care as well as medical community 🤗

#PatientVoiceMatters #PatientAdvocacy #CancerCare #ResearchSavesLives #MentalHealth