The Price of a Seat at the Table

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.

Beyond the Page: Bringing our Mission to Life on Instagram too

The Power of Connection For years, this blogsite has been a sanctuary for my community – a place where we dive deep into lung cancer research, patient advocacy, and the global policy changes we need in LMICs and beyond. It has been a privilege to connect with readers from 50+ countries.

But as now I work on the memoir for Kusum and push through my own 50-day journey of resilience, and that volunteer work of patient advocacy isn’t just about the words we write; it’s about the lives we lead every day.

Why Instagram? Why Now? I have decided to launch a dedicated public Instagram profile: @risetosurvivecancer.

While this blog will remain the home for my long-form research updates and detailed advocacy reports, Instagram will be the “Live Newsroom” of our mission. It’s where I will share:

  • Daily Resilience: Real-time updates from my 50-day fitness and advocacy challenge.
  • Behind-the-Scenes: Insights into the research lab, global conferences, and the making of the memoir.
  • Travel & Hope: Clips from my journeys (like the recent trip to South Africa) that show the human side of this fight.
  • The Memoir Journey: Exclusive snippets and reflections from the book I am writing for Kusum.

Keeping the Focus I want to be clear: the technical depth and global advocacy work you value on this blog aren’t going anywhere. Instead, Instagram allows a space for us to interact more closely, share quick wins, and build a more visible movement.

Join the Conversation If you have been part of this global community, I invite you to join me on this new platform too. Let’s make our collective voice even louder.

Link to connect at Instagram: https://www.instagram.com/risetosurvivecancer/

Vivek

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

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

The Evolution of My Feminism

I believe our understanding of feminism isn’t something we just read in books; it is something that evolves through life and experience. I grew up surrounded by incredibly strong women.

My grandmother was the first in our extended family of farmers to step out and support the work in the fields, in addition to managing the household and the children. She did this to support my grandfather and ensure her children received the education they needed. Because of her hard work, my father became a lawyer, one uncle became a government school principal, and another uncle decided to pursue farming with better equipment and a better life.

When my father started his legal practice in a new city called Muzaffarnagar, in the state of Uttar Pradesh, we struggled. I still remember living in a distant small town called Shamli, in a single room that served as his office by day and our kitchen and bedroom by night. To help us survive, my mother began giving private tuitions, traveling from home to home while managing our household. Despite the hardships, she never stopped learning. She completed three separate Master of Arts (MA) degrees in an era when education for girls was still a distant dream for many, eventually securing a job as a government school teacher.

It was my mother’s sweat and dedication, alongside my father’s hard work, that allowed my brother and me to build successful lives.

Then, I married Kusum. She was the strongest of all.

Based on my respect for the women in my life, I had developed my own rigid “rules” for what feminism should look like. I thought changing a surname after marriage was wrong. I thought traditions like Karwa Chauth – a festival where a wife fasts and prays for the long life of her husband – were regressive. To “protect” her, I intentionally didn’t have Kusum’s surname changed.

But over time, I noticed something unexpected. In the college where she was working as an Associate Professor, and in many other places, she began signing her name as “Kusum Tomar” instead of Kusum Malik. I realized she wasn’t doing it out of pressure; she was doing it out of love. She loved being a wife; she loved the nuances of our culture, the sindoor, and the rituals.

The biggest lesson came through Karwa Chauth. I used to try to stop her from fasting – initially due to my own understanding of feminism, and later because of her battle with cancer. I would even fast in her place to support her beliefs, after her diagnosis with Cancer. But during her last Karwa Chauth before her death, even though she was very ill, she fought with me because she wanted to keep that fast. It was her choice, her faith, and her way of expressing love.

Those were the moments I realized that my desire to protect her was just the first step. The next step was understanding that true support means honoring her choice. Whether she chose to break a tradition or embrace one, my role was to stand by her and celebrate her.

I feel fortunate to have been shaped by such remarkable women. From my grandmother’s fields to my mother’s classrooms and Kusum’s courageous spirit, I have tried my best to learn from them and to stand with them. Today, I see feminism not just as a set of ideals, but as a deep, evolving respect for the path a woman chooses for herself.

I am proud of that journey, and I will continue to stand with the women who are and will be part of my life – with mutual respect, shared values, equality, support, understanding, and companionship.

Feminism #NariShakti #StrengthOfAWoman #IndianFamilies #LifeLessons #LegacyOfLove #KusumMemorial #GrowthMindset #ChoiceAndDignity #MenForEquality #RespectWomen

Why I Still Do This

People often ask me a question.

“It’s been seven years since you lost your wife to cancer.
Why are you still so deeply involved in helping cancer patients?
Why not move on… live a normal life?”

It’s a fair question.

Losing someone you love to cancer changes you in ways that are hard to explain. The world moves on, but a part of you remains in that hospital corridor, that chemotherapy room, that moment when life feels fragile and uncertain.

Many people assume that after such loss, the healthiest thing to do is to step away from it all. To distance yourself from hospitals, from patients, from the pain that comes with the word cancer.

But the truth is – for me, it works the opposite way.

Every time I think about stepping back, something happens that reminds me why I cannot.

Today, I received a message from a caregiver whose mother was undergoing treatment.

She wrote:

“She was a fighter and the backbone of our family. I would like to thank Vivek Sir from my heart for extending the span of my mother’s life.”

Her mother eventually passed away.

But those words stayed with me.

Not because they thank me – because I know very well that no doctor, researcher, or advocate can extend life on their own. Medicine fights, science tries, and sometimes the disease still wins.

But what matters is time.

Sometimes what we give families is not a cure.

Sometimes what we give them is time.

Time for a daughter to sit with her mother.
Time to celebrate one more birthday.
Time to share one more meal together.
Time to say the things that matter.

And when that time creates even a few more memories for a family – it means everything.

That is why I continue.

Because behind every case file is a family.
Behind every diagnosis is someone’s mother, father, partner, or child.
Behind every extra month or year is a lifetime of memories being created.

Cancer took my wife.

But it also gave me a purpose I cannot ignore. And not only this one message, I have recived hundreds of such messages during this journey.

If by being involved – through advocacy, support, awareness, or research – I can help even one family get a little more time together, then that effort is worth it.

That is why I still do this.

And that is why I probably always will.

Happy Holi

India is celebrating the festival of colours and happiness “Holi”

When Kusum was around, even Cancer was not able stop our fesitivities and happiness…..Keep celebrating the life everyone – each and every day, irrespective of situation.

Happy Holi to you all..May the fesitval of colors bring good health, love and happiness in your life đź«¶

“Excellence in Patient Advocacy & Empowerment” Award

On World Cancer Day, I am deeply humbled to recieve the “Excellence in Patient Advocacy & Empowerment” award, presented by the Health Minister of India of last tenure and senior bureaucrat of Government of India, in the presence of esteemed national and international dignitaries in New Delhi.

This recognition comes from my volunteer work as a patient advocate – standing with cancer patients and caregivers, and working towards a more compassionate, accessible, and patient-focused cancer care system in India.

I accept this award on behalf of every cancer patient and caregiver who struggles not just with illness, but with delays, lack of access and affordability – and whose lived experience deserves to be heard, respected, and reflected in health policy.

I remain hopeful that when policymakers return to decision-making forums, the patient voices shared and the conversations we held will continue to inform their choices.

The work continues – with empathy, courage, love, and hope 🙏….and for my Kusum Malik Tomar đź’™

#WorldCancerDay #PatientAdvocacy #CancerCare #HealthcareLeadership #UnitedByUnique

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

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:
đź”— Visit the Foundation page on Kusum Memorial Cancer Foundation

Launch of “The White Ribbon Project – India”

Today, Urvashi ji (a Stage IV lung cancer patient, fierce patient advocate, public health expert & a dear friend) and I proudly launch “The White Ribbon Project – India“, a new chapter in Lung Cancer awareness in our country. 🤍

Inspired by the remarkable work of The White Ribbon Project™ in the US, and with deep gratitude to Heidi Nafman Onda and Pierre Onda, we are committed to changing the lung cancer story in India – one ribbon, one voice, one community at a time.

For more information on “The White Ribbon Project – India” and how you can support & participate in this mission, visit:
https://risetosurvivecancer.com/the-white-ribbon-project-india/

In memory of my late wife Kusum Malik Tomar and so many who lost their lives to lung cancer – and for all those like Urvashi ji, who continue to fight with courage – this mission is for you. 🤍

#TheWhiteRibbonProjectIndia
#LungCancerAwareness
#EndTheStigma
#LCSM #LCAM
#LungCancerAwarenessMonth
#AnyOneWithLungsCanGetLungCancer
#RiseToSurviveCancer

With love and hope,
Vivek

Cancer Awareness Campaign with National Media

🎗️For the ongoing Breast Cancer Awareness Month (October) and the upcoming Lung Cancer Awareness Month (November), I had the previlege of joining Aaj Tak & India Today – India # 1 News Network – for a powerful panel discussion on Cancer Awareness — covering Early Detection, Myths vs. Facts, Survivorship, Research, and Representation.

I spoke as a patient advocate (in my volunteer work) and as a caregiver to my late wife & love Kusum, representing the voice of patients – a role that continues to inspire me every single day. đź’—

Because awareness isn’t just about knowledge – it’s about empathy, empowerment, and action.
Conversations like these help bridge the gap between medical systems and real human experiences – because every dialogue matters.

#BreastCancerAwareness #LungCancerAwareness #PatientAdvocacy #AwarenessMatters #VoiceOfPatients #CancerAwareness #PublicHealth #AajTak #IndiaToday #RiseToSurviveCancer