Tag: patientadvocacy

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

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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

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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

Why I Still Do This

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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.

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

𝐏𝐚𝐭𝐢𝐞𝐧𝐭-𝐂𝐞𝐧𝐭𝐫𝐢𝐜 𝐏𝐮𝐛𝐥𝐢𝐜 𝐇𝐞𝐚𝐥𝐭𝐡 𝐀𝐝𝐯𝐨𝐜𝐚𝐭𝐞 𝐨𝐟 𝐭𝐡𝐞 𝐘𝐞𝐚𝐫

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I am deeply humbled to be recognized as the “𝐏𝐚𝐭𝐢𝐞𝐧𝐭-𝐂𝐞𝐧𝐭𝐫𝐢𝐜 𝐏𝐮𝐛𝐥𝐢𝐜 𝐇𝐞𝐚𝐥𝐭𝐡 𝐀𝐝𝐯𝐨𝐜𝐚𝐭𝐞 𝐨𝐟 𝐭𝐡𝐞 𝐘𝐞𝐚𝐫” for year 2024 at the 𝑃𝑎𝑡𝑖𝑒𝑛𝑡 𝐹𝑖𝑟𝑠𝑡 𝑆𝑢𝑚𝑚𝑖𝑡 𝑎𝑛𝑑 𝐴𝑤𝑎𝑟𝑑𝑠 𝑐𝑒𝑟𝑒𝑚𝑜𝑛𝑦 in Mumbai, in the presence of hundreds of leading policymakers, industry leaders, patient advocates, clinicians, scientists, and society dignitaries.

While the true reward lies in seeing the positive impact on patients’ lives, this honor is especially meaningful as it spans all disease areas—not just cancer—reflecting the importance of championing public health and placing patients at the heart of care.

This award is not just mine; it’s a testament to the collective efforts of countless #PatientAdvocates who work tirelessly and selflessly for this noble cause…and indeed this award is for and in memory of my wife Kusum Malik Tomar ♥️

At the core of public health is the belief that “𝐞𝐯𝐞𝐫𝐲 𝐯𝐨𝐢𝐜𝐞 𝐦𝐚𝐭𝐭𝐞𝐫𝐬.” Personally, I believe that “𝐞𝐯𝐞𝐫𝐲 𝐥𝐢𝐟𝐞 𝐦𝐚𝐭𝐭𝐞𝐫𝐬.” These beliefs inspires me to continue advocating for solutions that truly prioritize the needs of patients.

Together, let’s strive to build a healthier, more equitable future.

#PatientAdvocacy #PublicHealth #PatientsFirst #EquitableHealthcare

Changemaker at the Asia Lung Cancer Conference

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Recently, I had the honor of representing the voice of lung cancer patients as the first Indian Patient Advocate to lead a workshop on Patient Advocacy for oncologists, researchers, and emerging patient advocates from across Asia at the Asia Lung Cancer Conference (ACLC) in Hong Kong.

The 2024 Asia Conference on Lung Cancer (ACLC 2024) took place from October 17 to 19, 2024, organized by the International Association for the Study of Lung Cancer (IASLC). This gathering spotlighted the latest advancements in lung cancer research, treatment methodologies, and clinical practices, serving as a beacon of hope for progress in the field.

This platform provided an invaluable opportunity to become a changemaker to foster a transformative shift in patient advocacy for lung cancer across the Asia-Pacific region. It allowed me to bring together patient advocates from various countries, guiding and empowering them with the knowledge, experience, and tools they need to become more effective voices for change.

It was truly inspiring to connect and collaborate with such an incredible group of fellow patient advocacy leaders and dear friends in this groundbreaking initiative, all united by the goal of improving healthcare for cancer patients in Asia.

Special thanks to IASLC team, Janet Freeman (ROS1Ders), Lillian Leigh (Chair of the workshop), and the remarkable Dr. Upal Basu Roy (LUNGevity) for their unwavering support and for making this opportunity possible.