Tag: patientadvocacy

When Research Moves Forward, Who Gets to Move Forward With It?

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Research without access for those who need it most remains a theory on paper.

That thought stayed with me throughout the World Conference on Lung Cancer (WCLC26) in Seoul – but particularly during the moments when I had the opportunity to bring the patient perspective into rooms dominated by science, data and clinical research.

WCLC brought together more than 8,000 delegates from 106 countries, with over 2,000 abstracts – a remarkable global gathering of researchers, clinicians, investigators, scientists, policymakers and patient advocates working toward a better future for people living with lung cancer.

But for me, the most important question was not simply how far lung cancer research has come.

It was:

How do we make sure that progress reaches the patients who need it most?

Bringing access into the clinical conversation

One of the most meaningful opportunities for me at WCLC26 was being invited as a speaker for a CME-accredited session attended by doctors and other healthcare professionals, where I spoke about access, equity and the patient perspective in cancer care and research.

Speaking to a room where healthcare professionals is also present, a different responsibility from speaking to only a patient advocacy audience.

Clinicians and researchers see the world through evidence, treatment outcomes, clinical pathways and scientific possibilities.

Patients experience the same system through very different questions:

Can I access this treatment?

Can I afford it?

Is there a clinical trial I can participate in?

Will someone explain my options to me?

Does the healthcare system where I live give me the same opportunities as someone elsewhere in the world?

Scientific progress answers some questions.

Patients live with the questions that remain.

And that is why patient voices need to be part of the conversation – not after research has been completed, but while we are deciding what research matters, how it is conducted and how its outcomes can reach people.

The evidence behind the conversation

That conversation was particularly meaningful because I was also able to present research examining India’s representation in global lung cancer clinical trials over a 20-year period.

The finding was striking:

India accounts for approximately 5.7% of the global lung cancer disease burden, yet contributed only 1.41% of global lung cancer trials in the registry analysis.

Numbers like these should make us pause.

Clinical trials are not simply mechanisms for developing new medicines. They are also pathways through which patients can gain access to innovation, contribute to scientific knowledge, and ensure that research addresses the realities of different populations.

When countries and populations carrying a significant disease burden are underrepresented in research, we need to ask whether the evidence being generated fully reflects the diversity of patients who will eventually need those treatments.

This is particularly important for lower- and middle-income countries, where the burden of cancer is substantial but access to research and clinical trials can remain uneven.

India cannot simply be a recipient of global cancer innovation.

India – and other underrepresented regions – need to be part of creating the evidence that shapes the future of cancer care.

Humanizing research in the press room

Another special opportunity was participating in the IASLC press briefing alongside leading researchers and investigators.

Scientific research is often presented through numbers – response rates, survival curves, biomarkers, trial populations and statistical outcomes.

All of that is essential.

But behind every number is a person.

During the press briefing, I had the opportunity to bring the patient perspective into discussions around the research being presented – helping humanize the science and reminding us that every clinical endpoint ultimately represents someone’s life, someone’s family and someone’s hope.

This is one of the roles I value most as a patient advocate:

connecting the science with the person behind the science.

Researchers may ask whether an intervention works.

Patients also ask whether they can reach it.

Researchers may measure efficacy.

Patients experience effectiveness through quality of life, side effects, affordability, accessibility and the ability to continue living their lives.

Both perspectives are necessary.

Innovation is not the same as access

The world is moving rapidly in cancer research. New targeted therapies, immunotherapies, diagnostics, biomarkers and increasingly sophisticated approaches to precision medicine are changing what is possible.

But scientific progress alone does not guarantee health progress.

A treatment that exists but cannot be accessed is not the same as a treatment that is available.

A clinical trial that is technically open to a population but practically inaccessible to that population does not create meaningful inclusion.

And research that does not sufficiently include patients from different parts of the world risks leaving important questions unanswered.

We cannot measure the success of cancer innovation only by how quickly we discover something new. We must also ask how equitably that discovery reaches the people who need it.

Patients must have a seat at the table

Patient involvement in cancer research should not be limited to telling personal stories.

Patients can contribute to conversations about what research questions matter, how trials are designed, what outcomes are meaningful, how information is communicated, what barriers prevent participation, and what makes care genuinely patient-centred.

And patient voices from India and other lower- and middle-income countries need to be part of these conversations from the beginning – not added at the end.

Representation matters.

Geography matters.

Affordability matters.

Healthcare infrastructure matters.

And lived experience matters.

If we want truly global cancer research, then global participation cannot simply mean inviting the world to attend a conference. It must mean enabling the world to participate in the research itself – and benefit from what that research produces.

The conversation cannot end in Seoul

WCLC26 gave me the opportunity to contribute in three very different but connected ways: speaking to healthcare professionals about access and equity, presenting research that highlighted an important gap in clinical trial participation, and bringing the patient perspective into conversations around emerging research at the press briefing.

For me, these were not three separate experiences.

They were three parts of the same conversation.

Science tells us what is possible.
Research tells us what works.
Patients remind us who it needs to work for.

The challenge now is to build a clinical research ecosystem where patients in India, Africa, Southeast Asia, Latin America and other underrepresented regions are not merely recipients of innovations developed elsewhere, but active participants in creating the evidence and innovations that will shape their own futures.

How do we make trials more accessible?

How do we address affordability?

How do we strengthen research infrastructure?

How do we improve awareness and referral pathways?

How do we ensure regulatory and healthcare systems can support innovation while protecting patients?

And perhaps most importantly:

How do we ensure that the postcode, passport or bank balance of a patient does not determine whether they have access to tomorrow’s cancer care?

These are not questions that researchers can answer alone.

They require clinicians, investigators, pharmaceutical companies, regulators, policymakers, healthcare systems and — critically — patients and caregivers to work together.

WCLC reminded me that science can move incredibly fast.

Our responsibility is to make sure access keeps pace with it.

Listen. Learn. Advocate. Act.

Because the future of cancer research should not belong only to the patients who can reach it.

It should belong to all of us.

Invited to the Table, But Not Enabled to Be There

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Patient advocacy should not mean unpaid, unsupported participation

There is another uncomfortable dimension to this conversation.

In many mature healthcare and research ecosystems globally, patient engagement is increasingly recognised as a professional contribution, not merely voluntary goodwill. Patient advocates participating in conferences, advisory boards, policy consultations, research initiatives and industry discussions may receive appropriate support for travel, accommodation and other participation-related expenses – and, where the nature of the engagement warrants it, honoraria for their time, expertise and contribution.

The principle is simple:

Lived experience has value.

A patient advocate is not simply a person who happens to have had cancer. They may bring years of experience navigating treatment, healthcare systems, clinical research, financial toxicity, quality-of-life issues and the realities faced by patients and caregivers.

That expertise deserves recognition.

In India, however, we still have a long way to go.

Patient voices are too often treated as an add-on, a symbolic presence or a formality rather than as an essential stakeholder voice. Patients may be invited to a panel, given a few minutes to speak or included in a photograph – but meaningful participation, representation and support are still far from being the norm.

And this creates a paradox.

We say we want patient-centric healthcare, but the patient is often the least empowered participant in the room.

We talk about equity, while the person representing lived experience may have to personally absorb the cost of travelling hundreds or thousands of kilometres to participate.

We talk about valuing patient voice, while expecting that voice to be provided entirely on a voluntary basis, even when other stakeholders are participating as professionals representing well-resourced institutions.

We need to ask ourselves honestly:

Are we inviting patients because we genuinely value what they bring – or because patient inclusion has become something we feel we are expected to demonstrate?

There is a difference between patient presence and patient participation.

And there is an even bigger difference between participation and meaningful influence.

India’s patient advocacy ecosystem is evolving rapidly, and there are certainly organisations, researchers, clinicians, policymakers and industry leaders who are doing this well. But these examples need to become the norm rather than the exception.

Patient advocates should not have to repeatedly justify why their travel needs to be supported.

They should not have to prove that their time has value.

And they should not have to choose between contributing to healthcare policy and personally bearing costs that other stakeholders would ordinarily not be expected to bear.

If we genuinely believe that nothing about patients should be decided without patients, then we must also create the practical conditions that allow patients to be present, heard and respected.

Patient inclusion cannot remain a showpiece. It has to become a standard.

Taking Lung Cancer Awareness to the Top of the World

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Yesterday, on World Lung Cancer Day, as I travelled back home – after my motorcycle expedition across the Himalayas to the 𝐰𝐨𝐫𝐥𝐝’𝐬 𝐡𝐢𝐠𝐡𝐞𝐬𝐭 𝐦𝐨𝐭𝐨𝐫𝐚𝐛𝐥𝐞 𝐫𝐨𝐚𝐝, I carried the White Ribbon, to raise Lung Cancer Awareness.

The journey took me through
~ Crossing 8 high mountain passes (3 of the World’s Top 10 Highest Motorable Passes),
~ 6 majestic Himalayan Lakes (including the Highest brackish water high-altitude lakes on earth),
~ High Altitiude Mountain Sickness – Struggle for Oxygen, Breathing – Headache, Vomitting
~ Crossed countless Water Streams and Rivers,
~ Sand Dunes,
~ the Cold Desert,
~ and ever-changing mountain Weather – from Rain and Hailstorms to Scorching Sunshine, Strong Winds, Snow

But this journey wasn’t about reaching a destination with Guinness World Record

It was about carrying a message.

Behind these photographs were 𝐭𝐡𝐨𝐮𝐬𝐚𝐧𝐝𝐬 𝐨𝐟 𝐤𝐢𝐥𝐨𝐦𝐞𝐭𝐫𝐞𝐬 of riding, resilience, and purpose.

For me, this mission is deeply personal.

Having lost my beloved wife, Kusum Malik Tomar, to Stage IV lung cancer, I know firsthand how devastating this disease can be.

In memory of my Kusum, I have dedicate myself to lung cancer awareness and patient advocacy, so that fewer families have to endure what ours did.

Every conversation about lung cancer matters.

Every opportunity to encourage earlier diagnosis matters.

Every effort to improve access to treatment, research, and patient support matters.

𝐁𝐞𝐜𝐚𝐮𝐬𝐞 𝐚𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐡𝐚𝐬 𝐧𝐨 𝐚𝐥𝐭𝐢𝐭𝐮𝐝𝐞 𝐥𝐢𝐦𝐢𝐭.

𝐀𝐧𝐝 𝐛𝐞𝐜𝐚𝐮𝐬𝐞 𝐞𝐯𝐞𝐫𝐲 𝐛𝐫𝐞𝐚𝐭𝐡 𝐦𝐚𝐭𝐭𝐞𝐫𝐬. 🎗️

#lungcancerawareness #losingisnotanoption🚫 #risetosurvivecancer #rideforacause❤️ #airpollution #patientadvocacy #everybreathmatters🫁 #ResearchSavesLives

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.