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

🎗️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. 💗

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

Grateful to have led “Empowering Voices” – a patient advocacy workshop driving change across Asia at the IASLC’s Asia Conference on Lung Cancer 2025 #ACLC2025 in Vietnam!

When conversations run over time, you know the dialogue is real and impactful.

From our conversations, two key rate-limiting factors in Vietnam’s lung cancer care became clear:
> Communication gaps between patients and providers
> Limited access to medicines

In a recent survey shared during IIT workshop, 78% of Vietnamese patients said they want their caregiver involved in treatment decision-making – yet patient input today remains minimal.

This underscores the urgent need to amplify patient voices, foster open communication, and expand equitable access to life-saving therapies.

Every step toward empowering patients is a step toward better outcomes – and together, we’re moving that needle. 💙

Grateful to my fellow patient advocacy leaders Lillian Leigh (Australia), Caleb (Nigeria), as well as Dr. Giang Nguyen Huong (National Cancer Institute, Vietnam), and IASLC for their partnership and support in making this happen. 🙏

#LCSM #PatientsFirst #CancerCare #HealthEquity #PatientAdvocacy #AnyoneWithLungsCanGetLungCancer

Earlier this month in Spain, at the World Conference on Lung Cancer – a gathering of over 7,000 participants from more than 100 countries – I had the incredible honour of becoming the first Indian 🇮🇳 to receive the STARS Award.

This recognition was not just a personal milestone but a moment that represents the growing voice of patients and advocates from India and other low- and middle-income countries (LMICs) on the global stage.

During the conference, I had the privilege to:

~ Participate in panel discussions with leading experts, where I spoke about the realities, challenges, and hopes of patients in India and LMICs.

~ Present my first-ever academic poster at world lung cancer conference : “Advancing Lung Cancer Advocacy in Low- and Middle-Income Countries”, based on important work and studies from the African region.

These moments were humbling reminders of why advocacy matters – to ensure that the voices of patients are heard, their struggles understood, and their needs addressed.

I am deeply grateful to my friends and colleagues across the patient advocacy, medical, biopharmaceutical, and research communities in India and worldwide.

I also extend heartfelt thanks to the International Association for the Study of Lung Cancer (IASLC) for this recognition and for creating such meaningful opportunities for advocates like me.

As India’s first ‘Patient Research Advocate’ in oncology, this award strengthens my commitment to keep pushing forward – to improve lung cancer care, support research, and champion patient advocacy, especially in countries where resources are limited.

This journey is not mine alone – it belongs to every patient, caregiver, and advocate working tirelessly to make a difference. 💙🌍

#WCLC2025 #PatientAdvocacy #ResearchSavesLives #LungCancer #RiseToSurviveCancer #ALKPositiveIndia

In memory and love of Kusum Malik Tomar

Vivek

Late post…..

Truly honored to be invited as a Keynote Speaker and Faculty at the globally renowned CReDO (International Collaboration for Research Method Development in Oncology) Workshop – an incredible platform shaping the future of cancer research.

It was inspiring to engage with:

• Hundreds of passionate early-career oncologists, surgeons, radiation oncologists, joined as research students,

• So great to become faculty along 45 brilliant faculty members from ASCO, The Lancet Oncology, Nature Reviews, Kings’ College London, NCI, IAEA, EORTC, and fellow global patients advocacy leaders,

• 17 world-renowned biostatisticians,

Experts & researchers from 20+ countries.

Amidst the breathtaking landscape of Lonavala, we worked together to transform bold cancer research ideas into real studies – because #ResearchSavesLives

Grateful to be part of this journey and to contribute to something bigger than ourselves!

In memory of my wife Kusum Tomar, and to help millions of cancer patients out there in dire need of latest treatment

#CancerResearch
#TogetherForACure
#AdvancingCancerCare

I had the incredible opportunity to participate and contribute to the initiative on ‘Patient Centricity and Public Awareness of Clinical Research in India‘ at Patient Advocates for Clinical Research Education and Regulatory Framework (PACER) workshop by Apar Health in collaboration with CanKids – Incredible work by Dr Pooja Sharma and team.

Great brainstorming with country’s leading Oncologists, Patient Advocates, Industry representatives and Researchers, Media for patient engagement, empowerment in clinical research in India, and brought forward important conversations on the urgent need for research and access to the latest treatments in India.

What truly touched my heart were the nukkad natak (street play) performances and the beautiful handmade painting gifted by brave cancer survivor kids. A powerful reminder of why we do what we do.

So great to meet old friends and community colleagues. And how everyone still lovingly remember our Kusum Malik Tomar and her exceptional contribution to the clinical trials and research in India.

Research Saves Lives

Happy Heavenly Birthday, my love, my life, my wife, Kusum Malik Tomar 🎂❤️

Like every 15th June,

– I ran 15 km today to raise #CancerAwareness , #LungCancerAwareness and #ResearchAwareness at iconic India Gate at Delhi.

– and then celebrated your birthday with cake, love, laugh, and lunch with the underprivileged special needs orphan kids…..These kids caretaker still remember you fondly, your smile, your warmth and the discussion on that quote from Mother Teressa #TheHungerOfLove #TheHungerOfBread

You celebrate there… I’ll keep celebrating you here.

A recent large-scale Cochrane review analyzing 165,135 clinical trials found that nearly half of all trial results never get published.

Key Findings:

• 47% of trial results remain unpublished
• Industry lags behind academia in publishing findings
• Median time to publication: Over 2 years

I reviewed the results of clinical trials in which Kusum participated and discovered that their findings were also never published.

Years ago, I helped raise this issue in an article ‘The mystery of India’s missing clinical trial results’ published in BMJ, presenting evidence and data on the lack of transparency in clinical trial reporting in India . Yet, even years later, the situation remains unchanged not only in India, but globally.

Why Does This Matter?

Transparency in medical research is crucial—it fosters trust, enables learning, and supports further advancements in medicine. Withholding trial results limits scientific progress and can have consequences for patient care.  

During BMJ article time, I remember the words from Dr Aju Mathew, from the University of Kentucky Markey Cancer Center in the US, and director of Kerala Cancer Care in Kochi, Kerala “Such non-publication of results is both scientifically and ethically problematic.”

I still don’t understand why so many trial results remain unpublished. What prevents from sharing the data?

🔗 Read the full analysis here: https://www.transparimed.org/single-post/cochrane-review-47-of-all-clinical-trial-results-are-not-made-public

#MedicalEthics
#PublicationBias
#ClinicalTrials

Vivek