Happy Heavenly Birthday, Kusum Malik Tomar

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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. 💛

Why almost half of Clinical Trial results remain unpublished?

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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  • 47% of trial results remain unpublished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I still don’t understand why so many trial results remain unpublished.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

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

Thread of Hope

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Hope and Regret – final 10 hours of Kusum in this world!!
Hey Kusum, my love,

It’s been six years today since cancer took you away from me. I wrote this blog, “Hope and Regret – The Final 10 Hours of Kusum in This World,” just three months after you left. And now, six years later, nothing has changed what has written in this blog. I still feel you around me just as much as I did then, yet I still yearn to hear your voice, to hug you, to laugh with you.

And those regrets… they haven’t faded. They still weigh on me, torment me. I keep thinking—I should have done more, I should have said something different, I shouldn’t have let you go. Though, deep down, I don’t even know what else I could have done.

But one thing I have ensured—your legacy lives on. Your love, your hope, your courage, and your unwavering positivity continue to touch lives. For our families, for millions of cancer patients and their loved ones, I have tried to be a thread of hope and keep it strong.

And you, my love—you are still making a difference. Through your work in transforming healthcare and cancer research in India, through the lives you touched, the patients you helped, the courage you showed—you continue to inspire, not just in India but across the world.

I miss you with every breath I take… until we meet again❣️.

Yours,
Vivek

Lung Health & Oncology National Conference

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Late post …..

I had the opportunity of being a speaker at the Lung Health & Oncology National Conference and joining an esteemed panel to discuss improving lung cancer care in India. The session was both powerful and insightful, focusing on the growing burden of lung cancer in the country.

We delved into pressing challenges such as air pollution & lung cancer, stigma associated with lung cancer, lack of awareness, early diagnosis, to make cancer a notifiable disease, holistic approach to tackle lung cancer (including mental health, palliative care).

We also explored solutions to improve access and affordability to the latest treatments for Indian cancer patients.

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

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

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.

Cancerversary

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Legends never truly leave us—they continue to inspire and uplift us every day. On Sunday, September 15, 2024, the ALK Positive India community, a support and advocacy group for ALK+ lung cancer patients in India, paid tribute to their co-founder, Kusum Malik Tomar, on her #Cancerversary. This special day marked the anniversary of her diagnosis, a celebration of life that she observed each year with deep gratitude and resilience.

Kusum’s unwavering strength and spirit taught us how to live fully, cherishing every moment. She was not only stronger than cancer, but she also showed us how to embrace life with grace and courage. ❤️

#Inspiration #LifeAndLegacy #ForeverInOurHearts”

A day at Boehringer Ingelheim

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I was honored to be invited as a guest speaker by one of the world’s leading pharmaceutical companies, “Boehringer Ingelheim”, at their India head office in Mumbai for their esteemed annual event, “Value Through Innovation.”

I was thrilled to see such an outstanding response and engagement from the audience with my talk. The positive feedback confirmed that Kusum and my message, emphasizing that “Research Matters” and “Research Saves Lives,” resonated deeply. And that we (industry, patient advocates, clinicians, policy makers) together must ensure the availability and access to research, innovative products, and clinical trials for everyone in need including to every patients living in LMICs like India.

The warm welcome, attentive listening, and genuine care I received touched me profoundly. It was also heartwarming to reconnect with my dear friend and a change agent of patient advocacy in India, Prabhat Kumar Sinha ji.

While I have received many awards and recognitions in my patient advocacy role, the recognition from Boehringer Ingelheim was especially meaningful. They honored me with ‘Garden of 100 trees‘ being planted at ‘Simplipal National Park‘ in Odisha, which can be tracked throughout their lifecycle. This gesture is truly beautiful for life long and helped me to contribute better to the environment.

#PatientAdvocacy #ResearchMatters #ResearchSavesLives #Love #Hope #ValueThroughInnovation #Environment #LungCancer #access #LMIC