Tag: healthcare

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

Leave a comment

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

This time for Africa

Leave a comment

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

𝐏𝐚𝐭𝐢𝐞𝐧𝐭-𝐂𝐞𝐧𝐭𝐫𝐢𝐜 𝐏𝐮𝐛𝐥𝐢𝐜 𝐇𝐞𝐚𝐥𝐭𝐡 𝐀𝐝𝐯𝐨𝐜𝐚𝐭𝐞 𝐨𝐟 𝐭𝐡𝐞 𝐘𝐞𝐚𝐫

Leave a comment

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

Leave a comment

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

Leave a comment

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.