Last weekend was very busy for me in my volunteer work capacity, but was indeed productive…I was in back-to-back some amazing events, including:

– Speaker and Panelist at the “𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐋𝐮𝐧𝐠 𝐂𝐚𝐧𝐜𝐞𝐫 𝐒𝐮𝐫𝐯𝐢𝐯𝐨𝐫𝐬𝐡𝐢𝐩 𝐂𝐨𝐧𝐟𝐞𝐫𝐞𝐧𝐜𝐞” by the LUNGevity Foundation, US

– Speaker and Panelist at the “𝐈𝐧𝐝𝐢𝐚𝐧 𝐂𝐚𝐧𝐜𝐞𝐫 𝐒𝐨𝐜𝐢𝐞𝐭𝐲 𝐀𝐧𝐧𝐮𝐚𝐥 𝐒𝐞𝐦𝐢𝐧𝐚𝐫” in Delhi

– Speaker and Chief Guest at “𝐀𝐦𝐢𝐭𝐲 𝐔𝐧𝐢𝐯𝐞𝐫𝐬𝐢𝐭𝐲, 𝐈𝐧𝐬𝐭𝐢𝐭𝐮𝐭𝐞 𝐨𝐟 𝐏𝐡𝐚𝐫𝐦𝐚𝐜𝐲” on “World Pharmacist Day 2023”

At the International Lung Cancer Survivorship Conference, it was great to be on the panel with esteemed oncologists from the 𝐔𝐒, 𝐊𝐨𝐫𝐞𝐚, 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚. Kudos to the moderator Dr Amy Moore for such an engaging session, and Thanks a million to LUNGevity and its team especially my dearest Dr Upal Basu Roy bhai for the support and great work for lung cancer community. I raised and discussed the issue of equity, access and affordability in Lung Cancer care in India and Asia.
Healthcare is a basic right for everyone and not a privilege for the few. Until we ensure equal access & affordability in Lung Cancer globally, as my Kusum used to say, “Losing is Not an Option“! The event was joined by hundreds of participants from more than 𝟓𝟎 𝐜𝐨𝐮𝐧𝐭𝐫𝐢𝐞𝐬 to learn how to live well with lung cancer.

At the Indian Cancer Society Annual Seminar, I was a panelist and speaker along with India’s leading oncologists (Padam Shri awardee, the fourth-highest civilian award of the Republic of India), bureaucrats and NGO leaders. I spoke on the unfortunate situation of a lack of Clinical Trials in Cancer care in India. And from Cancer patients and caregivers’ perspective on why clinical trials are critical for access to the latest treatment, a better outcome, and long-term survival in cancer care.

At Amity Institute of Pharmacy on World Pharmacist Day, I was invited as to address a large gathering of pharmaceutical sciences students on “𝐖𝐨𝐫𝐥𝐝 𝐏𝐡𝐚𝐫𝐦𝐚𝐜𝐢𝐬𝐭 𝐃𝐚𝐲” to encourage and guide a new generation of talent for Pharma industry, Regulatory Affairs and Medical Writing.

For Kusum Malik Tomar, For Humanity
Vivek

It has been more than 4 years since Kusum aka Vibha passed away. However, I have kept her mobile number active; all her WhatsApp chats, emails, mobile games—everything is still here as it was with her.

Last night, I picked up Kusum’s mobile and was reading those old golden chats between me and her in her WhatsApp itself. When I was done, I kept her mobile aside and picked up my mobile…….And then I saw Kusum appearing as ‘online’ at my WhatsApp ….For next few seconds, I forgot everything; I forgot that she is no longer between us; I forgot that I was the one who was using her WhatsApp a second before….I felt like she went somewhere without contact and came back….And surely for a second, it felt like she was alive again…….My eyes started to search…….I was totally confused…..It felt like that my heart skipped a few beats and then started pumping like anything……That feeling I realized in those few seconds is impossible to describe and categorized,       but those few seconds…uffffffffff!!

And this is it, this is today’s blog….nothing much, but……

PS: Attention to all who have Kusum aka Vibha’s cell number: I would like to share that Suryansh (Kusum and my son), this amazing boy, has decided that he is taking Kusum’s mobile number and would use it as his permanent personal number. I know a few of you continued to send your personal messages to Kusum on her mobile number. I have never read them, as I know how personal, emotional, and important those messages are for you. However, in the future, you will not be able to send such messages…I am sorry for that! But at the same time, I am sure you would be happy seeing that Kusum’s number will remain active and will be used by none other than her son, and that you can dial that number again.

In memory and in love,
Vivek

#SpreadLoveSpreadHope #RiseToSurviveCancer #KusumVsCancer #Grief

I am pleased to share that I have recently been appointed to the Punjab State Oncology Expert Committee by the Government of State of Punjab, India🏥.

What makes this journey unique is that all committee members are esteemed clinicians or bureaucrats, and I am the sole patient advocate, representative for patients’ voices and experiences. It’s a testament to the importance of including the human aspect in healthcare decisions. 🗣️💪

Our goal is clear: to establish, review, and adopt policies that will shape Standard Treatment Guidelines for common cancers, including Breast, Lung, Cervical, Oral & Lip, and Hepato-cellular Carcinoma. The aim is to create policies and treatment protocols towards comprehensive, high-quality oncology services and to expand access to quality Cancer care in the state of Punjab with more than 110 million population, and with the ultimate goal of improving the outcomes and quality of life of cancer patients.💚

I’m deeply honored to be the bridge between patients and policy, and I look forward to contributing to better healthcare for all. 🙏

#PatientAdvocate #Healthcare #CancerCare #PunjabHealth #AdvisoryBoard #RiseToSurviveCancer

Kusum as student: As I heard from the friends, classmates, and parents of my wife, my love “Kusum aka Vibha,”  she was a bright student. Not a high scorer or topper, but a hardworking, studious, concept-based learning type student. Her parents were from a lower middle-class family from Rohtak, Haryana, where no one in her extended family was well qualified. A state where the girl-boy ratio was very poor and girl education was not encouraged. But Kusum’s amazing parents supported her education. But it was Kusum’s passion and dream to study more and more and make a successful career that led the way.

Kusum, education & cost: She was doing BSc (bachelor’s degree in Science) and then left it to pursue B.Pharm. (bachelor’s degree in Pharmacy), thinking that it may be a way to fulfil her dream. After B.Pharm., there was no money with family to support her higher studies, but she did again and qualified GATE, a tough competitive exam that gave her admission in one of India’s top institutes to get a postgraduate degree in Medical Chemistry (M.Pharm in Medical Chemistry), and that too with a 100% scholarship, covering every cost of her studies.

Kusum and me: Being lucky, I met her at Zydus Cadila, a leading pharma company in India, where she was doing her M.Pharm. dissertation project in Analytical R&D and I had joined the Drug Regulatory Affairs department as a regulatory scientist. I fell in love with her even before meeting her (that’s another story for another day to tell), and here we were getting married after a few months.

After completion of her M.Pharm. and post-marriage, her first job was as a clinical research scientist…..It is interesting that after her diagnosis with cancer, she had to participate in 7 clinical trials/ research medicine because all the approved standard treatments in India failed her. So, see how the table turns from being a clinical research scientist to becoming a patient searching for and participating in clinical trials.

She, Cancer, PhD & MBA:
Her passion for learning and study continued after our marriage, and she was committed to studying further. She secured admission to a PhD programme in pharmaceutical sciences for analytical research and development. But here comes the diagnosis for her stage 4 lung cancer (never smoker) metastatic to the brain, bones, ovaries, adnexa, et al. She was never able to be in a position to give the required energy and time for research, …..and her dream of a PhD remains a dream…

As she was not able to travel, work in labs, do research, etc., hence leaving her PhD, she took admission for a distance MBA. Despite her fight with Cancer, she passed three semesters of MBA, too, with distinction…….But God did not give her the required time to appear in her final semester exam……

Me & her wishes: On the other hand, I neither had interest in studying further nor had time with a full-time professional job that helped to earn bread for my family, where I never compromise in time and commitment, my volunteer work of cancer patient advocacy, and indeed a single dad job……..But I don’t know why I was feeling uneasy with the thought that all those academic wishes of Kusum remain unfulfilled. Though they were such wishes that ideally became null and void with her leaving this world,    but I was not getting peace. Hence, one day I decided that in memory and for my love, my Vibha, I would fulfil all those wishes. I have decided to give my nights and any possible available time to it………So, I got enrolled in PhD,….and here I am after a few years, Vivek has become Dr. Vivek….

If she is there, anywhere, I hope she is getting some peace like me to see those of her wishes fulfilled through me.

Knowing Kusum, you would assume that in the list that she had planned before and during Cancer, it could not only be PhD :-). You already know about MBA, and there are many others…..So watch this space for updates on my journey living and fulfilling my Kusum wish list 🙂

For love, for hope, for humanity,
Vivek

🌟 Thrilled to share this important update from my volunteer work! 🌟

I am delighted to announce that as a patient advocate, I had the privilege of co-leading an extraordinary study alongside passionate oncologists from India and the US. Our research focuses on shedding light on the critical issues faced by caregivers and families of cancer patients in India, taking a closer look at the pervasive challenge of Financial Toxicity.

I am immensely proud to share that our study has not only been published in a prestigious Springer Nature 2023 journal but has also garnered tremendous visibility. “The Times of India“, the largest selling English-language daily in the world, recently covered our research, further amplifying its impact and reach.

This study has expanded the conversation on Financial Toxicity beyond the borders of the United States. In examining the burdens faced by families and caregivers in India, we have delved into the intricate psychosocial dynamics that surround these challenges. Our findings underscore the urgent need to address these issues and offer actionable steps forward.

Our research dives deep into the evidence, potential interventions, and future directions to tackle the far-reaching consequences of financial toxicity in the context of cancer diagnoses. By illuminating the ways in which it affects access to care, the mental and emotional well-being of caregivers, and the overall family dynamics, we aim to inspire change and improve the lives of cancer patients and their support systems.

I am humbled by the significance of this work and its potential to bring attention to the unmet needs and challenges faced by cancer caregivers and families in India. Together, we are paving the way for transformative solutions. 🤞

If you’re interested in learning more about our study and recommendations, which encapsulate global perspectives and experiences of families and caregivers, I encourage you to read the published article in the esteemed Springer journal.

I would like to express my heartfelt gratitude to everyone who has supported and contributed to this endeavor. Let’s continue our mission to make a positive impact in the lives of those affected by cancer and work towards a brighter future.

#CancerResearch #Caregivers #FamilySupport #PatientAdvocacy #TransformativeResearch #India #FinacialToxicity

For love, hope and humanity,

Vivek

I am back on the road with my ‘Run for Cause‘ initiative….Today 5th June is “World Environment Day 2023“, and I ran a half-marathon to raise awareness about environmental and health Impacts of air pollution (air pollution is now one of the leading causes of lung cancer globally (a significant number of new lung cancer cases are non-smokers and due to air pollution).

Today, on World Environment Day, I urge you:
– to help in creating awareness that air pollution is causing a flood of lung cancer, especially in young and women,
– to ensure that you and I do not become a cause of air pollution where it can be avoided,
– to plant at least one tree this year to ensure that it gives shade and oxygen to us and our generations to come.

#WorldEnvironmentDay2023
#PlantTheTrees
#SaveTheEnvironment
#LungCancerAwareness
#TheWhiteRibbonProject 
#RiseToSurviveCancer 
#KusumVsCancer

I was recently in Zurich, Switzerland, to attend the Global Lung Cancer Patient Council meeting, supported by Roche. I was the only and first-ever patient advocate from India and the APAC region at this council. This has made it a great opportunity as well as a responsibility. For the next few days, there was amazing brainstorming, collaboration, and partnership-building to create ways to help the lung cancer patient community globally especially for LMICs.

The first material, which was developed by the Global Lung Patient Council, is going to be released soon, so watch this space.

In the attached photos, the first group photo with kind of dancing post is of the council where most of members are lung cancer patients and few caregivers, but with this energy, it is hard to guess. The second photo is of my friend “Alexandra Nunez” from Costa Rica, who has been fighting lung cancer for 12 years. Lucky for me, she allowed me to accompany her while she visited the peak of Mt. Titlis.

#PatientsFirst  #PatientAdvocacy  #LungCancer  #EquityAndInclusion  #APAC  #India  #LMIC  #collaboration  #community  #Hope

In my final major assignment for this year as part of my Patient Advocacy social service work, I spent few days last week in Mumbai, India, conducting a workshop for non-profit organizations (NGOs), patient advocacy groups (PAGs) and Doctors/ clinicians, during 6th Annual Year End Review in Lung Cancer meeting (which is one of the most esteemed and largest events in the area of Lung Cancer in India).

A total of 108 representatives of leading NGOs, PAGs, hospitals have attended this workshop. My topic was “Evolving Lung Cancer Treatment: Clinical Research and the Role of NGOs and PAGs”.

It was also great to be in panel discussion with amazing Dr Sewanti Limaye (Director of Medical & Precision Oncology, at Sir H. N. Reliance Foundation Hospital) and Vandana Gupta (Founder Vcare), with moderator Dr Vanita Noronha (Professor, Medical Oncology, Tata Memorial Hospital, Mumbai), such a wonderful discussion.

There was in depth brainstorming on how we can make ‘Lung Connect India (a unique initiative that is structured to support patients and caregivers of Lung Cancer in addressing their physical, functional, emotional, social, and financial needs)’ better accessible and supportive for all lung cancer patients and create better awareness.

For Humanity, For Hope, For Love,
Vivek

#LungCancer #ClinicalResearch #PatientSupport #PatientsFirst #RiseToSurviveCancer

Today is last day of November, which is also “Lung Cancer Awareness Month”. Before this month end, I seek your two-minute attention please, to share and emphasize that:
–       Lots of new lung cancer cases are found to be in Non-Smokers, including in female and young, globally.
–       As officially presented in World Lung Cancer Conference 2022, ‘Air Pollution’ is now number 2 cause for lung cancer.
–       Lung Cancer killing more ‘Women’ than breast cancer, colon cancer and prostate cancer together.
–       If Lung Cancer in ‘never smoker’ consider as a separate disease, that it will rank 7 in global cancer mortality.
–       90% of lung cancer patients diagnosed at stage IV only, because of either no symptoms at early stage or if any symptoms that used to ignored as well as misdiagnosed at any cold, cough as well as TB.
–       Lung Cancer is not one disease, it has so many types and subtypes with their own genomics, treatment that work in one mutation.  Even treatment like immunotherapy works in some types of lung cancer but not with mutations like ALK, EGFR.
–       Lung cancer is number one killer, starting to take face of pandemic globally with being diagnosed non-smokers, all genders and age…but still one of the lowest investments in lung cancer Research and Awareness campaign.
Hence please note that “#AnyoneWithLungsCanGetLungCancer” and lets raise better #awareness, #StopTheSTIGMA, push for more #research, fight against #AirPollution.

In same efforts, I am glad to partner with VOH, IHW council, AstraZeneca, Roche, leading Oncologists, media and policy makers to raise better awareness on these facts during #lungcancerawarenessmonth

Last week I was invited as speaker in my capacity of patient advocate and to represent India & LMICs Cancer patients at Economist Impact’s third annual ‘Future of Healthcare Week Asia’ in Singapore.

I was also invited by WhatsApp and Economist Impact on ‘invitation only’ roundtable discussion. It was great opportunity to discuss openly under The Chatman House Rule.

My topic was “DEI in the DNA: improving diversity, equity and inclusion in healthcare” and I strongly believe this is the urgent unmet need. Everyone has equal right to life and quality & timely healthcare access. Every life is equally important, life a mother of someone suffering with a disease in US or Singapore or India or Africa is equally important for their kids and warrant same accessibility, affordability and equity.
It was so great to be part of panel discussion along with amazing Jennifer Buckley (Founder and managing Director, Sweef Capital) and Deborah Seifert (Country Manager and DEI leader, Pfizer)

It was so great to meet “Clair Deevy” Global director of social impact of WhatsApp and discuss in detail regarding features to patient support groups over whatsapp vs other social media platforms.

The ‘Future of Healthcare Week Asia’ event was attended by 4,000+ to examine the vulnerabilities and opportunities that the recent crisis has catalysed. Over 3 days, policymakers, healthcare providers, academics and scientists shared practical learnings with representatives from industry, patient associations, charities and finance.

Health Ministry officials from 8 countries has also attended this event, and I got opportunity to 1:1 few of these key policy makers, leaders of WHO, world bank, IHH healthcare, USAID (US govt) etc.

For Humanity, For Love, For Hope, For Kusum,

Vivek