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

The Covid 19 pandemic has brought-forth unprecedented issues including encouraging drugs prescribed without enough data, detractions of publications. All suggested the lack of education, awareness and best practices on Ethics in Research…….Therefore, a Not for Profit organization “Sangath Bhopal hub” came up with a unique digital course “DRISHTi” to strengthen the Health Research Ethics in the Indian setting…….I am pleased to be part of 40 leading experts and educators who has helped develop this 10 week certification program, which will also make one eligible to become ethics committee member.

As a patient advocate, I ensured to have voice, experience and expectations of patients be included and shared during this course.

Hope it will help to create better awareness and implement best practices of Ethics in Research in India for better, quality research benefits to the patients

As like most of my weekends, my last weekend also went into the service of cancer patients. But this was bit more special for me for few reasons:

1) I was invited as a speaker at “11th National Conference for Teenage and Young Adult Cancers” in the city of “Indore” in the state of Madhya Pradesh (an overnight journey from my place by train). When I saw, there were so many young kids as cancer patients, I was heartbroken….However, the spirit and zest for life in those kids were just amazing and a spiritual lift for me. That reminds us to do anything we can for better healthcare, for our generations to come.

2) There was a music band of young people who had defeated cancer and are now cancer free. After the conference, one of the guitarists came to meet me with his family. He and his family shared that when he was first diagnosed with Cancer, they found my late wife Kusum and my story and work of fighting with cancer on the internet, which gave them hope and motivation at the time of need. The young boy is cancer free and pursuing his career in music (the one with the beard and music instrument bag in the attached photo). The happiness of that family is the biggest reward for my work.

3) I also got the opportunity to meet Ravi Prakash. Ravi ji is renowned BBC Hindi reporter of India, and was 44 years old when he got diagnosed with Stage 4 EGFR lung cancer. While still learning about EGFR and lung cancer, he has started patient advocacy in India at amazing level and was successful to get 1 million INR per year financial assistance from the Jharkhand government to cancer patients. Thanks to Prabhat ji (who is in pharma industry with profession but one of the most passionate patient advocate by heart) for connecting me with Ravi ji.

3) Last but not least, this was the city where I had my first date with Kusum 15 years back, when she had finally accepted my proposal after my months of efforts (lucky me). There, I missed you a lot Kusum, alot.

#Cancer #PatientAdvocacy #Humanity #Hope #Love #RiseToSurviveCancer #LosingIsNotAnOption

In whatever profession we are, we need to remember that no one (be it a Doctor or Policy maker or Politician or Rich or Poor) is immune to disease/ illness. We will be a patient or caregiver for one disease or other, in our lifetime. We can’t see current patients community as a 2nd party or not our community.

When today we have strength or resources or time, we should invest to make things better for their today because that will make our future better, when we will become a patient or caregiver.

I am back at home, after a successful World Lung Cancer Conference in Vienna, with a number of workshops, learning, new partnerships, and meetings.

It was an honour and a huge responsibility to properly represent lung cancer patients from LMICs like India and to create new partnerships with patient advocates & groups from South Africa, Nigeria, US, UK, EU, Iran, etc., and as well as global oncogene focused patient support groups for ALK, EGFR, KRAS & ROS1.

Further, it was indeed great to have the opportunity to be able to raise concern on disparities in lung cancer treatment.

There was a lot of data presented on research as well as in areas like Air Pollution, which is now officially no. 2 cause of Lung cancer after tobacco; Significant increase of lung cancer cases in females…which will help in advocacy efforts to remove the stigma of lung cancer that it is not only a smoker’s disease….”Anyone with lungs can have lung cancer“.
#RemoveStigma
#LCSM
#WCLC22
#AirPollution
#LosingIsNotAnOption
#RiseToSurviveCancer

This week, one of my patient advocacy highlights was to be part of an esteemed panel on an extremely important topic on “Impact of Patient Advocacy in Modern Healthcare Delivery Mechanisms” at the IHW Council event of ‘Patient First Summit & Awards 2022‘.

It was a great discussion to share with established and budding patient support groups & advocates who have attended this event on – how patient advocacy has potential to move mountains, how it is already changing the face of India healthcare system for better and why we need more patient advocacy in India. And top of that, awarding those amazing patient advocates/ advocacy groups, who are selflessly serving patients in India.

#NotjingAboutUsWithoutUs #PatientAdvocacy #PatientsVoice
Vivek

I am honored to contribute along with world leading experts on this extremely important 𝐩𝐚𝐩𝐞𝐫 on 𝐂𝐚𝐧𝐜𝐞𝐫 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 in 𝐋𝐌𝐈𝐂𝐬 which got published in one the world’s top journal “𝐍𝐚𝐭𝐮𝐫𝐞 𝐌𝐞𝐝𝐢𝐜𝐢𝐧𝐞 (impact factor: 53.44)”. I have co-authored this paper along with:
– Tata Memorial Centre, Homi Bhabha National Institute, India,
– The Chief Scientist of WHO
– and Scientists and leading experts from:
> National Cancer Institute (NCI), USA
> University of Oxford, England
> University of Harvard, USA
> King’s College London,
> Queen’s University, Canada
> University of Toronto,
> University of North Carolina, USA
> National Cancer Institute of Sri Lanka.
> and scientists, researchers and oncologists from Turkey, Nepal, Kenya, Uganda, Malaysia, Ghana and France

This perspective paper is expected to be the 𝐠𝐮𝐢𝐝𝐢𝐧𝐠 𝐝𝐨𝐜𝐮𝐦𝐞𝐧𝐭 in 𝐩𝐨𝐥𝐢𝐜𝐲 𝐦𝐚𝐤𝐢𝐧𝐠 as path forward for Cancer Research globally, including with LMICs.

I, being the only patient advocate across the globe, as part of this initiative – it was great opportunity to work with best of minds and world leading experts for better future of our patients and cancer research, globally.

Snapshot of the article is attached and link of the full article is as https://www.nature.com/articles/s41591-022-01738-x  . Hope you connect with this article and be part of this initiative so no one (including in LMICs) left alone and everyone has access and benefits of Cancer research.

#ResearchSavesLives #LMIC #PatientAdvocacy #CancerResearch #PolicyMaking #LosingIsNotAnOption #RiseToSurviveCancer #PatientsVoiceMatters #NothingAboutUsWithoutUs

It was an honor and great opportunity to join the annual conference of Indian Society for Clinical Research (ISCR) as ‘𝐬𝐩𝐞𝐚𝐤𝐞𝐫’ along with my fellow esteemed panelists including Mr. Anirban Roy Chowdhury (VP, Bharat Serums and Vaccines), Dr. Kamala (President, Health Collaborations LLC) , Ms. Alpana (Founder, CureSMA Foundation of India), Ms. Ranjeet Kaur (President, Breast Cancer Welfare Association), Dr Seema Pai (Director, Pfizer Operations) and Dr Viraj Suvarna (VP, Biocon).

A conference attended by approx 5000 clinical researchers, hence a great opportunity to make them understand about 1) Patients’ perspective on Clinical Research and Clinical Trials; 2) From a side of protocols, subjects, studies to the side of Patients, Caregivers, Loved ones, fighting with life threatening diseases; 3) How patient advocates can help better outcome in clinical research and 4) a inspiring video and message from Kusum on how clinical trials access to research is answer to India’s healthcare problem.

It was heartwarming to hear the stories & work of fellow panelists in this exceptional insightful discussion. Leaders of pharma Industry/ ISCR promised to work on the points raised by us for better access to research & clinical trials for Indian patients and for betterment of patient care & experience during clinical trials. I will keep following up on these raised actions, until they implemented, as my Kusum used to say, Losing is Not An Option

#ResearchSavesLives

#PatientCentricity

#PatientsFirst