Cancer is a dreadful disease which affects not just patients but takes down the whole family with it, to abysmal depths of darkness & void. Majority unlucky succumb to it but few who are lucky & fight with it, succeed to become Victor.
Anyone who has seen Cancer patients understand how painful it is to live with Cancer, its suffering, every other day, new situation, different side effects, financial & emotional drain-out while helplessly seeing those unanswerable questions in family members eyes & especially when you have a small child. But Kusum Malik Tomar aka Vibha and Vivek Tomar (Kusum’s husband) did not allow it to break them and never lost hope. Kusum and Vivek have shown tremendous courage to not only fight with this dreadful disease but also to fight with issues in the healthcare system of India, and helped thousands of Cancer patients.
Kusum, a never-smoker, at age of 29, a mother of 3 years old son, in 2012, who was living in small town of India, was diagnosed with Stage 4 Lung cancer metastatic to Brain and other parts of body including Bones, Ovaries, Uterus, Adnexa, Stomach. Kusum had a rare type of Lung Cancer which is Non-Small Cell Lung Cancer (NSCLC) with Anaplastic Lymphoma Kinase (ALK) gene mutation/rearrangement. Given 6 months to 1 year life expectancy, Kusum has celebrated her 7 year survival with Stage IV cancer & at that time, she was the longest survivor at Stage 4 for ALK Lung Cancer mutation in India.
However in those 7 years, she has almost lost her life at least 5 times, as all available medicines in India were exhausted & she did not have access to the latest medicines & treatment for her type of cancer, which was available in many other countries but India. It was so frustrating & helpless to see your loved one in severe pain and struggling for survival, as you do not have access to a medicine which could save her but available in many other countries. To get access to those latest medicines in India to save Kusum was an uphill and painful task for Vivek. This scenario and cancer patients struggle to survive, made Vivek and Kusum an active, passionate advocate for ‘Lung Cancer’, ‘Clinical Trials’, ‘Cancer Research’ & ‘Timely Access to Latest Treatment’ in India. We have been working under the name of “Rise To Survive Cancer” a patient advocacy initiative since 2017.
Informed patients are key to survival in Cancer and patient support group/ NGO play key roles here. However even at patient level, there was not a dedicated lung cancer patient support group in India but there were many available for breast cancer, blood cancer etc. Therefore Kusum and Vivek has co-founded “ALK Positive India” which is India’s first oncogene focused Lung Cancer patient support group. This patient support group is part of global community of ALK positive lung cancer is 80 plus countries.
After 7 long years of fighting with stage IV cancer, unfortunately Kusum passed away on 5th Feb 2019 and left this world physically. Till her last breath, she was smiling and sharing hope and did not stop advocacy for fellow Cancer patients. I (Vivek), in honor and love of Kusum and for service to mankind, is continuing with work of patient advocacy as a mission.
As we have experienced and as we strongly believe that Cancer is Not an End, if Kusum was continued to Survive and Live Quality Life at Stage IV Cancer (in Lungs to Brain, Bones & other parts of body) for such long years with Hope, Courage, Clinical Research and Latest Treatment….SO CAN EVERYONE…..Just one has to Rise and become Advocate for themselves…One has to Rise to Survive Cancer.
In our journey to fight with cancer, improve the healthcare system for all, ensure access to the latest treatment in India, help in navigating right treatment, we are able to help to many thousands patients…and it is so satisfying to see that we were able to contribute to save thousands of cancer patients life in India. This journey is long but until we achieve the best treatment and support for cancer patients in India, as in-line globally – I ‘Vivek’ hereby commit not to stop…as Kusum used to say, until we achieve this “Losing Is Not An Option“
Today, Vivek in his volunteer work capacity, working as
- Patient Advocate for Clinical Trials, Cancer Research, Lung Cancer and Timely Access to Latest Treatment in India.
- Advisor as patient advocate for Government of India, Non-profit, Research centres and Pharma Cos, on Cancer, Research & Care.
- Co-founder ‘Rise to Survive Cancer’ a Patient Advocacy initiative and ‘ALK Positive India’ India’s 1st Oncogene-Focused Patient support group.
- Able to bring many Cancer medicines in India at record time and at lost cost, which is helping to save many thousand lives of cancer patients in India.
- Developing and delivering courses in partnership with Government of India and non-profits- for healthcare professionals and in general public on patients perspectives and patient advocacy.
- Guest faculty for Patient Advocacy course at SPJIMR (one of India’s Top 5 management institute), Rare Cancer Australia, Sangath NGO (for ethics in clinical research) and Ministry of Education (Government of India).
- Member of National Cancer Grid India and IASLC.
- Vivek is keynote speaker and panelist at many esteemed national and Internal conferences, events, workshops while representing India’s patients voice and doing advocacy work
- Vivek and his son Suryansh run to many running events to raise awareness for Clinical Trials, Cancer Research and Lung Cancer
- Vivek & Kusum’s story & advocacy work has featured in many national, international media including ‘The Week’, ‘The Hindu’, ‘Zee news’, ‘NDTV’, ‘Big FM’, ‘Josh Talks’, ‘Bloomberg’, ‘Aljazeera’, ‘The Quint‘ and also now part of a book ‘God is not fair?’
- Some few firsts:
- First patient advocate from India: To receive International Patient Advocacy Award at World Lung Cancer Conference in Canada 2018
- First patient advocate from India: To invited as speaker at World Lung Cancer Conference in 2021 to raise problems of this part of world in front of global community.
- First patient advocate from India: To invited as key note speaker at National Lung Cancer Conference of India 2020 to raise India lung cancer patients community
- First patient advocate from India: To invited as speaker at National Conference of Clinical Research 2022
- First patient advocate from India: became part of international advisory board for Cancer Research for Government of India
- Co-founded India’s first oncogene focused lung cancer patient support group
- Kusum was first patient from India to participate in 6 research medicines/ clinical trials for new cancer medicines access for patients of India.
Kusum and Vivek’s story of Love, Hope, Courage with Research and Helping other patients and Improving Healthcare Systems becomes motivation for millions. Their story and work is covered my many national and international media….Below is the highlight of some of the advocacy & patient support work we have & are doing and media coverage:
> Recipient of “International Patient Advocacy Award 2018” at ‘World Lung Cancer Conference’ in Toronto, Canada
For the work of Lung cancer patients & community in India and globally, Vivek was awarded with ‘International Patient Advocacy Award’ at ’19th World Conference of Lung Cancer’ in Toronto, Canada.
It was an honour to represent India & its lung cancer patients at a gathering of 7500 members of the Lung Cancer community including Clinicians, Researchers, leading Oncologists, patient advocates, Industry & other stakeholders at World Lung Cancer Conference.
> Appointed in Advisory Board for Cancer Research by Government of India
Vivek has been appointed in Advisory Board by Government of India for an ambitious joint Cancer Research project between India and UK
It is an honor as well as huge responsibility to join advisory board and to represent millions of Indian Cancer patients for 10 million pounds (86 crore INR) Cancer Research project between Cancer Research UK (which is the largest cancer research funder in the UK) and Department of Biotechnology, Ministry of Science and Technology, Government of India .
The exceptional advisory panel consisted of senior leadership of Tata Memorial Hospital, National Cancer Institute, AIIMS, King’s college London, University of Cambridge, and University of Oxford. The webpage (link below) has further information on the initiative.
> Bringing new / latest Cancer medicines to India
Though to bring latest medicines in India is a uphill task however to save Kusum, when all available medicines in India was exhausted and she was losing her life, Vivek worked hard with difference stakeholders for many months and able to bring two latest medicines i.e. “Ceritinib” and “Alectinib” in India. Hence Kusum became first patient of India, to get these medicines. Not only this Kusum participated in 6 clinical trials/ research medicines to ensure that it helps researchers and patients for a better future.
We are so proud to announce that we are able to bring all ALK Lung Cancer medicines as available in wold to India :-)…..Millions of ALK Lung Cancer patients now have access to these latest molecular therapies with multiple options within India and at much affordable cost.
> Co-founded “ALK Positive India” – India’s first oncogene focused patient support group for Lung Cancer
Kusum and Vivek co-founded ALK Positive India, India’s first patient support group dedicated to Lung Cancer and first Oncogene focused support group in India.
Since Kusum’s diagnosis, Vivek was searching for information and support specifically related to ALK Lung Cancer. One day they found a group of ALK positive patients in the US. The group upholds these by providing Worldwide Information about ALK lung cancer to each other. However, in India, Vivek and Kusum realized that there are so many critical local/ country level needs which needs to be addressed locally for ex. 1) Timely and Affordable Access to Latest Treatments 2) Better Access to Clinical Research & Research Medicines 3) Better and affordable mutation/ sub-mutation testing facility, 4) Raising Awareness about Lung Cancer & ALK +ve, 5) To identify each and every patient of ALK Lung Cancer in India and connect them to ALK support group, so that no one fight alone etc…Therefore, they co-founded this support group for ALK patients.
> Partnership with WHO and world’s leading experts on Cancer Research in Lower Middle Income Countries (LMICs)
Vivek contributed along with world leading experts on extremely important 𝐩𝐚𝐩𝐞𝐫 on 𝐂𝐚𝐧𝐜𝐞𝐫 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 in 𝐋𝐌𝐈𝐂𝐬 which got published in one the world’s top journal “𝐍𝐚𝐭𝐮𝐫𝐞 𝐌𝐞𝐝𝐢𝐜𝐢𝐧𝐞 (impact factor: 53.44)”. He has co-authored this paper along with the Chief Scientist of WHO and Scientists and leading experts from Tata Memorial Centre, Homi Bhabha National Institute, India, National Cancer Institute (NCI), USA, University of Oxford England, University of Harvard USA, King’s College London, Queen’s University, Canada, 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. Vivek, 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.
> Kusum and Vivek story as Cover story by “The Week” – largest circulated English news magazine in India
India’s largest circulated English magazine “The Week” did a Cover story “Trial, and error” while referring Kusum’s story & fight as published on 22 Jan 2017
> Kusum and Vivek’s story is now part of a ‘book’
Kusum and our story of fighting with Cancer, shaking India healthcare system, becoming longest survivor in India at Stage 4 for her type of cancer, mental health & saving thousands of patients life is now part of an inspiring book “God Is Not Fair?“.
The book is written by social entrepreneur Vivek Kumar. This book is compilation of one of most inspiring 6 life transforming real life stories from India including of Kargil war veteran & India’s first blade runner Major D P Singh , Gauri Sawant – Indian Transgender Activist , survivor & fire safety activist Maneesha Ramakrishnan, Cancer Awakens #PrafullaAgnihotri and author Vivek Sharma, who once himself attempted suicide after painfully loosing his young son but now tirelessly working for prevention of suicide amongst youth.
The book is available on all major leading book stores in India and also on Amazon India.
> Speaker at “India Pharma 2020“ summit by FICCI and Government of India
Vivek was invited by FICCI (Federation of Indian Chambers of Commerce & Industry) and Government of India, to become panelist and speaker at “India Pharma 2020“ summit in Gandhinagar, Gujarat for an extremely important topic for cancer patients i.e. “Ecosystem for R&D, Innovation & Start-Up in India”
Vivek ensured to share #Patients Voice to make better eco-system & access to #Research in India and to make patients as #partner with Govt, Industry, Academics & Clinicians in the system.
> Zee News – Leading Hindi national TV NEWS channel
Kusum’s short interview to support clinical trials in India as telecasted by India’s one of the national Hindi news channel
> The Hindu – Leading daily English Newspaper
A part of Kusum’s story when 8 months after paralysis attack, Kusum ran 3 km in an running event to raise cancer awareness and motivate other patients, was published by India’s most selling daily English Newspaper ‘The Hindu’ under story title “Staying positive and hopeful” on NOVEMBER 13, 2017. Link below:
> At FDA Bhawan with DCGI, Joint Secretary Ministry of Health and other key stakeholders
Vivek and Kusum got the opportunity to be part of and represent patients at a very important meeting held at FDA office. The meeting was attended by Joint Secretary, Ministry of Health, Govt of India; DCGI, JDCI, DDCIs and ADCs from CDSCO in full attendance; Doctors from AIIMS, Medanta, Sir Gangaram, RGCI and Industry representation from many major Pharma companies.
> The Quint
Internationally renowned news agency ‘The Quint‘ (winner of the three Ramnath Goenka Excellence in Journalism Awards and two Red Ink Awards) has covered Kusum and Vivek story & their work for Lung Cancer Awareness Month.
> Big FM 92.7 Radio
Kusum’s quick interview to support clinical trials in India was broadcast by Big FM Radio in May 2016
> Developed e-learning course on “Cancer Fundamentals and Awareness” for Ministry of Health, Government of India
To train a million of ground workforce including field health functionaries, social workers, hospital volunteers and students, who work in upto last remote areas of India, Vivek worked with ‘Ministry of Education (Government of India)’ and ‘Indian Cancer Society, Delhi’, to develop an e-learning course on “Cancer Fundamentals and Awareness”. He has covered two modules of this course i.e. ‘Clinical Trials’ from patients perspective and ‘Best practice of Cancer Caregiver’ (kusum’s case study) that is now being taught through this e-course across India.
>Healthpost Medical Journal
Our story and struggle as published in a medical journal “Healthpost”. Link below:
> NDTV – leading English news channel
In a campaign to bring a latest medicine for Kusum and to save her, Vivek participated in discussion on “We the People” program with renowned journalist Barkha Dutt & many key stakeholders from Doctor, Industry and Government community and presented Kusum story. Link below:
> At ‘International Congress on Oncology Research and Development 2019’
Vivek as speaker at ‘International Congress on Oncology Research and Development’, ICORD 2019 and able to strongly raise why timely access to clinical trials and cancer research in India is an urgent unmet medical need.
> Keynote Speaker at “National Lung Cancer Conference (NALCCON)”, India
A historic day for Patients Advocacy & Patients Empowerment in India, as first time in any medical conference in India:
– in 2018, Patient Advocacy became part of main scientific agenda during National Lung Cancer Conference 2018 in AIIMS Patna, which Vivek got honored to speak as patient advocate.
– in 2020, Vivek was invited as ‘Keynote speaker’ for 2020 National Lung Cancer Conference in Delhi. This was the first time ever any patient advocate was made Keynote speaker at national lung cancer conference.
It was great Engaging & Encouraging discussion with leading Medical Oncologists, Onco Surgeons, Radiation Oncologists, Pathologists, medical students, policy makers, media, Bollywood celebrities, social workers and industry in the national conference.
One of the world’s leading news agency ‘Bloomberg’ has released a story on India 🇮🇳️, its air pollution and having world’s most toxic air. For this story, Bloomberg has covered our story / Kusum Malik Tomar Lung Cancer case too.
Link of story (5 min read)
Link of story video (1 min watch)
> Kusum’s key note speech on International Clinical Trials Day
Kusum and Vivek was invited as guest and speaker to share their story and experience & views on clinical trials in an event on Research Touching Lives at India’s one of the most renowned hospital “Medanta – The Medicity’ in May 2017
> Health Magazine – Techagappe
How Kusum & Vivek won with all odds…The story was published by a Health magazine “Techagappe”
> Speaker at Josh Talks
Vivek and Kusum got the opportunity to become speaker at ‘Josh Talks’ to share our story to fight with cancer and healthcare system and our work of advocay. Link below.
It was so great to speak on platform which showcases people from diverse backgrounds covering entrepreneurship, sports, authors, musicians, actors, social activism & more.
Within a year, our story & videos have millions of views at different platoforms and inspiring almost every cancer patient in India to ‘Rise to Survice Cancer’. Though Kusum and Vivek both spoke in Hindi to ensure to reach to larger audience (including rural areas) however for non-Hindi speaking folks, it has subtitles in English, so hope they would also be able to follow it.
> Interactions and raising awareness with Industry and Researchers’ community
> Al Jazeera’s story on ‘Delhi’s Deadly Air Pollution’.
Vivek and Suryanh Tomar (Kusum and Vivek’s son) have supported and particpiate very important short film by globally renowned news agency ‘Al Jazeera’ on ‘Deadly Air Pollution’. This story is to understand on how this invisible killer ‘Air pollution’ killing us, over loved ones, kids and generations to come through lung cancer, respiratory diseases.
> Speaker at Tata Memorial Hospital esteemed international conference
Vivek was invited as 𝐬𝐩𝐞𝐚𝐤𝐞𝐫 at one of the most esteemed international conference “Evidence Based Medicine 2022” in field of Oncology at Tata Memorial Centre, Mumbai, and represent Lung Cancer Patients Community while speaking on such an important topic “Partnering for betterment – Patient Advocacy in Lung Cancer”.
> Advocacy for Research and Clinical Trials
Vivek is working tirelessly to raise awaress of Research and Clinical Trials in India while working with multiple key stakeholders and speaking on impactful platforms.