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 have seen Cancer patients understand how painful 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 did not allow it to break her and never lost hope.
Kusum and Vivek Tomar (Kusum’s husband) has shown tremendous courage to not only fight with this dreadful disease but also to fight with issues in healthcare system of India while supporting fellow Cancer patients.
Kusum, a never-smoker, at age of 29, a mother of 3 yrs 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, Ovaris, Uterus, Adnexa, Stomach. Kusum had 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 & was longest survivor at Stage 4 for ALK Lung Cancer mutation in India.
However in those 7 years, she has almost lost her life atleast 4-5 times, as all available medicines in India were got exhausted & she did not have access to latest medicines & treatment for her type of cancer, which was avilable in many other countries but India. It was so frustrating & helpless feeling to see your loved one in severe pain and struggling for survival, as you do not have access to a medicine which could saved her but available in many other countries. To get access to those latest medicines in India was a uphill and painful task.
Informed patient is key to survival in Cancer and patient support group/ NGO play key role here. However even at patient level, there was not a dedicated lung cancer patient support group in India but was many available for breast cancer, blood cancer etc.
This scenario and cancer patients struggle to survive, made Kusum and Vivek an active, passionate advocate for ‘Lung Cancer’, ‘Clinical Trails’, ‘Cancer Research’ & ‘Timely Access to Latest Treatment’ in India.
After 7 long years of fight with stage IV cancer, unfortunately Kusum passed away on 5th Feb 2019 and left this world phyically. 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, will contiue with work of advocacy.. “Rise To Survive Cancer” now become a mission and a ‘Patient Advocacy Group’ with many passionate patient advocates working selflesly for advocacy of ‘Lung Cancer’, ‘Clinical Trails’, ‘Cancer Research’ & ‘Timely Access to Latest Treatment’ .
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. #LosingIsNotAnOption
Below is highlight of some of the work we have are doing with some accomplishments:
> Recipient of “International Patient Advocacy Award” at ‘World Lung Cancer Conference’ in Toronto, Canada
For the work of Lung cancer patients & community in India and globally, Vivek was awared with ‘International Patient Advocacy Award’ at ’19th World Conference of Lung Cancer’ in Toronto, Canada.
It was was an honor to represent India & its lung cancer patients at gathering of 7500 members of 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 comprised with senior leadership of Tata Memorial Hospital, National Cancer Insitiute, AIIMS, King’s college London, University of Cambridge, and University of Oxford.
The webpage (link below) has further information on the initiative, including the scientific remit and eligibility guidelines, our Advisory Panel and our research challenges
> 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 clinical trials, research medicines for 5 different treatment to ensure that it helps researchers and patients for better future.
> Co-founder ALK Positive India – India first support group dedicated for Lung Cancer patients
Kusum and Vivek co-founded ALK Positive India, India first patient support group dedicated to Lung Canacer and first Oncogene foucused support group in India.
Since Kusum’s diagnosis, Vivek was searching for information and support speacifically related to ALK Lung Cancer. One day they found a group of ALK positive patients in US. The group uphold these by providing Worldwide Information about ALK lung cancer to each other. The group members (ALK+ve patients and caregivers) support one another around the globe (currently members reached to from 50 countries).
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 for ALK+ve NSCLC patients in India, 2) Better Access to Clinical Research & Research Medicines for ALK +ve Cancer patients in India, 3) Better and affordable mutation/ sub-mutation testing facility, 4) Raising Awareness about Lung Cancer & ALK +ve, 5) o 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.
With exceptional support and contribution of like-minded patient advocates this group is actively working on these needs in India while meeting with patients, doctors, industry, policy makers, hospitals and media. A first group of its kind to identify, provide support and advocacy for ALK Positive Lung Cancer in India.
Deilats of ALK Lung Cancer patients and caregiver support group:
- Global group website: https://www.alkpositive.org/
- Global group facebook page for ALK patients and caregivers: https://www.facebook.com/groups/ALKPositive/
- India ALK patients whatsapp group: +91 8447013440 (only whatsapp active, no incoming or outgoing calls)
- India ALK group email id: email@example.com
> 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
> 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
We were finally able to reach to the key stakeholders and policy makers. We got the opportunity to be part of a very important meeting held at FDA bhawan. 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.
We as patient representative tried our best to raise the urgent need to address unmet medical need, how patients are suffering and how in disease like cancer unavailability of latest medicine become life threatening.
The meeting went unexpectedly well. Govt and its officials have committed their support and ensured to work on it…..let’s see…..and let’s continue this fight for all!!
> Big FM 92.7 Radio
Kusum’s quick interview to support clinical trials in India was broadcast by Big FM Radio in May 2016
> Panelist at “CII” seminar on “WomenHealth”
Vivek was honored to became panelist at The Confederation of Indian Industry (#CII) seminar on “#WomenHealth” and to speak on this issue, which is very close to my heart. Great to see the presence of senior officials of Ministry of Health, Niti Aayog including Minister of State for Health for Govt of India Ms Anupriya Patel. Ministry of Health, National Institute of Cancer Prevention & Research and Novartis also issued landscape for Breast Cancer.
When women health came all focus goes to Breast Cancer but people don’t realize that more women (especially non-smokers)are getting #LungCancer & majority being killed by it….For me this seminar was very successful because I was also able to raise & convey this point including….where my session topic was #WomenHealth & #BehaviorChange and my messages were:
1) Behavior change NOT required by Women but required by our Society, System, Policies & us/Men
2) Women are equally at risk for LungCancer as Breast Cancer, as most of the new cases of lung cancer are Non-Smokers & Female
3) Womens are #backbone of any society and a society can not be healthy until its women will be!!
>Healthpost – a 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:
> Panelist at Lung Cancer conference as “Lung Cancer Consortium Asia” Mumbai
Vivek as panelist in Lung cancer conference in December 2017.
> Speaker at NALCCON Lung Cancer Conference 2018
A historic day for Patients Advocacy & Patients Empowerment in 🇮🇳 -as first time is any medical conference in India, Patient Advocacy became part of main scientific agenda #NALCCON2018 lung cancer conference in AIIMS Patna, which Vivek got honored to speak as patient advocate.
And also as moderator, it was great Engaging & Encouraging discussion with leading Medical Oncologists, Onco Surgeons, Radition Oncologists, Pathologists & medical students in session on “Patient Advocacy in Lung Cancer in India – need of hour’ at #NALCCON2018 in AIIMS Patna
> Our story at world’s leading news agency ‘Bloomberg’ for air pollution advocacy
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.
This story is trending and already picked up by so many national news agencies including Hindustan Times, NDTV etc and running all over media.
We hope Kusum’s cancer case and Bloomberg story will lead to significant discussions in global and Indian political and environmental circle and may change some situation….so that our and generations to come could be saved.
Please must read and watch this story and video at below link and share this story to change thinking and efforts of society and government to save our kids and generations.
Link of story (5 min read)
Link of story video (1 min watch)
> Kusum’s key note speaker speech at Medanta – The Medicity, India’s leading hospital
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
We 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 I 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.
> On famous facebook page “Humans of Delhi”
Our story was published on renowned FB page “Humans of Delhi” which reached to thousands of people & helped in advocacy a lot. Link below
> Guest lecture & interaction with industry at “Quintiles, Mumbai office” and “Novartis, Hyderabad office”
> Panel discussion at S. P. Jain Institute of Management & Research, Mumbai (one of the Top Business school of India)
Vivek as panelist on Cancer discussion along with senior representative from Doctors, Industry, NGOs
> 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.
Our Twitter Handle – @R2SurviveCancer
Our email id: firstname.lastname@example.org
Please note that we are not an NGO but just individuals who want to serve the humankind and country in any possible way, in all avaiable capacity. After Kusum, I (Vivek) is alone while having resonisbility for 10 year old son too therefore kindly expect delay in my response.