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 did not allow it to break her and never lost hope. Kusum 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 non-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 IV Lung cancer metastatic to Brain and other parts of body. Kusum has 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 already celebrated her 6 year survival with Stage IV cancer & is one of the longest surviving cancer patient at Stage IV for Lung Cancer with ALK mutation in India. However in last 6 years, she has almost lost her life atleast 3-4 times, as all available medicines in India was got exhausted & she did not have access to latest medicines & treatment for her type of cancer, which was available in many other countries but India. It was so frustrating & helpless feeling to see your loved one in severe pain and struggling to live as you don not have access to a medicine which could saved her but easily available in many other countries.
To get access to those latest medicines in India was a uphill and painful task. For many years now, Vivek and Kusum are working very hard with stakeholders in Indian healthcare system, to get latest medicines for cancer patients via clinical trial or other routes in India.
When in India, there are so many NGOs and patient support groups for Cancer including many dedicated for Breast Cancer, Blood Cancer however it is so unfortunate that there was not a single Lung Cancer advocacy & patient support group in India. And thatswhy Lung Cancer patients situation is so poor in India.
In India, Lung Cancer means no discussion, no support, no policy (except for tobacco use cessation), no advocacy, very limited medicines as compared to other countries and a life expectancy of 6 months to 1 year.
Due to all these issues, many cancer patients in India are dying. This scenario and cancer patients struggle to survive, made Kusum and Vivek an active, passionate advocate for ‘Lung Cancer’ ‘Timely Access to Latest & Right Treatment’ and ‘Clinical Research’ in India.
As we have experienced and as we strongly believe that Cancer is Not an End, if Kusum can continue to Survive and Live Quality Life at Stage IV Cancer (in Lungs to Brain, Bones & other parts of body) with Hope, Courage, Clinical Research and Latest Treatment….SO CAN EVERYONE.
Just one has to Rise and become advocate for themselves and other patients…One has to Rise to Survive Cancer.
From there, despite Kusum’s own struggle to survive stage IV cancer, Kusum and Vivek are working as patients advocate while working with different stakeholders including many NGOs, Doctors, Industry, media and policy makers. Kusum and Vivek has also co-founded “ALK Positive India” a patient support group for India ALK Lung Cancer patients group which is working as a national chapter for global ALK Positivie Patient support group which has ALK Lung Cancer patients of around 40 countries.
Below are some of the highlights of work we have done and media coverage on advocacy:
> Speaker at Josh Talks
We got the opportunity to become speaker at Josh Talks to share our story & work. 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.
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.
> 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.
This has not only save Kusum’s life & she was able to celebrate 5th Cancerversary but also able to save hundreds of other Cancer patients who also got access of these medicines because of Vivek & Kusum efforts and support of those wonderful folks from Doctor, Industry, Media and Government community.
> ALK Positive India – India first patient support group dedicated to Lung Cancer and first mutation level support group in any type of Cancer in India
Kusum and Vivek became a member of a global group of ALK positive patients which was first of its kind in word, where three tenets group members live by are Information, Support, and Empathy, no matter where one may be. 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 are of 41 countries).
However, in India, we realize that in addition to above there are some critical local/ country level needs which needs to be addressed locally. For ex.:
- ‘Timely and Affordable Access to Latest Treatments for ALK+ve NSCLC patients in India” – This is so critical as life are at stake here and without medicine, how we could be able to save Cancer patients in India. As of today, in many countries, for ALK+ve patients, 4 different generation molecular therapies (TKI) are approved and 24 new medicines clinical trials are going on however in India, we have only approval of two TKIs and new medicine clinical trial ongoing for ALK +ve patients;
- “Better Access to Clinical Research & Research Medicines for Cancer patients including ALK +ve in India’;
- “Better and affordable mutation/ sub-mutation testing facility”;
- “Collaboration with Doctors and Hospitals for better support and treatment”,
- “Raising Awareness about Lung Cancer & ALK +ve”
- “To identify more patients of this rare type of Cancer in India and connect them to global group”
- To have a updated, validated list ready for NSCLC ALK +ve patients in India, that would not help to support each other but also help Government and Pharmaceutical companies to understand NSCLC ALK+ve disease burden and need of all those latest treatment available in other countries (as delay only cost someone life here in India).
Therefore, Kusum and Vivek have actively started to work 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.
This concept (mutation level support group) is not only new to patients but for Doctors, Industry too in India. However as we are sharing, lot of hard work and they are observing the significant benefits for all stakeholders, more and more support are pouring.
It is a long journey and we hope not to only to change future (for better) for ALK Positive Lung Cancer but also Lung Cancer in general and patient support for all type of Cancer.
Copy of first flyer for ALK Positive India is presented below (Note: All photos in flyer are of ALK Positive Lung Cancer patients & their caregivers from India and abroad. One can contact us for ALK Positive Lung Cancer support at details provided in this flyer.
> 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
> 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!!
> Health Magazine – Techagappe
How Kusum & Vivek won with all odds…The story was published by a Health magazine “Techagappe”
> The Hindu – Leading daily English Newspaper
A part of Kusum’s story was published by India’s most selling daily English Newspaper named ‘The Hindu’ under story title “Staying positive and hopeful” on NOVEMBER 13, 2017. Link below:
> Big FM 92.7 Radio
Kusum’s quick interview to support clinical trials in India was broadcast by Big FM Radio in May 2016
> Healthpost – a medical journal
Our story and struggle as published in a medical journal “Healthpost”. Link below:
> 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
> 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:
> On famous blog “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
> Panelist at Lung Cancer conference as “Lung Cancer Consortium Asia” Mumbai
Vivek as panelist in Lung cancer conference in December 2017.
> Recipient of IASLC’s “International Patient Advocacy Award” at ‘World Lung Cancer Conference” in Toronto, Canada
Vivek was honored to represent 🇮🇳 & it’s lung cancer patients and received Patient Advocacy Award from IASLC president and CEO.
– Able to be part of 7500 gathering of Lung Cancer community with Clinicians, Researchers & other stakeholders
– Met with world’s leading Oncologists…. It seems all great Doctors are great souls too…so supportive & caring with ‘Patients First’ 🙏
> 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)
> 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!!
Our Twitter Handle – @R2SurviveCancer