Kusum’s dream & our initiative, Patient Advocacy group “Rise To Survive Cancer” which we both have co-founded with a vision to improve India healthcare system and make patients’ voice integral part of it, is now member of esteemed “National Cancer Grid“.
The National Cancer Grid is a network of leading cancer centers, research institutes, patient groups and charitable institutions across India and doing exceptional job of establishing uniform standards of patient care for prevention, diagnosis, and treatment of cancer and facilitating cancer research in India.
Looking forward to work together with India’s leading Drs, hospitals, researchers, policy makers, patients groups to eliminate disparities in cancer care from India
If you want to make a change in the system, then the best way is not only to focus on policy makers but also to bring onboard and educate the huge workforce & stakeholders who works on the ground!!
I am humbled to be able to contribute in such initiative as my volunteer work while working with ‘Ministry of Education (Government of India)’ and ‘Indian Cancer Society, Delhi’, to develop an e-learning course on “Cancer Fundamentals and Awareness”.
The target is 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.
I have covered two modules of this course i.e. ‘Clinical Trials’ from patients perspective and ‘Best practice of Cancer Caregiver’ (my wife kusum’s case study) that is now being taught through this e-course across India.
I am honored to contribute along with top researchers & oncologist of country & WHO…and for an initiative that has potential to make a change in the system by educating those who would be touching lives on the ground, and indeed the love & satisfaction I am getting through such work.
Lung Cancer – a cancer with highest mortality rate in India and across the world. Lung cancer – a cancer with stigma of smoking disease however in India, more than 50% newly diagnosed cases are non-smokers, young and women. In non-smoking women, new cases are much more higher.
It was great opportunity to speak and share patients‘ perspective, experience and data to bust out many of these myths associated with lung cancer in India & globally, at esteemed IHW council.
IHW council a reputed platform where historically speakers include India’s top Oncologists, Researchers, Policy Makers (President of India, Central govt ministers etc) and Celebrities…..Therefore it was great that I was able to speak at this platform: – to challenge stigma associated with Lung Cancer and call out for – national lung cancer screening program, – awareness program to raise awareness about misconception associated with lung cancer – & access to latest treatment for Lung Cancer under Ayushman Bharat scheme.
Today is International Women’s Day…since morning I kept thinking about the significance of this day..It is not Diwali or Eid or Christmas, which comes and go….It is for the most loving, strong and amazing creature of God ‘women’…Ohh sorry, I should say, as I believe, the best creature of God…..But is our job done after saying Happy Women’s Day….if we are not going to stop patriarchy? if we are not going to change our thought, behavior, attitude towards women? if thery are not having rights equally to men or stop being discriminated at work, at home? if they keep tortured with domestic violence? if they are not safe and being assaulted, raped all over the world?
On this year women’s day, I call out to bring change in the mentality of us ‘Men’…and what could be better to share than this poetry of actor, poet, social worker and dear friend and today’s birthday girl ‘Taranjit Kaur’….Happy Birthday Taran…and thank you for asking and reminding us men “क्या मुमकिन है?”
#happyinternationalwomensday to my brave amazing Kusum, my mother, my siblings, my relatives, my friend, my colleagues and every single women out there in the world…#HugeRespect and #ThankYou 🙏
It was my honor to represent India and Patients Voice on ‘Patients’ Importance, Role and Impact on Policy Making’ at “Asia Pacific Patients Innovation Summit 2021”, in presence of policy makers, industry and patients organisations.
Great engaging discussion with fellow eminent panelist including Dr Urvashi Prasad of Niti Aayog (think-tank of Government of India), Dhavani Mehta (co-founder of Vidhi Centre of Legal Policy) and Ben Kamarck (Head APAC Novartis Public Affairs), where session moderated by Anubha Taneja-Mukherjee (Member Secretary, Thalassemia Patient Advocacy Group)
Amazing to see active participation from so many countries, all key stakeholder presence on table, very well planned and organized event.
Key take away: As it was emphasized “Reflecting the lived experience of patients & their caregivers/loved ones in policy making is critical for it is only they who truly know what it is like to face the monumental challenges posed by serious health conditions”. It is incorrect to assume that policy makers know everything about everything, you know your business like nobody else…”Partnering with patients can significantly improve the quality of healthcare system and lead to a win-win situation for any country.”
Hope it will lead the change for active participation of patient community in policy-making
In continuation to our efforts to push to improve India healthcare system, I am pleased to share that Kusum & our work & quote along with medical research fraternity leaders like Dr C S Pramesh (Director, Tata Memorial Hospital), Dr Anant Bhan (globally renowned Bioethics and Public Health Researcher), Dr Aju Mathew (from the University of Kentucky Markey Cancer Center in the US, and director of Kerala Cancer Care in Kochi, Kerala) published in science journalist Shreya Das Gupta‘s feature article in one of the world’s oldest and top general medical journal “The BMJ (originally called the British Medical Journal)”.
“India made the registration of clinical trials mandatory in 2009. But published results are only available for around a quarter of those registered between then and 2015, pointing to a lack of accountability and transparency”…It is great to see how this article is helping in raising much needed awareness of this issue, since its publication.
To change the system, one has to go to the system in same language that system understand with facts and figures….In past, whenever I tried to do conversation with policy makers on patients community issues, Research, Clinical Trials situations in India, they were asking for numbers and evidences (despite the issues well known)….Therefore as patient advocate, I took initiative to work the researchers, medical community and policy makers, to get connected those issues with numbers & evidences through publishing and presenting the data……And I hope it will ring the bell (Finger crossed)
This is just the start….this is for my Kusum, for research and for all Cancer Patients of India ❤️
Thanks to the internationally renowned news agency ‘The Quint‘ (winner of the three Ramnath Goenka Excellence in Journalism Awards and two Red Ink Awards) for covering our story & work for Lung Cancer Awareness Month (Yes, November is Lung Cancer Awareness Month)!!
And….what could be better tribute to my Kusum aka Vibha on our marriage anniversary today while releasing of this story/ video for raising Lung Cancer Awareness in India and globally.
Happy Marriage Anniversary Love …..This is for you and all Cancer Patients & families out there!!
Together We Can Change the Face of Lung Cancer….Losing is Not an Option!!
My heart stopped beating with yours But I am taking each breath by your name….Time will come when we meet and rejoice again….Till then remember that I hold you close within my heart and there you will remain….Untill we meet again!!
Happy Karva Chauth my love ❤️
Today, India is celebrating a unique, beautiful tradition or say festival called “Karva Chauth”. And I would like to share today about how my love, my life and my wife Kusum aka Vibha aka Pari and I have seen this festival, our relationship with “Karva Chauth”.
For my friends and blog followers abroad, “Karva Chauth” is a festival celebrated especially in Northern India, where married women ‘fast’ (without even drinking water) from sunrise to moonrise for the safety and longevity of their husbands. Today, I am not going into discussion why women, why not men, or scientific logic of this (which seems not though)……but yes, it is about KarvaChauth, Kusum and I.
On Karva Chauth, there was always that amazing feeling of love in air. This actually used to start a day advance of KarvaChauth when Kusum (as per tradition) used to put Mehndi (Heena) on her hands. And then we used…
Yesterday, I got a big opportunity to raise patients voice as I was invited as ‘Key Note speaker‘ at “National Lung Cancer Conference of India (#nalccon2020)“….It was big because this was first time in history of , a Patient Advocate was invited as Key Note speaker in such level of international medical conference organised from India.
Among many, few Key Highlights worth mentioning:
– 1000s of oncologists & surgeons & around best in field 150 national & international faculty attended this hugely successful national lung cancer conference.
– Good to get support from Bollywood star Akshay Kumar and others like Suhel Seth, Prashant Bhushan, #NDTV Anjilee Isthewal in raising lung cancer awareness
– I believe I was able to raise and convey Patients Voice strongly enough…as I understand from all the feedback & messages I am getting including this message on my presentation from Conference committee & chairman “It was extremely thought provoking and challenged each one of us, on, where are responsibility ends. We are truly excited and this day will mark a New Beginning”
This is for New Beginning for care of Lung Cancer in India….This is for my Kusum Malik Tomar