Great to collaborate with Rare Cancers Australia Ltd (RCA) a renowned charity group and join them as guest faculty along with other amazing faculty & remarkable leaders & organisations on Patient Advoacy as part of ‘Pinnacle workshop’ for global patient support organisations with case study on ‘The opportunities and challenges of navigating the health system in India”.
Despite the challenges, the faculty/ three fellow patient organisations shared their stories of how they were able to work with the government and push for better outcomes for our patients.
To hear the inspirational stories of Hemophilia Federation (India) and Organization for Rare Diseases India, along with ours (Vivek Tomar (Rise to Survive Cancer)) visit: https://lnkd.in/gNYfzVqP
“October” is “Breast Cancer Awareness Month” but actual need is of “Breast Cancer Action Month”
It was wonderful to be part of IHW Council ongoing initiative on Breast Cancer Action Month and amazing panel with India’s leading Oncologists, Researchers, Government Representative, Policy Makers, Social Workers and Industry stakeholders on one of the most important topic i.e. “Importance of Research and Clinical Trials in Breast Cancer Care“.
Research & Clinical Trials role in Breast Cancer (as like in all other Cancers in India) is an unmet medical lead hence it was critical to share Patients‘ perspective & experience on such an important topic in front of key stakeholders.
In breast cancer, India has less than 5% of global clinical trials. If we don’t have research, if we don’t have clinical trials, if we don’t have access to latest treatment then how can we beat India’s no. 1 Cancer? How can we protect India’s Women health??
I am honoured & humbled to become India’s 1st Patient Advocate ever to speak at “World Conference on Lung Cancer 2021 (#WCLC21)”, which is the global biggest gathering event (more than 7,000 delegates including oncologists and researchers come from more than 100 countries) with proud responsibility to represent lakhs of Lung Cancer patients, caregivers & community voice, situation and needs in front of global community. I will not stop until India’s patient situation and healthcare system will not improve….because as Kusum used to say “Losing is Not an Option”.
It was great pleasure and learning to be part of panel & event along with world’s leading and inspiring patient advocates and friends including Ivy, Jill, Gina, Christina, Sigourney, Lillian.
Heartfelt thanks to: – IASLC for inviting me and also providing the opportunity to comment on plenary session on Global #Disparities in #LungCancer, and ensure #PatientVoice is included. Among all, you are the best who do truly care of patients and give them voice. – Dr Kumar Prabhash, Sanjeev Sharma and #LungConnect for support and doing survey among Lung Cancer patients at Tata Memorial Hospital, Mumbai for the content of my slide – my ALK Positive India group for your inputs and completing survey for my slide content. – Dr Upal of LUNGevity for your encouragement, love and support – Mr Prabhat for all your support and your selfless service to patients’ community – global lung cancer support i.e. ALK Positive global, EGFR Resisters, The ROS1ders, KRAS kickers, LUNGevity Foundation for your support to Indian patients. – all the amazing #Oncologists and #Industry folks from India and globally for your support to me and lung cancer patients in India. – Suryansh, my son for allowing me time to continue to serve others and his participation in this mission – And most important…my love, my life Kusum Malik Tomar – when I was presenting for WCLC to represent India & giving voice to India’s Lung cancer patients, it was early morning in India, and the view from my window was saying that it is my Kusum smiling from heaven at that point of time Sharing few photos from the event and also view of the morning from the morning, during the event
Yesterday, an oncologist from a leading hospital in India contacted me for free TKI / medicine support for his IMT ALK+ve cancer patient. When I enquired, I found that patient is a 2.5 year old kid. The cost of TKI/ medicine is too high and kid’s parents can not afford. They have aleady tried and no mechanism or support either from that company or from governent.
It was heart wrenching to see such a small kid fighting with Cancer and than helplessness & pain of his parents for not able to purchase the medicine.
But I am so happy and proud that on my request, so many helping hands came from ALK+ve India patients support group, which Kusum and I cofounded with same reason to help others. Only within one hr, lakhs of INR/ Rs worth medicine arranged at completely free of cost for the family, that would be enough for months for that small kid.
This brave kid just took 1st dose..So proud of my ALK+ve patient group family for helping and supporting while fighting their own fight with Cancer..All love and wishes!!
For years, we (including by those who have medicine leftover after progession of Cancer or many like me, whose loved one passed away) have donated millions of worth of costly cancer medicines and we will continue to do the same, as there are many who can’t afford to even start the treatment.
I am going to have a good sleep tonight and I am sure Kusum will be coming to meet me in my dreams today 🙂
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 ❤️