Happy Birthday Kusum

Legends never die, but they are born!!
Today is the birthday of such a legend, today is the birthday of the girl who has given hope to millions by her courage, positivity, strength and advocacy to help other patients…..
Hey @Kusum – Happy Birthday my love 🎂❤️….Your birthday celebration this year too, like every year, as you have always wanted and celebrated , was with underprivileged special need kids (you know some of these kids still remember you, though they have bit grown up now 😃) and at visually impaired kids school from below poverty line 🙏 …You have fun in heaven, we are celebrating here 🎊🎉, though missing you a lot today…..

Rise To Survive Cancer

Today is the day when a flower bloomed on this earth who in her very short span of time spread fragrance wherever she went and that still persists in the air, in the minds and hearts of those lives she touched….Happy Birthday dear Vibha…May this message reaches you in whatever realm you are currently residing in. We all on this earth miss you very much

Dear Kusum aka our Vibha,

Hey birthday girl….I am sure whereever you are, there will be only love, happiness and today even lot more fun and laughs 🙂 …..Lucky they!!

Though missing badly all those laughs and you….but we are not much behind here on earth….We are celebrating your bday, in same way, as you used to celebrate every year

Day start with, to went to ‘Deepashram’ home for underprevilaged special needs kids…and spent hours there in morning with those kids and…

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Patient First Summit and Awards 2022

This week, one of my patient advocacy highlights was to be part of an esteemed panel on an extremely important topic on “Impact of Patient Advocacy in Modern Healthcare Delivery Mechanisms” at the IHW Council event of ‘Patient First Summit & Awards 2022‘.

It was a great discussion to share with established and budding patient support groups & advocates who have attended this event on – how patient advocacy has potential to move mountains, how it is already changing the face of India healthcare system for better and why we need more patient advocacy in India. And top of that, awarding those amazing patient advocates/ advocacy groups, who are selflessly serving patients in India.

#NotjingAboutUsWithoutUs #PatientAdvocacy #PatientsVoice
Vivek

Priorities for cancer research in low- and middle-income countries: a global perspective

I am honored to contribute along with world leading experts on this extremely important 𝐩𝐚𝐩𝐞𝐫 on 𝐂𝐚𝐧𝐜𝐞𝐫 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 in 𝐋𝐌𝐈𝐂𝐬 which got published in one the world’s top journal “𝐍𝐚𝐭𝐮𝐫𝐞 𝐌𝐞𝐝𝐢𝐜𝐢𝐧𝐞 (impact factor: 53.44)”. I have co-authored this paper along with:
– Tata Memorial Centre, Homi Bhabha National Institute, India,
– The Chief Scientist of WHO
– and Scientists and leading experts from:
> National Cancer Institute (NCI), USA
> University of Oxford, England
> University of Harvard, USA
> King’s College London,
> Queen’s University, Canada
> University of Toronto,
> 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.

I, 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.

#ResearchSavesLives #LMIC #PatientAdvocacy #CancerResearch #PolicyMaking #LosingIsNotAnOption #RiseToSurviveCancer #PatientsVoiceMatters #NothingAboutUsWithoutUs

Speaker at Annual Conference of Indian Society for Clinical Research

It was an honor and great opportunity to join the annual conference of Indian Society for Clinical Research (ISCR) as ‘𝐬𝐩𝐞𝐚𝐤𝐞𝐫’ along with my fellow esteemed panelists including Mr. Anirban Roy Chowdhury (VP, Bharat Serums and Vaccines), Dr. Kamala (President, Health Collaborations LLC) , Ms. Alpana (Founder, CureSMA Foundation of India), Ms. Ranjeet Kaur (President, Breast Cancer Welfare Association), Dr Seema Pai (Director, Pfizer Operations) and Dr Viraj Suvarna (VP, Biocon).

A conference attended by approx 5000 clinical researchers, hence a great opportunity to make them understand about 1) Patients’ perspective on Clinical Research and Clinical Trials; 2) From a side of protocols, subjects, studies to the side of Patients, Caregivers, Loved ones, fighting with life threatening diseases; 3) How patient advocates can help better outcome in clinical research and 4) a inspiring video and message from Kusum on how clinical trials access to research is answer to India’s healthcare problem.

It was heartwarming to hear the stories & work of fellow panelists in this exceptional insightful discussion. Leaders of pharma Industry/ ISCR promised to work on the points raised by us for better access to research & clinical trials for Indian patients and for betterment of patient care & experience during clinical trials. I will keep following up on these raised actions, until they implemented, as my Kusum used to say, Losing is Not An Option

#ResearchSavesLives

#PatientCentricity

#PatientsFirst

Evidence Based Medicine 2022

It was my honor to be 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”.

Discussions on ‘care’ are incomplete without the patient’s voice and I will continue to do my best for better healthcare system, for patients, for us and for generations to come, for Hope to Reality.

Vivek
#PatientsFirst  #PatientsVoiceMatters #RiseToSurviveCancer  #LosingIsNotAnOption

Pinnacle Workshop

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

#RiseToSurviveCancer 
#LosingIsNotAnOption 
#PatientsVoiceMatters 
#PatientsFirst 
#PatientAdvocacy

Breast Cancer Action Month

“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??


#ResearchSavesLives
#PatientNeedsClinicalTrials
#WomenHealth
#LosingIsNotAnOption

First time India Patients’ Voice at World Conference on Lung Cancer 2021 (WCLC21)

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

#PatientVoiceMatters
#HumanityFirst
#LosingIsNotAnOption
#RiseToSurviveCancer
#LCSM

Helping Hands

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 🙂

#LosingIsNotAnOption #HumanityFirst #Cancer #FinancialToxicity

Vivek

National Cancer Grid

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 🇮🇳

#RiseToSurviveCancer
#RightToHealth
#LosingIsNotAnOption
#PatientFirst
#ResearchMatters