Rise To Survive Cancer

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

#PatientsVoice #PatientAdvocacy #NothingAboutUsWithoutUs

On mission ‘Serving & Saving lives’,
Vivek

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 ❤️

Link of The BMJ article as below:

https://www.bmj.com/content/371/bmj.m4835

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!!

#lcsm #nonsmoker #ClinicalTrials #love #hope #courage #kusumVsCancer

Link of our/Quint 6 min story/video is as below or click on photo tab above to watch the story/ video
https://youtu.be/lLjMF5RHxf8

Yours,
Vivek

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

And:

– 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

I am looking forward to being part of the wonderful panel for Indian Cancer Society annual seminar on Head, Neck and Lung Cancer.

It would be great to be along with remarkable fellow speakers Dr Ravi Mehro (CEO, India Cancer Research Consortium), Dr Tapaswini, Kamal ji & renowned singer-songwriter and composer Sonam Kalra.

This is about Patients Voice, about Hope and Lung Cancer advocacy

#RiseToSurviveCancer
#KusumVsCancer
#PatientAdvocacy
#LCSM

Losing is Not an Option,
Vivek

The word ‘Cancer‘ strikes fear in most. Many even believe that it’s the end of the road.

Recently I was invited to became the panellist for an insightful panel discussion on topic “Health and Emotional Well-Being – Understanding leads to Health” organised by ‘Joy for Life’ an organisation with platform for enrichment and empowerment, in support of V Care Foundation (a voluntary support group dedicated to providing free help, hope, awareness and education to cancer patients) 

The panel discussion, with amazing esteemed panellists consists of fighter, survivor and torch bearer of hope, was a completely different journey. A journey of hope and faith, a journey that focuses upon inner well-being and self-acceptance, a journey of courage and perseverance, a journey on which we pick up the pieces, and put them back in such a way that we recreate a WE that is resolute, self-aware, spiritual, strong, and compassionate to the pains of others.

Remember….Managing mental health needs is a crucial part of the treatment process in Cancer, and may even impact prognosis

Stay safe,
Vivek

#In Love and Memory of Kusum aka Vibha

#Losing Is Not AN Option

#Rise To Survive Cancer

I am pleased to share that I have been appointed in Novartis Global ‘Lung Cancer Advisory Board’ 🙏

I am the first Indian ever to join Novartis global Lung Cancer advocacy advisory board. It is great to have the opportunity to contribute and to represent this part of the world, along with amazing leaders and patient advocates across the world.

I will try my best to represent Lung Cancer patients from India and globally and to find the solutions of unmet medical needs 🤞

This is for you my love Kusum and all lung cancer patients out there 💕 #Hope #PatientAdvocacy #LungCancer #Novartis

Yours,
Vivek

“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 had great fun while celebrating your bday…I am sure you were there, watching and smiling.

Then Suryansh (Avi), Mummy, Papa and I had Hawan (Prayer). Avi sit on the place where you used to sit.

Avi and I now are planning to have some family time celebration….though only issue is…. Avi was saying this morning that we can not plan surprise for you (as he & I both used to do everyyear)…I aksed why and he said Mumma is now everywhere & can see us what we are planning 🤣 HAHAHA….Your Avi is amazing, Vibhu!!

Above message with which I have started this blog was sent by Vinita bhabhi…and that message is gist of everyones feeling 💕……. Getting hundreds of messages and wishes on your birthday, filled with lots of love for you….I will read it to you later 🙂

I am going now…Avi is ready to go to market to buy stuff for bday party….. Happy Birthday Jaan…Love you always ❤️ ❤️ ❤️ ❤️

Vivek

On 20th May 2020, last week, it was “International ClinicalTrials Day”. As our Kusum aka Vibha was passionate Patient Advocate for Clinical Trials and Research, every year, this day, Kusum and I used to be very busy with awareness programs, interviews, conferences, meetings and so on.

But this year was different, very different as she was not with us physically. Since morning, I was thinking of her and all those action pack days…..However when I open the social media, I was so plesantly surpsied to see hundreds of message (including on twitter, linkedin, whatsapp) from every stream i.e. be it industry, patients, clinicians, remembring Kusum and thanking her on Clinical trials day for her contribution

Thanks so much everyone who post & send those messages and remembered Kusum on this special day