This is for New Beginning for care of Lung Cancer in India

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 💕

Indian Cancer Society – Annual Seminar

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

Panellist at “Mental Health & Cancer” discussion

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

Appointed in Novartis Global Lung Cancer Advisory Board

Novartis

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

Happy Birthday Kusum

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

 

 

International Clinical Trials Day

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 🙏
Thanks Kusum
I also would like to wholeheatedly thanks Clinical Trial Patients, Researchers, Clinicians, Patient Advocates and everyone who got directly or indirectly involved in clinical research and to bring all those latest life saving treatments..like today where whole world is waiting for Covid19 treatment.

I wish for better focus & access of Clinical Trials in India & globally, to ensure latest treatmet timely avaiable for Cancer patients.

Kusum & my dear friend Linnea stories to vouch that #Clinical Trials & #Research Saves Lives!!

Clinical Trials - Ray of Hope

Ecosystem for R&D, Innovation & Start-Up in India

I was invited by FICCI (Federation of Indian Chambers of Commerce & Industry) and Government of India, to become panelist and speaker at “India Pharma 2020 summit in Gandhinagar, Gujarat for an extremely important topic for cancer patients i.e.  “Ecosystem for R&D, Innovation & Start-Up in India

It was an important and unique opportunity as:
– Patients in India has no voice and at such platforms with key stakeholders, patients & their voice are nowhere.
– Esteemed fellow panelist from Government (including India and US (Dr Patrick Kilbride, Sr VP, US chamber of commerce)), senior leaders of Industry (including from Pfizer, Novartis, Cadila etc.) & Academic Researchers (including Director NIPER).

Therefore, I tried my best and ensured to share #Patients Voice to:

> make better eco-system & access to #Research in India.

> make patients as #partner with Govt, Industry, Academics & Clinicians in the system.

Hope they heard patients’ point, loud and clear…and we will see more research in India…Finger crossed!!

 

#Research Save Lives
#KusumVsCancer
#Rise To Survive Cancer
#Losing Is Not An Option

Panel 1Panel 2Panel 3

Reaction of Kusum after taking 1st dose of Research Medicine in Clinical Trial

As you know, my wife & life, Kusum Malik Tomar who was given only 6 months to live, lived 7 years with her stage 4 cancer (was longest survivor of her type of cancer in India) and it was become possible because of research only and those 6 clinical trials/ research medicine.

There is lot of misunderstanding in India about clinical trails. Clinical trials can provide access to new treatmnet and Research medicines, which is life saving in cases like Cancer where time and access to latest treatment is key…….

Therefore, for advocacy and to help patients & family understand about importance of research and clinilca trials, would like to share this link (https://youtu.be/GkhQ4N8WHmA) of 22  seconds video clip of Kusum where she is sharing her experience after taking first dose of research medicine under clinical trial.

# Research Saves Life

# Losing Is Not An Option

# Rise To Survive Cancer

Happy Valentine’s Day 2020

Love is not just about possessions, physical presence or living together; it’s about liberation, creating memories and impacting lives around us. 💕

Today is Valentine’s Day and wishing all the lovely couples out there to create best of memories and cherish love (the most beautiful feeling created by the Almighty) with your loved one 💐🙏 ❤️

On Valentine’s day, social entrepreneur and author of book ‘God Is Not Fair?’ did this podcast (Love, Kal Aaj aur kal) on Kusum and mine love story. Link to listen ths podcast 👇 (Language: Hindi; Duration: 14:35 mins;  also available on Google podcast, Apple podcast, Jio Saavn podcast)

#ValentineDay
#Love
#KusumVsCancer
#GodIsNotFair?

 

Tutorial on how to get Import license for life saving medicines like in cancer, at no cost and on same day

Sad to see gangs cheating patients for thousands of Rupees to obtain Import License of life saving medicines/compassionate program 😞 though India drug regulatory authority CDSCO process is free of cost, online & take mins only.

I have created and published a step-by-step video tutorial on how to get Import License for Life Saving medicines in India, free of cost & possibly on same day. This video tutorial is available on youtube at link👇

https://youtu.be/8qyivWSeMYg

Hope it wll help Cancer & other disease patients like rare disease to save their money & time.

Please do share this tutorial within patients & medical community, to help as much patients as possible🙏

#KusumVsCancer

#LosingIsNotAnOption

#SharingHope

Import license