Got IASLC Patient Advocacy award 2018 #LungCancer #LCSM

I am so pleased to share that I have been awarded with prestigious international “Patient Advocacy Award for 2018” by esteemed “International Association for the Study of Lung Cancer (IASLC)” 🙂, considering my advocacy work for Lung Cancer and service to thousands of Cancer patients & families in India………The award would be presented at “World Conference of Lung Cancer” (#WCLC2018) in Toronto, Canada later this month/ September 2018. As big part of this award, I would have access to world conference and trip sponsorship 🙂

I am felling humbled and proud at same time, as going to represent our country #India and its Lung Cancer Patients and families at World Conference of Lung Cancer in Canada.

#IASLC #WCLC2018 is such a great opportunity to meet & learn from worlds best Doctors, Researchers and Patient Advocates and I really hoping and wishing that I would be able to do more and better work to save & serve more and more cancer patients to live longer & quality life with their family & friends in #India.

I would indeed need your support to fulfill this uphill task to change Cancer patients situation in India.

And most importantly, I am out of words on how to express my thanks to my love Kusum Malik Tomar and Suryansh for exceptional support & understanding as all time going in this work, is only possible after deduction from their time/ family time #LoveToMoonAndBack

#WCLC2018 #Hope #LCSM 

 

682257166_960

I am trying to shake the system to save my wife

Realized, I have not shared this article on my fight with India Healthcare system, here on blog. This was interviewed and written by one of the most honest & wonderful health journalist Ms. Gunjan for  medical journal “Healthpost”.

Unfortunately the fight with system is still going on, nothing much have changed except I do have now support of more wonderful friends and well wishers…Thanks all

Link of article is as below:

http://www.healthpost.in/medley/i-am-trying-to-shake-the-system-to-save-my-wife–92

Healtg.PNG

Clinical Trials – A Ray of Hope for Cancer Patients

Anyone who understand Cancer, can also understand the fear of two R i.e. Recurrence (Cancer Recurrence, post it went away once) and Resistance (Development of Resistance to current medicines after successfully having those for some time) especially when standard treatment options are so limited in India. Therefore best hope for Long Healthy Survival in Cancer is access to more & more options that could only be possible via Clinical ResearchClinical Trails.

Clinical Trials specifically play key role in life saving for those cases where all available approved treatment got exhausted and Clinical Research is only hope. Patient could get access to a new medicine much before that medicine would come to market via approval, that too free of cost and for us Cancer patients, it matters!!!!

I have experienced uphill task in trying to access a clinical trial for my wife  Kusum, which was the only treatment option available for her, that could saved her life. Thankfully, after months of efforts & struggle and support from some wonderful folks from Doctor, Industry and Media community, we got access of that clinical trial, who then saved Kusum.

Even today Kusum and many other Cancer patients in India, are looking for access to global clinical trials hence access to latest treatment/ medicine but with NO or limited luck.

Dear Policy makers, Researchers, Doctors, Pharmaceutical Industry, Hospitals and Media team – Please understand clinical trial can make a difference between life and death. For Cancer patients, time is limitation and we cannot wait forever to improve the clinical trial access situation in India.

Hope we would be heard!!

Clinical Trials and Kusum’s story in “The Week” news magazine

A year back Kusum/ our story was covered by India’s largest circulated English magazine “The Week”, as cover story. They published a special issue on Clinical Trials under “Trial, and error”.

Though in India, clinical trial is shown majorly as bad name however this publication shared the other perspective of Clinical trails, how it is essential to save millions of life, how it could provide access to latest treatment without which patients especially from Cancer and Rare Disease are horribly suffering and dying.

This cover story covered interviews of many such patients and also prominent Doctors, stakeholders and Health Minister of India Dr J. P. Nadda.

It has now 1 year since this story has published but I am thinking what has changed in last one year? Have we achieved the goal? Have the system and policies changed enough to fulfill unmet medical need?

Unfortunately the answer is No!! Though I do agree that there are some improvement in last one year and thanks to all stakeholders including government of India however it is not sufficient at all. Even not able to fulfill minimum urgent medical needs to save those innocent lives. #ClincalResearch #ClinicalTrails #AccessToLatestMedicines #RiseToSurviveCancer

Have a read of the story at link below, to under clinical trails, its needs and situations in India:

http://www.theweek.in/health/cover/clinical-trials-research-india.html

Week.PNG

 

It’s me, Linnea :)

If you are looking for motivation & inspiration in Lung Cancer then allow me to introduce with you, one & only “Linnea Olson”!!

life and breath: outliving lung cancer

Last night I drank half a bottle of wine and ate half a pint of ice cream for dinner. Had you been here, I would have offered you the other half(s). My sugar and grapes meal was a celebration, as yesterday I learned that my scans are still stable.

This felt like a big deal because the previous scan of my lungs had been flagged for possible progression. That was three months ago and I didn’t get anxious until the day before yesterday, when that old familiar feeling of dread hit me like a ton of bricks.

Back in the day I might have bounced this anxiety off of my spouse, but I am now more than four years into traveling solo. Although I am one tough mother, (and have a t-shirt that says as much) some days just being strong doesn’t quite cut it. Fortunately I have learned how…

View original post 243 more words

Lung Cancer Advocacy in India – National Coordinator for ALK Positive International Group

To continue with our ongoing efforts for Lung Cancer patients in India, Vivek has took the role & responsibility of National Coordinator of India for ALK Positive group which is an international group of Non-Small Cell Lung Cancer (NSCLC) patients and caregivers afflicted with the Anaplastic Lymphoma Kinase (ALK) gene mutation/rearrangement.

It is great responsibility & lots of work to do for ALK positive Lung Cancer patients in India.

If you come to know about any Lung Cancer patient in India with ALK positive mutation, then either:

 

ALK national coordinator

As Speaker at Novartis – Lung Cancer and Clinical Research Advocacy

27540037_1464450533683322_8146644053817892897_n.jpg

Kusum & I got wonderful advocacy opportunity as got honour to be invited as speaker at Novartis.

It was amazing to be there and to represent Cancer Patients & their needs, with thousands of Scientists & Global senior Leadership at Novartis.

Great experience…..Hope our story & discussions would have encouraged the Researchers to do more research for Lung Cancer patients globally & bring more Clinical Trials to India.

#WorldCancerDay 4th Feb
#PatientsEmpowerment
#NeedMoreResearch
#LungCancer
#LCSM
#ALKPositive