Rise To Survive Cancer

Finally, the most awaited day of year came..our brave girl Kusum Malik Tomar has achieved the milestone of 6th Cancerversary ✌️✌️(6 year of survival since diagnosis at Stage 4 with her rare type of ALK Lung cancer metastatic to Brain ….if I include wrong diagnosis & treatment, it is 7 years).

6 months given to live to achieve 6 year milestone…wow, a journey which we were never thought to achieve this long 

It could not have been possible without soulful wishes of family and friends….our heartfelt thanks to each one of you 🙏

 

Yipeeeee :-),

Vivek

Back in 2015, Kusum and I became a member of a global group of ALK positive Lung Cancer Patients & Caregivers,  that group was first of its kind in world i.e. a mutation level patient support group.  The group uphold these by providing Worldwide Information about ALK lung cancer to each other. The group members (ALK+ve patients and caregivers) support one another around the globe (currently members are from 41 countries). The three tenets group members live by are Information, Support, and Empathy, no matter where one may be.

That global group changed our life. It helped us to became educated, empowered to have right discussion with Doctors, select right treatment and become advocate of ourself and for others. As all are patients & caregiver this type of Lung cancer so all discussions are 100% relevant….. You think if 500 patients are taking a specific medicine and share the experience with a new joiner, if some one is in a clinical trial of a new medicine & share experience or if some one meeting top oncologist/ expert of world & share experience….how much it could help a new patient & family. And then our global started to become Lung Cancer advocate, who are working globally to change future of Lung Cancer. Would you believe collection that our global group has collected $539,000 in a year to sponsor the research projects (being assigned to best researches of world, with support of Lungevity) to improve the quality of life and life expectancy for ALK-positive patients

However, in India, we realize that in addition to above there are some critical local/ country level needs which needs to be addressed locally. For ex.:

1. ‘Timely and Affordable Access to Latest Treatments for ALK+ve NSCLC patients in India” – This is so critical as life are at stake here and without medicine, how we could be able to save Cancer patients in India. As of today, in many countries, for ALK+ve patients, there are so many treatment options (including targeted therapies) are available via approval or clinical trials (approx 24 trials going on) however in India, we are no where (not a single trial ongoing for ALK +ve patients in India);
2. “Better Access to Clinical Research & Research Medicines for Cancer patients including ALK +ve in India’;
3. “Better and affordable mutation/ sub-mutation testing facility”;
4. “Collaboration with Doctors and Hospitals for better support and treatment”,
5. “Raising Awareness about Lung Cancer & ALK +ve”
6. “To identify more patients of this rare type of Cancer in India and connect them to global group”
7. To have a updated, validated list ready for NSCLC ALK +ve patients in India, that would not help to support each other but also help Government and Pharmaceutical companies to understand NSCLC ALK+ve disease burden and need of all those latest treatment available in other countries (as delay only cost someone life here in India).

Therefore, we have actively started to work on these needs in India while meeting with patients, doctors, industry, policy makers, hospitals and media. Today, I am member of global group outreach management team and National Coordinator for India to start ALK Positive India, a first group of its kind to identify, provide support and advocacy for ALK Positive Lung Cancer in India.

This concept (mutation level support group) is not only new to patients but for Doctors, Industry too in India.

However as we are sharing along with hard work of ALK Positive India team (patients & caregivers including Amit Mohile (Lead Western India), Sushila Krishnamoorthy (Lead Southern India), Chacko Varghese, Akash, Susain, Jagat S Arora, Sai Narayana, Santhosh & many others) observing positive change.

It is a long journey and we hope not to only to change future (for better) for ALK Positive Lung Cancer but also Lung Cancer in general and patient support for all type of Cancer.

Today, ALK Positive India is getting trained under NGO excellence program at one of India’s best Business school i.e. SPJIMR, Mumbai.

If you know anyone with ALK+ve NSCLC, please direct them to or Are you a patient or caregiver of someone with ALK+ Lung Cancer?

If Yes – please Join Us!!!

Deilats of ALK Lung Cancer patients and caregiver support group:

– Global group website: https://www.alkpositive.org/

– Global group facebook page for ALK patients and caregivers: https://www.facebook.com/groups/ALKPositive/

– India ALK patients whatsapp group: +91 8447013440 (only whatsapp active, no incoming or outgoing calls)

– India ALK group email id: alk.positive.india@gmail.com

#Hope #RiseToSurviveCancer #LosingIsNotAnOption #ALKPositive #LungCancer #India #PatientSupportGroup #LatestTreatment #ClinicalResearch

 

Thanks,

Vivek Tomar
National Coordinator ALK Positive
Patient Advocate for Lung Cancer, Clinical Research and Timely Access to Latest Treatment

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

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 Research/ Clinical 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!!

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

 

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:

• Please let me know at risetosurvivecancer@gmail.com
• Direct to https://www.alkpositive.org/
• Direct to closed Facebook page https://www.facebook.com/groups/ALKPositive/

 

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