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.:
- ‘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);
- “Better Access to Clinical Research & Research Medicines for Cancer patients including ALK +ve in India’;
- “Better and affordable mutation/ sub-mutation testing facility”;
- “Collaboration with Doctors and Hospitals for better support and treatment”,
- “Raising Awareness about Lung Cancer & ALK +ve”
- “To identify more patients of this rare type of Cancer in India and connect them to global group”
- 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, as sponsored by Novartis.
Copy of first flyer (as kindly sponsored by an ALK patient & great friend ‘Chacko Varghese’) for ALK Positive India is presented below.
All photos in flyer are of ALK Positive Lung Cancer patients or their caregivers from India and abroad.
If you know anyone with ALK Positive Lung Cancer, please share the details of ALK positive global & India group, as provided in this flyer.
#Hope #RiseToSurviveCancer #LosingIsNotAnOption #ALKPositive #LungCancer #India #PatientSupportGroup #LatestTreatment #ClinicalResearch
National Coordinator ALK Positive
Patient Advocate for Lung Cancer, Clinical Research and Timely Access to Latest Treatment