Lung Cancer – a cancer with highest mortality across the world but comparative less research and options.
Lung cancer – a cancer with stigma of smoking disease however majority of newly diagnoses cases are non-smokers.
Lung cancer – for which, there is not a single NGO in India unlike many for Breast Cancer, Blood cancer etc. The picture in world is not much different.
Kusum is having a rare type of Lung Cancer which is Non-Small Cell Lung Cancer (NSCLC) with Anaplastic Lymphoma Kinase (ALK) gene mutation/rearrangement.
To understand Lung cancer & ALK mutation – There are two major types of lung cancer, non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC).
Non-small cell lung cancer accounts for about 85 percent of lung cancers and includes:
- Squamous cell carcinoma;
- Large cell carcinoma
In Adenocarcinoma, there are multiple type of mutations and ALK is one of them which is rare type as found only 3-7% of adenocarcinoma lung cancer cases.
We do have a global group of ALK positive patients , where three tenets group members live by are Information, Support, and Empathy, no matter where one may be. 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 to improve our physical and emotional well being; and having Empathy towards each other because we are all on this journey together, no matter where we live.
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 (on the date of writing this update, not a single trial ongoing for ALK +ve patients in India);
- “Better Access to Clinical Research & Research Medicines for ALK +ve Cancer patients 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 each and every patient of ALK Lung Cancer in India and connect them to ALK support group, so that no one fight alone”
- 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, with support of like minded and exceptional patient advocates Amit Mohille, Chacko Varghese, Sushila Krishnamorthy and others, we had formed India ALK Positive support group to support patients locally for all above mentioned needs while remain active part of global group for 24*7 support.
ALK Positive India, is first patient support gorup in India dedicated for Lung Cancer and first Oncogene foucused support group in India.
Oncogene focused / mutation level patient support group is a new concept in India, not only new for patients but also for Doctors, Industry and policaymakers in India. However it has expectional benefits as all patients are of same type of mutation level cancer, on same group of medicines, side-effects…so much knowledge, experience and support!!.
We are actively working on these needs in India while meeting with patients, doctors, industry, policy makers, hospitals and media. 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 group for all type of Cancer.
ALK Positive India now got 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 group email id: firstname.lastname@example.org