Rise To Survive Cancer

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

In a boost for our ongoing work & fight for better access to latest medicines for Cancer patients especially Lung Cancer patients in India, we got an honor to meet & interviewed by Dr Upal, Director of Patient FoRCe at LUNGevity (world largest, successful & influential Lung Cancer non-profit organization, based in US). Dr Upal who became a friend, mentor & guide as soon as we met, who in his short trip to India, ensured a visit to our place to meet.

We are learning, determined & getting more confident with increasing support to see a day when no Cancer patient in India will die, due to non-access of a medicine that is available in any country of world.

Link of blog as written by Dr Upal for LUNGevity website, based on our interview as below:

https://www.lungevity.org/for-patients-caregivers/blogs/voices-from-the-community/new-year-new-inspiration-and-new-resolutions

Much needed conference on Lung Cancer as “Lung Cancer Consortium Asia” has happened in Mumbai, India.

It was great honor for me to present as panelist while having the big responsibility to rightly represent Lung Cancer patients, caregivers in India along with global patient support gp of NSCLC ALK+ patients.

“Lung Cancer Consortium Asia” conference has also provided rare opportunity of open, direct, honest discussion between country’s best Oncologists, Radiologist & Lung Cancer Patients, NGOs..Great discussion, Great Learning for all

Kudos to the organizers especially to Dr. Kumar Prabhash (Prof. Dept of Medical Oncology, Head Thoracic oncology, Tata Memorial Hospital). Such a humble, caring Doctor – think, talk and work only for patients

#LungCancerAdvocacy #RiseToSurviveCancer

Recently we got the opportunity to attend a Cancer related conference on an important topic “Affordable Cancer Care in India” which was attended Minister of State in the Ministry of Health and Family Welfare, Govt of India, Bureaucrats including Director General of Health, Policy makers, country’s top Oncologists and many Innovator & Generic pharmaceutical industries representatives.

It was good conference as all topics were critical for patients and their family especially when comes to financial impact with Cancer. We want to congratulate ‘BCPBF The Cancer foundations’ and organisers to gather so many key stakeholders together and putting such critical patients sensitive & related topic on table.

Though as we experienced before affordability, access is issue. If we do not have access to right & latest medicines in India, then all other things would become secondary. And I got the opportunity to raise this point that before affordability, access is issue….access to latest medicines & clinical research for better treatment & long survival for Cancer patients in India in urgent medical need.

All discussions by panelists & speakers were open and progressive. I hope policy makers would hear the recommendations from conference.

But yes, one thing I found lacking and it is common in India but wish to share is – Lack of ‘patients voice’ or ’empowered patient voice’ in such important conferences & discussions. We are talking and caring about patients, in that scenario as very common in western countries where patients have empowered voice, patients advocates should be part of each sessions like Doctors were.  This will also help to understand the issue better as you are hearing who are suffering and to raise demands more strongly infront of policy makers. Despite that we are happy that stakeholders are thinking & talking about such sensitive topic where with Cancer, patients & family usually lost all available resources & have to struggle to survive.

We will continue to raise patients voice ✌️