A very happy new year to all of you (though maybe a few weeks late)! I just returned from India visiting family – and have come back all inspired. My new year’s resolutions are to advocate for more funding for lung cancer research and better access to medicines.
I am sure you are wondering what India has to do with my resolutions. Well, I had the honor of meeting Vivek Tomar in Gurgaon , a suburb of New Delhi. He is caregiver to his wife, Kusum – a stage IV non-small cell lung cancer patient whose tumor is ALK-positive. Over hot gajar ka halwa (similar to carrot cake) and a glass of hot milk, we chatted about Kusum’s journey.
Vivek has been a passionate and vocal advocate for all lung cancer patients in India. In his spare time (which is very little), he counsels other lung cancer patients about how to navigate their journey through the highly complex Indian healthcare system, tells them what types of questions to ask their doctors, and, most importantly, helps them get access to life-saving medications. Vivek’s determination reminds me that advocacy starts at home… but needs to have a systemwide reach. In 2012, none of the ALK inhibitors found in the US were available in India. Vivek tirelessly fought to get access, and in 2014 Kusum was the first patient in India to receive ceritinib. After Kusum progressed on ceritinib, Vivek continued his advocacy for Kusum and made sure that she received alectinib, a new ALK inhibitor that works well in patients who have progressed on prior ALK inhibitors. Kusum thus also became the first patient to receive alectinib in India. In a country bogged down by bureaucracy, this was no mean feat!
Currently, four ALK inhibitors are approved in the US, but only two are available in India. Furthermore, very few clinical trials that provide access to new ALK inhibitors are open in India. Vivek’s efforts have led to more clinical trial sites in India. He has also championed for compassionate access to drugs after a drug has been approved. Kusum’s story has been covered by major Indian newspapers and is helping create awareness about ALK-positive lung cancer and lung cancer in general.
Sadly, Kusum’s story is more the exception than the norm. In her case, the stars aligned – with Vivek’s personal connections with the pharmaceutical industry and Kusum’s tumor being tested – to ensure that she got access to the right treatment at the right time.
I also learned about the six pillars involved in healthcare access –doctors, hospitals, industry partners, government and payers, media, and most importantly, the patient at the center. The need to have all of these stakeholders on the same page is becoming increasingly important to ensure that we have more funding for research, more awareness about lung cancer, and better access to life-saving therapies. My resolutions for 2018 are to advocate for more funding for lung cancer research and better access to medicines. Please join me!
You can follow Vivek and his work by emailing him at risetosurvivecancer@gmail.com or through Twitter at @R2SurviveCancer. You can also learn about his advocacy at https://risetosurvivecancer.com/about-us/
Dr. Basu Roy is LUNGevity's Director of Translational Research Programs/Director of Patient FoRCe.