AJ Patel is an eight-year stage IV lung cancer survivor. Back in 2013, he was told he might not survive six months. After battling a complex craniotomy, several rounds of chemo and radiation, AJ was losing hope. Biomarker testing was not well known then, but the doctor ordered the test and it literally saved his life. Today, AJ spends all of his time outside of a full-time legal career to help others affected by this disease, advocating for Biomarker Testing and most of all, being a voice of hope. AJ lives in Southern California with his wife and college aged kids. AJ finds strength and wisdom from meditation.
How did you first get involved with LUNGevity as a lung cancer advocate?
When I was first diagnosed with lung cancer, it was the worst time in my life. All happiness and hope vanished for my family. I wallowed in my misery for days before I decided I needed to do something. I did the worst thing I could do: I went on the internet. There was so much destruction and despair, and I felt even more anxiety. Until I stumbled upon LUNGevity. This changed the trajectory of my entire diagnosis. Through LUNGevity, I was connected to amazing people, from fellow patients to doctors to other advocates, who taught me so much and inspired me. They are the reason I advocate. They saved me by putting me in touch with the right people, the right call to action, and it’s my turn to give back. I spend every moment outside of my work advocating on behalf of lung cancer – for more research, more biomarker testing, and more empowered patients.
Can you describe your role as a LUNGevity advocate?
My advocacy has many avenues. First, there are specific messages I work to raise awareness about. For example, I advocate for biomarker testing to be the standard of care when people are diagnosed with lung cancer so a patient’s healthcare team can be informed on the best way to treat a patient. It should also be performed at any recurrence to learn of any new markers that are driving the cancer to inform best possible treatment. Even if all tests come back negative, this can inform your treatment plan.
I also sit on the lung cancer research review committee for the Department of Defense. This is a very rewarding form of advocacy for me because I am able to weigh in on how proposed research might impact patients. It’s also rewarding in a more self-serving way as I am able to see the tremendous amount of hope this research will bring in the near future. When I talk to other patients, I can tell them with confidence that tomorrow will be a brighter future for the lung cancer community.
Lastly, I work with patients, guiding them to be better advocates for themselves. I help them learn and empower them by sharing my own experience and knowledge and push them to ask questions and demand better of their care team. From my own lung cancer journey, I have learned how essential it is to advocate for yourself when it comes to your health, and I want others to benefit from this lesson.
What advice would you give to someone who is looking to get involved in advocacy?
When I was beginning in advocacy, I thought back through my experience with lung cancer and determined what made the biggest difference to me. For me, it was my LifeLine mentor, who helped me emotionally, and the importance of biomarker testing on my treatment journey. That is why these two things have become pillars of my advocacy. Think back on your own experience – what was the most meaningful thing to you? This is where you should begin.
Are you interested in joining Sarah in her efforts to drive change in lung cancer? Become a lung cancer advocate by signing up for the LUNGevity Action Network.
LUNGevity Spotlight is a way to highlight people living with lung cancer, caregivers, advocates, volunteers, and fundraisers who are making a positive impact in the LUNGevity community. We hope that their stories will inspire and encourage many more to get involved.