Patient Advocacy Needs Many Kinds of Talent

I got involved in patient advocacy about a year after my lung cancer diagnosis. By that point, I'd been through one series of chemotherapy, a maintenance therapy, and was in the midst of my second go-round with chemotherapy. I decided that I was healthy, energetic and motivated enough to try and make a difference for this often-ignored and highly stigmatized disease.

At the prodding of a number of my friends, I published a book of letters I'd written in the early days of my journey. That led to invitations to speak at book chats. I then began looking for lung cancer activities in my metropolitan area and found some conferences and fundraisers to take part in. Rather quickly, I was invited to speak at the events. Event organizers understand that we patients have an important voice and they need our input. This was great for me, for I was finding a little niche for myself as a speaker and writer.

The Many Roles of Patient Advocates

What I have found over the past few years concerning patient advocacy is that many different talents are needed. I've been invited to take part in some activities that I frankly feel unsuited for, things like lobbying legislators on Capitol Hill. Other patient advocate friends I've made have a bent toward the underlying science and research that goes into new treatments. I consider both of these things to be very important...for someone else who has strength in these areas. Still other friends are great squeaky wheels, online powerhouses, and fundraisers extraordinaire. They make bold approaches to anyone and everyone and find ways to gain attention for our important cause.

So, I again give thought to what my strengths are. How can I serve the cause and help us continue to gain momentum? What do I like to do and what am I good at? Frequently, those two things will coincide, and in my case, I believe they do. I am a good communicator and I am a generalist. I can relate to the general public, people who have never given lung cancer a second thought. This leads me to direct my energy toward providing education and awareness about the basics of our disease and the people it affects.

Yes, I still get invited to the occasional conference or panel discussion. And I'm very pleased about that because I believe every audience of one or a thousand needs to know that we are all at risk for lung cancer. The good thing is, more and more people like me are living with it rather than dying from it, and we have the first-hand experience to lead others on a path toward a more promising future for patients who will follow us.

Getting Involved

Let the non-profits know you're interested in being involved. They'll help you get started. Here's a beginning list of fine lung cancer organizations.

• Bonnie J. Addario Lung Cancer Foundation
• Lung Cancer Alliance
• Lung Cancer Research Foundation
• LungForce
• LUNGevity

You don't have to be a patient or a caregiver, although many of us are. Anyone who has a heart and desire to make the future brighter for lung cancer patients and their loved ones can surely find a place in the advocacy community. I would love to welcome you at an upcoming event.

Editor's Note: We are extremely saddened to say that on June 8, 2019, Karen Loss passed away. Karen was a valued member of the lung cancer community and an incredible advocate and avid writer. She will be deeply missed.