A Serendipitous Journey to Patient Advocacy

Lillian Leigh

Lillian Leigh is an Australian lawyer and a lung cancer patient research advocate. She was appointed by Australia's Federal Health Minister in 2018 to the Advisory Council of Cancer Australia, where she has also served on the CEO's Research and Data Advisory Group as well as the PdCCRS Grants Review Committee. 

As a research advocate, Lillian is the Advocacy Chair and a Board member of the Thoracic Oncology Group of Australasia, which is a multidisciplinary collaborative organization dedicated to clinical trials and translational research in lung and other thoracic cancers. Prior to this, Lillian served as a member of the Consumer Advisory Panel and the Management Advisory Committee of the Australian Lung cancer Clinical Trials Group (ALTG) under the auspices of Lung Foundation Australia. Lillian is also a research advocate with Woolcock Institute’s Lung Cancer Research Network which focuses on preclinical and translational research in lung cancer.

Lillian is a proud member of the ROS1ders and has contributed to its patient-driven research initiatives. She is also a patient advocate for Rare Cancers Australia, Cancer Voices NSW and Cancer Council NSW. In 2016, Lillian received the Patient Advocacy Award at the WCLC 2016. She was a mentor with IASLC's first Supportive Training & Advocacy in Research and Science (STARS) Program at WCLC 2019. 

Lillian spoke with the IASLC about her individual patient advocacy journey, which she sees as very serendipitous.  

Lillian: Right after I turned 34, an ultrasound discovered a lump, and a subsequent biopsy revealed lung cancer. I come from a family of doctors, so I had scans done very quickly. I was basically in the hospital within hours of my confirmatory scan, having my pericardial effusion drained. After going through a really quick diagnostic process, I then went through weeks of waiting because first I was EGFR negative, then ALK negative, and then I had to wait for my ROS1-positive results via FISH test. I remember how hard it was over those weeks not to start treatment. At the time, with my very limited understanding, it was so frustrating but in hindsight, I realize that it was the wisdom of my oncologist. I’m so glad that we waited because my first drug was a targeted therapy.

In Australia, private insurance doesn’t cover medication so unless the government subsidizes the drug (through its pharmaceutical benefits scheme), patients must pay out of pocket. Additionally, the government subsidizes costs for rare cancers treatments more slowly because of the lack of data. My oncologist talked to a new charity at the time called Rare Cancers Australia, which does crowd funding to help patients pay for their treatments. With generous donations from my family, friends, colleagues, and strangers, I was able to raise enough funds to pay for the US$75,000/year cost of my therapy.

The therapy was very tolerable except for liver toxicity, which led to a dose reduction and eventual discontinuation of the medication. It was really heartbreaking because I didn’t know what would come next. Fortunately, I met a ROS1 patient in America via the INSPIRE website, and he recommended that I participate in a phase I trial. After discussing with my oncologist, I was able to start the trial within a week of that discussion. A substantial commute was involved, but side effects were very minimal, so I’ve been able to stay on the drug for over 6 years. In addition, a trial site has opened close to my home so it has been much more convenient.

IASLC: What prompted you to make the leap from patient to patient research advocate? Did anything about each new step surprise you, or was it more of a natural progression?

Lillian: With advocacy, there’s a time when sharing your story publicly may be too risky because you haven’t worked through your own emotions and really begun to process your own challenges. For me, it took me a good 10 months to be able to find the emotional space to start to get involved. I had a young family and was traveling quite far to participate in the trial, and those things were my focus. It’s very interesting though because I went straight back to work after my diagnosis because I wanted some sort of continuity and normality in my life. It wasn’t until things settled down for me a bit that I felt like I could “take a break,” which is interesting psychologically. Once I took extended leave, I knew I wanted to do volunteer work. At the hospital, there was one pamphlet on the counter, only one, and it was for an organization called Cancer Voices. I got involved in a project regarding insurance coverage for patients with cancer, which was an amazing fit because my professional work had been in natural disaster recovery, so I was very familiar with the insurance industry and its leaders. 

From there I did some training in research advocacy with a cancer advocacy organization. When I saw a bar graph on the organization’s cancer research funding which showed zero dollars of funding for lung cancer, I knew that I wanted to become more involved with research funding. I already knew at the time that lung cancer was the leading cause of death in Australia, and I was just shocked that neither the graph nor the full report even mentioned lung cancer funding. It was ridiculous.

Around that time I was invited to speak on a radio show. When I subsequently organized a yoga event to raise awareness about lung cancer and research funding, it drew the attention of the national television news. So it all started to snowball in a positive way.

IASLC: Where is your passion at this point in advocacy, and what are you most proud of in your advocacy work? 

Lillian: The more I find out about lung cancer and the more people I meet, the more I realize that people—at individual and collective levels—really do want to make a difference. I always thought it was a chicken-and-egg challenge. I thought that there weren’t many lung cancer researchers, compared with breast cancer for example, so obviously the pool of research was smaller and the pool of really impactful research was even smaller, leading to less attraction of funding. Because of the low funding, fewer researchers were attracted to this area. It seemed circular to me. Cancer Australia is the second biggest funder of grants in the country. I joined the Grants Review Committee to learn more about the grant selection process, hoping to find understand the system and thereby help improve funding. It has been very interesting and rewarding.  As a patient advocate, it’s very rewarding to have a voice. Most of the people with whom I work are very respectful of the patient’s voice, so I’m really grateful for that. It has become more of a conversation versus just a side note for physicians and researchers, and that has been so meaningful.

There’s only one of me, and I’m here for a limited time just like anyone else. A drop of water in the ocean doesn’t make much difference, but a drop combined with other drops can carve rock. It’s not about me or small groups, it’s about the entire lung cancer patient community. So I’m very proud of the fact that I’ve worked with other people to develop programs to train people to encourage others—that mentoring experience is a chain effect. I’m so grateful that I’ve been able to survive long enough to see this, and there are now more and more amazing advocates in Australia as we’re surviving for longer and longer. 

IASLC: What do you think the most recent advances in research have been?  

Lillian: There is so much exciting research happening, it’s hard to narrow it down. Cancer Australia just published a report on the prospects, process and delivery of a national lung cancer screening program in Australia. It noted that more than 12,000 deaths would be prevented and 50,000 quality-adjusted life years would be gained over the first 10 years.  Research in lung cancer screening, such as the NELSON trial and more recently TALENT, will improve lung cancer survival dramatically. I really hope that the Australian government will implement a national lung cancer screening program in the not-too-distant future. 

And of course, discoveries in immunotherapies and targeted therapies in relation to molecular biomarkers are very exciting. Every conference I go to, it seems like there is another therapy or biomarker, or new ways to combine them in early- and late-stage settings.

IASLC: What are you looking forward to regarding your participation in STARS? 

Lillian: In 2019, I applied to STARS because I wanted to be mentored. There were so many people in America who I knew I could learn from. When I was invited to be a mentor, I was very grateful for the opportunity to participate. All the PRAs have individual strengths and experiences that they bring to research advocacy, and I think that it’s true that a program like STARS provides such a uniquely immersive experience to meet, support, and inspire one another. In addition, there is so much we’ve done personally in our own regions that we don’t have to reinvent the wheel—we can share our ideas and adapt others’ to our regions and needs. 

IASLC: Do you have any advice for patients who are looking to get more involved in advocacy? 

Lillian: You first need to know yourself – what are your strengths, skills, interests and challenges, as well as where you are placed in terms of your networks and surroundings. All of that will help you decide what to do next. If research advocacy is something you’re interested in, then find training programs like STARS and seek out mentors that can help guide you in that field. I think that’s the beauty of advocacy—that we’re all so different as people and have different skills, which is what we need as a patient community. So I think my key advice is not to copy anyone else. Just be who you are, and use your talents and passion to do something for the patients who are here now and the patients of the future.