Patient Spotlight: Dr. Sydney Barned, Maryland, USA
We interviewed Dr. Sydney Barned - a medical doctor, ALK patient, and very active lung cancer advocate. We learned about her personal journey with ALK+ lung cancer, how lung cancer has also affected other members of her family, and, more importantly, her tireless involvement in lung cancer advocacy, some of which has already resulted in legislation being passed to help lung cancer patients.
Can you share a bit about your personal journey and how it led you to become a patient advocate for lung cancer?
My personal journey into patient advocacy for lung cancer began with a series of unexpected and life-altering experiences. In 2016, while preparing for my medical residency, I noticed that my regular jogging sessions were becoming unusually challenging. Initially, I dismissed this as being out of shape due to a recent break in my exercise routine. However, when I began experiencing severe shortness of breath that would even wake me up from sleep, I realized that the issue was more serious than I had thought.
At the time, living in Jamaica, I sought medical attention at the emergency room where I worked. A chest X-ray revealed a significant anomaly in my left lower lobe, which was initially treated as walking pneumonia. Despite treatment, my symptoms evolved, leading to a cough and later a diagnosis of hyperactive airway disease by a pulmonologist. The symptoms eventually subsided, but this was just the beginning of my journey.
After relocating to Washington D.C. for my residency, I began experiencing wheezing a few months later. With a family history of asthma, I suspected I might be developing adult-onset asthma. However, keeping in mind the abnormal chest imaging from earlier that year, I sought further evaluation. Asthma tests came back negative, but a repeat chest X-ray showed a persistent left lower lobe abnormality. This prompted me to urgently request a CT scan, which revealed a mass compressing my airway, which explained the wheezing.
The rapid escalation of tests that followed led to a shocking and life-changing diagnosis: stage 4 lung cancer. I was placed on Crizotinib, and I had a great run for 5 ½ years until I transitioned to Alectinib.
This diagnosis was not only a personal turning point but also a catalyst for my journey into patient advocacy. It equipped me with unique insights into the world of lung cancer. My medical background provided me with the tools to understand the intricacies of the disease, while my experience as a patient offered a firsthand look at the challenges one faces when navigating the healthcare system and coping with the emotional toll of such a diagnosis. It has driven me to use my knowledge and experience to raise awareness, advocate for better research and treatments, and provide support and guidance to those affected by lung cancer. My journey has transformed me from a physician to a passionate advocate.
What is your mission as a patient advocate, particularly in the context of lung cancer awareness and support?
As a patient advocate, my mission is to increase lung cancer awareness and support by fostering an informed, empowered, and proactive community. I aim to bridge the gap between medical professionals and patient understanding, ensuring that individuals are well-informed about the latest developments, treatments, and available resources.
I am committed to advocating for the importance of early detection and personalized treatment approaches, including the significance of biomarker testing.
My advocacy extends to influencing policy and healthcare practices, championing initiatives that improve patient care, funding for research, and addressing disparities in the healthcare system.
Ultimately, my mission is to inspire change that leads to better outcomes, reduced stigma associated with lung cancer, and a future where every patient has access to the care and support he/she needs through education, collaboration, and persistent advocacy.
Could you describe some of the specific advocacy initiatives or projects you've been involved in recently related to lung cancer?
I've been actively involved in a variety of advocacy initiatives and projects recently, all aimed at improving awareness, policy, and support for lung cancer patients.
Advocacy in Policy and Research:
- I testified before the Maryland Senate and House of Representatives advocating for expanded access to biomarker testing. This effort was successful, leading to a bill now mandating state insurance companies to cover the cost of these critical tests.
- I participated in a lung cancer screening press conference on Capitol Hill alongside organizations such as Lungevity, GO2, and the American Lung Association. We highlighted the impact of lung cancer and urged support for two significant bills: the Increasing Access to Lung Cancer Screening Act and the Women and Lung Cancer Research and Preventative Services Act.
Collaboration with Health Organizations:
- As a member of the Lung Cancer Research Foundation's Education and Engagement Committee, I contribute to discussions on how best to educate and engage the community.
- I am involved with the Maryland Lung Cancer Screening Collaborative, a collaborative working on strategies to increase lung cancer screening rates in the state.
- I am a part of Lung Cancer Foundation of America’s Speaker’s Bureau, the White Ribbon Project, and I worked with Heal Collaborative, speaking and advocating on behalf of lung cancer patients.
- I also support individuals directly as an outreach to Jamaican patients and serve as a GO2 Phone buddy offering comfort and advice to those affected by lung cancer.
- I will be joining the ACS National Lung Cancer Roundtable Health Equity Task Group to help identify and work to overcome barriers to equitable access to care and strengthen and support state-based initiatives.
Events and Seminars:
- I'm a member of the planning committee, and regular attendant, for the GO2 Voices Summit where I share my story and advocate for increased funding for lung cancer research.
Social Media Campaigns:
- I actively use platforms like Facebook, Twitter, Instagram and TikTok to share informative posts, infographics, and videos. These posts are designed to educate about lung cancer symptoms, risk factors, the importance of regular health check-ups, and debunking myths about the disease.
Media Engagements:
- I engage with both local and national media to participate in interviews, write articles, and contribute to health segments focusing on lung cancer. These engagements help raise public awareness and understanding of lung cancer issues.
Through these activities, I aim to leverage my personal experience and professional knowledge to make a tangible difference in the fight against lung cancer, advocating for policy changes, increased research funding, and better patient support.
How has your personal experience with lung cancer influenced your advocacy approach and priorities?
My personal experience with lung cancer has profoundly shaped my advocacy approach and priorities, deeply influenced not just by my own journey but also by my family's experiences. Three years after my diagnosis, my Aunt Sophia, a non-smoker like me, was diagnosed with lung cancer. However, our paths diverged significantly due to the different genetic mutations driving our cancers. This stark contrast highlighted the complex and indiscriminate nature of lung cancer.
My diagnosis led me to appreciate the critical role of personalized medicine, especially when an ALK mutation was identified in my cancer. I have been able to bypass a lot of the negatives of being a lung cancer patient and live with minimal side effects. However, when Sophia was diagnosed with a different mutation (EGFR Exon 20), it became painfully clear how varied and unpredictable lung cancer can be. Her battle was a testament to the disease's complexity and, sadly, she passed away in July 2023.
Sophia's death was not only a personal loss but also a stark reminder of the urgent need for more comprehensive lung cancer research. Our experiences as non-smokers with different mutations illustrate the diverse nature of lung cancer and the critical importance of understanding these differences to develop more effective personalized treatments.
The loss of my Aunt Sophia has added a new purpose to my mission. It's a painful reminder that behind every statistic, there's a personal story of struggle, hope, and sometimes loss. These stories collectively drive my commitment to advocate for a future where lung cancer is not a formidable diagnosis but a manageable condition, and where we are not devastated by this disease.
Can you share a specific moment or achievement in your advocacy work that you find particularly meaningful or impactful?
One specific moment that stands out as particularly meaningful and impactful in my advocacy work was when I testified before the Maryland Senate and House of Representatives to expand access to biomarker testing. This effort held a deeply personal significance for me and marked a professional milestone in my journey as an advocate.
Biomarker testing played a crucial role in my own treatment. I remember when my oncologist informed me that an ALK mutation was driving my cancer. At the time I didn't fully understand the significance of those words. But this revelation meant that I wouldn't have to undergo chemotherapy; I wouldn't have to face the debilitating side effects often associated with it. Instead, I could continue my intern year, my chief residency, and complete my residency on time with my peers. Over the past seven years, I've lived with minor, insignificant side effects, allowing me to live out my dream of being a doctor and caring for others. When I was diagnosed with brain metastases in September 2022, the knowledge of my specific biomarker meant we could swiftly switch to another targeted medication, Alectinib. Without biomarker testing I wouldn't be living the functional life I have today.
Testifying for broader access to these tests wasn't just about policy for me; it was about giving every patient the same chance at life that I had. Standing before the legislative body, sharing my story, and explaining the life-changing impact of biomarker testing was both daunting and empowering. The bill's passing, which mandated Maryland insurance companies to cover the cost of these tests, was a monumental victory, and, thankfully, other states have or are in the works to pass similar legislature. This represents hope and opportunity for countless patients, allowing them more personalized, effective treatment plans and, consequently, a better chance at a quality life.
Interview by: Christina Weber