Advocating for Patients as Research Advances in Lung Cancer
By Lisa Cruz, Patient Advocacy Lead, Takeda Oncology and Andrea Ferris, President and CEO of LUNGevity
Within the past 10 years, the diagnosis and treatment of lung cancer has advanced rapidly – making the outlook for many individuals diagnosed with lung cancer today nearly unrecognizable compared to what those from previous decades had encountered. A diagnosis that once felt helpless is now met with advanced precision, multiple treatment options and the possibility of extended survival. So how do advocates adapt to support patients in this ever-evolving landscape?
To answer this question, Lisa Cruz, Patient Advocacy Lead at Takeda Oncology, spoke with Andrea Ferris, President and CEO of LUNGevity, one of the nation’s leading lung cancer organizations focused on improving outcomes for people with lung cancer through research, policy initiatives, education, support, and engagement for patients, survivors and caregivers. Together, they discussed some of the most important areas of advocacy LUNGevity is tackling and how we can help close the gaps in lung cancer care.
Lisa Cruz: LUNGevity has been dedicated to advancing the causes of the lung cancer community since its foundation, but this past year presented its own set of challenges for organizations. How has LUNGevity adapted, and what are you focused on in 2021?
Andrea Ferris: Our focus doesn’t really change year to year. We take on multi-year initiatives that focus on tackling the biggest issues people diagnosed with lung cancer and their caregivers face on a global scale. A few of these areas include advancing precision medicine, improving accessibility of comprehensive biomarker testing, transforming clinical trials to be more patient-centric and fostering health equity, diversity and inclusion. Health equity has been a focus for us for a long time, but the spotlight that has appeared on related issues over the past year has enabled us to accelerate these initiatives and form new partnerships within key communities. We want to make sure that all people diagnosed with lung cancer have access to care regardless of their demographic.
Another priority that has recently grown within our organization is supporting survivorship. Many people are living longer, better, healthier lives with lung cancer than they were a decade ago. This is great news, but living long-term with lung cancer has its own set of issues that can cause stress and anxiety for both the patient and their caregiver(s). These include, but are not limited to, financial concerns and health-related issues including psychological or sexual health issues.
Cruz: We know how critical having support and feeling connected is for the lung cancer community – particularly given the current environment. What are some resources LUNGevity offers that can help those who are facing these challenges?
Ferris: One way we offer support is by creating patient communities to help people connect on a daily or weekly basis through different platforms. A silver lining of the pandemic is that the transition to virtual settings helped open doors for many patients who would be too sick to travel to the in-person events. A few of the networks we offer include:
- Weekly Meet-Ups: Virtual “get togethers” moderated by a navigator where people diagnosed with lung cancer can meet and learn from each other and invited speakers.
- LUNGevity Lifeline: A program that identifies and pairs “phone buddies,” matching individuals by age, diagnosis, gender, etc. to speak with one another about their experiences. LUNGevity also has a Lifeline program to match caregivers with other caregivers.
- LUNGevity Facebook Networks: A collective of Facebook groups where people can connect, share insights, stories and personal experiences.
- Clinical Trial Ambassador Program: A program that matches patients who are considering enrolling in a clinical trial to patients who have previously participated in one.
- Lung Cancer Support Community: An online message board with 13,000+ active users that can be joined and posted to anonymously.
- LUNGevity Action Network: A platform for people who want to get involved, which allows users to share information, deliver educational materials to doctors’ offices, become social media ambassadors and more.
Cruz: What should people know about hard-to-identify or difficult-to-treat forms of lung cancer, like EGFR Exon20 insertion+ mNSCLC, and the populations affected?
Ferris: While there are limited approved treatment options available for certain forms of lung cancer, the science is evolving so quickly. As new treatments are discovered, the most important thing for NSCLC is to ensure patients receive comprehensive biomarker testing. Biomarker testing gathers as much information as possible about a patient's unique lung cancer by determining the presence of particular mutations and proteins. Testing can identify these rarer mutations so healthcare providers can determine which treatments may work for their patients, and importantly, which will not. Even if there isn’t a treatment available for them yet, there may be a clinical trial available that patients can consider.
Cruz: How can companies like Takeda Oncology and others within the industry better support people living with lung cancer?
Ferris: Investing in research is critical. The industry has so many intellectual and financial resources to understand more about lung cancer and how we can fight it. Beyond that, we need to continue working together on multiple fronts to educate and generate awareness about comprehensive biomarker testing and the possibilities it offers to patients and the entire care team.
Cruz: What is your hope for the future of the EGFR Exon20 insertion+ mNSCLC disease space?
Ferris: Treatment options are needed for this community – and more than just one. With every disease, we need first-line, second-line and third-line options because knowing what’s next is hugely important. Education is also critical for these specific subtypes of NSCLC. Misinterpreting EGFR Exon20 insertion+ mNSCLC as EGFR+ NSCLC can have massive implications for treatment, so we need increased awareness of these subsets of lung cancer and why they are different.
Cruz: What is the key takeaway you would want people to know about the importance of lung cancer awareness and the need for treatment research?
Ferris: My mom died of lung cancer in 2008. She was misdiagnosed for a long time, so when she was finally diagnosed, she was told she had six weeks to live. Since then, the industry has done a complete 180. There are options out there. Medications have improved, and the side effect profiles are better understood and more manageable with support from a healthcare provider. It’s so important that people understand this, because you’ll be more motivated to advocate for yourself and your treatment when you know there are possibilities out there for you.
To learn more about LUNGevity and their ongoing efforts in supporting the lung cancer community, you can visit LUNGevity.org. To learn more about NSCLC, please visit our disease awareness page on TakedaOncology.com.