Ahead of the 2017 World Conference on Lung Cancer (WCLC), Martha Orzechowski, Global Director, Oncology Patient Group Relations, met with Christina Sit, Program Manager, Lung Cancer Canada to discuss her work as a patient advocate, the value of the Faces of Lung Cancer Report, and proposals to increase access to new lung cancer therapies. The interview has been edited for length and clarity.
Martha Orzechowksi: Thank you for taking the time to catch up with us ahead of WCLC. We’d like to start with the biggest question - where do you see the largest unmet needs in lung cancer right now?
Christina Sit: I think the largest unmet needs can be categorised into three areas. Firstly, the level of lung cancer literacy across Canada and globally is not what we think it should be. This creates many barriers in garnering empathy for lung cancer patients, services for patients, and the amount of research conducted into the disease.
Secondly, access to treatment is still a challenge both in Canada and globally. Progress in treatment has improved in the last 2-4 years and innovations are happening so quickly that our health technology assessment (HTA) systems have not caught up. There is a disparity between new innovative treatments and how HTA is looking at them. For example when the first EGFR TKI was launched, the drug ended up being covered but not the test!
The third ‘issue’ is actually a positive problem. When I first started working in lung cancer I had patients calling me at first diagnosis or when they relapsed on therapy to guide them through further treatment options. Now I have patients calling to ask about going back to work following treatment! For the first time, we need to look at survivorship in lung cancer and supporting patients when they’re living longer, feeling better and feel they can get their lives back.
Martha: There is clearly a lot to be done! How can patient advocacy efforts help address those unmet needs?
Christina: We’ve realised that while lung cancer may have a large number of patients, it does not have the biggest share of voice. To counter this, we’re working together with other cancer organisations to advocate for the mutual goals. That helps us increase our share of voice and gives us more access to resources to work on behalf of patients.
Martha: Is this where the value of a network like the Global Lung Cancer Coalition can help?
Christina: These groups are tremendously important! When we meet with the GLCC, there is an invaluable sharing of ideas.
In Canada, we don’t get access to the latest treatments as fast as patients in the US, so we learn from our US patient advocacy partners on the patient experience with these drugs and use this real world evidence in our submissions to the HTA review.
We hear about ideas our partners use in their home country to increase awareness. For example, in Egypt they leveraged a show-stopping idea like a fashion show to garner a huge amount of media coverage despite limited budgets. We are also able to share resources and ideas to understand patient and caregiver needs such as our Faces of Lung Cancer Report.
Martha: Could you reflect on what you hear from the patients that Lung Cancer Canada serves, and how you bring these ideas to life in the work that you do?
Christina: Patients and caregivers are keen to keep abreast of new research developments and many benefit from meeting and talking to other patients. To provide them with this opportunity, last year we held the first ever Hope Is Here National Patient Summit. This was a tremendously informative and inspiring event for all! Many have gone back to their homes and stayed active in forming a lung cancer community. In addition, patients often talk to us about getting access to the latest medicines – so one of our key roles is in the support of a HTA review for lung cancer therapies. One of the good things about our healthcare system is that patient groups are asked to contribute to these discussions to show how a drug may make a difference to the lives of patients in Canada.
Martha: So how do you amplify the voices of the patients you represent?
Christina: I made it a personal mission to work out how I could expand our share of voice. This is how the Faces of Lung Cancer Report came about!
Every year the report focuses on a key issue in lung cancer. We use this theme to gather quantitative data on lung cancer patients and their caregivers. In 2017, our report is going to be looking at access; how patients can get access to earlier screening and diagnosis tools, or access to innovative treatments. We will use this information in our submissions to HTA reviews.
This is then supplemented by qualitative data such as stories on blogs, patient forums, and community bulletin boards, to provide a more in-depth look at what patients are saying about their treatment and identify common themes. This may be how it helps a patient get back to work, to travel further, or even sometimes just get them out of bed in the morning.
It takes both the quantitative and the qualitative data to show a treatment’s benefit to patients.
Martha: You mention the importance of data - how important is patient-reported outcomes (PRO) data?
Christina: In countries like Canada, where there are strict budget constraints, PRO data are critical for helping secure access to new treatments. Breakthrough drugs like targeted therapies or immuno-oncology therapies are often approved based on Phase II data, which is seen as a potentially expensive risk without further evidence. We need to help mitigate that risk of reimbursing a new drug with PRO data because our patients can’t always wait for Phase III data.
Martha: So how do you think the perceived risk can be mitigated?
Christina: The systematic collection of real world data and the implementation of cost-sharing models can both help mitigate payer risk. Evaluation of the drug, from clinical and financial standpoints should end at the reimbursement decision. Earlier access could be balanced by the collection of real world evidence for a set period of time by pharmaceutical companies to make sure that patients are benefitting from treatment and that healthcare budgets are sustainable.
If a drug isn’t working in the real world then as patient advocates we don’t want this drug to be publicly funded. We only want drugs that work for our patients.
Martha: What do you think is the role for patient advocates, pharmaceutical companies, and physicians in supporting patient access to lung cancer therapies?
Christina: I really think it takes everybody around the table to explore how we can update our healthcare system to best support today’s cancer patient.
When our healthcare system was designed, there were only two options after someone developed cancer, either they fully recovered or they passed away. So it wasn’t designed to support cancer as a chronic illness, and it definitely wasn’t designed to support precision medicine or innovative therapies.
As our understanding of disease has evolved, and our treatments have evolved, we need to work together to see how our system may evolve and this will take all of the people around the table.
Martha: Thank you so much for all of your insights, Christina! We agree that collaboration is the key to the success and we’re looking forward to furthering our partnership through WCLC and beyond!