Hope Through Experience
AstraZeneca’s new program for people living with lung cancer offers inspiration.
If you Google images for ‘lung cancer’, your computer screen will be filled primarily with pictures of dark, diseased lungs and cigarettes. Although it is the leading cause of cancer death in the world, ten-year survival rates are low, the percentage of preventable cases is high and – despite the fact that non-smokers are a significant number of those who contract it – there is a stigma about the disease.
However, November was Lung Cancer Awareness Month and AstraZeneca’s new lung cancer program, called LVNG With, seeks to change at least some of that bleak story. It certainly does not have to be this way: breast cancer, for example, remains a significant killer but awareness of the disease is good, patient groups are well-organized, fundraising is high profile and treatment is successful. The ubiquitous pink ribbons serve as a vibrant reminder of what is achievable when everyone pulls together.
“Breast cancer is largely a chronic disease now,” suggests John McCarthy, AstraZeneca Vice President, Global Commercial Excellence. While the company is making no claims of improved patient outcomes in its new program, LVNG With sets out to offer lung cancer patients something that breast cancer sufferers have in abundance: a sense of community.
To achieve this, more than 100 people with lung cancer (and their loved ones) have so far shared personal stories about their journeys and revealed simple things about what happens in their day-to-day lives. It is hoped that their generosity and willingness to help support others with lung cancer will be inspirational for those who are perhaps in the first dark days of diagnosis.
By hearing what others think, patients may be able to better cope, for instance, with ‘scanxiety’, a word which describes the worry and anxiety ahead of a scan, getting results or attending a medical appointment.
These are authentic insights - from patients, for patients – and by using this first-hand testimony, www.lvng.org seeks to show that it is possible to have a full life after diagnosis. “What’s phenomenal about meeting people through this program is seeing people living their lives,” McCarthy says. “It’s very positive.”
In effect, what the site does is to share emotions, inspiration and encouragement. The idea of using voices came from lung cancer sufferers themselves, who said that they had been inspired by fellow patients to look at how they could live in their changed circumstances rather than giving in to inertia and despair. “They often point to a serendipitous meeting with a patient which led to them getting off the couch,” McCarthy says. “Instead of waiting to die, they can live a full, forward-looking life.”
AstraZeneca’s hope is that the website and the events can help accelerate this process. “It’s about the community and how we are able to connect them with these insights,” he goes on. “We want to fast-forward them into the future. Their life will never be the same, but that doesn’t mean that it’s over - they have an opportunity to move forwards.”
LVNG With was co-developed by AstraZeneca and more than 100 people living with lung cancer, and with three leading lung cancer advocacy organizations: Bonnie J. Addario Lung Cancer Foundation, Free to Breathe and Lung Cancer Alliance. “They are great partners,” McCarthy says. His bailiwick at AstraZeneca includes digital and innovation, and LVNG With was born out of these areas as his teams attempted to identify problems that patients were facing. “It was an area we wanted to look at because of AstraZeneca’s oncology portfolio,” he says. “Lung cancer is underserved at present.”
Launched in September in the US, the program also aims to connect those who are living with the disease in a series of live events. “This can’t all be about digital,” acknowledges McCarthy. A quarterly newspaper, for those who are not so digitally-savvy, is also part of the program and will be distributed at oncologists’ offices and other medical locations. The response so far has been “bigger than we had envisioned”, he admits. The website received more than 20,000 unique visitors with the bulk of program outreach beginning in October, which is “very good for a site without DTC or a tangible deliverable”.
Instead of a tangible deliverable, AstraZeneca wants patients to feel more hopeful about their futures. “Outcomes are not something we can ever imagine to measure on this,” McCarthy says. “But I can say that people are telling us that attending the LVNG program is making a difference to them.”
Part of the point of these live events - there have been three so far - is to allow patients and caregivers to meet one another. But it is also to allow them to hear in person from others, including some of those whose testimonies are on the website - and to tell their own stories to people who are keen to listen.
Among the questions discussed are ‘how can I give value in my life?’ “That’s hard to measure, but it’s great to hear people talk about it in meetings,” McCarthy says. “Science can provide hope for patients, but in this community there is another outlet for hope: seeing the future and reinforcing the idea of the fullness of the life that you can live.”
Life at AZ
McCarthy himself is an AstraZeneca ‘lifer’, starting out as a sales rep with the company nearly 30 years ago. He reflects on how things have altered in that time, but is obviously comfortable with the vision of current CEO Pascal Soriot. “I like to say that I’ve worked at three companies,” McCarthy laughs. “The Zeneca I joined is much different to AstraZeneca after the merger – and Pascal’s version of AstraZeneca is really a third iteration: he has changed the science and the landscape.”
Stopping to smell the flowers is not just one of those clichés. I’m more aware that life is precious and you have to enjoy every moment, particularly with the grandchildren.
So much has changed in the pharma space over the last couple of decades, not least in the evolution of digital and the rise of patient power. “If you’re standing still, a lot of people will go past you,” he says. “I’ve tried to stay current, partly by a process of ‘reverse mentorship’, which is listening to the smart people you’ve hired over time.”
It has served him well in his move up the company ladder. Previously, he served as Vice President, Commercial Strategy and Operations, where he was responsible for all strategic and operational marketing functions. He has also held a number of leadership roles during his career including Commercial Brand Leader for heartburn drug Nexium and for cardiovascular, as well as being National Sales Director, Oncology.
Thus, he has seen and heard a lot in his time in pharma – but even he was surprised to hear patients saying since the launch of LVNG With that they are thankful they got lung cancer. This seems utterly extraordinary, but McCarthy explains the context. “They are talking about how it has focused their lives and made them concentrate on the richness of what they have,” he says. The website certainly bears this out: “Stopping to smell the flowers is not just one of those clichés,” comments one lung cancer sufferer on LVNG.org. “I’m more aware that life is precious and you have to enjoy every moment, particularly with the grandchildren,” says another. “You never know what is down the road and we don’t want to miss anything.” While putting these sorts of statements together seems simple enough, the enthusiastic reception for the program points to something that had been missing in the lung cancer community, a gap which AstraZeneca is keen to fill.
“Pharma companies should be looking at how they serve their communities,” McCarthy says. Budgets and plans for 2016 are still being finalized but there may be an expansion of the live events around LVNG With. On the website, stories will be continually refreshed while the newspaper will continue to give patients “another way of finding some of the same motivation”.
The company is also in internal discussions which could see LVNG With expanded to other countries in Europe and in Asia. “It resonates,” he says. That is certainly true for McCarthy, who has a personal connection to the LVNG With program. His father was diagnosed with lung cancer 20 years ago and died a few months later. “He was very sick when he was diagnosed,” McCarthy recalls. “In his battle, he never really got past the first round of chemo.”
Fortunately, the science has improved in the intervening years and there are many more options available now for those who find themselves handed this terrifying news. “I want to pay tribute to the patients,” he concludes. “They have an amazing quality. And hopefully, we are doing them justice in how we share their stories. My father never had the opportunity to go through the same journey. That’s a great motivator.”
Enabling those living with this disease to better connect with others in the same position – and, by doing so, helping them to be inspired to live with it – may not be measurable. But it is certainly valuable.