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The Global Lung Cancer Coalition |
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On 24th and 25th April at the invitation of AstraZeneca 11 representatives of cancer patient and professional groups assembled outside Paris to discuss the needs of patients living with non-small cell lung cancer. They were:
- ALCASE (US), Nadine Jelsing, Interim Co-executive Director
- ALCASE Italia, Dr Gianfranco Buccheri, Scientific Secretary
- Association Española contra el Cancer, Juan José Llona, Director General
- British Lung Foundation, Dr Mark Britton, Chairman
- Canadian Lung Cancer Association, Gary Lathan, President and Chief Executive Officer
- Cancer Care Inc. (US), Diane Blum, Executive Director
- La Ligue National contre le Cancer (France), Michel Forst, Directeur General
- Japanese Red Cross Nagoya First Hospital, Dr Chikako Ariyoshi, Chief of Paediatric Department
- Ontario Lung Association, Ross Reid, President and Chief Executive Officer
- Roy Castle Lung Cancer Foundation (UK), Dr Jesme Baird, Director of Patient Care
- West Japan Thoracic Oncology Group, Dr Shinichiro Nakamura, President
Late regrets were received from the Cancer Research Foundation of America, Carolyn R Aldigé, President and Founder, as well as Jesus Hernandez, of the Association Española contra el Cancer. Indications of interest from Australia, Germany, and Sweden were received earlier but scheduling conflicts made representation impossible.
Mark Krueger and Kathy Redmond of Mark Krueger & Associates, Inc. facilitated the 1.5 day workshop, attended by 13 representatives of AstraZeneca. A representative from Shire Hall International a public relations firm was also in attendance.
This report is one of summary observations rather than detailed minutes.
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| The representatives of the twelve organization members of the GLCC after the board meeting (Orlando, 16- 17 May 2002). Dr. the Buccheri, for ALCASE Italia, is left third party from (before row). |
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| Meeting Goals
Through this meeting, participants hoped to:
- Discuss the unique issues and challenges around lung cancer
- Develop direct exchange of information amongst the groups on topics of mutual interest
- Identify ways of meetings the needs of lung cancer patients more effectively
Needs of Lung Cancer Patients
Participants agreed that lung cancer patients face significant barriers to accessing optimal care including:
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Lack of awareness of treatment options because of low media attention to the disease and its treatment |
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Stigma that leads the public and even some health care providers to believe they have brought the disease upon themselves |
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Prospects that led the participants to agree lung cancer patients, often diagnosed with stage 3 or 4 disease, feel they have "been handed a death sentence" |
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Lack of referrals to specialists by providers who may not believe that further intervention is necessary or appropriate |
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Unwillingness or inability to advocate for themselves because of gender, class, education, geographic location, and/or age; few survivors |
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Speciality of pneumo-oncologist not established |
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Few lung cancer designated units |
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Few lung cancer-specific organisations and support groups to address special needs |
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| Responding to the Challenge
Four organisations – ALCASE Italia, the British Lung Cancer Foundation, La Ligue National contre le Cancer (France), and the Roy Castle Lung Cancer Foundation (UK) – presented model programs for delivering effective patient services. Copies of these presentations are available upon request. Observations of these cases include: |
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Lung cancer-specific organisations are frequently young and underfunded. Their lack of critical mass prevents the delivery of optimal programming by talented professionals. Presenters and the Working Group as a whole particularly focused on their inability to hire and retain experienced media professionals to raise the profile of the disease and their organizations. |
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Collaboration amongst the groups exists albeit in a limited fashion. For example, pulmonary and respiratory groups work with lung cancer/oncology groups in their countries around tobacco control. |
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Pulmonary and respiratory groups, whilst counting lung cancer as a near term priority, have yet to mount extensive programmes in the area. Each must "put lung cancer higher up on the agenda," as one delegate stated. |
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Cancer leagues described programmes that encompass lung cancer. |
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Common Barriers to change include:
- lack of organizational finance
- low level of public awareness
- low level of political awareness and empathy
- inability to access specialty expertise
- competing institutional priorities (i.e. other cancers for cancer leagues and other respiratory diseases for lung/pulmonary organisations
- language and culture
- regulatory and financial barriers to accessing treatment
Participants recognised that progress by individual organizations and the working group will progress at different rates as they each face slightly different barriers to success.
The Path Forward: Building a Global Lung Cancer Coalition
After considering actions to take after the conference, delegates agreed that forming a global coalition against lung cancer could benefit patients and their organisations alike. With the ultimate goal of providing better patient care and support, participants hope to create "more active lung cancer patients" able to advocate for their own needs. To reach this goal, the Working Group seeks to "reposition lung cancer" as an international health problem by raising the public and professional profile of the disease whilst at the same time destigmatising it. These activities should improve patient outcomes from diagnosis to treatment.
The Global Lung Cancer Coalition Programme
Most appealing among the many potential global coalition activities identified were: |
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Hyperlinking member groups’ websites |
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Establishing a common identity and logotype |
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The development of a webpage dedicated to the global coalition with logo and attractive graphics was also discussed. Each member could host this page on its own website and links could be made from this page |
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Sharing existing materials with appropriate acknowledgement |
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Determining the feasibility of a global lung cancer awareness activity such as a common day, week, or month |
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Develop a media strategy to raise awareness of the disease, and communicate key messages about patients needs and rights and to "de-stigmatise" the disease |
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Develop press releases or position papers, provided that appropriate local media support is available upon launch |
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Develop a common brochure or list of questions on treatment options. National approvals and access policies may make this a challenge, however. |
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A conference on patient care and advocacy, possibly in connection with a professional society. |
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| Whilst enthusiastic about the potential of global coalition, members were cautious that concrete results could be expected only with designated staff and sustained communication.
Suggested Delegate Actions: |
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Delegates to hyperlink to each others sites |
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Delegates to review the emphasis of activity in their organisation for lung cancer and develop a strategy (as appropriate) |
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Delegates to review and share materials (with suitable acknowledgement to originator) |
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| Following that meeting, on September 24, the following Organizations, along with ALCASE Italia, lounched officially the Coalition: |
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