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P1.02 - Advocacy (Not CME Accredited Session) (ID 934)
- Event: WCLC 2018
- Type: Poster Viewing in the Exhibit Hall
- Presentations: 1
- Coordinates: 9/24/2018, 16:45 - 18:00, Exhibit Hall
P1.02-05 - ALK Positive Lung Cancer: Patient Engagement and Partnership (ID 13902)
16:45 - 18:00 | Presenting Author(s): Shelly Engfer-Triebenbach
Approximately four (4) to seven (7) percent of non-small cell lung cancer (NSCLC) is driven by the ALK transfusion. In the United States, approximately 11,000 people are diagnosed with ALK-positive NSCLC every year.
There is an array of treatment options for the ALK-positive patient, and these options have improved overall survival rates in this subset of NSCLC patients. Currently, there are four FDA approved tyrosine kinease inhibitors (TKIs) that treat ALK-positive NSCLC: crizotinib, ceritinib, alectinib, and brigatinib. A fifth, lorlatinib, is expected to be approved shortly, and there are other drugs that are in clinical trials. Invariably, patients develop acquired resistance to each of these drugs, but the mechanisms of resistance can vary. The proper sequencing of these drugs also remains an open question.
ALK Positive is a community of over 1,000 people from 38 countries, who are either living with or personally affected by ALK-positive NSCLC. It was founded with the goal of bringing information, empathy, and support to survivors and caregivers alike. The ALK Positive community also encourages the sharing of patient information so that patients can make informed treatment decisions.
A primary goal of the ALK Positives is to improve survival for people with ALK-positive NSCLC by accelerating research. To that end, in less than a year, the ALK Positives have raised about $400,000 to fund two (2) research grants relating to ALK-positive NSCLC. In consultation with the scientific advisory panel provided by the Lungevity Foundation, ALK-positive patients themselves will decide which research to fund. Announcements of the grant awards are anticipated in May 2018. The group is also engaged with researchers, treating physicians, other lung cancer organizations, and the pharmaceutical industry, so as to advance cutting edge research and treatment of those living with ALK-positive NSCLC, with the long term goal of finding a cure.8eea62084ca7e541d918e823422bd82e Conclusion
The ALK Positive community is a crucial component of the "patient-first" movement that has been gaining momentum in the lung cancer field recently. Just in the first four months of 2018 alone, the ALK Positive group grew close to twenty percent (20%), and the trend is likely to continue, as patients become more educated about their disease and increasingly desire to truly be partners with the medical community in their care.6f8b794f3246b0c1e1780bb4d4d5dc53
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