ALK In The House - IASLC Targeted Therapies Poster Presentation

TITLE:  The role of the ALK Positive community in improving outcomes for ALK-positive patients

AUTHOR: Dr. Colin Barton DDS

Background: 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 five FDA approved tyrosine kinase inhibitors (TKIs) that treat ALK-positive NSCLC: crizotinib, ceritinib, alectinib, brigatinib and lorlatinib, and there are other drugs are in clinical trials. Invariably, the cancer develops resistance to each of these drugs, but the mechanisms of resistance can vary. The proper sequencing of these drugs can vary and is an open question.

Method: ALK Positive is a community of over 1450 members from over 42 countries, who are either living with or personally affected by ALK-positive NSCLC. It was founded in 2015 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.

Result: A primary goal of the ALK Positive group is to improve the quality of life and life expectancy for people with ALK-positive NSCLC by accelerating research. To that end, in about 15 months to November 2018, the ALK Positives raised $600,000 to fund three (3) research grant projects relating to ALK-positive NSCLC. In consultation with the scientific advisory panel provided by the Lungevity Foundation, a panel of ALK-Positive patients reviewed and decided themselves in May 2018 which research to fund, from 14 applications. Now the group is raising a FURTHER $1,000,000 to fund still more research.

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 goal of making it a chronic disease rather than terminal disease, and the ultimate goal of finding a cure. ALK Positive is also in the process of teaming with ALCF/ ALCMI to sponsor ALK specific research.

ALK Positive is actively supporting ALCF to gather open-source data through its Lung Cancer Registry. We are also working towards creating a very detailed longitudinal survey/ registry in conjunction with Lungevity. In 2018 ALK Positive was represented by members at the World Lung Conference in Toronto, and the BCI NLC Roundtable in Washington. Members of our group are providing biological specimens for the SPACEWALK project researching resistance mechanisms. Our outreach involvement is growing exponentially.  

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. The group membership has grown a further 45% in size just in the last 10 months, and the trend is likely to continue, as more patients choose to become involved in learning about their disease and increasingly desire to truly be partners with the medical profession and researchers and pharmaceutical industry and advocacy organizations.