Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2023 Jun 30;12(6):1303-1319.
doi: 10.21037/tlcr-22-713. Epub 2023 Jun 29.

Patient-led advocacy in ALK-positive lung cancer

Colin Barton  1 , Morhaf Al Achkar  1   2 , Jennifer A Blender  1 , Summer Hall Farmen  1 , Raymond B Hall  1 , Afroditi Maria Konidari  1 , Debbi Martinez  1 , Nancee Pronsati  1 , Marc Rosenzweig  1 , Carla Vass  1 , Emily S Venanzi  1 , William Westlake  1 , Marc A T Muskavitch  1
Affiliations
Review

Patient-led advocacy in ALK-positive lung cancer

Colin Barton et al. Transl Lung Cancer Res. .

Abstract

Patient-led advocacy organizations in the anaplastic lymphoma kinase (ALK)-positive lung cancer space are becoming increasingly influential. ALK Positive Inc. (hereafter "ALK Positive") is probably the most widely known among these organizations. Evolving from a private Facebook Support Group created in 2015 to provide a forum for ALK-positive lung cancer patients and caregivers to exchange information, empathy and support, ALK Positive transitioned in 2021 into a 501(c)(3) non-profit organization (NPO), with the mission to improve the life expectancy and quality of life for ALK-positive cancer patients worldwide. This review provides a historical perspective on the growth, activities and aspirations of ALK Positive to pursue patient advocacy and enable development of new therapies for individuals with ALK-positive cancers. This growth has been enabled by the collaborative efforts of ALK-positive cancer patients, their care-partners and oncologists, academic researchers, other NPO advocacy organizations, and members of the biotech and pharma communities who develop new therapies for ALK-positive cancers. ALK Positive has grown to provide a variety of patient services, to award competitive support for translational research and clinical trials intended to enable new therapies and improved quality and extent of life for ALK-positive cancer patients, and to collaborate with industry and academia to accelerate the development of improved therapies for ALK-positive cancer patients. ALK Positive continues grappling with a variety of challenges including further improving patient quality of life, enabling the development of new therapies, and extending its already substantial global reach and impact. This review summarizes many of the tangible impacts and aspirations engendered by ALK Positive for ALK-positive cancer patients in the past, present and future tenses-where we have been, where we stand and where we hope to go. The content is based on the historical recollections of the authors, and is accurate as of November 30, 2022, to the best of the authors' knowledge.

Keywords: Anaplastic lymphoma kinase (ALK); advocacy; lung cancer (LC); non-small cell lung cancer (NSCLC); patient.

PubMed Disclaimer

Conflict of interest statement

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://tlcr.amegroups.com/article/view/10.21037/tlcr-22-713/coif). The series “ALK-Positive NSCLC” was commissioned by the editorial office without any funding or sponsorship. CB reports payments received from Genentech and Pfizer, and participates on advisory boards of University of Michigan, Judy Tam ALK Lung Cancer Initiative and ALK Positive Medical Committee. SHF reports payments or honoraria received from Nuvalent, Daiichi Sankyo, Inc. and ASCO Advantage, support from American Lung Association, Lung Force Advocacy Day Hero, and participates on board for ALK Positive, and University of Pennsylvania Telehealth Research Center of Excellence-Penn Trace Advisory Board. AMK is the founding member of and participates on board of ALK Positive Europe. DM participates as Accounting, Fundraising and Second Opinion Program roles for ALK Positive, and holds stock or stock options of Johnson & Johnson. NP participates on Board of Directors for ALK Positive. CV received monetary support for attending ASCO 2022 conference as a patient advocate, and participates on Research Acceleration Committee of ALK Positive. ESV is a member of the ALK Survey Working Group of the Lung Cancer Registry, created by GO2 for Lung Cancer, and is a member of the ALK Positive. Medical Committee. MATM received consulting fees from Summation Bio Inc., Black Diamond Therapeutics, and Civetta Therapeutics, and reports pending patent applications (Epigenetics and protein production, and Sequences and gene therapy), participated on the Scientific Advisory Board of Summation Bio Inc. and participates on the Medical Committee and the Board of Directors of ALK Positive. The authors have no other conflicts of interest to declare.

Figures

Figure 1
Figure 1
Timeline illustrating milestones in the development and growth of ALK Positive. ALK, anaplastic lymphoma kinase.
Figure 2
Figure 2
Screen shot of ALK Positive Home Page www.alkpositive.org. ALK, anaplastic lymphoma kinase.
Figure 3
Figure 3
Structure of the ALK Positive. organization. ALK, anaplastic lymphoma kinase.
Figure 4
Figure 4
Flow chart of SOP process. SOP, Second Opinion Program.
Figure 5
Figure 5
Upper chart illustrates the % of total Library content, broken down by category. Lower chart illustrates the number of items of content in the library, broken down by year that the item was created.
Figure 6
Figure 6
Typical schedule of ALKtALK Education webinars and Healing Arts Program, improving QOL for ALK+ patients and care-partners. ALK, anaplastic lymphoma kinase; QOL, quality of life.
Figure 7
Figure 7
Timeline illustrating the growth of the annual ALK Summit. The 2020 and 2021 Summit were virtual due to the COVID-19 pandemic, with attendance growing to over 800 registrations. ALK, anaplastic lymphoma kinase.
Figure 8
Figure 8
Timeline illustrating the history of ALK Positive research grant awards, totaling almost $6,000,000 by end of 2022. RFA, request for applications; ALK, anaplastic lymphoma kinase; LCRF, Lung Cancer Research Foundation.
Figure 9
Figure 9
(A) Schematic illustrating the methods that the Research Acceleration Committee pursues to accelerate the development of improved ALK+ cancer treatments. (B) Schematic illustrating the four primary methods that the Clinical Trial Committee can employ to accelerate the success of a clinical trial that may include ALK+ cancer patients. ALK, anaplastic lymphoma kinase.
See this image and copyright information in PMC

References

    1. Shaw AT, Engelman JA. ALK in lung cancer: Past, present and future. J Clin Oncol 2013;31:1105-11. 10.1200/JCO.2012.44.5353 - DOI - PMC - PubMed
    1. Tsao AS, Scagliotti GV, Bunn PA, Jr, et al. Scientific Advances in Lung Cancer 2015. J Thorac Oncol 2016;11:613-38. 10.1016/j.jtho.2016.03.012 - DOI - PubMed
    1. Ross JS, Ali SM, Fasan O, et al. ALK Fusions in a Wide Variety of Tumor Types Respond to Anti-ALK Targeted Therapy. Oncologist 2017;22:1444-50. 10.1634/theoncologist.2016-0488 - DOI - PMC - PubMed
    1. Lin E, Li L, Guan Y, et al. Exon array profiling detects EML4-ALK fusion in breast, colorectal, and non-small cell lung cancers. Mol Cancer Res 2009;7:1466-76. 10.1158/1541-7786.MCR-08-0522 - DOI - PubMed
    1. Amin HM, Lai R. Pathobiology of ALK+ anaplastic large-cell lymphoma. Blood 2007;110:2259-67. 10.1182/blood-2007-04-060715 - DOI - PMC - PubMed