ICAN®—International Cancer Advocacy Network
Arizona Biomarkers Testing Bill Signed by Governor Ducey —ICAN leader Cathy Dalzell testifies/remarks at Signing Ceremony
Image from Instagram dougducey
Cathy Dalzell, a cancer survivor, joined the signing ceremony to share her experience with biomarker testing.
"Biomarker testing for cancer patients is compassionate and common sense legislation, requiring insurance providers to cover testing, will allow doctors to understand the genetic composition of a patient's disease, so targeted treatment plans can be developed resulting in better health outcomes and better quality of life," said Dalzell, who also serves as chairwoman of the Leadership Council for the International Cancer Advocacy Network.
—Office of the Governor Doug Ducey
ICAN® is a 501(c)(3) patient advocacy and
research advocacy organization with a small staff of professional advocates assisted by hundreds
volunteers worldwide. With our volunteer leadership representing
17 different time zones, we literally work around the clock,
focusing on our Personalized Medicine Cancer Case Navigation
Programs, health information technology issues, legislative
initiatives, and research projects.
We aim to provide you with the best patient advocates and the most effective cancer patient advocacy possible, with the twin goals of working to extend your life with
the highest quality of life.
ICAN® advocates for you – the patient – or for the patient's spouse or family member who wants to manage the details of their loved one's cancer case with us.
We are beholden to no one – no oncology practice,
no medical center, no clinical trial, and no biotech or
Your case is unique and in our many years of
non-stop advocacy services, we've never seen two patient cases
ICAN® empowers you to navigate rapidly-expanding
diagnostic and personalized treatment options. This information will assist you in informed discussions with
family and providers.
We never, ever, compromise patient privacy (zealous implementers of HIPAA) – We will not disclose your name or any identifying information, or exploit your case for fundraising purposes.
ICAN is very grateful to Quint Studer for recognizing our patient services—and how we view patients—in his column that reaches tens of thousands of readers: Read Quint's article here.
A New International Research Consortium to Battle Two Rare Cancer Mutations
In April 2016, Kevin Hanlon, an entrepreneur from Syracuse, New York, was diagnosed with an EGFR exon 20 insertion-mutated lung cancer. There are two types of exon 20 insertions, the other is a HER2 insertion. Both are rare gene mutations diagnosed in two percent of non-small cell lung cancer patients. Exon 20 insertions have also been found in 24 other cancers so far. Many of the patients diagnosed with these mutations are, like Hanlon, never-smokers in excellent shape....
— Marcia K. Horn JD, ICAN President and CEO and Exon 20 Group Executive Director
Published in The Future of Health (USA Today Mediaplanet digital supplement on Lung Health). Read the article
Watch a short video clip from Ellrose Hanlon, daughter of Exon 20 Group Co-Founder of cherished memory, Kevin Hanlon
"DART" Clinical Trial—first federally funded NCI dual immunotherapy trial
Is your tumor PD-L1 amplified by next generation sequencing (NGS)?
PDL1 amplification (also known as CD274 amplification) is found in next generation sequencing reports. It differs from PDL1 immunohistochemistry. While PDL1 (also known as CD274) amplification is rare (found in less than 1 in 100 patients with solid tumors), it has been reported to be associated with responsiveness to immunotherapy. The DART trial (NCT02834013), which gives nivolumab to patients with PDL1 amplification is open for accrual.
We don't mean PD-L1 over-expressing by IHC (immunohistochemistry). We mean PD-L1 amplification which is found by NGS in one out of 150 cancer patients.
- About Next Generation Sequencing (NGS)—Illumina
- Biomarker Testing—an important first step in diagnosis of mNSCLC—Genentech
Please share the following two journal articles with your oncologist:
- Roemer MG, Advani RH, Ligon AH, Natkunam Y, Redd RA, Homer H, Connelly CF, Sun HH, Daadi SE, Freeman GJ, Armand P, Chapuy B, de Jong D, Hoppe RT, Neuberg DS, Rodig SJ, Shipp MA. PD-L1 and PD-L2 Genetic Alterations Define Classical Hodgkin Lymphoma and Predict Outcome. J Clin Oncol. 2016 Aug 10;34(23):2690-7. doi: 10.1200/JCO.2016.66.4482. Epub 2016 Apr 11. PMID: 27069084; PMCID: PMC5019753.
- Goodman AM, Piccioni D, Kato S, Boichard A, Wang HY, Frampton G, Lippman SM, Connelly C, Fabrizio D, Miller V, Sicklick JK, Kurzrock R. Prevalence of PDL1 Amplification and Preliminary Response to Immune Checkpoint Blockade in Solid Tumors. JAMA Oncol. 2018 Sep 1;4(9):1237-1244. doi: 10.1001/jamaoncol.2018.1701. PMID: 29902298; PMCID: PMC6139049.
Do you have a Gestational Trophoblastic Disease (GTD)?
Have you been diagnosed with SCCOHT which is Small Cell Carcinoma of the Ovary--hypercalcemic type?
If you have any of the above cancers, please talk to your oncologist about the open cohorts in the clinical trial of Nivolumab and Ipilimumab in Rare Tumors (the "DART" trial, the first federally funded NCI dual immunotherapy trial).
Many hundreds of trial sites will have openings in each of these three cohorts. Questions? Please us know:
Join the growing community of PD-L1 Amplifieds! ThePDL1Amplifieds@askican.org
Know Your Precise Cancer Diagnosis
If your oncologist cannot tell you what molecular subtype of cancer you have, then you may not have a specific diagnosis yet. And your surgical or biopsy tissue might not have been adequately profiled if your physician did not order comprehensive biomarker testing. Here's a pie chart, created by the brilliant Jacqulyne ("Jackie") Robichaux, PhD, member of the John V. Heymach, MD, PhD Laboratory and Assistant Professor at The University of Texas MD Anderson Cancer Center, which reveals the molecular subtypes of Non-Small Cell Lung Cancer. If you know your particular molecular subtype, treatment decisions will likely be more targeted. If comprehensive biomarker testing does not reveal a specific molecular subtype, then that's also important information for you and your oncologist to have.Expand Chart InfoGraphic or select (PPTX) (Text Only) (JPG)
ASCO 2021 - Visual Data
A visual exploration of data presented at ASCO 2021 Virtual Meeting—LARVOL VERI
Visit ICAN's special advocacy initiative and global coalition of 1000+ patients, care partners, oncologists, molecular profiling labs, and industry partners:
Working toward turning the rare diagnoses EGFR exon 20 insertions and HER2 exon 20 insertions—each found in 25 separate cancers—into chronic and maintenance diseases.
Federal Tax I.D.: EIN 86-0818253