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

Read the news release

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 pharmaceutical company.

Your case is unique and in our many years of non-stop advocacy services, we've never seen two patient cases remotely alike.

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.

Breaking News!

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.

Please share the following two journal articles with your oncologist:

  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

Pie chart graphic showing the various percentages of gene mutations-alterations identified in NSCLC Metastatic Lung Cancer - see text only link for complete alt text

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

Avisual exploration of data presented at ASCO 2021 Virtual Meeting

A visual exploration of data presented at ASCO 2021 Virtual Meeting—LARVOL VERI

Watch the Video (mp4)


Guidestar Platinum Seal of Transparency 2021


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