Interview with Patient Advocate Marcia Horn, CEO, ICAN Network
Madhushree Ghosh
Vice-President, Global Strategic Partnerships and Projects
Pharma Services, NeoGenomics Laboratories, Inc.
We at NeoGenomics Laboratories, Inc. are proud to work in oncology diagnostics, offering hundreds of clinical tests to help oncologists and medical groups improve and expedite medical intervention for oncology patients. During the pandemic, we realized that patients were hesitant to visit medical labs or doctors’ offices for fear of contracting other respiratory infections while managing their cancer diagnosis and treatment. As a premier oncology testing and clinical trials global company, we proactively worked on this challenge. We now offer mobile phlebotomy services to patients to ensure timely diagnosis and disease monitoring, especially during the pandemic.
Patient education, guidance and working with oncology groups to ensure the best treatment and information is our priority. Our medical affairs team of experienced pathologists and scientists regularly lead our live NeoGenomics Tumor Boards on lung, breast and GI cancer patient cases with expert oncologists. We also work closely with patient advocacy groups, actively participating in harmonization studies, Blood-PAC or biomarker groups from these advocacy organizations that need reference/clinical testing and pharma services’ expertise. Our very own Anna Junker-Jenssen, Eve Shinbrot and I serve on the ICAN® Biomarkers Council advisory board.
ICAN® or the International Cancer Advocacy Network is a premier group of patient advocates, industry and medical leadership representing over 17 different time zones while focusing on personal patient care decision journeys. ICAN’s Personalized Medicine Cancer Case Navigation Programs, health information technology issues, legislative initiatives, and research projects help drive change within patient care and long term patient outcomes.
I’ve been fortunate to know Marcia Horn for many years—she’s a tireless patient advocate who works passionately with cancer patients helping them on their journey. Besides ICAN®, Marcia serves as the Executive Director of the Exon 20 Group –a special ICAN initiative—an international multi-stakeholder coalition created to transform cancers caused by rare and lethal insertion mutations into manageable and survivable conditions. Founded in 2017, the Exon 20 Group has become a widely respected global working group and multi-stakeholder coalition (54 countries) comprised of patients, care partners, families, thoracic/medical oncologists, physician-scientists, cancer biologists, and molecular pathologists in addition to pharmaceutical companies, biotech companies, and molecular profiling laboratories. The Exon 20 Group works with patients and families to provide one-on-one direct patient navigation, molecular profiling matching services, clinical trial matching services, and expanded access matching services.
The Exon 20 Group recently initiated Project Africa and Project Middle East to work toward bringing molecular profiling, clinical trials and expanded access drugs to underserved countries.
As part of our “Talking Cancer: Conversations” series, Marcia and I spoke on her advocacy, the Exon 20 Group and some of the key elements that could help guide patients during their cancer journey. As always, she was enthusiastic to talk about patients, advocacy and the Exon 20 Group initiative, rather than herself. Marcia is known as the ‘best kept secret in cancer treatment advocacy,’ and here is a flavor of the conversation we had recently.
Madhushree Ghosh: Tell us about the Exon 20 Group and what can diagnostics- and medical leaders learn from it in order to help patients?
Marcia Horn: The mandate of the Exon 20 Group, from our co-founders Kevin Hanlon and his brother Bob Hanlon, who passed away in July 2019, and Bob is straightforward: convert EGFR exon 20 insertions and HER2 exon 20 insertions into manageable diseases, always driving toward a cure.
EGFR exon 20 insertions and HER2 exon 20 insertions can each be found in 25 separate cancers, including non-small cell lung cancer (NSCLC). We are on the lookout for these insertions in cancers that no one would even suspect might be driven by such a rare insertion mutation. That’s why the work performed by labs such as NeoGenomics is critically important to optimizing patient survival and quality of life; and across cancer types, too.
Over the past four years, we've built the Exon 20 Group into a 1200-strong multi-stakeholder international advocacy organization and coalition of patients, care partners, physician-scientists, thoracic and medical oncologists, molecular pathologists, cancer biologists, leading molecular profiling labs as well as pharma and biotech members. NeoGenomics has been part of this organization, focusing on ensuring information reaches the appropriate medical and patient groups, and assist in Exon 20 -focused diagnostics within the organization, thank you for the support!
MG: What has the patient experience been like in general, and how do you guide their journey, as part of the Exon 20 family?
MH: When patients tell us that they get pushback from their oncologists, clearly not wanting to order molecular profiling, our Physicians Advisory Council chair Robert H. Tamis, MD said years ago, “that dismissive attitude and ignorance about the benefits of biomarker testing can be summed up as: “I know the cancer, I know the subtype, and I know the therapy.””
No one knows what insights a molecular profile report will yield until that report gets returned to the clinician. Daily, we are reviewing driver mutations and co-alterations with patients. We look forward to the day when there is a reimbursement code so that busy community oncologists will be able to take the time to go through these reports in detail and share the findings with their patients.
To counter the profiling-deniers and those who simply have not kept up with the era of personalized medicine, I ask the patient to inform the clinician that he/she should commit to writing that any molecular profiling “won’t find an exon 20 insertion mutation or a TRK fusion.” It really takes only one determined patient to turn a community practice around. Once that report comes back with unexpected and critical information, the deniers quickly turn into believers.
MG: Most patients are served in a community oncology practice where the doctors are generalists and not lung cancer or genetic-marker specific oncologists. But for those patients who go to medical groups/educational research oncologists with their genetic testing results, Exon 20 Group could help guide the information through the right channels, correct? Tell us about the Exon 20 group and who should be the perfect candidate you could help?
MH: We serve patients in 54 countries and provide a cumulative range of services including our Angel Buddy Program that offers peer-to-peer patient and care partner counseling support, 8 social media sites, direct patient navigation of the patient's case, molecular profiling matching services, clinical trial matching, and expanded access matching.
We are really pleased with the pharma partners we have who have stepped up with responsive international expanded access programs. In the near future, we hope to see that every company with a drug targeting exon 20 will initiate or accelerate access to their compound with an international expanded access program (EAP).
MG: How is the progress on your advocating for better diagnostics ex-US?
MH: To bring more molecular diagnostics, clinical trials, and expanded access to under-served countries (or under-served areas in those countries), we've launched Project ICAN Match-Africa, focusing on South Africa, Zimbabwe, Ethiopia, Nigeria, and Kenya to start. We also have Project ICAN Match-Mesopotamia, focusing on Iraq—Baghdad, Basra, and Sulaymaniyah to start.
Any patient or family member, molecular pathologist, oncologist, health ministry/regulatory affairs specialist from Africa, the Middle East, or anywhere in the world who wants to volunteer on these projects (no matter where they're located) should contact us, and we'll bring you onto the team.
What patients in some underserved countries have to go through to get even the most basic cancer care can be reprehensible. Many cancer patients throughout Iraq, for instance, take long bus rides to Baghdad and sleep on hospital floors hoping to get just basic single agent chemotherapy.
Long story short, we want to find every rare mutation that is actionable on a pan-tumor basis and to do that we need a concerted effort of in-kind donations of next-generation sequencing (NGS)equipment plus matching oncologists, pathologists, and pharmacists in these countries to responsive counterparts abroad.
MG: The Exon 20 Group has funded resistance mutation and other work at the John V. Heymach Laboratory at MD Anderson Cancer Center and has helped fund the development of a new exon 20 drug at the Broad Institute. How do you intend to reach out through your international research consortium on Exon 20?
MH: For years now, the Exon 20 Group has actively engaged with leading researchers in basic science and drug development for the benefit of exon 20 patients. Our new Exon 20 Research Consortium (Ex20-IRC) will bring together these researchers along with new participants from the broader research community for focused regular sessions to discuss new results, share ideas, and collaborate on the challenging set of scientific questions related to exon 20 insertion mutations.
We think that a multidisciplinary team of cancer biologists, chemists, physicists, computer scientists, molecular modelers, data scientists and others with common interests in the exon 20 problem will inspire new ideas, novel teaming, and creative solutions to this critical problem. A targeted condition map would be more successful than a broad-brush approach.
The mantra of our Ex20-IRC leadership is essentially: “Why don’t we have hundreds of drugs for exon 20 that work far longer and with less toxicity?”
By bringing together out-of-the-box thinkers, we are hopeful that we can usher in a new era of smarter, rational, faster, and more productive drug development. This project is designed to not only directly augment the exon 20 drug pipeline but to help all other rare mutation patient populations who are contending with drug pipelines which could and should be far more robust.
At NeoGenomics we are driving daily to improve patient care and Marcia’s mission at ICAN® Network continues to show how partnerships impact patient outcomes.
If you would like to learn more about our partnerships and patient engagement/advocacy work at NeoGenomics Pharma Services, please contact me at Madhushree.ghosh@neogenomics.com
Marcia Horn can be reached at marcia@askican.org and the Exon 20 Group is linked here. If you or someone you know has received a cancer diagnosis and would like more information on biomarker testing or clinical trial support, please reach out to NeoGenomics at 866.776.5907.
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