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THE PROMISE OF PERSONALIZED MEDICINE

Webinar Report: The Promise of Personalized Medicine

Introduction:
The WPA in collaboration with From Testing to Targeted Treatments (FT3), organized a webinar titled “The Promise of Personalized Medicine" held on Jan 29, 2025. The event aimed to explore the advancements, challenges, and future of personalized medicine while advocating for equitable access to these innovative treatments worldwide.

The webinar was made accessible through AI-powered simultaneous translation in over 60 languages.

Welcome and Opening Remarks:
The webinar commenced with a welcome address by Hussain Jafri, CEO of the World Patients Alliance. He emphasized the paradigm shift personalized medicine represents in healthcare, moving from a “one-size-fits-all" approach to treatments tailored to individual genetic, environmental, and lifestyle factors. He outlined the key objectives of the webinar and introduced the speakers and panellists.

Key Objectives of the Webinar:
1. Sharing knowledge about the fundamentals of personalized medicine and its potential to improve patient outcomes.
2. Empowering advocacy efforts by highlighting the crucial role of patient organizations in expanding access to personalized medicine.
3. Inspiring action by providing practical tools and case examples to influence healthcare policies and clinical practices.

Speakers and Panelists The webinar featured a distinguished panel of experts, patient advocates, and healthcare professionals, including:
• Dr. Marius Geanta (President and Co-Founder Centre for Innovation in Medicine)
• Bahija Gouimi (President and Founder A.M.A.L Association, Morocco)
• Runcie C.W. Chidebe (Executive Director, Project Pink Blue, Nigeria)
• Helena Harnik (Executive Director, From Testing to Targeted Treatments FT3)
• Andrew Spiegel (Chief Executive Officer, Global Colon Cancer Association)

Key Discussions and Presentations

Introduction to Personalized Medicine
Dr. Marius Geanta provided an insightful presentation on the evolution of personalized medicine, its impact on patient care, and the role of technological advancements in tailoring treatment strategies. He highlighted the increasing role of biomarkers, targeted therapies, and AI-driven diagnostics in improving disease detection and treatment efficacy.

Patient Advocacy and Access to Personalized Medicine:

Bahija Gouimi shared her personal journey of being diagnosed with Chronic Myeloid Leukemia (CML) and her advocacy efforts in Morocco. She emphasized the importance of patient organizations in ensuring access to targeted therapies, particularly in low-resource settings.

Runcie C.W. Chidebe discussed the state of precision medicine in Nigeria and broader Africa. He elaborated on the challenges such as limited healthcare infrastructure, lack of awareness, and financial constraints. His organization, Project Pink Blue, has been instrumental in raising awareness and educating patients on personalized treatments.

Panel Discussion: Building a Global Community of Practice

Hussain Jafri introduced Helena Harnick, who provided an overview of FT3, a nonprofit advancing personalized healthcare. She highlighted FT3’s collaboration with patient communities, healthcare professionals, and companies to address challenges in precision medicine through education and policy advocacy. Grateful for the opportunity to co-host the webinar with WPA, she encouraged active participation.

Andrew Spiegel shared his personal and professional journey in patient advocacy, shaped by the loss of both parents to cancer and his wife’s battle with stage IV lung cancer. As the co-founder of the first U.S. colon cancer patient organization and the leader of the Global Colon Cancer Association, he emphasized the vital role of personalized medicine in improving patient outcomes. His keynote address spotlighted the Know Your Biomarker initiative, launched in 2020 to educate patients and healthcare providers on the importance of biomarker testing. Andrew recounted how his wife was initially misdiagnosed with COVID-19, but biomarker testing later revealed a ROS1 mutation, enabling her to receive targeted therapy that extended her life. Through his advocacy, Andrew underscored the transformative potential of biomarker-driven treatments and the urgent need for universal access to such testing.

Panel Discussion and Q&A
The panel discussion, moderated by Helena Harnick, explored strategies for overcoming barriers to personalized medicine. Topics included:
• Enhancing patient education and engagement.
• Strengthening global and local collaborations.
• Addressing disparities in access to biomarker testing and targeted therapies.

Key Takeaways and Recommendations
1. Education and Awareness: Patients and caregivers must be equipped with knowledge about personalized medicine to advocate for appropriate treatment options.
2. Policy Advocacy: Government policies must support equitable access to biomarker testing and targeted therapies.
3. Collaboration: Stronger partnerships between patient organizations, healthcare providers, researchers, and policymakers are essential for advancing personalized medicine.
4. Sustainability and Funding: Efforts should be made to secure funding for research, infrastructure, and patient support programs in resource-limited settings.

Conclusion The webinar successfully highlighted the potential of personalized medicine to transform patient care. However, ensuring equitable access remains a significant challenge. WPA and FT3 remain committed to advocating for patient rights and expanding the reach of personalized healthcare solutions globally.

For further information or to access webinar materials, please visit:
https://www.youtube.com/watch?v=BrIFXtZEdZc

Agenda

Speaker & Panelist

Bahija Gouimi
In 2002, Bahija Gouimi was diagnosed with chronic myeloid leukemia while pregnant, confronting limited treatment options and widespread stigma in Morocco. This experience inspired her to establish the AMAL Association, the first of its kind in Morocco and North Africa, to support cancer patients and their families. AMAL focuses on providing resources, raising awareness, combating stigma, and improving access to care. She also founded Dar Al Amal, a facility offering accommodation and support for patients undergoing treatment in Marrakech. Her personal journey continues to drive AMAL’s mission to ensure no cancer patient faces their battle alone. She also serves on the Board of the From Testing to Targeted Treatments Program.
Marius Geanta
Marius Geantă is the President and Co-Founder of the Center for Innovation in Medicine, a Bucharest-based NGO. The aim of the Center for Innovation in Medicine is to shorten the time between the emergence of innovations in the medical sector and their application so that they can benefit patients both in Romania and elsewhere. A pioneer in personalized medicine in Romania and Central Eastern Europe, he contributes as Board and/or Chair of pan-European initiatives such as FH Europe, ICPerMed, European Cancer Organisation, DigiTwins, PECAN.
Hussain Jafri
Hussain Jafri is the CEO of World Patients Alliance. He is also the Secretary General of Alzheimer’s Pakistan, the national association of Alzheimer’s disease and related dementias that Hussain founded in 1999 as a result of his experiences as a care giver for his grandfather with Alzheimer’s Disease. He has been very active in the field of patient safety and has remined the Vice Chair of Advisory Group of WHO’s Patients for Patients Safety Program (PFPS). Hussain has also founded Pakistan Patient Safety Initiative and has been working towards several patient safety initiatives. The Government of the Punjab has also nominated him the Provincial Focal Person on Patients Safety & Quality and given the responsibility of developing patients safety and quality services in the health sector of the Punjab province. He has remarkable experience of working as a volunteer in the social sector and has had an opportunity of working with government, national and international non-profit organizations. Hussain is also a member of the Person and Family Centred Advisory Council (PFCAC) of International Society for Quality in Health Care (ISQua). Moreover, he is also a taskforce member of Global Alliance of Partners for Pain Advocacy (GAPPA). He is an experienced speaker and a resource person and has been presenting nationally and internationally on different issues like patient safety, patients centred healthcare, care giving, advocacy, partnership in health, organizational development, etc. Hussain is a PhD from University of Leeds, UK on prevention of genetic disorders. He also headed Punjab Thalassemia & Other Genetic Disorders Prevention & Research Institute as Director General and has published several publications in international indexed journals.
Runcie Chidebe
Runcie C.W. Chidebe is a patient advocate, global health consultant, psychologist, and executive director of Project PINK BLUE, dedicated to making cancer control a national priority in Nigeria. He has pioneered patient navigation and cancer support initiatives, supported women battling cancer, trained oncology professionals, and raised funds for indigent patients. He serves on global boards, including the From Testing to Targeted Treatment Program, World Ovarian Cancer Coalition and UICC World Cancer Day Advisory Group, and is part of the iCCaRE for Black Men Consortium funded by the U.S. Department of Defense. Runcie’s advocacy has earned him numerous global accolades, including the Nelson Mandela-Graca Machel Innovation Award and recognition as one of the 40 Under 40 in Cancer globally.
Andrew Spiegel
Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance, now the leading US based national patient advocacy organization dedicated to colon cancer. Mr. Spiegel, an attorney, besides being a co-founder of the organization and longtime board member of the Alliance became CEO in January of 2008 and he ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA). Currently, Spiegel is co-founder and executive director of the GCCA, an international patient advocacy organization. This organization is an international community of nearly 50 colon cancer patient advocacy organizations and stakeholders dedicated to end the worldwide suffering of the 3rd leading cause of cancer deaths. In addition to his work in the colon cancer community, Spiegelis an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy. Spiegel is a 1986 graduate of Temple University in Philadelphia where he earned a Bachelor’s degree in Political Science with minors in English and Philosophy. He is a 1989 graduate of the Widener University School of Law. After working for a Philadelphia litigation firm, Spiegel opened his own law firm in 1995.
Helena Harnik
Helena Harnik is the Executive Director of the From Testing to Targeted Treatments (FT3) program, a not-for-profit global collaborative initiative that aims to improve patient access to precision medicine when it would benefit them. Co-led by patients, FT3 focuses on enhancing outcomes and experiences for patients while addressing the systemic challenges of equitable access to targeted treatments. As a co-founder of The Synergist, Helena also brings over a decade of experience in collaborative leadership, driving impactful collective action on pressing societal challenges such as patient engagement, equitable access to personalized healthcare, and sustainable health and well-being. The Synergist serves as a backbone organization, enabling cross-sector collaboration among patient groups, civil society, companies, academic institutions, and public health authorities globally.

Date

Jan 29 2025
Expired!

Time

All Day
Category

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