March 2022 - This year, the iCMLf Directors and Advisors have selected two powerful voices for patients with CML as recipients for the iCMLf Prize. Giora Sharf (Israel) and Jan Geissler (Germany) have used the experience of their own diagnosis to help other patients. They have tirelessly advocated for the needs of patients with CML across the world over the past decades. The iCMLf Prize recognizes outstanding contributions to the improvement of CML treatment in low- and middle-income countries. As giants in patient advocacy around the world, Jan and Giora are worthy recipients of this award.

Giora and Jan are both co-founders of the global CML Advocates Network – an active global network connecting 128 patient organizations in 93 countries on all continents aiming to facilitate and support best practice sharing among CML patient advocates all across the world. The annual ‘CML Horizons’ conferences have contributed significantly to sharing knowledge, medical updates and advocacy training. These have also become a unique networking opportunity supporting new and existing CML patient groups.

Both Jan and Giora have worked hard to integrate patient advocates into valuable partners in medical research. They represent the patient’s perspective on CML on various industry advisory boards and are highly regarded speakers at scientific conferences. An important part of their work is gathering patient evidence from the global CML community. The CML Patient Advocates Network conducted a global adherence survey and their global patient-based evidence study on treatment free remission had more than 1,000 participants from 69 countries.

Giora Sharf

‘I feel that my personal story reflects on the revolution that CML has gone through in the last 20 years. I was diagnosed with CML in March 2000. Through the Internet, I found out about the opening of the IRIS clinical trial and joined it in July 2000. I was randomized to interferon-alpha and took it for seven months. I was then switched to imatinib, which I took daily for 13 years and reached MR5. In June 2014, I stopped treatment and am monitored by PCR tests, which show that I am still in high molecular response. Let’s hope we can all reach a cure!’ (Giora Sharf)

Giora Sharf decided to use his experience to help other CML patients by founding the Israeli CML Patients’ Organization in April 2001. Starting with seven local patients in a small hospital basement, his organization has since then grown to support more than 500 patients from all around the country. In 2014, Giora founded a new Israelian Blood Cancer Patients’ Organization named ‘Flute of Light’ for patients with leukemia, lymphoma and other blood cancers in Israel.

He is one of the co-founders of the Leukemia Patient Advocates Foundation that hosts the CML Advocates Network, the Acute Leukemia Advocates Network (ALAN), the CLL Advocates Network, the MPN Advocates Network and the CML Horizons meeting. Giora Sharf is also involved in the Steering Committees of the CML Advocates Network and the MPN Advocates Network.

Jan Geissler

'I was diagnosed with CML in 2001 at the age of 28 and joined a Phase I/II clinical trial combining imatinib with Peg-Interferon. I have been in stable molecular remission for some years before I stopped Imatinib in 2006 and Peg-Interferon in 2014. I was lucky to remain in Therapy-Free Remission since then. I have been engaged in patient advocacy since 2002. Outside of CML advocacy, I have mainly focused on capacity building of patient organisations, influencing EU health policy, and driving patient engagement in medicines research and development.' (Jan Geissler)

Jan Geissler is founder and managing director of Patvocates, a think-tank, consultancy and social enterprise on patient advocacy and patient engagement in research. From 2012-2017, he has been working for the European Patients' Forum as the Director of the European Patients Academy (EUPATI). He is also currently co-leading the work package on stakeholder input from patient organizations, HTA bodies, regulators and other stakeholders in the IMI-funded EU-projects HARMONY and HARMONY-PLUS.

In 2002, Jan founded the online patient community Leukaemie-Online.de that is one of the most frequented online communities for leukemia patients in German language. He co-founded the CML Advocates Network, the Acute Leukemia Advocates Network (ALAN), the European Cancer Patient Coalition and the Workgroup of European Cancer Patient Advocacy Networks (WECAN).

Jan is a member of the iCMLf Scientific Advisory Board and serves as patients' representative in various steering committees and advisory boards, e.g. European Cancer Organisation (ECO), European Hematology Association (EHA), EuroBloodNet, German National Decade Against Cancer and Patient Focused Medicines Development (PFMD). Jan is an active member of the Ethics Committee of the Bavarian Chamber of Physicians. He also acts as an independent expert in committees and panels of the European Commission. He is author and co-author of more than 40 articles in peer reviewed journals and also acts as Editorial Board member of scientific journals. In 2016, he was awarded with the Order of Merit of the Federal Republic of Germany for his work as a patient advocate.