Deaar members and friends of CML Advocates Network,
The second day of the 20th CML Horizons meeting started with a very timely medical session on the topic of treatment free remission. Chairs Nigel Deekes & Eunice Orekha hosted while Francois-Xavier Mahon presented an update of the current data available on attempting TFR for the second time. This was followed by a review of the possibility of use of TFR in LMICs by Professor Asmma Quessar, outlining the key challenges in these regions, particularly with regards to PCR testing and the benefits to be gained by overcoming them. The session culminated with a deeper discussion, personal experiences of TRF and debate between Giora Sharf and Jan Geissler, trying to address the question of “Is TFR the Cure?”. While the term ‘cure’ is still under debate, there is no question that TRF is welcomed by many.
The morning culminated with the group splitting of into regions for some important re-grouping and conversations at a local level – all groups will present their findings from these sessions on Day 3, so look out for local updates in the next Highlights.
After the annual group photo, the afternoon sessions began with the next medical session focussing on current challenges in CML, with chairs Šarūnas Narbutas & Bahija Gouimi hosting speakers from both the patient and medical perspective on topics including:
- Pregnancy & Fertility in CML while using TKIs – Eunice Orekha shared her powerful patient story of experience of being diagnosed with CML during pregnancy, followed by a very informative session by Jane Apperley on the data available so far surrounding fertility, pregnancy and giving birth with CML.
- Michal Paz Rosin shared her moving story of treatment resistance and disease progression while receiving treatment with TKIs, followed by a session by Andreas Hochhaus on the current understanding of treatment resistance and why it might occur in some pagients.
- Bert Spangemacher joined the meeting virtually to share his empowering story of living with severe side effects while receiving treatment with TKIs, and Francois-Xavier Mahon followed up with supporting data of current understanding of these side effects.
The second day wrapped up with two parallel sessions covering the key topic of access to treatment from dual perspectives: the first session highlighted successful advocacy stories of patient advocacy involvement in enabling access with existing TKIs in LIMCs. Hosted by Pat Garcia-Gonzales from the MAX Foundation, we heard some wonderful examples and empowering stories of how both MAX and local advocates have successfully enabled access in regions such as Malaysia, Serbia and the Philippines. The second group focussed on how patients can formally be involved in access decisions and advocating for access for new therapies. Zack Pemberton-Whitely hosted the session with presentations from Lisa Machado and Jana Pelouchova outlining best practice in the HTA process.
Enjoy last day of CML Horizons Hybrid COnference