CML Horizons 2019 (Lisbon) Portugal

Report by Param (Parmeswaran PS) Trustee – Friends of Max

CML Horizons started with CML CAB meeting on 16th May for reviewing the ongoing agenda of CML CAB Steering committee meeting review and minutes of actions from previous meetings. I rejoined after a sabbatical of more than a year due to official conflicts did not allow me to participate in last three CAB meetings held between 2017 and 2018.

CML Horizons began on 17th May 2019 and was till May 19th, 2019. The agenda followed the standard CML Horizons of having
• Medical Sessions – 4
• Advocacy Sessions – 4
This time the CML Horizons added the below topics
• CML 101 – Re-fresher and especially recommended for newcomers to CML Horizons by Pat Garcia Gonzalez (CEO The Max Foundation)
• Status and Evolution of CML AN – This covered the updates from the new steering committee and also the plans on how CML AN will take strategic initiatives for the future wherein focus will be in more Regional focus like emerging countries, AsiaPac, EMEA, LATAM with support from Developed Markets like USA and EU.

The medical sessions covered on topics like What is Goal of CML treatment, Monitoring, Diagnostics and Prognosis for CML, Treatment Free Remissions, Outlook of CML in 2023.
In order to increase the participation and also engage patient advocates in medical sessions this year in all the medical session, there was representation from Patient Advocate groups to bring a Reality check on the above topics.
The Advocacy sessions covered topics on improving access, Regional Session, Key initiative in CML Advocacy – Best practice session, and Living with CML.

I had an opportunity to chair the below medical session
• Monitoring, Diagnostics and Prognosis.
I was also in the Panel Discussions for the medical session on What is the Goal of CML treatment? Survival or best quality of Life. Here the Patient perspective was discussed at length and concluded that at time of diagnosis the focus in emerging markets is more on survival due to fear of disease and once the fear gets removed with best treatment quality of life comes priority

CML AN has taken an initiative to bring more focus toward Regional growth and support and in this regard, CML AN has introduced Project Grant. A defined criterion is laid out for getting the sponsorship. The projects is categorized as
• Regional Project – 40,000 USD
• Local Project – 5000 USD
Friends of Max can take lead to get a local and a regional project as the community here can plan to take up a project to support CML Community.

CML Horizons has given me an opportunity to get re-introduced to other supporting groups in APAC, EMEA, LATAM USA, Canada, Europe wherein we can leverage the tools and also leverage the footprint of FOM to build the CML Patient and community towards better access and improving quality of life