CML Horizons 2022 Hybrid Conference started off on 28th October. More than 100 participants from more than 40 countries attended the event live and virtually over the course of 3 days, to Learn, Share and Grow.
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CML 101: The first day of the 2022 HORIZONS meeting started off with a warm-up session on CML 101 by Jerry Clements, with an overview of everything you need to know in order to understand CML, including key CML terms, the history of the disease, what is CML and some important vocabulary to be aware of.
The session started with treatment resistance and updates on new data surrounding disease mutation testing. This area is better understood today than ever, and a lot can be done. The importance of treatment adherence was also highlighted, an area where every CML patient can have an element of control.
The presentation concluded with the ever-changing profile of CML as a disease. CML was considered an untreatable cancer up until the 20th Century. Now, it is considered a cancer that you can live with, with much research focused on lengthening life and improving life for people with CML. Click HERE to download PDF.
“We’ve come a long way in 20 years and we have a long way to go”
OPENING: Šarūnas Narbutas & Rod Padua followed with an introduction to the 2022 Horizons meeting, setting out the agenda and supporting plans over the next few days.
Advocacy #1 Best Practice Sharing
Chairs: Rod Padua & Jana Pelouchová
- DAR AL AMAL: Patient and Family Housing – Bahija Gouimi – Video – PDF
- SEBAS: Solution and Evidence of Access Barriers in Health – Yolima Méndez – Video – PDF
- Virtual Counselling Centre – Milica Kuzmanovska – Video – PDF
- Ukraine Response – Cornelia Borowczak & Jelena Čugurović – Video – PDF
DAR AL AMAL: Patient and Family Housing We learned about the wonderful work of Bahija Goumi and the building of DAR AL AMAL – the House of Hope – a hospital hotel for patients and families in Marrakech. Dar al AMAL is now fully functioning and can house up to 30 patients and caregivers at a time.
The House of Hope is based on an idea from the Lundt University Hospital in Sweden; patient hotels are common in Finland, Sweden and Norway, where national insurance covers the patients’ stay, and the hotels are designed for people who need a hospital, but not necessarily a hospital bed.
The project started with a small sum of 200 euros, and through tireless fundraising and networking raised the amount needed for the build, equipment and ongoing management of the project through private partners and local NGOs. To date, the House of Hope has helped 300 people and next steps include securing a sponsor to help with future running costs.
“Never give up. Continue your dreams, continue to advocate, find partners, challenge partners, find other partners to achieve your goals”
SEBAS: Solution and Evidence of Access Barriers in Health Further inspiration was gained from the great results in Columbia seen with the SEBAS app, a patient needs reporting solution that helps identify and address barriers to treatment.
To date, SEBAS has helped resolve over 200 barriers to treatment, usually within the relatively short time frame of 5 working days. The people they have helped are predominantly women (65%) and mostly from the region of Bogota, Medillin. The app has helped identify that the main barriers faced by patients are delays in access to medication, delays in authorisation of medical services, delay to accessing chemotherapy and delay in securing appointments with hematology specialists. In people with CML, access barriers include delays in getting medication and access to PCR tests.
The SEBAS app has helped solve 84% of these identified cases in a maximum of 5 working days, using Twitter to publish live concerns and putting pressure on service providers to find a solution. The team behind SEBAS are awaiting further data before creating a blueprint for other countries to follow.
Virtual Counselling Centre Milica from CMLAN member HEMA in Macedonia then introduced us to the innovative Virtual Counselling Centre offered in their region, offering patients in Macedonia virtual therapy sessions, nutritional advice and yoga sessions dedicated especially for people with hematological cancers.
The virtual counselling platform allows people to speak with a counsellor via live chat/video chat or phone call. This platform is the first of its kind in Macedonia for patients with hematological diseases and their caregivers and is currently only available in the Macedonian language.
Ukraine Response The morning session culminated with an inspirational story of a united response to support CML patients in Ukraine after the outbreak of war. Advocates Cornelia Borowczak, Jelena Čugurović & Lidija Pecova reported on how they addressed the lack of medication with an innovative donation plan.
The effort focused on two key areas – those CML patients leaving the Ukraine and those staying in the Ukraine needing access to ongoing treatment.
For those people leaving the war-affected regions, the local CML Advocates shared their phone numbers on social media in order to provide live support through text and phone calls, predominantly using apps such as WhatsApp or Viber. They were inundated with calls for help and all advocates individually responded with every patient that contacted them, giving information on how to find help and local contacts in the host country, and information on local CML organisations there.
For those people remaining in the Ukraine or in refuge centers within the border, the lack of medication was addressed by an extraordinary social media campaign, calling for spare supplies of medication to be sent by post within one region, in order to then be distributed by a network of volunteers. In total, 420 daily doses of imatinib, 78 daily doses of nilotinib, all supported by a letter from a local hematologist identifying the medication as donated medicines, were distributed, enabled by a series of volunteer professional drivers. A truly inspirational story of local advocacy and collaboration.
“Sometimes extraordinary circumstances require extraordinary measures!”
Medical #1 New Treatment Strategy
Chairs: Lisa Machado & Jerry Clements
- Specific inhibition of BCR: ABL1 first line – advantage for tolerability
Speaker: Prof. Andreas Hochhaus – Video – PDF
- New Drugs & Combination treatment
- Speaker: Prof. Jane Apperley – Video – PDF
- Is asciminib a major step forward in the treatment of CML
Debate: Yes: Prof. Andreas Hochhaus – Video – PDF and No: Prof. Jane Apperley- Video
The afternoon sessions kicked off with a brilliant scientific talk on CML treatment strategies and new available agents from Prof. Andreas Hochhaus and Prof. Jane Apperley.
The medical session was followed by a steering committee update from chairman Dennis Costello – welcome new steering committee members Jerry Clements and Jelena Čugurović!
And to finish off, attendees participated in the CMLAN resource market-place – 5 live talks on new resources launched by the network for advocates, including presentations on the new ELN platform and CMLAN website, the launch of the ‘Know your CML’ app, the CML Life website, World CML Day activities and a CAB Update.
Medical #2 Treatment Free Remission (TFR)
Chair: Nigel Deekes & Eunice Orekha
- Latest Update on Attempting TFR for the second time
Speaker: Prof. François-Xavier Mahon – Video – PDF
- TFR in LMICs: Is it really feasible?
Speaker: Prof. Asmaa Quessar – Video – PDF
- Is TFR the Cure?
Debate: Yes: Giora Sharf – PDF – or No: Jan Geissler – PDF – Video
The second day of the 20th CMLAN Horizons meeting got straight to business, starting with a very timely medical session on the topic of treatment-free remission.
Prof. François-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 Prof. Asmaa 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 into regions for some important re-grouping and conversations at a local level.
Medical #3 Challenges in CML
Chair: Šarūnas Narbutas & Bahija Gouimi
- Pregnancy & Fertility in CML while using TKIs & What’s new with pregnancy and CML management
Speakers: Eunice Orekha patient story followed by Prof. Jane Apperley – Video – PDF
- Resistance – disease progression on TKIs
Speakers: Michal Paz Rosin patient story followed by Prof. Andreas Hochhaus – Video – PDF
- Severe side effects while Living with TKI
Speakers: Bert Spangemacher patient story followed by Prof. François-Xavier Mahon – Video – PDF
The afternoon sessions began with the next medical session focusing 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 & What’s new with pregnancy and CML management Eunice Orekha shared her powerful patient story of experience of being diagnosed with CML during pregnancy, highlighting the importance of understanding the specific challenges of CML and family planning, but also the specific needs of different demographics when it comes to being able to have a family with CML.
What’s new with pregnancy and CML management This session by Prof. Jane Apperley provided a comprehensive overview on the data available so far surrounding fertility, pregnancy and giving birth with CML. Prof. Apperley outlined the available evidence and how decisions around pursuing a pregnancy while on treatment with CML are made, what considerations are taken and what additional options are available to patients.
Resistance – disease progression on TKIs Michal Paz Rosin shared her moving story of treatment resistance and disease progression while receiving treatment with TKIs. This session was followed by Prof. Andreas Hochhaus leading a discussion on the current understanding of treatment resistance and why it might occur in some patients.
Severe side effects while Living with TKI Bert Spangemacher joined the meeting virtually to share his empowering story of living with severe side effects while receiving treatment with TKIs, and Prof. François-Xavier Mahon followed up with supporting data of current understanding of these side effects.
Advocacy session #4 Access to treatment
Patient involvement in access decisions
- Max Family Malaysia involvement in local Access – Abd Razak Muhamad – Video –
- Iclusig access in Serbia -role of advocates – Jelena Čugurović – Video – PDF
- Touched by Max – Advocacy involvement of cutting through red tape – Rod Padua – Video – PDF
- Open floor discussions
Group 2: Patients formally involved in access decisions (e.g., HTA) – How can we advocate for access to new therapies?
Moderator: Prof. Zack Pemberton-Whiteley – Video –
- Best Practice in HTA process presentations from advocates
Speakers: Lisa Machado & Jana Pelouchová – PDF –
- Panel discussion
Speakers: Prof. Zack Pemberton-Whiteley, Lisa Machado, Jana Pelouchová, Prof. Jane Apperley, Michaela Dinboeck
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 focused on how patients can formally be involved in access decisions and advocating for access for new therapies. Prof. Zack Pemberton-Whitely hosted the session with presentations from Lisa Machado and Jana Pelouchová outlining best practice in the HTA process.
Advocacy #5 Evidence and data
Chairs: Zack Pemberton-Whiteley and Jan Geissler
- Example 1: WECAN – Ananda Plate
- Example 2: By the patient, for the patient
- Panel discussion:
Speakers: Prof. Zack Pemberton-Whiteley, Jan Geissler, Ananda Plate, Viji Venkatesh
The final day of the CML Horizons 2022 meeting kicked off with a session chaired by Prof. Zack Pemberton-Whitely, introducing the important concept of evidence-based advocacy and how regional groups can build an evidence base for their advocacy activities.
This session included some great examples of evidence-based advocacy worldwide, with a remote presentation from Ananda Plate on the excellent work of WECAN, followed by a presentation by Viji Venkatesh on how evidence was used to promote adherence and improve compliance in the Asia and Pacific regions.
The topic of when, why and. most importantly, how to generate an evidence base for advocating led to a very fruitful discussion, with all delegates being assigned an evidence-based advocacy task to test out in their regions.
Our host, Bahija Gouimi, wrapped up the morning session with an award presentation on behalf of the CML foundation – huge congratulations go to Giora Sharf, Jan Geissler, Pat Garcia-Gonzalez and Prof. Asmaa Quessar for your past, present and ongoing contributions to the CML community! And a special thanks and acknowledgement to Lidija Pecova for all her hard work in supporting the CML Network and the Horizons event.
Giora Sharf closed the final CML Horizons 2022 session with a warm thanks to all attendees, both present and virtual, for their participation. A final tribute was paid in the form of dance to the wonderful host of this year’s CML Horizons, Bahija. It was a truly wonderful event and everyone involved showed their ongoing passion and commitment to the CML community, in a magical setting with some truly inspirational stories.
THANK YOU TO ALL WHO PARTICIPATED IN CML HORIZONS 2022 – SEE YOU NEXT YEAR!
The CML Steering Committee 2022
This year’s HORIZON programme was governed by a global steering committee consisting of CML patient advocates from North America, Latin America, Asia and Pacific, Western Europe, Central and Eastern Europe & West Asia, Middle East and Africa. With Project Management led by Giora Sharf & Lidija Pecova. Thank you so much to all of you for your ongoing fantastic work leading to a very successful CML Horizons 2022!
- Giora Sharf, Co-founder of the CML Advocates Network – Director of Flute of Light, Israel
- Jan Geissler Co-founder of the CML Advocates NetworkChair of LeukaNET, Germany
- Jana Pelouchová Co-founder of the CML Advocates Network – President of Diagnoza Leukemie, Czech Republic
- Rod Padua, Chair of the CML Advocates Network President of Touched by Max, Philippines.
Region Asia-Pacific representative.
- Jelena Cugurovic, CML Association of Serbia, Serbia.
Region Central and Eastern Europe & West Asia representative
- Gerald Raymond Clements, CML Buster Foundation, USA
Region North America
- Felipe Tapia, Vice-president of Maxi Vida Association, Chile
Region Latin America representative
- Eunice Orekha, President of Max Care Foundation, Nigeria
Region Middle East & Africa representative
- Zack Pemberton-Whiteley, CEO of Leukaemia Care, United Kingdom
Region Western Europe Representative
We would like to thank the following organisations for providing unconditional educational funding. Without their support, this conference would not be possible:
- Novartis Oncology (Initiating Platinum Sponsor)
- Bristol-Myers Squibb (Gold Sponsor)
- Pfizer Oncology (Gold Sponsor)
- Incyte (Gold Sponsor)
- Takeda (Bronze Sponsor)
- The Leukemia & Lymphoma Society (Bronze Sponsor)