The CML Horizons Conference (Slovenia, 6-8 May 2016), hosted by the non-profit organization Leukemia Patient Advocates Foundation, is the main global conference for CML patient organizations and aims to
• Update CML patient advocates on developments in different aspects of disease management
• Helping particpants to develop skills to support their roles as advocates
• Review successful strategies that can be used by advocates to address common problems/issues
• Help to build patient group capacity
• Provide a forum for networking and exchange of best practices
The conference had two main tracks. One consisting of four CML specific medical sessions, and another consisting of five advocacy sessions focusing on the work of patients and organizations.
The CML Advocates Network:
In 2007, CML Advocates Network was founded by CML patient advocates to strengthen the leaders of CML patient organisations; it has grown into a global network of currently 106 patient organisations in 81 countries. The community is actively engaging with academic and industry researchers, is celebrating global World CML Day on 22 Sept and is publishing patient-friendly summaries from scientific congresses and therapy guidelines.
An Overview of CML Horizons 2016 was provided by Ms Pat Garcia Gonzalez. Key points were:
• CML patients have benefited from better treatments including drugs like:
1. Imatinib (Glivec®) 2. Dasatinib (Sprycel®) 3. Nilotinib (Tasigna®) 4. Bosutinib (Bosulif®) 5. Ponatinib (Iclusig®)
• PCR Fuss – International Scale should be the standard practice across all labs for testing PCR. Else it is difficult to compare the results
• To Define Eradicating CML, pharma companies to strive towards this goal from new TKIs. Research works is in progress
• Key notes for a Patient Advocate – Every advocate should know what drugs are approved in their country and for what specific use ( Label). Pharma representatives from the pharma companies can provide information about their own drugs‘ situation in respective country.
• Paediatric CML. Many unmet needs. No TKIs other than Imatinib.
Jan Geissler, from CML advocates network, gave a brief update on the work carried out by the group.
• An app to remind patients to take the Pill. This supports in better compliance.
• A patient-friendly summary of the European LeukemiaNet recommendations (2013) for the management of Chronic Myeloid Leukemia Treatment Recommendations for People Living with CML has been released.
Patients advocacy is striving towards getting a better TKI with lesser toxicity for which there is an on going action from Patients advocates group to collaborate with Pharma companies to involve patients and their testimony during drug development. This can provide a deep insight on cause and effects of current TKIs have on the patients which can lead to a better drug research and discovery.
CML is the only cancer amongst 300+ cancers, whose patients have a span of time of more than 10 – 15 years. This gives an opportunity for Patient advocacy groups to generate and publish data by working closely with Physicians, advocacy groups and medical Writers.
First line treatment is with Imatinib in most of the countries. However there are TKIs that have specific target to BCR ABL resistant TKIs. A TKI is in its clinical trial stage which has a potential target for BCR ABL with another mutation. CML now has evolved to have TKIs when patients begin to resist treatment from first line of treatment.
Stopping of treatment – The views from the panel of doctors was that there is a potential opportunity to stop treatment when a patient demonstrates Major Molecular Response however this can be evaluated only with proper clinical data, PCR testing, Adherence to taking medicines and patient records. There is still debate in the network on stopping of the treatment.
Importance of PCR Monitoring : The doctor panel discussion reaffirmed the importance of PCR monitoring and the adherence is extremely important. This monitoring shall ensure compliance as well as disease progress in patients.
PCR standardisation procedure should be followed by all labs. The standard to follow is Internaltional standards as non standard lab procedure can skew the results by three times. Patients should insist on the procedure being followed by the labs and ensure International Standards is being followed.
PCR testing in Low resource countries – Cost effective lab equipment to conduct PCR testing is available. The equipment can conduct PCR test as per IS standard and result can also be made available at a very short time. Access to get these equipments in Low resource countries is being evaluated.
• Access Programs to Imatinib in many countries are facing issues with no support from Government. , there are also some significant ongoing problems associated with the program. Like India, there are countries were some governments are taxing the donated drugs which makes the donation program difficult to implement. Best Practices on Access Programs were presented on how Patient Advocacy groups are proactively working with Government to ensure the Access programs are supported. From India the Patient Advocacy for revoking Customs Duty levied on Imatinib was chosen by the Steering committee and a presentation was made sharing our best practice.
• Fund raising methodologies for Patient Support Groups, NGOs was presented. The session provided some very good insights on how fund raising can be taken up by Patient Support groups, NGOs.
• A working group session on WORLD CML DAY, was held. Here the Best Practice of Max Foundation, India and FOM conducting WORLD CML DAY in 2015 was shared during the session. Key outcomes and learnings was shared which had a positive outcome with the audience.
• Psycho Social issues on how to deal with newly diagnosed patients, caring for the care givers, and dealing with Cancer at the work place reiterated about importance of being more compassionate and empathetic both for Patients, care givers and doctors was key highlight.
• Friends of Max presented a Poster on the theme “Mentoring – Capacity Building for a Patient or Care Giver.“
Report by P S Parmeswaran (Trustee, Friends of Max)