Much has been done: Activity report of the CML Advocates Network & Leukemia Patient Advocates Foundation
The "Leukemia Patient Advocates Foundation" is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives and survival of patients affected by leukemia by supporting leaders of patient organisations in providing help and support. It hosts the global "CML Advocates Network" connecting more than 80 leukemia patient organizations in more than 60 countries, and hosts the "CML Horizons" annual global leadership for patient leaders from all world regions. The Foundation collaborates with all stakeholders involved in research, treatment and care of leukemia patients.
The Leukemia Patient Advocates Foundation has been registered in October 2011 as a non-profit organisation. This is the first report of the Foundation’s activities in the period of October 2011 to December 2013.
(in English -- in Deutsch/German)
CML Horizons 2012 & CML Horizons 2013
The "CML Horizons: Learn. Share. Grow" conferences, held in Munich from 11-13 May 2012 (http://cmladvocates.net/cmlhorizons2012) and in Prague from 3-5 May 2013 (http://cmladvocates.net/cmlhorizons2013), hosted by the Leukemia Patient Advocates Foundation in Switzerland, was a great success. In 2012, 86 patient representatives from 48 countries (from Europe, North America, Asia, Africa, Middle East, Australia and Latin America), and in 2013, 102 patient representatives from 60 countries participated in the conference. As the global annual international conference for CML patient advocacy leaders, "CML Horizons" has been instrumental in educating patient advocates, building patient groups' capacity, implementing advocacy initiatives that have had a real impact in the countries and, most importantly, has enforced cooperation in the global "CML Advocates Network".
The main goal of the CML Horizons conferences is to build capacity in patient advocates, to educate them in growing their skills and knowledge how to build and grow effective patient organisations, in disease-pecific topics and in management of NGOs. Furthermore, networking and best practice sharing is at the core, as replicating success stories from other countries has led to a great advancement in CML patient information, treatment and care across the globe.
An elected "CML Horizons Steering Committee" carries all responsibility to run the "CML Horizons" conferences. Following elections by the worldwide CML community in May 2011 and May 2013, the CML Horizons Steering Committee consists of eight members of which six are CML patients themselves, and which represent all major regions of the world:
- Anita Welborn (USA/North America – May 2011 until 2013)
- Bahija Gouimi (Morocco/Africa)
- Euszebius Jan Dziwinski (Poland/Europe – May 2011 until 2013)
- Gina Russo (from May 2013)
- Giora Sharf (Israel/Middle East)
- Jan Geissler (Germany/Europe)
- Jana Pelouchová (Czech Rep./Europe)
- Mina Daban (France/Europe – from May 2013),
- Pat Garcia-Gonzalez (USA/Latin America)
- Zhengchen Liu (China/Asia-Pacific)
The CML Horizons Steering Committee is fully responsible to define the conference programme, take budgeting decisions, coordinate logistics, select the venue, define the rules on (multi-)sponsorship, select delegates, assign scholarships, do fundraising, etc
The coordination, operational implementation and organisation of CML Horizons 2012 and 2013 was delegated to Giora Sharf and Jan Geissler. Some logistical work (e.g. travel organisation, on-site staff, delegate registration audio/video technology) has been outsourced to third parties (logistics company, hotel venue, technical service providers, travel agents).
The conference received unconditional support from Novartis, BMS, Pfizer, ARIAD, AsuraGen, International CML Foundation and Leukemia & Lymphoma Society.
CML Advocates Network
The CML Advocates Network (www.cmladvocates.net) is a vivid virtual network specifically for leaders of Chronic Myeloid Leukemia (CML) patient groups, connecting 82 patient organisations in 64 countries by the time of this report.
The CML Advocates Network is a worldwide network designed and run by CML patients and carers who are registered patient group advocates and organisers. Its website's aim is to facilitate and support best practice sharing among patient group organisers across the world. The site features a constantly updated address list of all CML patient support groups. For support group organisers and patient advocates, it features a restricted, member-only discussion forum and advocacy knowledge base.
The central idea behind the CML Advocates Network was initiated in 2005 during the 4th International "New Horizons in Treating CML and GIST" conference in Dublin for CML & GIST patient advocacy groups. The CML Advocates Network was set up in 2007 by four patient groups from Germany, UK, Czech Republic and Israel to keep the international networking going also after the community’s annual meetings, which in the past has proven to be difficult, mainly due to geographical distances. It has grown to a well-organized, world-spanning network today.
Non-Adherence to treatment in chronic diseases is a well-known problem. The dramatic evolution in Chronic Myeloid Leukemia (CML) treatment in the last decade, resulting from the introduction of Imatinib and followed by second generation TKIs, has turned CML into a kind of chronic disease where patients need to take their medication on daily basis.
Two recent clinical studies, the ADAGIO and Hammersmith trials, have proven a clear correlation between adherence and achieving optimal treatment response. In addition, the Hammersmith trial went further and proved that non-adherence was one of the most important factors for a loss of cytogenetic response.
In April 2011 a workgroup consisting of 8 patient advocates from 8 European countries, as well as 3 CML experts, had launched an adherence pilot survey. The pilot survey was supported by Bristol Myers Squibb and the results of this pilot survey were reported at a scientific session on adherence during the EHA meeting in London in June 2011 as well as published in the scientific journal "Journal For Patient Compliance" (Vol 2 Issue 4, 12 Dec 2012)
In 2012, the CML Advocates Network, hosted by the Leukemia Patient Advocates Foundation, decided to conduct a much larger, scientifically sound international study. It enrolled patients from 9/2012 to 1/2013 based on a comprehensive questionnaire in 12 languages. The aim of this study was to investigate motivations and behavioural patterns of adherence in CML and subsequently support hematologists and patients to improve adherence and develop suitable adherence tools. Overall 2546 questionnaires filled in by CML patients from 79 countries were returned. The study was also supported by CML research groups in Germany, Italy and France.
This is the most comprehensive study conducted to date to gain knowledge about motivations behind non-adherence in CML. The results have been presented at CML Horizons 2013 on 3-5 May in Prague and in the oral sessions of the scientific programme of the European Hematology Association (EHA)'s Annual Congress on 16 June 2013 in Stockholm. It was also presented on 9 December 2013 in the poster sessions of the American Society of Hematology (ASH).
The survey was run independently by the patient community, managed by Giora Sharf, and supported by experts and a logistics company. The survey received unrestricted educational grants from Novartis, BMS, Pfizer and ARIAD.
World CML Day
The CML Advocates Network coordinated World CML Day (International CML Awareness Day) on 22 September 2012 and again on 22 September 2013 (22/9). 9/22 represents the genetic change of Chromosomes 9 and 22 that causes Chronic Myeloid Leukemia (CML). Since 2011, on 22 September (9/22), patient organisations across the world unite to raise awareness of the needs of patients living with CML In 2012, patient organizations in 33 countries organized a wide variety of activities in their regions. This success was even exceeded in 2013. 22 September 2013 was a day full of excitement, but also of learning, reflection and hope. All over the world, many activities were carried out under the motto “All united, all unique”. Amongst others, the CML Advocates Network supported the global campaigns by
- posting all activities carried out across the world on www.cmladvocates.net
- distributing 8.500 pins across the world showing the new “World CML Day” logo as global CML symbol
- initiating a call for video statements in which CML patients, their relatives or carers stated what World CML Day means to them. 30 videos from all over the world were received.
- publishing a poster bank and a photo gallery on www.cmladvocates.net where patient organizations could submit their “World CML Day” posters and photos
- opening a “World CML Day” blog where people were invited to write about their plans for World CML Day 2013 in their respective country.
Patient-friendly summary of ELN expert recommendations for CML management 2009
While treatment guidelines and recommendations are recognised as being the standard of care by haematologists, they can be difficult for patients to understand. To improve the information available to patients, an international CML workgroup of patient organisations and experts have developed a patient-friendly summary of expert recommendations for CML management. The original recommendations were published by CML experts on behalf of the European LeukemiaNet (ELN) in the Journal of Clinical Oncology in 2009. The patient-friendly summary, developed in 4 languages with in-kind support of BMS, is now available in 11 languages through the community’s translation efforts. It aims to help patients to better understand CML management and communicate with their doctors regarding treatment and diagnostics.
Survey on Complementary and Alternative Medicine in CML
Many cancer patients use complementary and alternative medicine (CAM). However, data in hematological cancers are lacking on which types of CAM are being used, what information sources on CAM patients use and to what extent CAM is being addressed in the consultation with the hematologist. The Working Group for Prevention and Integrative Oncology (PRIO) of the German Cancer Society and the CML Advocates Network jointly developed a standardized questionnaire on CAM which was provided online to the representatives of the worldwide CML Advocates Network. A total of 53 leaders of patients’ advocacy groups for CML patients from 35 countries responded to the survey. The results were published in the March 2013 edition of the "Journal of Cancer Research and Clinical Oncology".
Junior CML Advocates
The CML Advocates Network website hosts "Junior CML Advocates". In this area, the Network provides specific support for paediatric CML, which is an ultra-rare condition. The section lists all scientific publications on paediatric CML, and provides information what activities the community has on CML in children and adolescents. It provides background information what CML in children and adolescents means. It also lists organisations supporting children with CML and their families. This section is developed in partnership with the International CML Foundation.
Patient Advocacy Session at EHA Congress
The European Hematology Association's Congress is the leading event for clinicians and researchers in hematology to present the newest data from European clinical trials. About 9.000 delegates, mostly health professionals in hematology, attend congress. Over the years, the patient community has established strong links to the European Hematology Association, and the CML Advocates Network has played a major role in this collaboration.
In close collaboration with EHA, we have jointly established the "EHA Patient Advocacy Session" within EHA's Scientific programme, to bring key topics of the patient community to the attention of hematologists. In previous years this session, covering Access to Clinical Trials (2010), Adherence (2011) and Quality of Life (2012). In 2013, "Involving patients as partners in clinical research" was selected as a lead topic for the EHA Patient Advocacy session.
The Leukemia Patient Advocates Foundation, through the CML Advocates Network, has established close links and "informal" partnerships with scientific groups like the European Hematology Association (EHA), GIMEMA in Italy, the French & German CML Study Groups, the International CML Foundation, the European Bone Marrow Transplant (EBMT) Nurses group, the ESMO's “Rare Cancers Europe” initiative, PatientPower and others.
Generics, copies, substandard drugs
Over the next years, CML patients in more and more countries will be facing the use of generic TKIs and copy drugs to treat CML. To get a first understanding of the availability of generics and copy drugs in CML, the CML Advocates Network launched a global survey in collaboration with the International CML Foundation in March 2013. 86 patient advocates and hematologists from 55 countries responded, with 14 countries having generics or copy drugs on CML in the market. To further develop the fact base and to provide patient organizations with background information on this important issue which has so far been quite difficult to find, the CML Advocates Network launched a Resource & Knowledge Center on CML generics, copy drugs and substandard drugs in August 2013.
For example, the new website section provides:
- an inofficial directory listing all CML tyrosine kinase inhibitors (TKIs) that are - to the community’s knowledge - available to date.
- a „Best Practice Toolbox" for advocacy on generics which contains useful advice and tools on how to address this topic as an advocacy organization when generics or copy drugs are being introduced in your country.
- the results of our survey on generics, copy drugs and substandard drugs in CML conducted by CML Advocates Network
- an index of scientific articles on the use of generic drugs in CML treatment.
- a blog on CML generics
- a glossary with key terms and definitions in the area of drugs and generics.
Leukemia Patient Advocates Foundation (Stiftung Leukämiepatientenvertreter)
c/o Krneta Gurtner Advokatur. Münzgraben 6, P.O.B. 453, CH-3000 Bern 7
Board of Trustees: Jana Pelouchová • Jan Geißler • Giora Sharf • Erik Aerts
E-Mail: , Tel.: +49 (89) 62 836 807
Bank: IBAN CH020023523511353560M, SWIFT UBSWCHZH80A, UBS AG, Bärenplatz 8, CH-3000 Bern 94
Registration: Chamber of Commerce of the Canton Bern – CH-036.7.052.001-2