The International Chronic Myeloid Leukemia Foundation (iCMLf) is a new charitable organization with a mission to improve the outcome of patients with chronic myeloid leukemia globally.
“We were discussing how other diseases had foundations that were able to do so much for patients with those diseases and how CML seemed to be a big gap,” said one of the organization's cofounders and a member of the executive team, Professor Timothy P. Hughes, MD, Head of the Department of Hematology at SA Pathology and Consultant Hematologist at Royal Adelaide Hospital and Clinical Professor of Medicine at the University of Adelaide in Australia.
The Chair of the Executive Team is John M. Goldman, DM, Senior Research Investigator in the Division of Investigative Science at Imperial College London, UK; and the other members are Jorge Cortes, MD, Professor of Medicine and Chief of the CML Section in the Department of Leukemia at the University of Texas M. D. Anderson Cancer Center; Brian Druker, MD, Howard Hughes Medical Institute investigator and Director of the OHSU Knight Cancer Institute and the JELD-WEN Chair of Leukemia Research at Oregon Health & Science University; and Michele Baccarani, MD, Professor of Hematology at the University of Bologna.
Emerging Regions Support and Partnership Program
The iCMLf announced the launch of the Emerging Regions Support and Partnership (ERSAP) Program at the American Society of Hematology Annual Meeting. The program includes a “Preceptorship Program” for clinicians from developing regions, and one-to-one partnerships between CML centers of excellence and major CML centers in developing regions.
Imatinib and other tyrosine kinase inhibitors (TKIs) have transformed the treatment and outcomes for patients with CML in the Western world, with second-generation TKIs offering effective therapeutic options for patients with resistance to imatinib, Professor Goldman noted. “The improved survival in CML directly attributable to the use of tyrosine kinase inhibitors is so dramatic that these new agents must be made available to the greatest possible number of eligible patients as rapidly as possible throughout the entire world.”
Patient Assistance Program
The Glivec International Patient Assistance Program (GIPAP), run by Novartis and facilitated by the Max Foundation, has provided imatinib free of charge to 39,926 patients with Philadelphia chromosome-positive CML in 82 countries to date. Still, Professor Hughes noted, many patients are unable to access the GIPAP program either because they are unable to visit a doctor or because they cannot afford the blood test to confirm CML.
“We know there is a huge unmet need out there and one of the barriers is just a diagnostic test. The second problem is that once patients access a program they still don't have any way of getting affordable monitoring of their disease.”
Similarly for clinicians from developing countries, who may find it difficult to access up-to-date knowledge and skills regarding best practice for CML treatment and management. The world of CML is rapidly evolving—hence the challenge faced by clinicians in developing regions is how to enhance their education so they can provide optimal treatment and monitoring for patients, Professor Hughes continued.
The ERSAP Preceptorship Program, funded by an unrestricted grant from Novartis Oncology, will provide training, education, and support for 30 clinicians in emerging economic countries each year.
Centers of Excellence
Five specialist CML centers will be volunteering their expertise for up to six visiting clinicians each year. These centers of excellence are:
- Royal Adelaide Hospital in Australia.
- Hammersmith Hospital in London.
- St.Orsola-Malpighi University Hospital in Bologna, Italy.
- The University of Texas M. D. Anderson Cancer Center.
- Oregon Health & Science University Knight Cancer Institute.
The visiting clinicians will be involved in the day-to-day management of patients with CML, gaining hands-on experience with clinical practice, outpatients, and laboratory work, for up to one month. This training may also be supplemented by seminars or workshops.
The hope is that the program will be available to countries worldwide and particularly those with limited resources for training, Professor Hughes said. “If someone comes to us and identifies that they have a great need for this program and the resources are not there for them, then we would consider them.” Further information is available on the iCMLf Web site: www.cml-foundation.org.
Although the Preceptorship Program is the Foundation's first program to get under way, there are also plans for additional programs over the next few years. “This is our first program, and we are very keen to get it going in 2010 and get awareness out there that we are determined to make a difference in managing CML throughout the world,” said Professor Hughes.
Funding is now being sought for a second ERSAP Project that will establish ongoing partnerships between CML centers of excellence and CML centers in developing regions, which would provide support, training, and networking for clinicians treating CML.
“We are seeking funding from a wide variety of companies and also seek funding through our Web site for support from businesses, from patients, and from other groups,” Professor Hughes said.
The iCMLf will work in close collaboration with other groups including the Leukemia Foundation of Australia. The aims of the iCMLf are also complementary with the Max Foundation and the Leukemia and Lymphoma Society in the US, he pointed out. “Our particular strength is our expertise in CML and our global focus.”
Included on the iCMLf Web site is a forum about current plans, inviting comments on what has been achieved or suggestions on areas that haven't been considered, Professor Hughes continued, adding that the Foundation is looking for input from clinicians and interested patients and family members and it is hoped that this will open discussion to the wider CML community.