New Horizons in Treating Cancer Conference 2008 in Italy: A global voice for CML

baveno.jpgThe 6th annual international New Horizons Conference for Organisations Representing People with CML or GIST was held from 27 to 29 June 2008 in Baveno, Italy, with the highest ever attendance. For the first time the Congress had a truly global representation, with almost 100 delegates from more than 35 different countries covering Europe, North America, Australia, Asia, Africa and Latin America. Sponsored by Novartis, the New Horizons conference represents a unique opportunity for patient advocates from all parts of the world and leading medical experts in the field to come together and share their experiences, strengthen existing collaborations, forge new alliances and learn about the latest innovations in cancer treatment.

As in previous years, the congress aimed to generate an inclusive atmosphere, with a high level of interaction between patient advocates, researchers and medical experts. Debates were held on a wide range of topics relevant to the GIST and CML patient advocate community, such as challenges in cancer drug development and disease and side-effect management. In each case, the emphasis was on free and open discussion between the groups, rather than the more traditional expert lecture format. Presented alongside medical and scientific data were a wide range of patient initiatives and research carried out by new and established advocate groups around the world. This included the compelling drug dosage results of the Life Raft group, as well as the winner of the conference poster prize, the recently-formed "Izumi" CML patient group, the first organisation representing CML patients and their families in Japan. This dynamic group looked to educate both patients and the general public about the disease, through their website, as well as via forums held across Japan. They also ran a signature campaign demanding remedial action regarding the healthcare costs for patients.

A number of workshops covering skills necessary for establishing or developing a patient advocacy group were also included in the conference program, covering e-advocacy through to effective organisation branding. "We wanted to stop people reinventing the wheel, help them avoid common pitfalls and encourage them to develop a strong and productive presence" explained meeting co-ordinator Kathy Redmond. "There is still so much to be done to improve CML and GIST treatment outcomes."

"This year the Congress had particular significance as 2008 marks the 10th anniversary of the Phase I trials of Imatinib", said Sandy Craine of the CML Support Group UK. While Imatinib remains one of the most successful drugs for treating CML and GIST patients, further progress has been made in the last 5 years in the development of new molecular-targeting drugs for those patients who are intolerant or become resistant to Imatinib. As outlined in the congress sessions, there are now second generation tyrosine kinase inhibitors (TKIs) available, such as Dasatinib and Nilotinib for the treatment of CML patients, or Sunitinib for patients suffering from GIST. A number of third generation TKIs are currently in the experimental phase. In addition, other therapeutic approaches, such as a combination of a reduced intensity stem cell transplant ("mini" transplant) with TKIs to treat CML, are evolving as alternative therapeutic options for some groups of patients. Promisingly, research over the past year has shown that, used effectively, these therapies may now prevent disease relapse in patients. Advocates were united in the call for further studies and clinical trials, with a view to entirely avoiding the occurrence of resistance to this drug as well as identifying a cure.

Unfortunately, as reported many times during the meeting, there is a large variation in access to these drugs across the world, and sometimes even within a particular country. For patients unable to receive medication through normal healthcare channels, perhaps due to financial reasons or because the drug is not provided by regional authorities, a number of other access options were described. These included clinical trials, expanded access programs, compassionate and off-label use, although it was agreed that, due to local bureaucratic delays, some of these options were too slow for many patients needs. The problem of patients being unable to enter trials running in other countries was also discussed. Changes in area-specific legislation, such as the EU Clinical Trials Directive, were further highlighted as a cause of increased costs and delays in progress, particularly for independent academic research.

With the range of treatments and treatment combinations now available, the decision regarding how to treat a particular patient has become more complex. "The story is no longer so simple – more and more questions are arising as our knowledge of disease variants increases and more treatment choices become available. I’m not sure we have less questions today than we had 7-8 years ago", commented Giora Sharf, chairman of the Israeli CML Patient's Support Group. It was no surprise, then, that the delegates felt passionately about the need to institute global treatment guidelines that ensure routine internationally-standardised tests at diagnosis to enable doctors to accurately determine the best course of treatment for each patient.

As the level of TKIs found in the blood plasma can vary between individuals and at different points during treatment, conference attendees also proposed that 'trough plasma testing' of TKI levels should be considered for patients who have either sub-optimal responses or an intolerable side effect profile.

Following these discussions, both the GIST and CML patient advocate groups drafted similar but separate consensus declarations to promote a universal best-practise standard of care. The CML groups addressed the growing inequality of patient monitoring and access to best therapeutic options across the world. In doing so they put forward a 14-point "CML Declaration", to be adopted and built upon by health professionals, companies and politicians. The declaration can be viewed and signed at, a worldwide CML advocate networking platform which was launched at the 2006 New Horizons congress in Germany, and is entirely run and financed by patient groups.

Congress delegates were also in agreement about the next overall steps required for patient groups globally. "We need to be part of any government or medical committees making the decisions which affect the lives of our members", argued Norman Scherzer, executive director of the Life Raft Group. Participation of members of a global network of advocates in clinical trial design discussions would also be likely to increase patient knowledge of - and therefore participation in - international trials, potentially decreasing the amount of time required for effective drugs to get 'from the laboratory to the bedside'. "The patient voice is very powerful", declared Sandy Craine, "and if we speak as one, our power will increase one hundred-fold. Whilst we may have our different local and regional needs, if we work alongside and help each other, we can achieve real change".