8th "New Horizons" 2010: 144 patient advocates from 56 countries met in Vienna, Austria

The 8th annual "International New Horizons Conference for Organizations Representing People with CML or GIST" was held this year in Vösendorf, Austria, from June 18 to 20, 2010. Sponsored by Novartis, the conference provided patient advocate leaders with an opportunity for 3 days of learning, companionship and the chance to share experiences across national boundaries. This year's conference was held on a particularly celebratory note, as it marked the 10th anniversary of imatinib and its revolutionary impact on the treatment of CML and GIST. Growing larger every year, the conference welcomed more than 220 participants and a record of 144 patient advocates from 56 different countries in Europe, North America, Asia, Africa, Middle East and Latin America. It featured 30 hours of presentations from a dedicated and enthusiastic faculty of medical experts and stakeholders. Patient advocacy has made significant advances since the 1st New Horizons in 2003, and the conference demonstrated what advocacy groups can achieve in 8 years of cooperation. Many delegates remarked that New Horizons 2010 was the "best ever."

Patient Participation in Research

This year's meeting explored the impact of patient participation on CML and GIST research. Patient involvement can make a real difference in clinical research and advocates were shown concrete examples from other disease fields. These outlined how patient knowledge can be used to generate more meaningful research, find acceptable solutions to ethical problems in trials, boost trial awareness, recruitment and even improve trial data quality through direct research such as patient's surveys. Both CML and GIST advocates were united in their call for patient advocacy groups to become more active in this field.

This is a new frontier in advocacy, and the challenges facing advocacy groups are numerous. Two main hurdles facing advocacy groups are how to convince researchers of the value of patient experience and how to empower patients to contribute. Patients have a unique perspective on clinical treatments. Their experience makes research relevant and useful. If better research takes place, patients will accrue into trials at a faster rate. Patient involvement helps prevent money from being wasted on research that doesn't work."

Volunteers engagement

Another challenge facing advocacy groups is the recruitment and management of volunteers. This issue was presented in sessions that highlighted both the practical issues of volunteering and the emotional challenges facing volunteer advocates helping patients. These stressed the need for thorough training and precise agendas, as well as the importance of motivation and good communication in clearly defining volunteers' roles. Volunteers are the representatives of an organization and need to know what is expected of them. In many ways, a patient counselor must be an expert patient, one with a combination of experience and skills but who is also well aware of the limits of their support mission.

Patient Advocacy Best Practices

Sharing experiences remains a keystone of New Horizons. Patient groups were once again given the opportunity to present their advocacy initiatives during interactive best practice workshops. These provided an invaluable source of ideas and demonstrated what groups can accomplish over time. For example, GIST Support International showed how an all-volunteer, grass roots organization with very few financial resources can effectively carry out its activities online with an active listserv and an extensive website. The US National CML society demonstrated the importance of collaboration and how consulting with advocacy organizations from other disease fields can improve the effectiveness of a group. Operational tips were also offered, and the GIST Sarcoma Liferaft Group Canada demonstrated how a simple web teleconferencing tool such as Skype can be used to enable board members to communicate across great distances, while The Croatian Leukemia Lymphoma Society highlighted the usefulness of social media with the presentation of their Facebook profile dedicated to connecting patients and common interest groups. This year's Best Poster Award was given to Stacey McCauley, the meeting's youngest delegate, in recognition of her dynamic fundraising efforts on behalf of pediatric GIST advocacy.

Interactive Advocacy Experience

New this year was the Advocacy Market Place dynamic. The practical issues of running advocacy groups are a prime concern for advocates. The Advocacy Market Place provided an opportunity for close and active interaction with experts in advocacy management. Here, advocates could attend four sessions of their choice dealing with topics such as fundraising, the internet and social media, working with the pharmaceutical industry, collaborating with physicians, mobilizing patients for advocacy, helping patients find clinical trials, and volunteer engagement. The small size of the groups meant that delegates could discuss these topics directly with their fellow advocates and presenters.

Scientific Update on CML and GIST

Throughout the meeting, advocacy leaders stressed the importance of staying up to date on current, unbiased medical information. The medical update sessions were an opportunity for patients to listen to experts present the latest clinical news and to discuss issues that concern them. The presentations were well pitched to both experienced and new delegates. Introductory CML and GIST workshops conducted by patient advocates, with physician support, gave first-time delegates basic information necessary for a better understanding of approved treatments, whilst medical update sessions provided results of clinical trials recently presented at medical conferences as well as insights into new therapies being developed.

CML therapy has evolved at a rate unseen in cancer treatment and has become a model for other cancers. However, the IRIS study 8-year update showed that 1/3 of patients still need to switch from Imatinib to another treatment in the first 5 years due to resistance or intolerance,  and a number of patients are still losing the battle against the CML. This underscores the need for further improvements in therapy and the continued search for a cure. Delegates were shown presentations on new developments in first-line therapy vs. the benefits of imatinib dose escalation, as well as the results of studies on combination therapies such as imatinib and pegylated interferon showing different ways to enhance clinical outcomes based on response rates. Low dose interferon was also suggested as a maintenance therapy following induction with imatinib. Most patients are sensitive to Tyrosine Kinase Inhibitors (TKIs) at the onset, and an early response reduces the risk of developing resistance and progression. Data on 2nd-generation TKIs used in first-line therapy were also presented, using the example of the recently public data presented at ASCO 2010 about ENESTnd study on nilotinib and the DASISION study on dasatinib.

Resistance to imatinib is the most pressing issue facing GIST patients today. Primary and secondary resistance to imatinib remain life-threatening events for most GIST patients. New treatment strategies must be investigated to overcome resistance with lasting results. The molecular biology of resistance remains a crucial focus of investigation and delegates learned about new research into hopefully promising molecular targets. However, more research and efforts are needed here to identify the best drugs and drug combinations, and the need for International collaborations in achieving this goal was underscored. "Treating resistance" and "Avoiding and preventing resistance" were in fact the first and second preferred topics indicated by GIST delegates in their conference evaluation reports, significantly proving that resistance is a priority concern calling for life saving solutions.

Adherence a big challenge

Adherence to oral TKI therapy remains a problem in both CML and GIST. Poor adherence can have a considerable effect on drug response and can play a strong role in the development of resistance. Providing information about managing side effects is one way that advocacy groups can work towards improving adherence issues. In comprehensive sessions given by experienced healthcare professionals, the most common side effects associated with TKIs were presented and strategies for overcoming these reviewed. The use of complementary and alternative therapies was also examined. Complementary medicine enables patients to take an active role in their therapy, and used as a supportive measure, it can actually strengthen a patient's adherence to treatment. However, advocates were cautioned on the risks of drug interactions and the need to inform one's oncologist if complementary therapies are used.

10 Years Anniversary

Some of the conference's most moving moments came during a special session dedicated to the 10th anniversary of survivors and imatinib. Imatinib started a revolution in molecular targeted therapies and turned CML and GIST into more manageable diseases, giving hope to patients and changing the definition of what it means to survive cancer. Imatinib's use in the treatment of CML was a prototype for molecular targeted therapy, whilst in GIST, the intersection of new science and the availability of imatinib led to better treatment and understanding of the disease. Most of the advocates at New Horizons have had their lives radically changed by imatinib, and this session became a celebration of life as delegates were given the opportunity to share their stories of what the added years of survival have meant to them.

This feeling of celebration prevailed throughout the conference, and as the meeting moved to a close, the delegates were left with happy memories of time well spent with friends. Thanks go to each and every advocate for their tireless work and commitment, to the excellent speakers, to the independent steering committee and the Novartis representatives under the direction of expert facilitator Kathy Redmond, who put together such an interesting program, as well as to Novartis for sponsoring this meeting again this year. See you all at the next New Horizons Meeting in 2011!"

Other reports about "New Horizons 2010"

New Horizons 2010 Steering Committee

Sandy Craine, CML Support,UK
Jan Geissler, Leukaemie-Online, Germany
Carson Jacobi, Leukemia and Lymphoma Society, US
Maria Isabel Gomez, ASAPHE, Venezuela
Jana Pelouchova, Diagnose CML, Czech Republic
Giora Sharf, CML Group Israel
Imke de Lanversin, Novartis Oncology

Anna Costato, Associazione Italiana GIST
Barbara Doré, GIST Support International, US
Estelle Lecointe, Ensemble contre le GIST, France
Norman Scherzer, The Liferaft Group, US
Markus Wartenberg, Das Lebenshaus, Germany
Roger Wilson, Sarcoma UK
David Palacios, Novartis Oncology