We are international
Donate
TEXT SIZE   


GMA Summit Welcomes 30 Patient Advocates from 17 Regions

By Arin Assero
VP of Global Advocacy, IMF

07.01.14

Nadia Elkebir, IMF Director of Europe and the Middle East

The Global Myeloma Alliance (GMA), an advocacy initiative of the IMF, was established to mobilize the myeloma community to improve the lives of patients around the world. It is a patient-driven alliance of organizations and individuals active in the field of myeloma, coming together to share best practices, elevate global awareness of myeloma, improve patient outcomes through earlier diagnosis and better access to treatment, and advance innovation in blood cancer through clinical trial engagement. The GMA aims to enhance the capabilities of myeloma advocacy groups. 

The IMF convened the inaugural GMA Summit in June 2013, with representatives from 11 countries in attendance. The GMA has continued to grow, thanks in part to the assistance of IMF’s Director of Europe and the Middle East, Nadia Elkebir. The second GMA Summit took place in June 2014 in Milan, Italy. The IMF welcomed 30 advocates from 17 regions: Asia Pacific, Austria, Canada, Croatia, Czech Republic, Denmark, France, Hungary, Italy, Korea, Portugal, Romania, Slovakia, Sweden, Turkey, and the US, as well as Myeloma Patients Europe (MPE), an organization representing all of Europe.

The Summit’s "Best Practice Sharing" session was opened by Dr. Maria Teresa Petrucci on behalf of AIL (Associazione Italiana contro le Leucemie-linfomi e mieloma), our host country’s biggest blood cancer foundation. Formed in 1969, AIL promotes research, education, and awareness, as well as providing housing assistance, homecare, and financial support to patients in need. Headquartered in Rome, AIL has 82 branches and a large volunteer force of nearly 22,000 people. The IMF has enjoyed a strong partnership with AIL, collaborating on patient education programming over the course of many years, and we are thrilled to have their voice be part of the GMA.

Our next session was led by Myeloma Canada’s Francine Gendron and Aldo Del Col, who presented a case study of patient advocacy and Canada’s HTA (Health Technology Assessment) process. They stressed the crucial importance of patient and caregiver involvement when new drugs are being considered for reimbursement by the pan-Canadian Oncology Drug Review (pCODR). A video available at policymatters.ca is highly recommended for understanding the process in Canada. The approach adopted by Myeloma Canada has resulted in positive outcomes for drug reimbursement throughout the region. Their work serves as a brilliant example of how patient advocacy can have a strong voice in the regulatory process.

Following a break, I presented the GMA’s three-year strategic plan on behalf of the IMF. The attendees reviewed and revised our common mission and goals, and identified GMA’s activities for the next year and beyond. It became clear that there is a need for capacity building and sharing best practices. GMA members will remain in virtual communication year-round while sharing a web portal, programs and services, education tools, and advocacy and support efforts. And the GMA will continue to convene in person twice per year, at meetings of the European Hematology Association (EHA) and the American Society of Hematology (ASH).

One component of our work is a mentorship program, pairing organizations that will benefit from one another. For example, Dr. Ana Pereira is working on building an online myeloma platform in Portugal and is now being guided by Miyelomla Yasam of Turkey, as this is an area where they can offer extensive experience and guidance.

There was discussion about global myeloma awareness and taking advantage of the opportunity to collaborate. For a global campaign, the GMA decided to designate one week in March during IMF’s Myeloma Awareness Month.

Additionally, we discussed the need to collect global data on patient issues through a survey that will assess needs and how the GMA can best provide solutions for myeloma patients. This data will also be useful when speaking to ministries of health and other policy makers about issues concerning our patient community. 

In the coming months, the group will develop a strategy of engagement regarding clinical trials – including participation, access to information, and patient education.

Following the GMA Summit, we have a clear focus on specific activities for the coming months, and we are confident that our committed community of global advocates is ready to fulfill our mission as one united voice.   

Asli Ortakmac
Miyelomla Yasam, Turkey

The GMA Summit brought together beautiful hearts from all over the world and, in a very short time, inspired us to become better educated about the most effective ways to help our patients. The Summit was a crash course in patient support and advocacy. As one powerful voice, we are better able to represent patients across the entire world. Miyelomla Yasam is proud to be a part of the GMA. 

Viorica Cursaru
Myeloma Euronet, Romania

The Summit was very innovative and challenging. It proved that great ideas unite people irrespective of their geopolitical borders. Because myeloma strikes indiscriminately, global action has more relevance. A global approach unites patients and patient organizations, thereby truly contributing to meeting patients’ needs.

Dr. Ana Pereira
Myeloma Platform, Portugal

The GMA Summit was very productive, breaking new ground and allowing groups to learn from each other’s operation modes. It is useful to share not only our successes but also the common challenges faced by those who are dedicated to helping patients.


 related articles