What Did We Accomplish?
The Global Myeloma Action Network (GMAN) summit had three main issue items that required definitive next steps.
During day one of the summit, members were divided into three small groups and each given a different topic focused on global awareness. The topics were the result of the survey that was sent to each GMAN member prior to the summit asking to define “global awareness.” After robust discussions, members agreed that as a priority, GMAN should select a day to celebrate Global Myeloma Awareness Day. Possible dates will be placed on the member portal for a vote within the next month and a logo will be developed for cohesive branding.
➢ Next Steps:
- Possible dates will be placed on the member portal for a majority rules vote within the next month
- A logo will be developed for cohesive branding
EU Policy Initiative
Mait Raava of the Estonian Myeloma Society presented on the current system of treatment approvals within the European Union (EU). He noted that once the European Medicines Agency (EMA) approves a new treatment for use, each individual member country then must approve the treatment for use and reimbursement within their state. However, each state often uses different criteria and formulas to determine the cost-to-benefit analysis, which results in varied treatment availability from country to country. Under Mait’s leadership, GMAN has proposed a cost-benefit formula that uses the same scientific inputs to be used by all EU members. Mait’s findings will be posted to the member portal for feedback on the formula and best next steps.
➢ Next Steps:
- Mait’s findings will be posted to the member portal and open for comment as to the direction of the initiative and the formula to use for one month
- Develop educational material for parliamentary members
Steve Roach of Myeloma Australia presented a draft of the International Charter for People with Myeloma. The patient charter outlines the rights and expectations of patients, caregivers, health providers, governments and pharmaceutical companies. It is a comprehensive document that sets a standard across the globe, giving those that fall below the standard a tool to use in achieving their goals. Supported by 37 myeloma organizations from around the world, GMAN members can use all or parts of the charter to ultimately ensure the rights of patients everywhere. By the end of the GMAN summit and after multiple spirited discussions, we are now on version 7 of the document. It will be posted on the member portal for a one-month comment period.
➢ Next Steps:
- Place the latest version on the member portal for a one-month comment period
- Finalize charter for release
Beyond our three main objectives, our summit saw several other items discussed and shared.
Susie Durie Educational Grant Selectees
During the summit we were fortunate to have presentations by each of the three Susie Novis Durie Educational Grant selectees. Gabriela Simancas from FUNCA was unable to join us in person, but she recorded a video that described her project and explained how the junior grant selection will impact patients in Paraguay with their first ever patient and family seminar. Dr. Yervand Hakobyan from the Armenian Hematology Association presented on the current situation in Armenia and why his program, which includes the first transplant in his country, will benefit from the second junior grant selection. Finally, Mira Armour from Mijelom CRO gave an in-depth overview as to why her program to bring myeloma support to several central European countries was the senior grant selection. Following the presentations, our two selectees who were present held a question and answer session with many excellent discussions among the members. We look forward to continuing this excellent grant opportunity next year.
We were fortunate to have Dr. Rafat Abonour present at both our welcome reception and our day one morning session, where he gave an excellent overview of the International Myeloma Working Group (IMWG), the IMWG guidelines, and the future of myeloma treatment. He spoke for over an hour while also taking many audience questions ranging from how his practice has changed in light of the recent treatment approvals, to ways in which the IMWG and GMAN could work together.
Increased Capacity Building and Best Practice Sharing
Now that members have begun to form bonds with one another through multiple interactions within GMAN, it was put to the group as to how best to engage outside of in-person meetings. The member portal will be undergoing some changes in order to help accommodate their suggestions for easier use and access. Members also voted to allow the member email list to be made available on the portal so that individuals could interact with one another through the internet.
Changes to Future GMAN Meetings
Based on member feedback and suggestions, we have many new ideas for our next summit. Below are some, but not all, of those suggestions.
- Start later to allow members (especially those that are patients) time to adjust to the new time zone
- Better alignment with EHA so that members can attend patient track
- Break up industry presentations throughout the day so members can retain information better
- Block time for set number of member presentations each meeting on member programs and projects
- New member orientation and mentoring as an optional activity
Thank you to our sponsors!
Thank you to Celgene, BMS, Takeda, Novartis and Amgen for making these meetings possible. Without their continued support and engagement, we could not gather this wonderful group of advocates together to help multiple myeloma patients around the world.