|Vol.2 Issue 6||gman.myeloma.org||June 2016|
GMAN Summit 2016 – Copenhagen, Denmark
This year GMAN’s 4th annual summit was held in Copenhagen, Denmark. We had wonderful participation from our members with 40 individuals representing 30 organizations and 25 countries from all over the world. Members from as far as Australia, South Korea and Brazil joined with their counterparts from Europe and North America to discuss issues facing myeloma patients on a global level. From our discussions, there are three items that require clear next steps, which are detailed below.
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. Please vote by July 22nd.
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. Please provide your comments by July 22nd.
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. Please provide your edits and suggestions by July 22nd.
We look forward to pursuing these next steps with our members and industry partners in the coming months. Thank you to those that came to Copenhagen and to our sponsors for allowing us to continue building this wonderful group of dedicated advocates.
To submit a news story for publication, please contact
Raymond Wezik, Global Advocacy Executive, International Myeloma Foundation at firstname.lastname@example.org.