EMPOWERING MYELOMA ADVOCACY ACROSS EUROPE


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Barbara Leonardi, Fundacja Carita, Poland

“We really welcome the launch of the Myeloma Access Atlas. Myeloma Patients Europe has supported Fundacja Carita twice via the Atlas Programme by writing to the Polish Health Ministry to support the approval or reinstatement of myeloma drugs for national funding. By highlighting the importance of the drugs to patients alongside information on comparative access in Europe, it really supported our case. Through collaborative and strong action, we were able to improve access for Polish myeloma patients.” 

 

 

Mirjana Babamova, HEMA, Macedonia

“I have been involved with MPE through a range of programmes, most importantly joining the Myeloma Community Advisory Board to represent the Balkans. The data captured in the Atlas and information provided to me through conversations with the MPE access team, has been so useful to me and my organisation. It has helped me feel confident in engaging with pharma at the highest levels on access issues and with national policy-makers.” 

 

 

 

Riikka-Leena Manninen, Suomen Syöpäpotilaat, Finland

“I am so pleased about the launch of the new look Myeloma Access Atlas. I know that evidence-based advocacy is important and having this resource available to compare myeloma drug access across Europe is really beneficial. Suomen Syöpäpotilaat previously received support from MPE through the Atlas Coaching Programme on two myeloma oral drug submissions in Finland. MPE shared examples of submissions from other countries and data, patient surveys and key advocacy points to help inform our submissions. This help was invaluable, particularly as we are not a myeloma-specific organisation, and we would thoroughly recommend to other advocates.” 

 

 

Lucica Nitu, SOS Mielom, Romania

 “I contacted MPE and they made inquiries to European transplant experts on my behalf and, through this initiative, we benefited from expert advices on bone marrow transplant in other countries and on how we can better adapt this expertise in Romania, according to available local resources. This help and encouragement meant a lot to me.”  

 

 

Kristina Modic, Slovensko Združenje Bolnikov Z Limfomom In Levkemijo L&L

“With my fellow board member Biba, I co-chair the Atlas Central and Eastern Europe Workgroup. We currently have around eight members from across the region and meet to discuss and prioritise core access issues we want to address. Our first priority is mapping access to clinical trials across CEE countries and developing a position paper on minimum standards required to set up and run trials in countries. We really think this will help advocates in the region know what to work towards. Secondly, we want to discuss access to generics. On behalf of the whole Workgroup, we’d really encourage members from the region to get involved and share their challenges and expertise.”