At the end of February, just before Rare Disease Day, Emma Rooney, patient ambassador and member of the new EPAP patient advisory group, attended a multi-stakeholder symposium on improving patient access to rare disease therapies in Brussels, organised by EURORDIS.
Here is what Emma has to say about her involvement as a patient representative in the symposium:
“Right words aside, the inclusion of simulation exercises is what brought the themes of the conference to life. Role playing sessions involved everyone in the room, gave attendees the chance to talk to each other, and most importantly to practice working together on a challenge. Simulations also let attendees take on roles different from the ones they are typically responsible for.
I played the part of decision maker and got to evaluate pricing and reimbursement of health technologies. This gave me a level of power I’m unaccustomed to as a patient. It was a bit of a thrill to be in powerful shoes, especially getting to use a voting button.
At the same time, I also felt frustrated by the limited information I received to make important decisions and the time restraints placed on getting to a final decision. Of course these scenarios were just games, but playing left me with greater awareness of the type of input needed, from patients, to ensure decision makers can take the patient perspective into account.
I also thought a lot about how difficult it must be for decision makers, to open themselves, to listen to stories from patients, while knowing that they aren’t in a position to always vote in favour, of what’s beneficial to the patients they hear from.
My takeaway from the symposium was greater empathy for all the players involved in making access to rare disease therapies viable. Patients should be at the centre but there are many voices that need to be heard if we want to move forward together to improve the lives of rare disease patients.”
She is seen in the photo with fellow EPAP PAG member, Oxana Kulish (l) from Ukraine.