From Regional Patient Advocate Michal Rutkowski
I am excited to announce that the HAEi global family now comprises 95 Member Organizations. One of the most recent additions is HAE Oman, represented by Maryam Al Balushi. So, HAE Oman, welcome on board!
March, April, and May 2022 have been very busy with different advocacy activities. I was invited as a speaker to the ACARE Make a Difference webinar focused on “Mitigating disparity – patient and physician perspectives in the treatment of HAE”. I presented the patients’ perspective and the role of the patient organizations in reducing inequities in health resources worldwide, focusing on Eastern Europe. Together with other HAE patients, we shared our stories, achievements, and experiences in terms of international collaboration.
Also, I had the pleasure to present at the hae day :-) webinar for Ukrainian patients and health care professionals by Takeda. Moreover, I have been engaged in supporting HAE patients from Ukraine, who entered the neighboring countries, especially countries from my region, and were looking for healthcare assistance and access to HAE therapies.
Furthermore, I am happy to share with you that as of 1 May 2022, the Polish HAE patients gained access to and reimbursement for another therapy, recombinant C1-Inhibitor. There are currently six HAE medicines reimbursed in Poland, both on-demand treatment and long-term prophylaxis, which is unprecedented. It shows that everything is possible!
Over the last quarter, I organized and attended numerous individual virtual meetings with patient organizations from Belarus, Georgia, Hungary, Kazakhstan, Lithuania, the Netherlands, Poland, Russia, and Slovakia. Also, I organized regional zoom meetings for HAEi Member Organizations from Egypt, Jordan, Lebanon, Qatar, Saudi Arabia, and the United Arab Emirates. Apart from the virtual meetings, I was in email contact with patients and caregivers from Estonia, Belgium, Iran, Iraq, Kuwait, and Oman.
Also, I participated in videoconferences with manufacturer representatives from BioCryst Pharmaceuticals, CSL Behring, KalVista Pharmaceuticals, Pharming N.V, and Takeda.
The HAE TrackR App is now available in two more languages from my region: Hungarian and Armenian – this is thanks to the great work of the Member Organizations. Furthermore, the HAEi Emergency Room poster has been translated into Armenian and Georgian.
However, the most time-consuming has been the activities regarding the 2022 HAEi Global Leadership Workshop. HAEi’s first in-person gathering after the pandemic gains a lot of interest from the HAE community. Therefore, the Regional Patient Advocates have lots of work communicating with the Member Organization to secure that everyone will register to attend the event. I keep close contact with all Member Organizations from my region, helping them with all the arrangements regarding the Global Leadership Workshop.
Finally, I would like to introduce you to the new President of HAE-QE (the Dutch patient organization), Marijk Beekman-Kortekaas, who has very recently been elected. We wish you all the best in your daily patient advocacy activities.
