From Regional Patient Advocate Michal Rutkowski
I hope you have had an enjoyable holiday season and went energized into the new year with advocacy motivation. So many things have happened since the last edition of Global Perspectives magazine, and I am happy to share it all with you.
I was privileged to attend numerous virtual meetings with patients, caregivers, and health care professionals within the regional HAE community. A fixed point of my RPA activity is to organize and participate in the individual meetings with Member Organizations’ patient leads to discuss the current situation on an ongoing basis and take appropriate actions to improve it. In recent months I have participated in meetings with patient/physician leads from Armenia, Belarus, Georgia, Hungary, Kazakhstan, the Netherlands, Russia, Poland, Ukraine. Moreover, I connected with Iranian patients and physicians with whom I hold regular meetings to identify their situation and immediate needs. Additionally, Regional Advisory Group meetings were held for Central Eastern Europe, Benelux, and the Middle East in January-February. In total, 13 Member Organizations participated in these meetings, including (but not limited to) countries such as Armenia, Georgia, Egypt, Iraq, Jordan, Kuwait, and Lebanon.
Also, I participated in meetings with CSL Behring, KalVista Pharmaceuticals, and Takeda, where we discussed the important things for the patients’ community and prospects with modern treatment options.
Our Regional Medical Advisory Panels for the Middle East and for Central Eastern Europe and Benelux is growing, with the latest addition of two HAE expert physicians: Dr. Iman Nasr from the ACARE center at the allergy unit at the Royal Hospital in Muscat, Oman, and Dr. Elena Latysheva from the NRC Institute of Immunology FMBA Russia.
Together with other RPAs, I work to disseminate and provide our Member Organizations the HAEi resources:
- the HAE TrackR application that has been recently translated into Czech, Dutch, Lithuanian, Russian, and Slovak – currently, together with Member Organizations, we work on the translations into Armenian, Hungarian, and Kazakh,
- the HAEi Emergency Room Poster has been translated into Armenian and Georgian, and the production will start soon,
- the HAEi Advocacy Academy has been updated with a case study called “Working with Pharmaceuticals”, where I try to share with our HAE community the experience HAE Poland has gained in successful and effective collaboration with our pharma partners over the years. I hope this case study will be useful for the advocacy activities of your organization.
Wonderful news has arrived from the city of Nur-Sultan (formerly Astana) in Kazakhstan, where three HAE patients have been treated with C1-INH esterase for the very first time. It is a huge success of the local HAE community, and I would like to congratulate HAE Kazakhstan and Dr. Elena Kovzel, who have played a significant role in this achievement. Hopefully, more patients in Kazakhstan will soon receive access to modern HAE therapies.
I focus on a detailed analysis of the current patients’ situation in Jordan and identifying drug reimbursement options based on local legal regulations. We have also established initial contact with another local healthcare professional interested in HAE. Furthermore, we are working on a project to better understand the disease by patients, and I hope that in the next edition of Global Perspectives, I will be able to tell you more about it.
