Interview with Michal Rutkowski, the Co-founder and President of the HAE Poland and HAEi Regional Patient Advocate.
Hello members of the HAE Junior Czech Republic!
My name is Michal Rutkowski, and I am privileged to be Vice President of Hereditary Angioedema International, a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
Also, I am HAEi Regional Patient Advocate responsible for Central Eastern Europe, Benelux and Middle East, and I work directly with Member Organizations and HAE patients from over 30 countries.
But most of all I am HAE patient, so is my 6 years old son. I live in the city of Krakow, Poland with my beloved wife and two wonderful children.
HAE International provides its member organisations and patient groups with specially designed tools and technical assistance that promote disease education and support activities addressing the unique needs of HAE patients and their families. All of our programs and services center around ultimately providing our member organizations with the education and tools designed to significantly increase their effectiveness in representing people in their country affected by HAE.
To accomplish this fundamental task, HAEi provides thorough training, hands on support, and proprietary state of the art tools. All of our efforts are focused on helping local advocates accelerate progress toward the goal that we all share – unfettered access to and reimbursement for modern HAE medicines.
The sense of community achieved through constant communication and input from the member organizations we serve, reveal that HAEi is creating a global movement that imbues the community with a sense of urgency for action.
HAE International resources include the following:
It is the first time a patient group has initiated this type of medication distribution program. It is a regulatory and ethically approved mechanism to distribute HAE medication to countries with no drug access. The HAEi GAP model initially includes a ‘Named Patient Program’ where governments or hospitals order the medicine and provide reimbursement. HAEi plans to add a ‘Compassionate Use Program’ and ‘Early Access Program’ to the Global Access Program.
HAE International has just launched a new app, HAE TrackR—made by patients for patients. HAE TrackR app is an easy-to-use electronic diary designed to record HAE attacks, treatments and the impact HAE has on the patients’ lives and their loved ones. HAE TrackR is a secure, product- and company-neutral app, where all data gathered is the sole property of the user. Patients can share the data with their physicians. HAE TrackR strictly protects the patients’ data and privacy and is fully EU-GDPR compliant.
HAEi Advocacy Academy courses support people with HAE in everyday life and help our member organisations be successful advocates. HAEi Advocacy Academy online courses are free to access. They are delivered in small manageable chunks and can be accessed at any time, from anywhere in the world. Advocates can learn new skills in their own time and at their own speed. HAEi offers a range of courses to help advocates of all levels and experience. HAEi also provides courses to help with everyday life with HAE.
HAE International offers its member organisations and patient groups a cloud-hosted dedicated website for each country supporting the country’s local language. The websites are an easy solution with various templates to choose from and are free of charge.
HAEi Connect is a cloud-based GDPR compliant online membership database for HAEi member organisations. HAEi Connect offers a secure, stable and user-friendly platform for collecting and storing member information, and it is also an excellent way to communicate with members.
When a person with HAE arrives at a hospital or care centre, the HAEi emergency card can be a quick and effective way to inform healthcare professionals of the HAE diagnosis and the treatment that should be considered. The HAEi regional patient advocates have developed a template emergency card containing clear and straightforward information about HAE and treatment required during an attack. It also includes space for patients to add personal information such as emergency contact details and their specialist treatment centre. The emergency card has already been translated into 40 languages and is being used by HAE advocacy organisations worldwide.
In 2020 HAE International launched its first app, HAE Companion, with some essential features helpful to people with HAE. The app provides an easy way to access and store the popular HAE emergency card in the many languages of our member countries.
The app uses geofencing so the app can send push messages to the user when they are on the move. It also provides a list of ACARE Centers and HAE-knowledgeable hospitals and physicians; using Google Maps or Apple Maps, HAE Companion indicates directions and distance to the nearest place.
HAEi understands kids and teenagers suffering from HAE are the future of our global community. Therefore, is so important to allow young people to understand the disease, to learn new skills and develop as individuals, and advocates.
HAEi Youngsters (HAEi YC) was formed in 2018 to support, motivate and educate the younger generation of HAE patients as well as their families and friends. Formed under HAEi, the Community follows the HAEi Youngsters Guidelines for co-operation, co-ordination and information sharing. The HAEi YC is free to join, and open to HAE patients, family members, caregivers and friends who are:
The mission of the HAEi YC is for members to be able to work together for a better quality of life for HAE patients. This is achieved through sharing experiences, advocating for better care, and welcoming new youngsters into the global HAEi family!
The goal of the community is to create a welcoming, caring and inclusive for all members. The HAEi YC aims to support all of its members from around the world and work together to advocate for better care and quality of life for the future of HAE patients.
The community’s current resources consist of:
Additionally, HAEi offers resources specifically to kids:
From the beginning of HAEi’s existence, diverse collaboration with medical experts, as well as activities in science and development have been a priority, resulting in eight different therapies registered by the FDA, EMA or both. At least another 10 are being researched, including in genetics. We work closely with expert physicians to continuously encouraged a tailored, patient-focused approach to the use of available therapeutic options. This is unique for a rare disease and our global umbrella organisation played a fundamental role in it.
In a joint venture with GA2LEN (a non-profit organisation of leading clinical and research facilities in the field of allergy and asthma), HAEi has established the GA2LEN/HAEi Angioedema Centers of Reference and Excellence (ACARE). The centres work with our member organisations and HAEi to further enhance the quality and consistency of clinical care and create a robust environment for local and global HAE research. HAEi is dedicated to ensuring that ACARE centres will become the leaders, driving force, international model and inspiration for superior angioedema care and research.
Furthermore, through our global network, HAEi assists in the design and recruitment of large- and small-scale clinical trials and studies.
Absolutely, I would love to share a message with your patient community!
I would like to share with the HAE Junior Czech Republic community the importance of patient advocacy and to say despite all the obstacles and difficulties HAE brings, we are very lucky to be in a position where we are at.
I wish I was a youngster once again and have all these opportunities that are available nowadays for young HAE patients and their parents. 30 years ago, when I was your age, nothing was there, nor patient organization and expert physicians, neither medicines availability. I remember I had so many questions and doubts that nobody could answer back then, and I didn’t understand what was going on with my body.
Today, 3 decades later, you have your own patient organization that offers expertise knowledge, local support, and guidance, as well as multiply projects that young people can benefit from. Also, you have an amazing and expertise skilled leader of the organization, Camelia Isaic, who works hard on many levels to have a positive impact on life of HAE patients in the Czech Republic.
Please, remember that nothing is taking for granted, especially access to and reimbursement for modern HAE therapies, and therefore it is so so important to support your local organization! I can ensure you the future for HAE is bright, as more and more modern HAE therapies are on the horizon, additionally to current 8 on-demand and long-term prophylaxis therapies approved.
Co-founder and President of the HAE Poland Michal has been involved in HAE advocacy in his home country since 2005. He became Vice President of HAEi in 2011 and he was appointed HAEi Regional Patient Advocate in 2016. Michal works with HAEi Member Organizations and HAE Patients from Central Eastern Europe, Benelux and Middle East. Michal was diagnosed with HAE at the age of 17. He is an architect and project manager, living with his wife, daughter and son in Krakow, Poland.