From Jørn Schultz-Boysen, Vice President, HAE Scandinavia
On 10 December 2022, HAE Scandinavia gathered 34 HAE patients and their family members in Norway to offer knowledge and information on various topics. In the city of Bergen, we had a very good Saturday with mostly people from the western region of Norway. The meeting was held in collaboration with the dermatology department at Haukeland University Hospital. Dermatologist Dr. Lene F. Sandvik gave information on their plan regarding the follow-up for HAE patients and how they are building a team with nurses to be a part of the health care for this patient group.
The national volleyball player, Kristian Morken Bjelland, shared his patient journey with HAE. Two years ago, the 30-year-old athlete was diagnosed with HAE after many years of swellings and stomach troubles – without any logical explanations. Then his mother and one of his two brothers were also diagnosed with HAE. His story resonated with many, who could relate to his struggles, fears, and hopes regarding living with this rare disease.
In this patient meeting, we had a big section regarding young patients. Our own youngsters, Victoria Schultz-Boysen and Nanna Maria Boysen, shared how young people suffering from HAE and their siblings are building a young community across borders. They hope more Scandinavian youngsters will join and benefit from having a young support system they can reach out to when needed.
HAE Scandinavia is working on several projects targeting young people. Our daily manager, Trine B. Boysen, could reveal we are making a podcast series with five episodes containing these topics: Community in a young HAE network, Education abroad, Travels abroad, Information about HAE to friends/colleagues/family etc., and “Youngsters” in the future.
She also revealed that one of our youngsters had gotten the opportunity to be a part of the LEAP project and will be working on how to get the youngsters included on our website.
HAE Scandinavia is also planning on publishing a children’s book about HAE, which will be translated into Norwegian, Danish, and Swedish. In addition, we are translating the booklet “Understanding HAE” to all our languages to provide good and understandable information about HAE, which our members also can use in their dialog with the people around them.
We were also very fortunate to get nurse Siri Grønhaug from the National Competence Service for Rare Diseases to make a presentation. She has worked for many years preparing young people and their parents for a life with intravenous and subcutaneous medication. She shared tips and tricks on how to prepare a child and how to find good strategies for collaborating with healthcare personnel.
HAE Scandinavia’s President, Henrik B. Boysen, presented a summary of the results of our pharmaco- and socioeconomic study. It highlights the burden of living with this disease from an economic perspective, but also the burden on the life of HAE patients and their surroundings. Yes, it costs a great sum of money to treat HAE, but if all seizures could be avoided, society would be able to save money. New treatment options results in an 84 to 86% reduction in the number of seizures. This gives a significant improvement in the patient’s quality of life. With the new treatment possibilities, we have come much closer to the medical vision of a seizure-free life for patients with HAE.
Another important part of the program was the treatment options available in Norway. Board Member Trine Dahl-Johansen guided the participants through the new rules and system regarding HAE medication in Norway. In April 2022, the Norwegian health administration for all national hospitals introduced price tender and rules for which products should be provided for this patient group. Even though the patients, for now, are allowed to stay on their current medication, the new system will require many to switch to a cheaper version in the future. We fear that it will be based on economics rather than a medical switch. And right now, there is officially only one prophylactic treatment available through the new tender system, even though our other member countries, Denmark and Sweden, have several options. This is an injustice that HAE Scandinavia is highlighting in our work targeting the health authorities.
We also looked into the crystal ball and talked about exciting new trials and studies which might lead to new treatment options in the near future.
Last fall HAE Scandinavia also held two successful meetings in Sweden, one in Malmö and one in Stockholm. These meetings gathered nearly 50 HAE patients, caregivers, and healthcare professionals from all over Sweden and featured informative lectures from Linda Sundler Björkman, a leading expert in HAE from the university hospital in Lund.
The first meeting was held in Malmö, a city in southern Sweden known for its beautiful architecture and vibrant culture. The event was held at a conference center in the heart of the city and attracted both healthcare professionals, patients, and caregivers. Attendees got the chance to network and acquire lots of knowledge and information. Linda Sundler Björkman who presented her research on HAE and told us about new medications and upcoming treatments, while Henrik Balle Boysen and Trine Balle Boysen gave useful information about HAE Scandinavia and Youngsters.
The second meeting was held in Stockholm, the proud capital of Sweden. The event was held at a conference center just outside the city center and attracted a similar audience as the Malmö meeting. Attendees had the opportunity to learn about stress management and MediYoga from Beatrice Casselholm de la Salles, who is a naprapath and mediyogatherapist. Also, one of our own Youngsters, Nanna Maria Boysen, shared information about Youngsters, and we were very fortunate to get Linda Sundler Björkman to make her presentation in Stockholm as well.
Both meetings were highly appreciated, providing attendees with valuable networking opportunities, practical knowledge, and new ideas for improving patient care. Now we look forward to autumn and the upcoming Scandinavian conference in Malmö, Sweden on 10-12 November 2023.
