From HAE Portugal (ADAH)

This past December 2021, ADAH held the second online event of its annual conference, under the theme of the advantages and challenges towards the autonomy process of patients with HAE. The occasion was meant to promote the share of up-to-date scientific knowledge on the disease, while providing an opportunity for doctors, patients, and association representatives to meet, interact and debate under the same roof. 

The conference was divided into three panels:

  • The scientific panel, coordinated by Professor Manuel Branco Ferreira, was comprised of four presentations by specialists in HAE from Portugal and Brazil, who addressed topics such as genetics and Angioedema; the life quality of those affected by HAE; the real experience of a patient in a peripheral hospital; as well as the Portuguese legislation on HAE and its importance for patients.
  • This was followed by a panel constituted by Patient Associations, highlighting their contribution towards the process of empowering HAE patients. The debate versed around the main difficulties faced by these entities, and the obstacles presented by both the Ministry of Health and some hospitals against the widespread practice of home treatment for patients with HAE, allegedly the high cost of medication, and the risk of medicine wastage, due to expiration dates. On this panel, ADAH was joined by HAEi, represented by Executive Vice President & COO Henrik Balle Boysen and Regional Patient Advocate Maria Ferron.
  • Lastly, a panel of patients reunited several testimonies focused on the impact of HAE in their personal and family trajectories, before and after accessing home treatment. There was a consensual reference to the significant improvement in the patients’ life quality through home therapy, emphasizing the practical and rapid resolution of acute crises. Also mentioned were the decrease in the numbers of hospital visits, and in school and professional absenteeism levels.

An important Q&A session followed, resulting in a widespread exchange of experiences between the attending patients, association representatives and doctors. Notwithstanding the difficulties still faced by those affected by HAE towards acquiring treatment autonomy, we acknowledge its undeniable progress in Portugal. It’s time to consolidate it and, more importantly, make it available to all of those who will benefit from it.