European Alpha-1 Awareness Day 2020
This year, the annual European Alpha-1 Awareness Day takes place on 25 April. It is dedicated to raising awareness of alpha-1 antitrypsin deficiency, a rare genetic condition. The ultimate objective of this awareness day is to improve early diagnosis, treatment and knowledge of the disease. Due to the COVID-19-situation, many events organized for that day will have to be cancelled or postponed across Europe, including the round table at the European Parliament. Therefore it is crucial that we continue to communicate the key areas for awareness at European and Belgian level.
The key areas of different campaigns are:
– European Reference Networks (ERN)
– Improved diagnosis
– Access to treatment
– A holistic approach to improving the situation of Alpha-1 patients
– Plasma donation
European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialized treatment, and concentrated knowledge and resources.
The principal difficulty in managing Alpha-1 is achieving early diagnosis, something which most patients will not receive until severe symptoms have begun, despite the cheap and effective means of diagnosis that exist. Many times, the symptoms of chronic obstructive pulmonary disease (COPD) and liver disease do not lead to appropriate referrals to Alpha-1 Centres of Excellence. This challenge requires a consolidated approach of educated healthcare professionals and patients.
Alpha-1 currently has no cure, however, there are number of treatments developed for better disease management. One of the most progressive treatments for Alpha-1 lung and skin affected patients is called augmentation therapy, aimed to slow down or prevent progression of lung disease, and is often recommended for Alpha-1 patients. Despite promising results and proven cost-effectiveness of the augmentation therapy, there are only few countries which reimburse it in Europe. Belgium only reimburses patients who have been diagnosed before 2010, which creates inequalities amongst Alpha-1 patients.
Another good example is home treatment, treatment at home through self-injection. In Belgium, the augmentation therapy for Alphas can only be done in hospitals or one-day-clinics.In the current situation, this increases the risk of COVID contamination for these patients, who are already at risk due to the lung disease. We should look at possibilities to change this. We should also look at existing training programs for self-infusion, assisted by trained nurses, like it is done already in Austria or Germany.
In these difficult times, when apparently some centres are being closed in Austria or the Czech Republic, the risk of shortages of PDMPs (plasma derived medical products) is increasing.
From Alpha-1 Plus, we would like to sensitize the general public and policy makers across Europe about the importance of plasma donation. Now it is not the time to stop! Plasma donation is key to ensure the treatment for patients with Alpha-1, immunodeficiency, haemophilia or other disorders.
All in all, there is a lot to work to do, and the need for a European common approach is clear, now more than ever. A broad approach can positively impact the individual lives of thousands of Alpha-1 patients across Europe.
Click here to read the Alpha-1 European expert group recommendation.