For the first time in history, the European Alpha-1 Community celebrates an EU Alpha-1 Awareness Day tomorrow 25th April 2018. The goal is to raise further understanding about this genetic condition. AATD is most common in individuals of Northern European and Iberian descent. Despite its high prevalence in Europe, patients and healthcare providers continue to be poorly informed about Alpha-1, and an overwhelming number of individuals are therefore not correctly diagnosed with Alpha-1.
Alpha-1 currently has no cure, however, there are treatments developed for better disease management. One of the most effective treatments for Alpha-1 lung and skin affected patients is plasma-purified alpha-1 antitrypsin to restore the normal level of AAT, which slows down progression of lung damage and completely heals the skin condition panniculitis. National policies on Alpha-1 diagnosis, treatment and care vary across Europe, as each country has its own healthcare system and policy for rare diseases. Despite promising results and cost-effectiveness of augmentation therapy, there are only a few countries that reimburse the treatment.
This inequality is evident for example in the Netherlands, where augmentation therapy is reimbursed only for a selected group of AATD patients. In Belgium the reimbursement stopped several years ago, leaving those Alpha-1 patients diagnosed after June 2010 without treatment. In Poland, Alpha-1 patients do not have access to augmentation therapy and face limitations to correct diagnosis and care. For more information see http://alpha-1global.org/european-alpha-1-awareness-day-european-health-made-national-25-april-2018/.
The event is organized by RPP Health Care and sponsored by Alpha-1 Global, a program that facilitates collaborative efforts among Alpha-1 associations around the world.
To read the excellent and informative “Time to Get Better” recommendation document produced by the Alpha-1 European Expert Group click here.