ALPHA-1 ADVOCACY AROUND THE WORLD
The challenges of obtaining the appropriate medical care for Alpha-1 vary by country. Many countries have already made progress in the areas of awareness, detection, health management, and access to augmentation therapy and reimbursement. While countries have different governance structures and healthcare systems that demand a unique approach to advocacy, much can be learned from the experience of Alpha-1 communities that have faced these challenges and won some hard fought battles.
ALPHA-1 GLOBAL TOOLKIT
A special Alpha-1 Advocacy Toolkit is developed to help mobilize Alpha-1 communities in their efforts to improve access to care, including augmentation therapy. This document aims to assist you to build a successful advocacy strategy, including tools to engage and educate decision makers in your country or region. Alpha-1 leaders must decide which recommendations are relevant given the political, social and cultural context in their particular country, and adapt the information for use in their own language and situation.
On May 28, 2015, the RAPID Trial results were published in The Lancet, one of the world’s oldest and most prestigious medical journals. Lead author Kenneth Chapman, MD, director of the Asthma and Airway Centre of the University Health Network in Toronto, Canada, called the trial “the most rigorous evidence to date that augmentation therapy slows the progression of emphysema in patients with Alpha-1 Antitrypsin Deficiency. The effect of A1-PI seen in this trial was both clinically and statistically significant, finally confirming its benefit in preventing the loss of lung tissue in patients with this potentially debilitating disease.”