Alpha-1 Global calls for home treatment throughout the European Union.

Published on May 4th, 2020

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Alpha-1 patients with lung disease are among the most vulnerable to the effects of COVID-19. In order to mitigate risks for Alphas, potential exposure to COVID-19 should be limited. 

The COVID-19 pandemic causes a variety of challenges to all parts of society, but particularly to Alpha-1 patients. Alphas with lung disease are among the most susceptible to serious complications if they become infected with COVID-19. Throughout the world, trends of patients avoiding hospitals and postponing treatment are increasing. Because places such as hospitals and physicians’ offices entail an increased risk of contracting COVID-19, it is essential for vulnerable groups to avoid these places as much as possible. Thanks to the Alpha-1 Foundation and our entire community’s efforts, a temporary regulatory change in the United States now allows Alpha-1 patients to receive home infusion instead of infusions in high-risk settings such as hospitals or physician’s offices.

In Europe, the possibilities for patients to receive treatment at home varies from one country to another. This is a result of the fact that healthcare is organized at a national level, rather than at a European level. In some countries, options for treatment of Alphas outside of hospitals and physicians’ offices already exist, while in others they are subject to strict conditions, and in some countries this possibility does not exist at all. In order to reduce the risk for Alphas to get infected by the coronavirus, Alpha-1 Global envisages a dual strategy, with goals both for the short term and for the long term.

In the short term, we believe that the governments of all Member States of the European Union should be made aware of the risks that vulnerable patients are exposed to during this pandemic. We would like for governments of all EU Member States to make the option of home treatment available to Alphas. For this reason, we have contacted national organizations of Alphas and encouraged them to advocate for this cause. In order to facilitate this, we have provided patients with Alpha-1 Global’s social media toolkit and the political engagement toolkit, which are instructive tools that explain how to use social media and political engagement to advocate for a specific political ask.

For the long-term objective, we aim to leverage the contacts we have established at the European Parliament to call for European coordination on this matter. Although healthcare systems are organized at national level, the European Union can facilitate coordination and guidance of national responses to public health threats. This is why we will work, together with those Members of the European Parliament who show support for our cause, to make sure future guidelines include the protection of vulnerable groups during public health emergencies. The main instrument we envisage to advocate for these guidelines is a Parliamentary Question, which can be posed by a Member of the European Parliament to the European Commission. As we saw once again during the Alpha-1 Awareness Day on 25 April, the political support for our community is strong. We hope to use this support to help Alphas cope with challenges such as COVID-19, no matter where you live

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