Author
Marion Wilkens, as appeared in Alpha1 Journal 2/2024.
The AlphaCare Patient Support Program (PSP) is celebrating a very special anniversary this year: For ten years, it has been supporting people with alpha-1 antitrypsin deficiency and their families in their daily lives. What began as a joint initiative of Grifols and the patient organization Alpha1 Deutschland eV has developed into an indispensable service for many affected individuals. In addition, PSPs promote better treatment adherence and, alongside doctors and patient organizations, form a third pillar for coping with everyday life with a chronic illness.
The idea for AlphaCare originally came from the company Grifols, and at first, it made us wonder if we could be replaced by it. But that wasn't the case, because many patients wanted more support and regular contact, something we couldn't provide on a volunteer basis. Together with Grifols, we invested a lot of time to help develop a program that truly offers added value and complements our existing services. There was always enough work to share, so it was easy to distribute the responsibilities among several people.
Initially, the first workshops were created, which not only imparted knowledge but also offered practical support – for example, in the form of cooking classes. These events helped to define the central themes of AlphaCare: exchange, support, and a sense of community.
It quickly became clear that AlphaCare was very well received by many of those affected. The regular phone calls and AlphaCare regional meetings showed us how valuable this program is as a supplement. A particularly impressive moment was a group sing-along at a regional meeting in Stuttgart: "It was fascinating to see how singing transformed a mixed group into a true 'we'."„
The coaches play a particularly important role, as their dedication and empathy contribute to AlphaCare's continued success. We support the idea of including family members in the program in the future, as they play a significant role and often have their own questions that aren't directly addressed to the individuals being cared for.
Despite the successes, challenges remain. Organizing substitution therapy while on vacation (especially abroad) remains particularly difficult. We try to refer patients in such cases to patient organizations in the respective country, but this doesn't always work smoothly. Even in Germany, it can sometimes be complicated to find a practice that will provide substitution therapy as an alternative. AlphaCare supports program participants in their search for such a practice. It is also important to better integrate rehabilitation facilities and make substitution therapy more readily available there.
In any case, personal interaction will continue to play a central role, as newly diagnosed patients in particular are incredibly grateful for personal conversations.
Congratulations to AlphaCare on ten years of commitment, inspiration and collaboration! We look forward to many more years full of joint projects and valuable encounters.
