Author
Bernd Dobbert, as appeared in Alpha1 Journal 1-2024.
When I was asked a few months ago by the Alpha-1 Europe Alliance whether I would be interested in giving a lecture at a conference on the topic of „new regulation of substances of human origin“, such as blood plasma, I spontaneously agreed.
The board of Alpha-1 Europe Alliance then registered me for the so-called SoHO conference on June 24th in Brussels, hosted by the European Health Union, an organization led by the EU Commission to ensure the safe supply of medical products to EU citizens.
Of course, I had prepared myself for a bit of work, but in the first few days after registering, my email inbox was overflowing with messages like: Please confirm your participation. Please register. Please confirm that you are participating as a speaker. Please log in to the EU online tool. You must submit all travel documents online for reimbursement, and so on and so forth.
Regardless of this, there were deadlines: Please submit a professional CV by such-and-such a date, please send a current, professional photo, enclosed a template of the slides which you must fill with content and send to us by xxx at the latest.
In addition, I received preliminary programs, professional travel information, and emails on various topics in a very friendly tone.
Suddenly I had a lot of work, far more than I had ever imagined. I threw myself into the tasks, sent out photos, a resume, and finally the finished presentation slides. Special thanks go to our board member Heinz Stutzenberger, who provided me with invaluable support throughout the entire preparation period and supplied me with a wealth of important information.
The big day drew ever closer, and finally, on Sunday, June 23, 2024, I boarded the ICE train from Cologne to Brussels. In just under two hours, I arrived, took the next metro to Schumann station, and quickly found my hotel near the conference venue.
The next morning, I went to the conference venue, where I found myself in a long registration line. Half an hour later, I had a day pass and a speaker's badge. There was still some time before the conference began, so I looked around. I overheard English, Spanish, German, and many other languages being spoken at the coffee tables. There were many reunions, joyful hugs, and conversations about recent vacations. People knew each other. This wasn't the case for me; I didn't know anyone. So I was glad when one of the organizers briefly greeted me and introduced me to the moderator, with whom I had already been in contact via email.
We were soon able to take our seats in the conference room. Around 200 participants were spread out in the windowless, unadorned space. Due to the high level of interest, there was an online access option for watching the conference live.
Tamsin Rose, the conference director, ensured everything ran smoothly from the very beginning. The schedule had to be strictly adhered to; otherwise, with so many speakers, we probably would have had to sit there for several days.
The EU Commissioner for Health, the Spanish Minister of Health, the Deputy Director for Health and Food Safety – one after the other, they all spoke. The entire conference was held in English, so participants had to concentrate very hard on the topics and the language.
Words, words, words, many different organizations, interest groups, coordinators, profit and non-profit organizations, lobbyists from many European countries – soon my head was spinning with all the acronyms, but it was also exciting, interesting, and educational. A small glimpse into our Europe, how it works, what the processes are like, and how legislation is implemented. I was allowed to get a taste of a world about which I had previously only been able to form an opinion from the press and newspaper articles.
The morning flew by, and before I knew it, it was lunchtime. Drinks, delicious salads, and light snacks were served. I chatted with a woman who was also there as a patient. It was fascinating to hear from an MS patient from Norway that she had received stem cell therapy five years earlier at a hospital in Moscow. Her story deeply impressed me.
Suddenly, two women rushed up to me, shook my hand, and introduced themselves. Fernanda Aspilche and Veronica Lopez from the Alpha-1 Europe Alliance had been looking for me and found me. An interesting conversation quickly developed. I learned many more details. They also introduced me to a few other participants. Tamsin Rose approached me and praised us for the perfect presentation. They had used our slides as a template and sent them to all the speakers so they could structure their slides similarly. Despite its importance to our organization, I was enjoying the day more and more.
After the lunch break, my presentation drew closer. Finally, the moment arrived, and Tamsin Rose called me to the podium. To be honest, I was quite nervous and initially held the microphone much too far from my mouth. But after that first slight wobble, the ice was broken. I told my story about my alpha-1 antitrypsin deficiency, which, as I noticed, many in the audience followed with great interest. In the second, shorter part of my presentation, I addressed the implications of the new law regarding the blood plasma donations that are so important to us.
The discussion focused on two aspects: The first concerned the safety of donors and recipients. The law provides excellent protection for donors in this regard. This also ensures the safety of us recipients. A Europe-wide law to protect all donors is important and will be implemented in the future. I commented on this positively. The second point concerned a secure supply of blood plasma for all patients in Europe. I pointed out that there are still not enough donors. Therefore, in consultation with the Alpha-1 Europe Alliance, I suggested that a modest compensation might lead to a larger number of donors.
After my presentation ended, there was a final coffee break. Many participants approached me, congratulated me on my talk, and further interesting conversations ensued. I made several new contacts and collected many business cards. Finally, I was approached again, and the first criticism arose. The main point of contention was that compensation for donors was unnecessary, as there was already enough blood plasma available. Following this conversation, I informed Fernanda Aspilche, the chairwoman of the Alliance. Veronica Lopez responded immediately, and the social media channels received a written statement outlining the Alliance's position and our stance as an independent patient organization. Soon, the final session began, concluding with a cocktail reception in the late afternoon. After these last engaging conversations, I left the conference venue and hurried to catch the last Eurostar train back to Cologne.
In summary, I can only say that it was a wonderful experience and a little adventure for me, and completely different from what I had imagined. If the opportunity arises again, I would definitely be very happy to participate.
