At the EAHAD 2020 Congress, in The Hague, Netherlands, we honoured professionals who have made exemplary contributions to the haemophilia and allied disorders community in Europe and around the world with the EAHAD Recognition Award for Outstanding Contribution to the Haemophilia and Allied Disorders field. One of the recipients is Prof. Wolfgang Schramm, Emeritus Professor of Haemophilia at the Ludwig-Maximilians-University of Munich. We took the opportunity to interview Prof. Schramm on his accomplishments, his views on the current state of haemophilia care, as well as any advice he might have for aspiring professionals entering the bleeding disorders field.
You led the group that obtained the first substantial European Commission funding to conduct the ESCHQoL study, a multinational study on health economics and quality of life in haemophilia. Could you give us some insight on how you spearheaded this impressive initiative?
In the 70s,80s and even early 90s, the availability of factor products and the level of haemophilia care varied tremendously between countries in Europe.
The goal of the ESCHQoL study was to determine the clinical conditions of patients with haemophilia within Europe. The study was conducted within 21 European countries and collected patients’ various clinical data, like haemophilia type, severity, treatment pattern, use of factor products, bleeding, orthopaedic joint scores and infections. Our analysis showed that patients that lived in areas with low factor consumption or availability were the most susceptible to joint disease. Access of patients with haemophilia to optimal care with safe factor VIII concentrates was limited and heavily depended on the region of residence.
We needed to find a common denominator to provide treatment for all. This is quite like how EAHAD was created, since in 2005, the Interdisciplinary Working Group that I was also part of, met to identify and address constraints inhibiting developments in haemophilia care across Europe. EAHAD played a crucial role to the development of recommendations in our field.
What was a challenge that you wanted to tackle while working in the field of haemophilia?
A challenge for me was how to support HIV positive haemophiliacs. In the 80s, with the arrival of AIDS in the community, my HIV-positive patients, who were up to 100, did not know if they would live or die. It was extremely difficult for patients back then and I wanted to support them as much as possible.
What do you think will be the next step in the field of haemophilia?
We have so many opportunities and new products today. But for these new products we need more data. Right now, the number of patients who are on these new products is small. It’s understandable that the pharmaceutical industry is pushing for these products, but we need less marketing and more time and research to see if there is a real benefit and outcome for the patients.
Has your perspective and interests changed throughout your career in haemophilia?
Absolutely. In the beginning I was interested in regulation of haemostasis and protease inhibition. In the 80s, I was concerned about the dramatic impact of HIV on haemophilia patients. In the 90s, I focused on the availability and access of clotting factors (e.g. twinning project with Timisoara), the financial differences between countries and the importance of cooperation and harmonisation of clinical practice between them.
Since the mid-90s, I was involved in the discussion on the “optimal use in haemotherapy”, leading to the Wildbad Kreuth Initiative (1999, 2009, 2013, 2016, 2019) in conjunction with the EDQM, PEI and LMU.
Could you share with us a defining moment in your work? How did you feel when it happened?
The fact that we conducted the ESCHQoL study and that it led to change in the level of access to treatment was very important to me. There were huge disparities between countries back then (for example between Romania and Germany) and I feel that the study helped make these differences less evident.
What do you think are the key issues for haemophilia and allied disorders care in Europe now that we have entered a new decade?
I think it is very important that we keep on pushing the scientific arguments for better and more individualised treatment. We also need to weigh in the balance the information around the different new products. This is something that an association like EAHAD can have an important role. Currently the discussion is about new products with different mechanisms, but for all of them we need a proper evaluation process and surveillance.
Do you have any advice for young and aspiring medical professionals entering the haemophilia field?
Join a scientific working group and don’t trust everything you read. Today the number of new publications is huge. Make your selection based on evidence and trustworthiness.
Outside of your work, what gives you the biggest sense of accomplishment?
My different humanitarian activities around the world and conversations with good friends, both colleagues and patients.