Would you like to know more about what sarcoma advocates around the world are doing and working on?
We at Voices of Sarcoma want to introduce you to the advocates from our member groups -- the work they do is so important and inspiring for other advocates and for the sarcoma community as a whole.
Recently, we interviewed Kai Pilgermann from the German Sarcoma Foundation, and we want to share that conversation with you today. Portions of the interview may have been edited for clarity.
VoS: Kai, can you tell us about your organization: Who does it serve? What does it focus on? Can you give some numbers (people active in the organization, people helped)?
Kai: The German Sarcoma Foundation (Deutsche Sarkom-Stiftung) has its focus on all sarcoma patients in Germany. We try to help individual patients, and to answer their questions. We are also trying to improve the situation for all patients by working on improving the health care system. One specific thing we are working on is bringing the patient perspective into the early phases of drug development and sarcoma research.
Our organization was founded by patients and doctors together and is a registered charity in Germany. The board consists of 10 people (patients and doctors) who all work as volunteers. In addition, we have two employees and some freelancers who work on projects for us.
At this point we have around 3,500 patients in our database. We are in regular contact with them through channels like our newsletters.
VoS: I’m wondering about your motivation. What made you want to become a patient advocate in the first place?
Kai: Well, it was definitely my own experience as a patient. When I was first diagnosed with GIST (Gastrointestinal Stromal Tumor) in 2004, I realized that every patient should inform themselves and understand what the diagnosis and the therapy mean. That was the main reason I got involved in patient groups. I started by gathering information for myself and then later I began to help other patients to get this information.
Meanwhile, almost 20 years later, my focus lies on building and strengthening the organization and on the international collaboration with other groups.
VoS: What kind of advocacy work do you personally dedicate yourself to most?
Kai: At the moment I am serving as a Board Member (I am the Financial Director) of the German Sarcoma Foundation. I am also a Board Member of SPAGN. In Germany, I also organize the meetings of a regional GIST group, which is a part of the German Sarcoma Foundation.
VoS: So, what do you see as your most important achievement in your advocacy work? It can really be anything, big or small…
Kai: I think the biggest achievement was setting up the German Sarcoma Foundation together with the German sarcoma experts. It was really a big step forward to get patients and doctors working together, side by side, to improve the quality of care for all sarcoma patients.
VoS: What relationships -- with other people, sarcoma organizations, or institutions -- are important to you in your advocacy work?
Kai: I think having good relationships with all stakeholders is really important. It could be the relationships with sarcoma experts in Germany or worldwide, and our relationships with the pharma companies are also important. On the other hand, my relationships with all of the patient representatives we meet regularly are important to me. It’s really good to see what is going on in other countries and with other diseases. And the regular input we get from the patients themselves helps us to see where there are any blind spots which we as an organization should address.
VoS: What goal have you set for yourself or your organization?
Kai: Well, one really important goal for me is to improve the quality of life for every sarcoma patient and to help them to get access to the best available treatment. The other main goal is to improve and to speed up the development of new drugs for sarcomas by getting involved in the development process early with the pharma companies.
A MEMORABLE MOMENT
VoS: Looking back on your time as a patient advocate, which moment in your advocacy work would you say you remember most vividly?
Kai: Well, there are so many great moments which I had during almost 20 years as a patient and patient advocate! I think the most influential and therefore most memorable moment was the first meeting of our regional GIST group back in 2004. Shortly after my diagnosis, I had the chance to meet some other GIST patients. It was good to see that they had similar questions and some of them also had some answers. At that meeting I also met the doctor who is still treating me today! That meeting was the starting point of my “advocacy career”. I am still thankful that I actually decided to go there, despite some doubts I had at that time about “self-help groups”.
VoS: Kai, what would you say you do best in your advocacy work? What is your advocacy superpower?
Kai: I certainly do not think that I have a superpower! I think I was just really lucky to meet the right people, who really helped pave my way as an advocate. And I feel I am lucky that my own disease still allows me to do this work for the patient community.
VoS: What is your own personal advocacy motto, if you have one? Or do you have a bit of wisdom to pass on?
Kai: For me, the answer to that is really simple. “Educate yourself about your disease!” is the motto which I would like to pass on to every patient.
Kai was only 27 years old at the time of his GIST diagnosis. It was an accidental finding; the tumor was discovered during an appendectomy. Due to a tumor rupture during surgery, he has been on ongoing medical treatment since then. Kai is a member of the Board of Directors and Financial Director at SPAGN as well as the German Sarcoma Foundation.
Interview by Amy Bruno-Lindner
Photo credit: ARTIS/Uli Deck