Author
Linda Tietz, Alpha1 Germany eV, as published in Alpha1 Journal 1/2016.
Dr. Andreas Wilke from the Protestant Lung Clinic Berlin in conversation with Linda Tietz
Linda Tietz: Dr. Wilke, thank you for kindly agreeing to this interview. After the first interview in our new journal series introduced a new board member, and the second interview featured an advisory board member who explained the process of obtaining a listing, I am particularly pleased that you are here to answer our questions today.
Dr. Wilke, in your many years as a pulmonologist at the FLT (Evangelical Lung Clinic Berlin), you have focused for many years on the rare chronic disease alpha-1 antitrypsin deficiency. What prompted you to specialize in this particular disease and not, for example, COPD or cystic fibrosis?
Dr. Wilke: For me, the study of COPD on the one hand and alpha-1 antitrypsin deficiency on the other do not represent alternatives or even a contradiction. Rather, my interest in the clinical picture of pulmonary emphysema caused by A1AT deficiency arose from many years of experience in the diagnosis and treatment of COPD patients. Even today, a number of COPD patients have a genetically determined alpha-1 antitrypsin deficiency. It is our task as physicians to identify these patients, to care for them, and, if necessary, to treat them specifically within the framework of replacement therapy.
Linda Tietz: When and how did you first come into contact with our patient organization?
Dr. Wilke: I can no longer recall exactly when I first consciously came into contact with the patient organization Alpha1 Germany. However, this contact arose inevitably, as the long-serving and highly respected chairman, Gernot Beier, was one of my first Alpha-1 patients in the 1990s. For many years, until his far too early death last year, we maintained extensive contact, not only as patient and doctor, but also regarding the many aspects of the disease, its research, and treatment options.
Linda Tietz: A few years ago, you launched the Alpha-1 mobile unit to provide direct home care for those affected. Is it still running? What experiences have you gained with it?
Dr. Wilke: The "Alpha-1-Mobil" project has been running since 2009, and we are working on its further development and improvement. The project's goal is, and remains, the administration of substitution therapy with a human protease inhibitor under the conditions of outpatient home care. For this purpose, the patient is visited at home once a week by a specially trained nurse or physician. Therapy-related diagnostics, such as pulse oximetry, blood gas analysis, and spirometry, are performed, and the infusion is then administered.
This home care is provided in consultation and cooperation with the treating pulmonologist and/or general practitioner. We initially underestimated the personnel and time commitment. Therefore, this home care project remains reserved for patients for whom the weekly trip to the doctor's office for infusions is unreasonable for a variety of reasons. The feedback from the patients we are currently caring for in this way has been very positive. Starting in May 2016, we will be available three days a week.
Linda Tietz: Are you already familiar with the latest
What do you think of the print publication from Alpha1 Deutschland eV, the children's guidebook "Alpha-1 Antitrypsin Deficiency – Everything You Need to Know"?
Dr. Wilke: I was very pleased when I attended the congress of the German Society for Pneumology
and held the first copy in his hands in Leipzig in March of this year, where he was involved in respiratory medicine. The content and design are very appealing and child-friendly, making it possible for children to understand their illness. I very much welcome this initiative from Alpha1 Germany; furthermore, I consider the maintenance or establishment of additional Alpha-1 Children's Centers to be absolutely necessary and desirable in this context.
Linda Tietz: What potential new therapies can you offer our affected members in the future?
Dr. Wilke: In addition to conventional inhaler therapy, substitution therapy with a human protease inhibitor remains the treatment of choice for severe alpha-1 antitrypsin deficiency. Recently, another such medication was approved. We physicians specializing in the treatment of patients with A1AT deficiency will share our experiences with the new medication, particularly regarding which patients are suitable candidates for this type of substitution therapy. Besides the established substitution therapy, there are research projects investigating alternative treatment approaches.
Linda Tietz: Even though you are no longer working as a treating physician at FLT Berlin, can we as an association assume that you will continue to support us with your expertise and long-standing commitment?
Dr. Wilke: Even though I ended my work at the clinic at the end of last year "for reasons of age," I naturally remain very connected to Alpha-1 patients. I will continue to head the Alpha-1 Center at the Protestant Lung Clinic in Berlin-Buch and hold weekly consultations at the clinic. I will also continue to be available to advise patients and serve as a member of the scientific advisory board for Alpha-1 Germany. I look forward to continued good cooperation!
Linda Tietz: We as an association, along with our members, are naturally delighted about this. Thank you very much, Dr. Wilke, for taking the time for this interview.
