The aHUS Alliance is pleased to spotlight aHUS Romania (SHUa Romania) in this interview with Dr. Adrian Lungu, a pediatric nephrologist from Bucharest Romania. Working at Fundeni Clinical Institute. a Ministry of Health Hospital in Bucharest, Romania he is involved in the management of children with aHUS and interested in complement related research. Dr. Lungu has a passion for genetics, particularly as the key to personalized treatment. With the belief that international collaboration is the future for breakthroughs in science, Dr. Lungu has multiple interests in research projects and joint efforts around the world. In working with patients, Dr. Lungu’s philosophy might be stated with this quote from our interview, “In the end, being a children’s doctor is simple: Just make them better!”
Dr. Lungu, tell us about your interest in atypical HUS.
My deep connection with aHUS started many years ago, long before milestone therapies became available for this condition. During my night shifts, I was almost sleeping near the children who experienced aHUS. At that moment I could see the profound suffering that this disease was inflicting on their little bodies and in their families. It became personal, and I said to myself that no soul deserves such sufferance, that no family should be in the face of a no-solution situation. I tried to do everything possible for a doctor from an Eastern European Country to offer the little heroes the chance to have an accurate diagnosis and, the access to proper treatment and advice.
What is the situation for aHUS patients in Romanian in terms of diagnosis, access to eculizumab, and areas in which advancement is needed.
In Romania, we do not have local labs that can perform advanced complement profiles or genetics related to aHUS, but we have unique collaborations with our friends from Europe, so we can accurately diagnose the condition in a few days and with genetics in two-three months.
We do not have access to complement blocking therapies, but Alexion has granted three compassionate use programs for aHUS in Romania, and we are incredibly grateful for that. We hope that Eculizumab will become officially available and our National Health System will reimburse it for each person in need. Count us among those in Eastern Europe who have keen interest in the need for more research, collaborative efforts, and expansion of clinical trials.
After working with patients over time, I understood that the connection with the little warriors was deeper than a patient-doctor relationship, even deeper than friendship. So together we started a small local project to increase awareness on aHUS in Romania, but also to make our voice heard internationally.
SHUa Romania (aHUS Romania) has recently organized a patient organization, and the aHUS Alliance welcomes patients and their families to the global aHUS advocacy arena. What information can you share about this patient organization?
We managed to form SHUa Romania, a nonprofit patient support organization that aims help the children with this condition and their families. We are active online, and on social media networks, so the correct information is accessible.
We initiated an aHUS Romanian Registry, and we hope that by the end of the year we will have an official guideline. We can see that there is enormous interest in researching complement-related diseases and complement blocking therapies. This field changes each year dramatically, so at some point we will have bedside genetics to adequately and quickly diagnose the condition.
Soon, I hope to have access to a full panel of complement blocking therapies so the treatment should be accessible to everyone.
Make it personal, get involved, be passionate and fight, “not because it is easy, but because it is hard.”
Andreea’s advice, from her participation entry in the aHUS Alliance 2017 aHUS Awareness Day project to highlight the global aHUS patient voice:
“Help me to tell my story. I am the future !”
Dr. Lungu is part of the aHUS Alliance international network of aHUS Clinicians and Investigators, and may be contacted at:
Adrian Catalin Lungu MD
Fundeni Clinical Institute
Tel: +40 722 131950 (mobile), +40 21 2750700 (work)
Follow aHUS advocacy in Romania with SHUa Romania
Twitter – @SHUaRomania Facebook – @SHUaRomania