Congenital Immunodeficiencies: Many Affected, Low Awareness; 15 Years of Joint Private Commitment
Vienna (Austria), August 21 2019 –. The successful partnership between the Immunologische Tagesklinik (ITK), a privately run outpatient immunology clinic in Vienna, and the US-based Jeffrey Modell Foundation (JMF), committed to increasing awareness and improving the situation of people with PID, was launched 15 years ago. Since then, over 750 patients in Austria have benefited from the ITK’s outstanding scientific and medical expertise. In many cases, years of suffering from serious infections have been alleviated for the first time by precise immunological diagnosis and consequently targeted treatment. However, estimates point to many more potentially affected individuals – tens of thousands of people in Austria with PID, that have still not received a precise diagnosis – so the ITK-JMF partnership is still as important as ever.
A fifteen year old boy from New York City, Jeffrey Modell, died in the eighties of the last century – thus ending a life cut short by illness, but also full of joy. His death was the result of a PID and it changed his parents’ lives forever. In 1987 they founded the Jeffrey Modell Foundation (JMF), which fights to raise awareness of PID around the world and is committed to ensuring affected patients an effective treatment. The foundation sets up partnerships with centers around the world, that stand out for their expert scientific quality and profound medical experience and dedication. One such partnership, focused on Austria and Eastern Europe, was launched 15 years ago in Vienna – with the ITK.
A Place to Provide Support for PID Patients
The ITK has been supporting patients suffering from PID in Austria for the past 30 years and has been conducting internationally recognized research from the beginning. With its founder, Professor Martha Eibl, it also played a significant part in drawing up the World Health Organization (WHO) coordinated, standardized classification of the at present more than 350 known hereditary immunodeficiencies, published by the International Union of Immunological Societies (IUIS). As Professor Eibl explains: “Just two decades ago, there were less than ten known causes of PIDs. But thanks to coordinated research performed around the globe, the molecularly defined number is now over 350 and continuously rising. This now available exact knowledge has opened new avenues for precise diagnosis and treatment. Most clinics lack this very special medical expertise and in addition health insurance funds don’t always accept to reimburse them the total costs for a precise diagnosis, which only saves costs in the long run.” The partnership with the JMF has enabled the ITK to expand its operations in Austria and abroad over the past 15 years and help more and more PID patients. It has succeeded in raising physicians’ awareness of these rare diseases and now provides highly specialized expertise to support and secure diagnosis, as well as provide recommendations for prophylaxis and, if necessary, efficient treatment.
The ITK was among the very first of Jeffrey Modell Diagnostic Centers for PID to open in Europe, with a focus on Austria and Eastern Europe fifteen years ago, and it has provided assistance to over 750 patients diagnosed with these rare diseases and have been cooperating with centers in Poland and The Czech Republic since then. These patients often suffered persistent and or recurring illnesses and went from clinic to clinic without PID being suspected. Supported by the JMF, the ITK is continually expanding awareness and providing state of the art diagnosis and treatment in Austria and cooperating with countries in central Europe. Basic data have thus been collected for in this area for the first time giving an insight into the current knowledge of PIDs and the treatment procedures used today. As a result, targeted steps have been taken that have increased the awareness of PIDs among physicians and the public and paved the way for modern treatment concepts. Furthermore, it was spreading the information on state-of-the-art immunological diagnoses and individualized treatment. However there is continuous further effort needed.
Many Austrians Affected
“International studies have shown that about 1% of the population is affected by PID,” says Prof. Martha Eibl. “That means there are 80,000 patients in Austria with PID, of whom only a few received an accurate diagnosis at the time they develop a severe illness. Numerous PIDs differ fundamentally from one another, and precise diagnosis requires the link between clinical status and immunological laboratory findings.” Many patients receive an incorrect diagnosis and not the proper treatment. In consequence long-term recurrent and severe illness can result in huge and unnecessary costs for the health system. Even though, for many immunodeficiencies effective treatment concepts are available. With the advice for the proper treatment and with regular follow-up at the ITK PID patients could be treated in regional hospitals, in outpatient clinics and in less severe cases by primary physicians. This has been the ITK’s focus for the past 30 years. High-quality national and international collaboration have shown, that with ongoing immunological monitoring and rapid integration of medical advances effective treatment is possible.
The 15-year collaboration between the ITK and the JMF has played a significant part in ensuring that the constantly increasing knowledge about PIDs filters down to physicians and the general public in Austria. This is achieved by means of in-depth, direct training measures for medical staff, as well as broad-based awareness campaigns. And research on PID is certainly not given short shrift. It was the acknowledgment of pioneering work in Austria in the field of PID that the founders of the Jeffrey Modell foundation, Vicki and Fred Modell, came to the opening of the Jeffrey Modell Diagnostic Center for Primary Immunodeficiencies in Vienna and Eastern Europe 15 years ago. The speakers were the most outstanding personalities in the field of immunology and included Fritz Melchers, Director of the Basel Institute for Immunology, Professor Fred S. Rosen, one of the pioneers of PID research at Boston Children’s Hospital in the USA, chairperson of the classification group of primary immunodeficiency disorders, lectures on diagnosis included T. Espanol, J. Litzman, and lectures on treatment by Luigi Notarangelo and others.
After 15 years, the ITK and JMF still have work to do. In addition to the estimated 80,000 undiagnosed affected in Austria, every year about 800 babies are born with PID, meaning they will suffer numerous infections in the course of their lives before – possibly – receiving the correct diagnosis.
Link Jeffrey Modell Foundation http://jmfworld.com/
About the Immunology Outpatient Clinic (Immunologische Tagesklinik (ITK))
The Immunology Outpatient Clinic (Immunologische Tagesklinik) is a center for patients with impaired immunity and immune mediated disorders. It offers diagnosis and advice for treatment for patients with immunodeficiency including PID. The patient’s clinical history and medical status are taken into consideration and a broad spectrum of clinically relevant laboratory tests are carried out for precise diagnosis of the great variety of PIDs; each of them requiring special expertise and experience for effective treatment. The ITK can prepare state-of-the-art individual treatment plans which guarantee ideal care for the patient when implemented in consultation with the treating physician. The ITK team also plays an instrumental role in scientific advances in the diagnosis and treatment of immunological diseases. It has a long track record of cooperation with respected centers in Europe and the USA going back several decades. (http://www.itk.at)
About the Jeffrey Modell Foundation (JMF)
Established in 1987, the New York-based Jeffrey Modell Foundation (JMF) is an international non-profit organization dedicated to supporting sufferers of primary immunodeficiencies and their families. The foundation has four focuses: research, providing information to and educating physicians and patients, patient support, and raising public awareness. The foundation provides funding for research fellowships and laboratory equipment, as well as sponsoring numerous international training activities for physicians. It also provides easy-to-understand publications and gives sufferers access to leading medical centers with clinical immunology departments. (http://jmfworld.com/)
Martha Eibl, MD, CEO
Deputy Medical Director
Hermann Wolf, MD
Immunology Outpatient Clinic /
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