Alfred Papuçiu: Hope for treatment of thalassaemia in the near future

Hope for treatment of thalassaemia in the near future

By Alfred Papuçiu

Every May 8, everywhere in the civilized world, is marked the Day of War against Thalassaemia, this disease of the twentieth century and the 21st century. On this day, we remind those children, teenagers and adults that they have to face the disease for years. Their example and the steps that have been made in the last years for the diagnosis and treatment of this genetic disease give us hope that in the near future there will be a cure for thalassaemia too. As a member of thel Thalassaemia International Federation (TIF) and Albanian, I wish all of us in Albania and the Diaspora to remember the words of our saint, Mother Teresa, who with her modesty always provided a humane message: "She that I do is a drop of water in the ocean. But if that point of water was not there, the water would be missing. " Her blue-and-white silhouette was known everywhere in the world and her words are often given as postulates that create hopes for the future of those who have a chronic illness that do not have much income but hope for a future better.

The Thalassaemia International Federation (TIF), the World Health Organization (WHO), the Cooley's Anemia Foundation in New York, and the world's thalassemia associations, including the Thalassaemia  Association in Albania, commemorate Thalassaemia Day hereditary genetic-based disease. WHO estimates that there are more than 100,000 children affected by this disease each year in the homozygous condition, in the absence of treatment. Therefore, in the near future, it is thought to be as simple as possible, effective and effective therapy for everyone. The term "Thalassaemia" comes from Greek (Thalassa ("sea") and -emia ("blood") and indicates that it is a characteristic disease for coastal areas, typical for the Mediterranean Sea basin. Mediterranean, Corsica, Italy, particularly in the Po Delta , Sardinia, Sicily, Greece, Albania, Crete, France, Belgium, Great Britain, Lebanon, Syria, Dubai, Turkey, Cyprus. Other types of organisms exist in Thailand, Laos, India, China, the Philippines, and some regions of Africa. These people have more thalassemia genes in Cyprus (14% of the population), Sardinia ( 10%) and in Southeast Asia Due to migration, the gene is found in all regions of the world, at 1.5% of the world's population, of 80 to 90 million of peoples. Thalassaemia is also encountered in ethnic populations of other backgrounds, so we can not qualify as a Mediterranean disease, in the US and in the European Union estimated 15 000 cases, with 1500 children born each year with this disease. Some time ago I was at an international conference on thalassaemia, and I saw with my eyes over 900 thalassaemia from all over the world, singers, teenagers, thalassemia men and women, married and with children, which could not be conceived for 20 years when thalassaemia was still a deadly disease, and currently it is a chronic, well-treated disease with transfusions and iron eliminators (which unfortunately, due to the defective genus, accumulates in the human body).

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In Albania, based on some partial studies, there is about 7.1 per cent of the population as a carrier of microcythemia, the thalassaemia genus. Distribution of bearers is heterogeneous and the highest frequency meets in areas such as Fier, Lushnja, Vlora, Saranda, Berat, Kavaja, Shijaku, and also in Korça, Tirana, Diber. Hundreds of Albanian citizens have responded to the call of the Albanian Red Cross to donate blood to over 500 Albanian children with hemoglobinopathy, including thalassaemia major, drepanocytosis, thalaso / drepanocytosis. The blood donation alliance, under the auspices of the President of the Republic of Albania, Ilir Meta, was born as a need to sensitize and raise our society for the need for voluntary blood donation, to increase solidarity to donate blood to those who have need especially thalassaemic patients and to promote volunteering, because voluntary blood donation remains a challenge for us.

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On this day of commemoration I can not fail to mention the devoted work of Albanian hematologists, laborers, medical staff in general, who have faced and provided contemporary solutions to the problems related to the diagnosis and treatment of thalassaemia. We can not stay with special respect Professor Selaudin Bekteshi. It was he who founded hematology in our country, he who for all his life cured thousands of children who have grown and lived today, or have created families; it was he who introduced the hematologist to the distinguished doctor, Professor Enis Boletini, who was among the first to use prenatal diagnosis. Steps have also been taken by the Ministry of Health in Albania, as well as by our talented hematologists and other fields dealing with thalassaemia, not only of last generation, Afërdita Gusho, prof. Aleko Vesho, dr. Vangjelo Grillo, but also current doctors, prof. Anila Godo, prof. Eleni Anastasi, Prof. Pali Xhumari, prof. Sulçebe. I forgive those devoted doctors who, because of the lack of a place, can not all mention them, but they enjoy the respect of their patients and their parents. I spoke with admiration for the Thalassaemia  Association in Albania and its chairman, Mr. Musa Zenelaj, and the Albanian Children Foundation, led by Dr. Liri Berisha, who do much, along with Albanian doctors to give their hopes and hope for the future, those thousands of good, wise Albanian children, who have not inherited the thalassaemia disease, but for genetic reasons. This disease, which had been deadly in the 1980s, has now turned into a condition for regular transfusion, with iron removal therapy and prevention of cardiac, hepatic, diabetic, and endocrnological complications well-treated disease.

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In my notes, I also noted the words of Mr. Panes Englezos, President of the Thalassaemia International Federation (TIF) who wrote me a while ago: "We were extremely pleased to learn the Albanian Ministry of Health, the health professionals involved in the treatment of patients with Thalassemia and the Albanian National Anti-Thalassaemic Association are now working closely together to further improve the prevention and treatment protocols for Thalassaemia in Albania. This is extremely encouraging and soul-satisfying. “Here’s the English version, so I do not even make a leak in the Albanian translation of his words: "We are very pleased to read that the Albanian Ministry of Health, healthcare professionals dealing with the treatment of patients with thalassemia and the Association National War of Thalassemia, are now working closely to establish further assessments of Thalassemia protocols in Albania.” Panos Englezos, a successful, respected businessman who, though few years ago, lost his son, Georges, just 27, continues his fight against thalassaemia by helping with his experience but also by organizing conferences international in different countries of the world.

Today, on May 8, I received a warm message from the TIF Executive Director regarding President Ilir Meta's initiative for the blood donor alliance for thalassaemia. She writes to me: Dear Mr.  Papuçiu, Thank you for your note and many congratulations for this initiative. Kind regards Dr. Androulla Eleftheriou, PhD Executive Director, TIF, and Member of the Board of Directors of the International Alliance for Patient Organizations (IAPO).

The  Thalassaemia International Federation, which is headquartered in Nicosia, Cyprus, does a commendable job of diagnosing and spreading new thalassaemia medicines to go to not only major treatment centers, but also in villages and places where there is still no specialized centers. There are 91 countries in this Federation, with their thalassaemia associations, scientists and individual members, hematologists from Europe, including from Albania. It organizes seminars and has a comprehensive medical education program that starts from genetic counseling and prenatal diagnosis that can provide comprehensive medical reports to families to help them have full health. Her experts have been in Albania. In the Albanian language are published some of her books, among others the book "About Thalassemia", written by the director of TIF, dr. Androulla Eleftheriou, which is a precious guide to thalassemia patients, as well as for medical staff.

After the Limassol Conference in Cyprus entitled "Advances in Thalassaemia Diagnosis and Treatment" organized by TIF, several international conferences have been organized for Thalassaemia, in Dubai, Singapore, Italy, New Delhi,  Antalya, Athens etc. Anyone who has been following the past 30 years in the treatment of thalassaemia, notes with conviction that the future will be much better. Moving from initial to modern treatment: Transfusion or hyper transfusion, coupled with iron eliminator, of Novartis, based in Basel, Switzerland, will enable the successful completion of bone marrow transplants, conduction of cord therapy umbilical’s, as well as other contemporary therapies. I can mention the former world tennis champion, American Peter Sampras, who has thalassemia, but there is also an excellent performance of his life. I read many articles about her, a noble man and full of courage. A living example for those who suffer from this genetic disease, but who follow a normal life thanks to efficient medication.

Some years ago I had a fortune, as my compatriot could have, to meet with Cooley's Anemia Foundation, New York. Gina Cioffi is a simple, cautious woman with over-experience in thalassaemia, sensitive to the state of Thalassaemia in Albania. She stressed me: "Research on genetic therapy is continuing with quick steps in the US, as an opportunity to achieve a cure for multiple illnesses." "To lead personal illness, this is learned," says the noble friend of Albanians, prof. Jean-Philippe Assal. He continues: "A patient who is suffering from a chronic disease should be taught to lead his illness, be helped to live better by having it." As a creator in Europe, the first unit of medicine and learning for diabetes, he then became the pioneer of therapeutic education. His guideline publication "Therapeutic education of patients with chronic illnesses" has also been translated into Albanian.

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The Albanian Diaspora and a prestigious foundation have begun their steps to help introduce modern techniques even in those areas of Albania where they are still not necessary tools for screening the disease as well as appropriate clinical treatment for children and adults. World renowned cardiologist, prof. A. Kalangos, recently sent 15 TVs and 15 DVDs to hospitals in Albania, where thalassaemic patients are treated. Translated authors' books of as prof. Alain Golay, prof. Jean-Philippe Assal, TIF and so on. The new steps that have been made in the fight against this genetic disease that have recently been transmitted to Albania, through fruitful exchanges with TIF and other European countries, but also elsewhere, have prompted us to encourage us to take in the Diaspora a modest initiative: a project for thalassaemia in Albania, as well as to expand it in Kosovo and elsewhere. On this occasion, through the newspaper Panorama, I would like to bring a human message: Let's hope that Albanian businessmen, as well as citizens in Albania and Diaspora, through this message will give their contribution to the Thalassaemia Association. Any assistance, even modest, of our compatriots, wherever they are, with money, equipment, with different opportunities for thalassaemia in Albania, would be welcomed by them.

* Associate Member of the International Thalassemia Federation (TIF) Associate of "Fondation Recherche et Formation pour l'Enseignement du Malade" in Geneva, Cultural Mediator

May 9, 2019