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Ukrainian-American Birth Defects Program
Workshop on phenylketonuria diagnosis and treatment issues
On September 21, 2001, a seminar dedicated to PKU-related issues (diagnosis, treatment, medical care of PKU patients in Ukraine) was held at the premises of the National University "Kyiv-Mohyla Academy". This seminar was partially funded by the Program for Appropriate Technology in Health (PATH) and was conducted under the aegis of the Ukrainian-American Birth Defects Program and with the participation of the Ukrainian Alliance for the Prevention of Birth Defects and "Ukraine-USA" Foundation.
Professor I. Baryliak, the President of the Ukrainian Alliance for the Prevention of Birth Defects, greeted the participants and spoke about the Alliance goals and objectives, as well as its role in solving problems associated with PKU related issues in Ukraine.
 The Conference Presidium. From left to right: Dr. L. Yevtushok, Dr. I. Barylyak, Dr. O. Sulima, Dr. I. Kharytonova |
Dr. N. Afanasiyeva, Ph.D., the Head of the Medical Genetics Center of the Autonomous Republic of Crimea, spoke about various aspects of 100% PKU screening of newborns, diagnoses confirming, medical care and special diet treatment of classic PKU cases when they are diagnosed on time. She proposed to equip medical genetics centers with a computer program application that would help calculate diets for PKU-affected patients.
Dr. Z. Zhyvats, Ph.D., the Head of the Odessa Inter-Regional Medical Genetics Center, spoke about medical care and treatment of children with PKU who were not diagnosed on time. She emphasized that standards regarding timely PKU diagnosis are not observed due to low percentage of newborns being screened for PKU in many Ukrainian oblasts. The cause behind this fact is that medical professionals do not receive enough budget funding (or receive none) to cover expenses associated with test-forms, reagents, old lab equipment repairs, or purchasing of new state-of-the-art testing equipment. She also gave examples of clinical cases and spoke about their experience in using protein hydrolysates without phenylalanine. Dr. Zhyvats emphasized the importance of dietary treatment for women of reproductive age who have PKU in order to prevent maternal PKU syndrome. She based her arguments on the facts about duration of diet treatment for PKU patients in different countries of the world. According to normative regulations that exist in Ukraine, children who have PKU should receive protein hydrolysates through centralized distribution services until the age of three (a directive of the Ministry of Health of Ukraine). Children from 3 to 14 years of age should receive protein hydrolysates paid for from local budgets.
 Dr. N. Afanasiyeva telling about PKU newborn screening program in Crimea |
 Dr. Z. Zhyvats (Odesa) during her report |
60 participants of the seminar took part in the discussion. They were 42 medical professionals from 18 oblasts and from Kyiv and 13 parents of children with PKU from 10 Ukrainian cities; representatives of the "Ukraine-USA" Foundation and PATH; representatives from firms "Nutritsia" and "Nutritech" in Ukraine.
Among the discussed questions were: newborns' PKU screening, the number of affected children in regions, the need for protein hydrolysates without phenylalanine and protein-free food, the necessity of dietician's participation in treatment of PKU children, and increasing medical professionals knowledge concerning PKU dietary management.
All the participants were unsatisfied with the level of newborns' PKU screening in some regions of Ukraine (Kiev, Odessa, Rivne, Lviv) and dietary food support, the problem of maternal PKU.
The Head of the Kiev Inter-Regional Genetic Center, Dr. Halahan pointed out that only medical geneticists should perform follow-up of PKU children, and that dieticians also have an important role in the management. In the Kiev Inter-Regional Genetic Center, protein hydrolysates (produced by "Milupa" Co) for PKU patients were clinically tested.
The similar clinical tests of "Tetraphen" (made by "Nutritek") were performed in the Kharkiv Inter-Regional Genetic Center. The tests were exclusively positive, but in the Kherson oblast, 3 PKU-affected children refused from "Tetraphen" because of side effects.
Some Oblasts of Ukraine have good experience in protein-free bread baking.
The Chief Neonatologist of the Ministry of Health of Ukraine professor Olena Sulima proposed to create and send to the Ministry the project of the National Campaign for "Newborns' Screening for Hereditary Diseases of Metabolism".
Ukrainian Alliance President professor Ihor Barylyak supported creation of a special Initiative Group for PKU problems. The Group aims to analyze the problem in Ukraine and make the proposals to the Ministry of Health of Ukraine about diagnosis, treatment and care of PKU children.
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Among the seminar's other initiatives for information support were:
The workshop resulted in a letter to the Ministry of Health of Ukraine about the most acute problems:
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21/January/2002 dc
