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Ukrainian Association of COMPUTER MEDICINE

Birth Defects Ukraine

1998

"I felt I was witnessing something very special ...scientists who were transitioning ... to the intellectual freedom that comes with democracy."

J. Harris

Birth Defects and Ukraine

A Report by W. Werteleckyj. M.D.

This account summarizes events that led to the creation of the Ukrainian Alliance for the Prevention of Birth Defects and forthcoming programs to monitor birth defects in two regions of Ukraine under the sponsorship of the United States Agency of International Development. Included also is a report of a visit by an international team of birth defects experts and the March of Dimes, who visited Ukraine during the Spring of 1998. These events represent the result of long standing efforts by the members of the Department of Medical Genetics of the University of South Alabama and Ukrainian counterparts under the aegis of the Ukrainian Ministry of Health.

Birth defects are a leading cause of infant mortality, as well as a main source of lifelong human disabilities. Mental retardation alone burdens at least 3% of human beings. Advances in genetics, environmental sciences, public health and other disciplines have impacted public perceptions. Thus, it is increasingly recognized that birth defects can be prevented and that the fate of those afflicted can be greatly ameliorated.

There is a growing public consensus that human rights include the right of children to be born free from preventable birth defects. Birth defects inflict a heavy burden on all societies and pose a serious challenge to the health of children of all races, ethnic and cultural groups. A World Alliance for the Prevention of Birth Defects, fostered by the March of Dimes, seeks to encourage sharing efforts to eradicate preventable congenital anomalies.(1)

In the U.S., the efforts by the March of Dimes and by many others, induced the U.S. Congress to enact the 1988 "Birth Defects Prevention Act" (S419) which calls for " ... collect, analyze and make available data on birth defects ... to provide information and education to the public on the prevention of such defects ... establish and maintain a National Information Clearinghouse on Birth Defects ...". A similar mandate is applicable to Ukraine.

In Ukraine, the natality rate has plummeted from 15.5 births per 1,000 population (1977-80) to 9.7 per 1,000 population (1993-94) representing nearly a 38% decline. Such dramatic demographic changes reflect dramatic problems or at least dramatic perceptions of problems.

The Chornobyl nuclear power plant disaster contaminated 41,000 square kilometers or the equivalent of 15% of the Ukrainian territory. Pollutants by virtually unregulated industrial sources violate air quality regulations in at least 18 of 52 Ukrainian cities.(2) Raw waste water on the order of 1 million cubic meters is dumped into the environment annually. Heavy industries associated with ore processing, chemical works, and the military, produced and continue to produce vast amounts of waste which are dumped untreated in landfills. The recent report of increased constitutional genetic mutation rates, attributed to the Chornobyl accident and published in the reputable journal, "Nature" (Dubrova, Y.E. 380:683, 1996) has reinforced public perceptions of genetic risks to Ukrainian children existing now or to be conceived. Deteriorated water supplies, lack of access to vitamins, iodized salt and other micro-nutrients such as folic acid, which are essential for normal embryonal development, compound public awareness of reproductive risks in Ukraine.

Admittedly, the reasons for the dramatic decline of birth rates in Ukraine are multiple and complex. Early predictions, particularly by those who tended to minimize estimates of the biologic consequences of Chornobyl and who branded public concerns as "radiophobia" have eroded public trust in radiobiology experts. (3) The veritable ongoing epidemic of radiation-induced childhood thyroid carcinoma and current concerns that it may be followed by radiation-induced childhood leukemia reinforces public distrust and concerns. Regarding birth defects in Ukraine, contradictory statements and claims have been made. Some experts reported that there were no measurable effects attributable to the Chornobyl disaster while others are convinced that in some regions impacted by Chornobyl radiation or other forms of pollution, birth defects rates have reached epidemic proportions. In any case, parents and prospective parents should know if the frequency or types of birth defects in Ukraine are different from those elsewhere. Ukraine can answer such concerns by adopting international monitoring standards used by member nations of the International Clearinghouse for Defects Monitoring Systems. With credible birth defect data, implementation of health care and prevention programs will be facilitated.

Initial Steps

Regarding international linkages, the USSR purposely centralized such activities in Moscow and this legacy serves well the current Russian Federation. However Ukraine, as a country long denied independence but now a newly independent state, must forge international linkages and partnerships with limited resources at its disposal. My initial acquaintance with Ukrainian health care specialists was greatly facilitated by events organized by the World Federation of Ukrainian Medical Associations, ably headed by Dr. Paul J. Dzul. Promptly, it became obvious that Ukrainian health care leaders were committed to introduce reforms and establish international partnerships. Formal and informal discussions with Drs. Andriy M. Serdiuk, the current Ukrainian Minister of Health (then Director of the Scientific Center of Hygiene of Kiev), Ihor R. Baryliak (Coordinator of Genetic Services for Ukraine), many Ukrainian medical geneticists and with countless others, framed a vision and ideas to be adopted as an agenda to address the question of birth defects in Ukraine. In parallel, the importance of electronic information technology was discussed with Dr. Oleg Yu. Mayorov, who with other colleagues advocated the creation of the "Ukrainian Association of Computers in Medicine". This society, now headed by Dr. Victor M. Ponomarenko, as President and Dr. Oleg Yu. Mayorov as Chairman of the Scientific Counsel, links Ukraine with similar organizations in the world.

Among inaugural steps taken to link Ukrainian specialists in birth defects with their international counterparts, two deserve to be highlighted. A distinguished UkrainianAmerican scientist, Dr. Michael Kasha, suggested that I should accept an opportunity to testify to the U.S. Senate concerning Ukrainian children and Chornobyl. This event established a basis for an on-going dialog with U.S. legislators. A second inaugural step was taken by Dr. Andriy M. Serdiuk, who welcomed the suggestion to organize an encounter in Lviv for Ukrainian specialists to meet with Dr. Michael Katz, Vice President for Scientific Research, March of Dimes National Foundation. At the time, Dr. M. Katz was organizing the World Alliance for the Prevention of Birth Defects. During the first formal meeting of the World Alliance, held in The Hague, Netherlands, a manifesto was drafted and Dr. M. Katz was inducted as the first President. Inducted as Vice President and Secretary/Treasurer were Mr. Ysbrand S. Poortman and Dr. W. Werteleckyj, respectively. At the conclusion of the conference in The Hague, I traveled to Kiev under the sponsorship of the March of Dimes to initiate the planning to expand international linkages with Ukraine. One suggestion was to explore the framing of a visit to Ukraine by an international team of experts in birth defects.

Plans for a visit to Ukraine by international experts were discussed with members of the American-Ukrainian Medical Sciences Group (Drs. Tatiana T. Antonovych, Larissa T. Bilaniuk, Myroslaw M. Hreshchyshyn, Michael Kasha, Ihor J. Masnyk, A.D. Mosjiczuk, and W. Werteleckyj). A conference was held in the Ukrainian Embassy in Washington during which Drs. I.J. Masnyk and I introduced Dr. M. Katz to Ambassador Dr. Y. Shcherbak and discussed prospects of a visit to Ukraine. Another conference was held during which Drs. Michael Katz and Jennifer Howse (President of the March of Dimes) exchanged views with Drs. Oleg Yu. Mayorov and myself.

To expand the scope of the agenda, perceptions regarding the Chornobyl disaster, birth defects, teratology and other topics related to child health and birth defects in Ukraine were explored with distinguished U.S. Scientists (Drs. B. Childs, V. McKusick, C. Gajdusek, J. Yamasaki, J. Gofman among others). A special symposium "Chornobyl, Implications of a Decade" was organized on occasion of the IX International Congress of Human Genetics, held in 1996. Two participants of the symposium, Drs. James Neel and Lynn Anspaugh, recognized world authorities in genetics and radio-biology, reviewed the current developments. The former wrote a paper with an emphasis on Chornobyl, "The Genetic Effects of Ionizing Radiation on Humans" and the latter elaborated upon "The Radiologic Impacts of the Chornobyl Accident; Genetically Significant Doses, Thyroid Doses and Thyroid Cancer". The experiences gathered in Ukraine and Belarus were summarized by Drs. I. Baryliak and G.I. Lazjuk, respectively. Among other participants were geneticists from various nations. This symposium was partially sponsored by private donations, the National Institute of Child Health and Development and the Ibero-American Society of Human Genetics. Symbolically, this event coincided with the Independence Day of Ukraine and was reported by the "Lancet".(4)

This account would be deficient without alluding to the unstinted support of the leaders of the Cancer Federation, Inc. of Banning, CA, members of the Ukrainian Medical Association of North America, the University of South Alabama, the staff of our Department of Medical Genetics and many other who remain anonymous. We would also like to recognize the support of area physicians and the residents of rural counties in South Alabama who formed "Helping Hands International", an organization that provides humanitarian assistance to Gorlovka, Ukraine and which has sponsored the health care of Ukrainian children in need of eye care or restorative surgery due to burns. This organization is headed by Mr. K. Payne with Dr. W. Werteleckyj as Medical Director. One Alabamian stands out, U.S. Representative Sonny Callahan, who stepped forward to assist Ukrainian orphans and others needing help. Mr. Callahan introduced language into the foreign assistance bill (H11910) which states in part "... fear of birth defects in the regions affected by the Chornobyl accident ... The managers encourage ... support programs to reduce birth defects ... in affected regions ...".

International Visiting Team Report

Dr. J. Howse, President

March of Dimes Birth Defects Foundation

The major impetus for this visit was to establish international links with Ukrainian professionals and gather information about the health status of Ukrainian children, the effects of radiation from the Chornobyl nuclear accident, and the impact of birth defects in Ukraine. The delegation had three primary objectives:

Learn and exchange views

Establish channels for on-going communications and technical assistance.

Establish a basis for the formation of a Ukrainian Alliance for Birth Defects Prevention and thereby connect Ukrainian health professionals and parents to a world community of concern.

Following an official invitation by the Minister of Health of Ukraine, Dr. A.M. Serdiuk, preparatory arrangements were coordinated by myself on behalf of the visitors and Drs. I. Baryliak and V. Zamostian on behalf of the Genetics Services Program for Ukraine and the Kiev Mohyla University. The visit took place in Kiev during March 13-16, 1998.

The visitors were:

Dr. Larry Edmonds, State Services, Division of Birth Defects Surveillance, Centers for Disease Control and Prevention

Dr. John Harris, Director, California Birth Defects Monitoring System

Dr. Jennifer Howse, President of the March of Dimes

Dr. Michael Katz, Vice President for Research, March of Dimes and President of the World Alliance for the Prevention of Birth Defects

Mr. Ysbrand Poortmann, European Alliance of Genetic Support Groups

Dr. Wladimir Werteleckyj, Chair of Medical Genetics, University of South Alabama

The visitors were welcomed by Drs. Baryliak and Zamostian and introduced to Ukrainian participants. The Ukrainian experts included representatives from genetic centers, scientific institutes, the Ministry of Health, regional health administrations (Rivne and Volyn), professional societies (pediatrics, neonatology, obstetrics, perinatology) and advocacy groups, among others. In addition, the visitors met with students and faculty of the Mohyla University after a welcome by its President, Dr. Vyacheslav Brioukhovetsky. Some of the visitors were given a special briefing by representative Wladimir M. Yatsenko, head of the Chornobyl Commission of the Parliament.

After three days of presentations and discussions held at the Ministry of Health and the Mohyla Academy, several opinions emerged and propositions adopted:

Chornobyl is writ large in the psyche of Ukrainians. The people project their fears and their economic, social and medical problems on the nuclear accident and its aftermath. We also learned from Mr. Yatsenko, a member of Parliament, that presently 10% of the Ukrainian national budget is devoted to Chornobyl-related activities, such as contamination clean-up, reactor start-up, citizen relocation and medical treatment issues. There has been a 30% decline in the birth rate over the last several years, and many of the assembled Ukrainian representatives attributed this decline to Chornobyl.

Birth Defects Surveillance - There is great interest in this subject. Presently some very basic data is maintained by the Ministry of Health, but the Ukrainian physicians and scientists emphasized the importance of building an improved system and upgrading the quality of data. Currently there is a proposal pending to the United States Agency for International Development (USAID) for pilot surveillance programs to be established in the regions of Rivne and Volyn, the areas most impacted by Chornobyl.

The Volyn and Rivne regions in Ukraine are among the areas where new on-going monitoring systems for birth defects are highly desirable.

Birth Defects Prevention - This area is of significant interest to the Ministry of Health, especially to Dr. R. Bohatyrova, the Deputy Minister for Maternal and Child Health, to Dr. Barilyak, and the regional physicians and geneticists. Various programs were discussed, including the need for folic acid and reduction of tobacco and alcohol usage.

Financial support is critically necessary to propel birth defects surveillance and prevention. Several visitors offered to participate in the development of funding proposals.

A Ukrainian Alliance for Birth Defects Prevention will be XXregistered to gain legal status. The Coordinators will be Dr. I. Baryliak and Dr. W. Werteleckyj will serve as its International Liaison.

The Centers for Disease Control and Prevention will provide ongoing technical assistance in the design and operation of Ukrainian birth defects surveillance systems.

The European Alliance for Birth Defects Prevention will provide planning assistance and critique the proposed plan of the Ukrainian Alliance.

The March of Dimes will send a research expert to Kiev to provide technical assistance for writing research grant applications with relevance to birth defects prevention. Further, the March of Dimes will provide copies of its educational materials to Dr. Barilyak and Dr. Vitali Zamostian, Chair of Environmental Science, Kiev - Mohyla Academy. It is understood these materials can be translated into the many languages spoken in Ukraine and then distributed as needed.

The California Birth Defects Monitoring Program has pledged its support to participate in the development of funding requests for a Ukrainian Birth Defects Surveillance System.

The University of South Alabama, Department of Medical Genetics will continue to provide logistical support for international linkages with Ukrainian birth defects programs. An internet Ukrainian-International hub will be developed.

Participants were pleased with the hospitality and genuine warmth extended to them by their Ukrainian colleagues. It was evident that Ukrainian professionals were enthusiastic, competent and possessed the skills required to establish a Ukrainian Birth Defects Surveillance and other research programs. One visitor wrote "I felt I was witnessing something very special ... scientists who were transitioning ... to the intellectual freedom that comes with democracy."

The above expresses an overall view of the visitors. The visit was successfully concluded and we wish now to express our collective gratitude to our hosts.

Respectfully submitted on behalf of the participants July 1,1998

Future steps

Recently, the University of South Alabama and the USAID have signed a cooperative agreement to develop pilot birth defects surveillance systems that support birth defects registration and epidemiology utilizing international standards. The agreement also calls for the development of prevention programs and the strengthening of a Ukrainian Alliance for the Prevention of Birth Defects. We anticipate that informational resources relating to birth defects and prevention/management approaches will require substantial reliance on electronic-based information (Internet).

In addition to the above cooperative agreement, the Ukrainian Alliance for the Prevention of Birth Defects seeks sponsors and participants in its plan to develop a "Ukrainian Birth Defects Genetics Information Center". In genetics, electronic media is rapidly complementing traditional print media. In this regard, there are plans to transfer classic printed scientific materials to Ukraine, as resources permit. Concurrently, the development of an Internet-based International Birth Defects Information System (IBIS) is under development. We invite contributions to quicken the realization of these plans.

To close, this report does not include a list of individuals who highly deserve an acknowledgment. Such an attempt would be imperfect since so many contributed anonymously. Instead, my hope is that this whole report will stand as an acknowledgment to all who helped and to all who were interested.

Respectfully submitted,

Werteleckyi, M.D.

August 31, 1998

IBIS

International Birth Defects Information System

CITATIONS

(1) W. Wertelecki and M. Katz. "Prevention of Birth Defects A Task for a World Alliance": Acta Paed Sin:3, 1996 and Jpn J Hum Genet 40; 295, 1995 and Medico Interamericano 5; 185, 1995 and J Ukrainian Med Assn 42; 137, 1996.

(2) http://www.freenet.kiev.ua/ciesin/Reports/backgr.htm

(3) K. Baverstock. "Chernobyl and Public Health". BMJ: 316; 952, 1998

(4) G. Widney, "Dealing with Chernobyl's Genetic Legacy", Lancet 348:748, 1996.

ILLUSTRATIONS

The photographs of Kiev churches are by Dr. W. Werteleckyj. The drawings of Ukrainian landscapes are from "Rodovid", a Journal of Ukrainian Ethnology and Folklore, by permission of its Editor and Publisher, Ms. L. Lykhach. The drawing depicting a village before and after the Chornobyl disaster was selected from a collection of drawings by school children donated by Dr. V. Borysenko. The ink drawing of a Ukrainian bard, c. 1 934, is by an art student from Ostrog, Ukraine. The photographs depicting the participants are by Dr. L. Edmonds; the upper photograph, from left to right, shows Dr. M. Katz, Mr. Y. Poortman, Dr. J. Harris and Dr. J. Howse; the central photograph shows Drs. V. Zamostian, I. Baryliak, L. Edmonds, W. Werteleckyj and J. Howse; the lower photograph shows the visitors and their Ukrainian colleagues.

OUR SPECIAL THANKS TO THE CANCER FEDERATION, INC.

For a span of several years, the Cancer Federation, Inc. has generously contributed funds to make our pursuits possible.

ACKNOWLEDGMENTS

We wish to thank Ms. R. Broos and Mr. G. Widney for their assistance and Mr. L. Fletcher for the graphic design and typesetting.

NOTE: Copies of this report and the cited papers "Prevention of Birth Defects - A Task for a World Alliance" and "The Genetic Effects of Ionizing Radiation on Humans" are available upon request. Tax deductible donations are sought for the US-Ukraine Project, and should be made to the University of South Alabama Medical Sciences Foundation.

US - Ukraine Project

Department of Medical Genetics,

University of South Alabama

307 University Boulevard, Room 214 CC/CB,

Mobile, AL 36688-0002

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