INTRODUCTION

The main purpose of this report is to highlight notions upheld by the World Alliance of Organizations for the Prevention of Birth Defects (WAOPBD) applied during the development of birth defects (BD) programs in Ukraine. (1-5)

Many of the implementations reported here were made possible by the Ukrainian-American Birth Defects Program funded by the United States Agency for International Development to facilitate the creation of the Ukrainian Birth Defects Prevention Alliance and birth defects surveillance, care, and prevention programs.

It is self evident that cultural and economic circumstances strongly impact BD programs. (6-8) Most recently, the WAOPBD published recommendations for BD care and prevention in developing countries. (9) This prompts us to point out that Ukraine is a highly literate society and that it does not fit well in the category of a "developed" nor a "developing" country. The efforts in Ukraine to enhance BD care and prevention may be of interest to others working with societies that also are not illiterate and not economically prosperous. In contrast to most "developing" societies that face rapidly growing populations, in Ukraine, an unprecedented drop in birth rates is taking place.

Separately, in a companion article, we describe our experiences with emphasis on the role played by the Internet and the worldwide web (henceforth both referred to as the web). This report can be viewed as a summary with further information to be found from the web site of the Ukrainian Birth Defects Prevention Alliance (henceforth referred to as Ukrainian Alliance). Note that the list of standard citations is expanded by references to information sources on the web.


REALITIES IN UKRAINE

International programs in Ukraine were virtually nonexistent until the restrictions imposed by Moscow vanished during the implosion of the USSR. August 24, 1991, Ukraine declared independence and began creating a government and foreign missions. A profound economic crisis and the need to provide care to nearly 20% of the population impacted by the Chernobyl disaster severely stressed healthcare resources. It is well known that Ukraine and Belarus have been experiencing an unprecedented epidemic of childhood thyroid carcinoma, in contrast to Poland, where preventive measures were taken.

Another reality in Ukraine is its heavy industrialization and related environmental degradation. Studies have shown that pollution per square meter in Ukraine is 6.5 times higher than in the USA and 3.2 times higher than in countries of the European community. It is estimated that environmental causes inflict 21% of all morbidity in Ukraine and that impure drinking water adds a further 13%. (10) 

Regarding pregnancy outcomes, one international study in two industrial cities in Ukraine is of particular interest. (10-13) Fetal mortality in Ukraine is high but some other indices are better than those for USA whites (premature deliveries). Regarding organochlorines in breast milk, the investigators concluded that levels were "higher than other reports from Europe but lower than reports from other parts of the world …". (14-15)

A variety of sources point out numerous factors in Ukraine that threaten prenatal development. In essence, the traditional Ukrainian diet is poor in micro-nutrients and Ukrainian habits favor the consumption of highly concentrated alcoholic beverages (vodka). There is practically no access to iodized salt, although there is awareness that the country has a considerable proportion of iodine-poor soil. A further threat to the unborn is tobacco smoking, which is vigorously promoted, particularly among the young, by transnational corporations. Surveys show that during this decade, for the first time, deaths exceeded the number of births by 310000 (1997); that in 4 years, the population of Ukraine decreased by over 2 million to a total of 51 million (1997); that induced abortions exceeded births; that live births decreased by 26% from 554000 (1993) to 389000 (1999); that infant mortality attributed to BD is nearly 30%; that marriage rates decreased and that the proportion of children reared "out of wedlock" has significantly increased in 7 years (14% in 1996). (10-13)


MARCH OF DIMES BIRTH DEFECTS FOUNDATION AND WAOPBD

The prevention of BD is a long held ideal that prompted the development of scientific societies dedicated to medical teratology and medical genetics. (15) In Western Europe and the USA, parental and other patient support organizations arose later with the aim to harmonize scientific advances with societal aspirations. The March of Dimes BD Foundation (MOD) was a pioneer in such efforts. In fact, to a great extent, the roots of the WAOPBD emerged from those of the MOD and the roots of the Ukrainian Alliance described here are intertwined with both. It is appropriate to recognize that the shared notions of these organizations can be traced to veritable pioneers. Among them, are President Franklin D. Roosevelt and Basil O'Connor, who developed the MOD. Modern teratology owes much to Dr. Joseph Warkany and medical genetics to Dr. Victor McKusick. The promotion of the implementations in Ukraine owes much to Dr. Jennifer Howse, President of the MOD who granted permission to the Ukrainian Alliance to adapt educational materials of the MOD for use in Ukraine. The Ukrainian Alliance has adopted and seeks to implement most of the ideas and principles of the MOD and WAOPBD. (1-5)


EARLY STEPS

Between 1992 and 1998, explorations in Ukraine created linkages among Ukrainian professionals and international counterparts. A network of Ukrainian leaders understood that BD broadly defined (a point stressed later) impose a heavy burden on Ukraine. The current Director of the Ukrainian-American BD Program, Dr. W. Wertelecki, and Drs. I. Baryliak and A. Serdiuk (former Minister of Health) invited Dr. M. Katz, as President of the WAOPBD and Vice President for Research of the MOD to visit Ukraine. Later, an international team of experts led by Dr. Jennifer Howse visited Kyiv. (Insert Figure 1) The team included Drs. J. Harris (California BD Monitoring System), L. Edmonds (Center for Disease Control), Y. Poortman (Vice President of WAOPBD) and M. Katz. Meetings with key Ukrainian healthcare leaders resulted in a document outlining recommendations that provided an initial template for the creation of the Ukrainian Alliance. (17)

Figure 1. Reception at the Mohyla Academy University of Kyiv during the summer of 1998. From left to right, Drs. V. Zamostian (Dean of the School of Ecology, Mohyla Academy University); I. Baryliak, W. Wertelecki, J. Howse, and M. Katz (see text).


In August 1998, USAID provided funding to initiate a Ukrainian-American BD Program. The program has the goal to: help Ukrainians to establish a BD Surveillance System using international standards; contribute to better care and prevention of BD; and help to create a Ukrainian Alliance. (17) To achieve these goals, the proposed strategies were: engage neonatologists to play a cardinal role in BD ascertainment and coordination of care; charge medical geneticists with the task to expand their clinical role to routinely include outlines for early anticipatory care and prevention of recurrence recommendations; and prompt the Ukrainian Alliance to become a forum where parents, patients, journalists, educators and interested public could exchange views with healthcare providers and other professionals cognizant of BD issues and committed to their prevention.

Following the departure of the international visiting team, the Ukrainian-American BD Program called a meeting with key Ukrainian healthcare leaders. The meeting was led by Dr. I. Baryliak, representing medical genetic services of Ukraine and attended by Dr. O. Sulima, Ukrainian Neonatologist In Chief, V. Berzhnyj, Ukrainian Pediatrician In Chief and N. Hoida, Director of Maternal Child Health in Ukraine, among others. A draft document proposing a Ukrainian Alliance was adopted. The creation of the Ukrainian Alliance received the endorsement from the highest level of professional and ministerial leaders to pursue implementations to create a forum where patients, parents, educators, and younger generations of healthcare providers would have a voice.


IMPLEMENTATIONS

Vigorous implementation began in the spring of 1999 with the training in the USA of "English competent" strategic Ukrainian leaders: neonatologists, medical geneticists, a librarian, a computer analyst, and a public health-public education coordinator. Later these leaders trained other professionals and established BD Centers in Rivne, Lutsk, and a core office in Kyiv. Currently, each BD team includes a number of medical geneticists, neonatologists, information officers, and computer experts. Neonatologists are responsible for BD ascertainment and to impact obstetrical and pediatric services in their respective regions to promote better diagnosis, continuity of care, anticipatory interventions and prevention of BD. Medical Geneticists are responsible for issues related to diagnosis, formulation of care protocols and prevention recommendations, data coding and registries, and the coordination of development, review and dissemination of information materials. The Information Officers are responsible to facilitate tele-medicine communications and for the printing and dissemination of information resources, particularly through the Ukrainian version of IBIS (International Birth Defects Information Systems). IBIS is a web-based information resource with over 3500 highly selected links to facilitate access to BD related information. The Ukrainian version of IBIS contains a rapidly growing number of "fact sheets", virtually representing the only web-based materials of this sort. Other aspects of IBIS, including its Russian, Spanish and other "non-English" components are described in a companion article.

After preparations during 1999, BD population based surveillance utilizing international methods began in January 2000. (19) Virtually all-malformed infants seen are photographed and their histories illustrated by digital images and then forwarded to our Center in the US for review and consultation with other experts. Eight months after starting surveillance, preliminary results were presented at the 1st International Symposium on Prevention and Epidemiology of Congenital Malformations, held in Cardiff, Wales, UK. (20) The data presented provoked considerable interest since nearly 50% of the oblasts (provinces or states) under surveillance have been impacted by Chronobyl, constituting a source of chronic low-dose radiation.

The creation of the Ukrainian Alliance began with the presentation of the consensus draft document, described earlier, to medical geneticists attending a national meeting held in May 1999. The initiative was approved, a Board of Directors was elected and principles to be incorporated into bylaws were accepted. The first groups to join the Ukrainian Alliance, were Medical Geneticists from all regions of Ukraine, except one. Currently, the Ukrainian Alliance has over one hundred member organizations and individuals representing a variety of interests and regions of Ukraine. (21)

Figure 2. Ukraine location map. The shaded regions indicate the areas with population-based BD Surveillance Systems. The stars indicate oblasts (State or Province) with representation in the Ukrainian Alliance.


A component of the USSR legacy in Ukraine is the rarity of volunteer non-governmental organizations (NGO) partly because complex bureaucratic procedures stifled their formation. It is an achievement that the Ukrainian Alliance was incorporated and legally registered on December 27, 1999. The fact that the "in-country" coordinator of the Ukrainian-American BD Program was assigned to the Ukrainian Alliance implies that the experience can be extended to parental groups interested in creating their own NGO's. The President and Vice President of the Ukrainian Alliance are Drs. I. Baryliak, who recently became a member of the Board of WAOPBD and O. Sulima, who vigorously endorsed the initiative to engage neonatologists in BD related activities. Further information about the Ukrainian Alliance is posted on the web (21). 

The Ukrainian Alliance chose, as a focal point of their activities, the prevention of neural tube defects (NTD), fetal alcohol effects, iodine deficiency mental sub-normality and developmental anomalies in orphans induced by institutional care deficits, (along with other issues). The strategies promoted include: creation of parental support groups; development of public and professional information materials and education programs; links with other organizations; use of IBIS to accrue and disseminate materials across Ukraine; develop new partnerships and search for resources to achieve long-term self sustainability.

For reasons of brevity, we illustrate the activities by the Ukrainian Alliance by alluding only to two activities, NTD prevention and promotion of parental support groups.

Regarding NTD, we note how preliminary BD surveillance data is playing an early role in boosting NTD prevention plans. Thus far, some key Ukrainian health leaders and even leading medical geneticists often express the view that NTD are "not a problem". Such belief originates from a conviction that in Ukraine, mandatory ultrasound screening of all pregnancies during the first trimester detects most instances of NTD, which is believed a cause for medical abortions. However, early BD surveillance data disputes such notions. In fact, there were 21 instances of NTD and a considerable proportion was not detected by prenatal ultrasound. It is indisputable that folic acid (FA) supplements could have prevented at least 16 of the 21 instances observed. The data also suggests that NTD in Ukraine may be high. Such facts facilitated the aim of the Ukrainian Alliance to induce oblast Governors to co-sponsor workshops with national and international experts about NTD prevention strategies. There is already a sense that FA fortification of flour may be recommended. Concurrent initiatives to prevent recurrence of NTD are also under development.

To conclude, the above shows how BD surveillance system in Ukraine is already playing a pivotal role in BD prevention and how the Ukrainian Alliance serves to facilitate exchanges between BD centers, oblast authorities and healthcare leaders, ministerial or otherwise.

The first patient-parent support groups interacting with the Ukrainian Alliance were those concerned with phenylketonuria (PKU). Screening for this disorder has virtually ceased in Ukraine and the Ministry of Health is no longer able to provide access to low phenylalanine (PA) nutrients. Most parents of PKU children can not afford to purchase such products in the open market and face the prospect of witnessing the mental status of their PKU children inexorably deteriorating. After an initial nationwide meeting with PKU parents (September 1999), a first of it's kind, 6 PKU parental groups and 4 PKU parental organizations were established. Among their achievements is that they prevailed on 4 bakeries (Kyiv, Crimea, Khmelnytsky and Kherson) to produce low PA baked goods. These successes are dampened by the failure thus far, to prevail on the Ministry of Health to supply access to affordable low PA nutrients. Currently, a similar approach is under development to assist parents of children with mucopolysaccharidoses and other disorders. During November 2000, a series of activities focused on fetal alcohol effects will take place.

The examples of the achievements and partnerships of the Ukrainian Alliance with other organizations are many. For brevity, we describe an outstanding partnership with the Horowitz Competition for Young Pianists. The ideal that music represents a universally understood language and that BD claim a heavy burden on the young of all societies, induced the organizers and performers to adopt as their motto "Harmony in a world free of birth defects". Thousands of Ukrainians heard the message that BD are preventable. Among the events sponsored were 24 concerts, radio and television appearances and billboards messages, not only in Kyiv, but also in many cities in Ukraine and beyond. (22)

Figure 3. Maestro Mykola Suk with Mr. Dmytro Tavanets (Left) and Iryna Sapozhnikova (Right) during a performance of a piano concert for four hands, part of a concert series in Kyiv "Young Prizewinners of the International Horowitz Piano Competition" Birth Defects Prevention (May 31, 2000).


The apex of most efforts of the Ukrainian Alliance will be the creation of a BD Information and Resource Center for Ukraine. The mission of the Center will be dual: to provide information and knowledge, as well as to serve as an ombudsman for international support organizations interested in gaining a presence in Ukraine. The Ukrainian-American BD Program is prepared to provide the necessary resources to stimulate partnerships linking BD Centers and members of the Ukrainian Alliance with national and international counterparts. 


LESSONS AND CONCLUSIONS

The experience in Ukraine regarding the notions promoted by the MOD and WAOPBD, prompts us to comment about four concepts: the key role of BD surveillance; a broad definition of BD; "parental" support groups; and "developing" countries.

The impact of credible BD surveillance results was immediate. Oblast authorities issued directives mandating all neonatologists to participate in BD surveillance. Furthermore, authorities also proposed to develop in parallel, a registry of all neonates. The BD surveillance, along with the neonatal registry has become core resources for oblast health planners.

The BD concept, as well as the "genetic counseling" idea does not translate well in Ukraine. The ingrained tendency is to view BD in the restricted sense of "structural malformation" or as "genetic" defects. The fact that the WAOPBD adopted a broad definition of BD was most useful because it facilitated the understanding that mental sub-normality, metabolic disorders, and late manifesting genetic alterations are also BD. (23) Furthermore, "Children of Chornobyl" and the growing number of those with congenital syphilis and HIV also fall within the scope BD. Once a broader view of BD is accepted, neonatologists, pediatricians, and other healthcare professionals are more interested and prone to join forces with medical geneticists. We found that an emphasis on "genetics" or "teratology" may intimidate most healthcare providers with little knowledge of these disciplines and deter them from partnering in BD programs. Translation of "genetic counseling" in Ukraine is facilitated by our use of concepts inherent in "prognosis", "family planning", and "information". Regarding "parental" support groups, in Ukraine there is need to develop "support groups" that are inclusive of parents as well as of professionals. Our experience indicates that fostering meetings between parents, physicians, other healthcare providers, and administrators has produced better understanding of each other's needs and limitations. Concerning "developing" countries, the grit of this term and its application to Ukraine is often inaccurate and counter productive. Most Ukrainians will admit that their society is in crisis and that their country is in a "transition". Not infrequently, Ukrainian leaders bristle when representatives from "developed" nations fail to recognize that many health and other societal indices in Ukraine are in fact "better" than those in "advanced" societies, including for instance, some indices for USA "whites".

In summary, among the most useful implementation strategies alluded to above and described more fully in IBIS, are: the importance of training abroad key strategic BD program leaders; charging neonatologists with tasks concerned with BD ascertainment and serving as a link between obstetricians and pediatricians; to include in BD teams, English and web competent information officers; to promote tele-medicine linkages with international counterparts; to gain NGO status; to create and disseminate information materials using web technology; to use BD Centers as outreach locations for the Ukrainian Alliance; and to use the Ukrainian Alliance to promote an ongoing dialog between all parties interested in BD.
Finally, a Ukrainian Presidential Act concerned with health, states in part "… promote healthy life styles … avoidance of tobacco … alcoholism … preservation of the genome … prevention of congenital disorders … ". In response to a recent request by the Ministry of Health to report on the most significant events during the year 2000, the authorities of one oblast replied " … new resources permitted … the creation of a registry of all neonates and of all those with BD … the creation of a BD Information Center … with the aim to educate physicians and the population ... the introduction of tele-medicine procedures ... charging rural neonatologists with the responsibility to provide BD care and information ... such implementations fulfill the directives of a Presidential Decree of November 11, 1999". We would like to believe that to some degree, the excerpts shown above reflect the hard work by many members of the Ukrainian BD Alliance under most difficult circumstances. We would also like to believe that the work and experiences in Ukraine will encourage others in similar endeavors in other parts of the world and hope that our Ukrainian colleagues will find partners, supporters and friends to help them in their efforts.

REFERENCES AND CITATIONS

1. Wertelecki, W., Katz, M: Una alianza mundial para la prevención de anomalias del desarrollo. MEDICO Interamericano 5:185-191 (1995).

2. Wertelecki, W., Katz, M.: Prevention of Birth Defects – A Task for A World Alliance. Jpn. J. Hum. Genet. 40(3):295-303 (1995). (In Japanese)

3. Wertelecki, W., Katz, M.: Prevention of Birth Defects – A Task for A World Alliance. J. of Ukrainian Med. Assn. 42:137-140 (1995). (In Ukrainian)

4. Wertelecki, W., Katz, M.: Prevention of Birth Defects: A Task for a World Alliance. Acta Paedia. Sinica. 37(3):168-172 (1996). (In Chinese)

5. In WAOPBD web site.

6. Jayasekara, R., et al: Acceptance of Genetic Services: A Study of Physicians in Colombo, Sri Lanka. J. Biosoc. Sci. 20:1 (1988).

7. Chen, H., Wertelecki, W.: Genetic Services in the United States. Jpn. J. Hum. Genet. 39(2):275-288 (1994).

8. Penchaszadeh, V.B.: Developing Genetic Services in Developing Countries. in Genetics and Public Health in the 21st Century, Oxford, Univ. Press, 2000.

9. Penchaszadeh, V.B., et al: Services for the Prevention and Management of Genetic Disorders and Birth Defects in Developing Countries. Community Genet. 2:196 (1999).

10. Little, R.E., et al: Outcomes of 17137 Pregnancies in 2 Urban Areas of Ukraine. Am J Public Health. 89:1832 (1999).

11. Berdnyk, O., et al: The Health of Women and Children in Ukraine. 1997 report by United Nations Development Program Office in Ukraine, UNICF, World Health Organization and World Bank, in corporation with The Cabinet of Ministers of Ukraine and Ministry of Health of Ukraine.

12. Monaghan, S.C., et al: Preterm Birth in Two Urban Areas of Ukraine. Obstet Gynecol. 95:752 (2000).

13. In IBIS web site: Selected Vital and Health Statistics from Ukraine. 

14. Gladen, B.C., et al: Organochlorines in Breast Milk from Two Cities in Ukraine. Environ Health Perspec 107:459 (1999).

15. Gladen, B.C., et al: Polychlorinated Dibenzo-p-Dioxins, Polychlorinated Dibenzofurans, and Coplanar Polychlorinated Biphenyls in Breast Milk from Two Cities in Ukraine. J Toxicol. Environ. Health, Part A, 58:19 (1999).

16. Wertelecki, W.: Of Dreaming on Solid Grounds and Silent Triumphs of One Man: A Story About Josef Warkany. Am. J. Med. Genet. 33:522 (1989).

17. Howse, J.: International Visiting Team to Kyiv Report. in Ukraine Alliance web site. 

18. In IBIS web site: Ukrainian-American Birth Defects Program. 

19. In IBIS webs ite: Wertelecki, W.: Illustrated Progress Report - Implementations sponsored by the Ukrainian-American BD Program. Spring 2000. 

20. In IBIS web site: Baryliak, I., et al: Birth Defects in Ukraine: Surveillance-Care-Prevention Introduction of International Standards. 

21. In IBIS web site: Ukrainian Alliance for the Prevention of Birth Defects. 

22. In IBIS web site: Kharytonova, I: Harmony in a World Free of Birth Defects - Young Prizewinners of the International Howowitz Piano Competition Promote the Ukrainian Initiative for Birth Defects Prevention. 

23. In IBIS web site: Definitions of: Birth Defects; Teratogen; Genetic Counseling. 

LEGENDS

Figure 1. Reception at the Mohyla Academy University of Kyiv during the summer of 1998. From left to right, Drs. V. Zamostian (Dean of the School of Ecology, Mohyla Academy University); I. Baryliak, W. Wertelecki, J. Howse, and M. Katz (see text).

Figure 2. Ukraine location map. The shaded regions indicate the areas with population-based BD Surveillance Systems. The stars indicate oblasts (State or Province) with representation in the Ukrainian Alliance.

Figure 3. Maestro Mykola Suk with Mr. Dmytro Tavanets during a performance of a piano concert for four hands, part of a concert series in Kyiv "Young Prizewinners of the International Horowitz Piano Competition" Birth Defects Prevention (May 31, 2000).

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