Dear members,The mission of the March of Dimes Birth Defects Foundation is to improve the health of babies by preventing birth defects and infant mortality. March of Dimes Global Programs builds on the Foundation's strengths by developing and implementing innovative programs to promote perinatal health worldwide.
This electronic newsletter provides you with announcements about resources and activities of the March of Dimes and its partners, promising new research results, upcoming conferences and other useful topics. Earlier issues of the newsletter, as well as additional information about the March of Dimes and its Global Programs, can be found at the bottom of this page.
The Example of South Africa - Confronting the Silent Congenital Pandemic
The last half-century has seen a revolution in medical genetics and genomics. These advances have almost exclusively benefited those living in industrialized countries, in particular those who could understand and afford them. For the more than 5 billion people living in lower-resource countries, medical genetic services have been incorrectly considered to be too high-tech, expensive and not a priority. The myth exists that the health services of these countries need to focus mainly on infectious diseases and malnutrition. Little recognition is given to the fact that 63 percent of the world’s nations have substantially reduced infant mortality from malnutrition and infection and that for them birth defects are becoming a significant contributor to infant and childhood mortality and morbidity.
Annually, over 7.3 million children are born in lower-resource nations with serious birth defects. A minimum 3.3 million of these children will die before the age of 5 years. This is greatly in excess of the numbers previously documented and reflects the limited attention paid to birth defects, which globally have as much significance for childhood health as HIV/AIDS, TB, or malaria.
The lack of attention by policy makers and funding agencies to the problem of birth defects in lower-resource countries is due, in part, to the outmoded stereotype that little or nothing can be offered to remedy this situation. In fact, basic care offered through primary health services can relieve suffering and prevention using public health approaches is effective. Experience demonstrates clearly that programs of care and prevention can eliminate up to 70 percent of the death and disabilities resulting from birth defects and, in the process, contribute to the overall strengthening of health services.
It is, therefore, essential that international organizations and governments recognize the global toll of birth defects, particularly in lower-resource countries, and both strengthen periconceptional health services and begin to include medical genetic services in their planning. Many are beginning to do so. In 1999, WHO published a report outlining a comprehensive plan to strengthen genetic medicine at the primary care level. The plan, outlined in the report, Services for the Prevention and Management of Genetic Disorders and Birth Defects in Developing Countries (WHO, 1999), recommended increased attention to patient care and prevention through community education, population screening and genetic counselling, while highlighting the importance of basic reproductive health prevention approaches conducted in parallel. Implicit in the report was a recommendation for a project that would establish pilot projects in medical genetics education in designated countries in different regions of the world. This report was followed a year later by another WHO report, Primary Health Care Approaches for Prevention and Control of Congenital and Genetic Disorders, which supported the findings of the 1999 report and reiterated, in addition, the need to embed genetic services at the level of primary care.
Few national governments in lower-resource countries have followed the recommendations in the WHO reports. One government that has is the Republic of South Africa. Host to the First International Conference for the Care and Prevention of Birth Defects in Developing Countries in 2001, South Africa published national guidelines for the management and prevention of genetic disorders, birth defects and disabilities that same year. They have also provided funding for the education of nursing staff in primary health care and the development of educational material for the public. The most recent development in South Africa has been the acquisition of funding for posts for the training of medical geneticists and for their employment once qualified. The national plan calls for is to have five academic medical genetic centers of excellence by 2010, staffed with medical geneticists, scientists and counselors, and with cytogenetic and molecular laboratories. These centers will work closely with nursing staff and doctors in primary health care and with pediatricians and obstetricians in secondary health care to provide medical genetic services for South Africa.
Recognizing South Africa’s leadership, the March of Dimes in 2002 began a three-year project in South Africa to develop a Medical Genetics Education Program (MGEP) for registered nursing staff, one of the recommendations in the National Policy guidelines. Nurses play an important role in primary health care delivery in South Africa and are key providers in rural areas. March of Dimes Global Programs partnered in this endeavour with the South African Inherited Disorder Association (SAIDA), a nongovernmental organization that has also overseen development of a distance learning Birth Defects Manual, as part of the Perinatal Education Programme Series (see the URL at then end of the article for more information on the Perinatal Education Programme Series).
The MPEG curriculum for registered nursing staff is currently being taught in several provinces in South Africa as a pilot program before being introduced nationally. In addition, SAIDA and the University of the Witwatersrand are developing a more comprehensive medical genetics education curriculum for physicians with funding from the March of Dimes, as well as an interactive CD-ROM based on the March of Dimes Genetics & Your Practice,™, a CD-ROM curriculum widely used in the United States. This adaptation will be used for continuing professional development of physicians.
For more information on the Perinatal Education Programme Series in South Africa including the Birth Defects Manual, visit http://www.pepcourse.co.za/. The SAIDA website is http://sunsite.wits.ac.za/saida.
IMPROVING PERINATAL HEALTH
IN SOUTH INDIA
As of 2003, there were 1,065,462,000 people in India, a country with an infant mortality rate of 63 per 1000 live births.(1) Between 1995 and 2000, the neonatal mortality rate averaged 43/1000. During this period, India also recorded the world's highest rate of low birth weight births (33/1000), resulting in an estimated 8,081,370 low birth weight births per year. In human terms, this translates into an estimated 1,053,027 neonatal deaths per year and a high level of infant illness and disability. (2)
India also has among the highest maternal mortality rates in the world, estimated at 540 maternal deaths per 100,000 live births in 2000.(1) Throughout most of the country, women do not have adequate access to health care. The World Health Organization reports that only 62 percent of Indian women have one or more antenatal visit at a clinic or hospital, only 26 percent of births occur in a hospital and only 35 percent of women have a skilled attendant present at delivery. (3)
Several recent reports on health and family welfare in India have recommended that primary health care centers be strengthened with adequate staffing and equipment and that programs focus on human resource development and continuing education, quality assurance and the building of public awareness regarding health and health care facilities. Recommendations also include improving communications to support development of referral systems among the primary, secondary, and the tertiary hospitals; coordination between health care programs; and building of partnerships with voluntary agencies to improve health and overall quality of life.
Health Care for Women and Infants in South India
Although the national government is striving hard to implement many programs to improve health care, improvements in health services for women and infants require external funding and other programmatic support. In the district of Belgaum in south India, the services of a leading private hospital, the Karnataka Lingayat Education Society (KLES) Hospital and the Jawaharlal Nehru (JN) Medical College, complement government health services. In the region served by the hospital, both maternal and infant mortality rates are somewhat lower than for India as a whole. Nevertheless, the major causes of mortality and morbidity, including birth asphyxia, low birth weight and infections, reflect continued limited access to health services, poor sanitation and poor nutrition. The most common birth defects seen in the pediatric population include congenital heart disease, cleft lip/cleft palate and neural tube defects.
As elsewhere in India, threats to the health of women and newborns vary by socioeconomic status. Members of poorer households suffer from inadequate caloric intact and micronutrient deficiencies, including iron, zinc, folic acid, vitamin A and iodine; lack of access to clean water and sanitary facilities; and exposure to industrial toxins and pesticides. Women in poorer families are more likely to marry early and have children while still in adolescence.
Although health care utilization in Belgaum District is higher than in India as a whole, physicians at the KLES Hospital estimate that 30 percent of women receive prenatal care in the first trimester, while one in ten women receives no prenatal care. Proximity to home is a major criterion influencing where women receive care, with most going to a local clinic. In Belgaum District, an estimated 60 percent of women give birth outside the home, the majority in secondary level hospitals.
The March of Dimes - JN Medical College, Belgaum Partnership
Working in partnership with the March of Dimes, a team of physicians at the KLES Hospital Perinatal Centre and JN Medical College have identified several critical needs for improving the health of women and infants. These include improving health care coverage in rural areas, improving the supply of medicines and providing transportation for referrals of critical cases. There is also a need to improve training of community health workers and midwives, and to train doctors for service in rural areas. Additionally, there is a need to educate parents about good prenatal and perinatal health.
The March of Dimes partnership project in India will educate primary care physicians, community health workers and midwives, and women and men of reproductive age about perinatal health. The project is divided into two phases. During Phase 1, a training curriculum is being developed at JN Medical College by the team of physicians at the Perinatal Centre. The curriculum is derived from March of Dimes educational materials. The team is creating three sets of modules, one set each for primary care physicians, community health workers and midwives, and men and women of reproductive age. During Phase 2, JN Medical College staff will implement the training at three primary care centers in Belgaum District. The project is modeled on successful March of Dimes projects in other regions of the world and complements other initiatives being undertaken at the KLES Hospital Perinatal Centre to improve clinical care in Belgaum District. The partnership will serve as a model for replication elsewhere in India.
(1) UNICEF. Available on line at http://www.unicef.org/infobycountry/india_statistics.html
(2) Save the Children. State of the World's Newborns. Washington DC, 2001.
(3) World Health Organization. Available on line at http://www.who.int/reproductive-health/publications/MSM_96_28/msm_96_98_table4.html
Creating a History of Your Organization:
The Importance of Archives
Organizations engaged in global health have a growing body of knowledge, experience and expertise. Unfortunately, much of this information is not documented and, therefore, cannot benefit researchers, policy makers or donor organizations. This article discusses the need for organizational archives and offers advice on first steps in setting up such records.
What is an Archive?
The world of archives encompasses a range of institutions as enormous as the National Archives of the United States with a collection of over ten billion items to the individual repositories of a college, a private business, or local library. “Archives” refers both to discreet collections of historical records and to the place where these records are stored. Archives consist essentially of collections of original, non-current records in various media that document the work and history of an individual or organization. Though archival records are non-current, meaning they are no longer needed in day-to-day activities, their careful retention is the key to documenting permanently the details of past achievements. History is always far more complex than a simple, linear glance back into the past, for everything that was continues not just to be, but it continues to develop and change with the life that is in it and the life that is in us. A moment’s reflection about one’s individual, personal history will convince one that this is true. The same is true for an institution or society at large, and that is the reason we have archives—to preserve the memory and reality of the past.
Today, historical records include documentation not only in traditional media of paper, photography, and film but also digital information stored through increasingly complex computer and optical technologies. Whether information resources are stored electronically or on paper, the mission to organize and preserve non-current records in their original state is fundamental to perpetuating the life of organizations and of society itself. Archives are the prerequisite for history. The exacting and caring preservation of our collective memory through the documentation of the past enables us to apply the lessons of history to current affairs and to enrich our world by building on past success. This optimism is completed warranted for any person or institution that cares about the future—our concern for improving our world begins with the effort to document the present and preserve the past in all of its multifarious detail.
Initial Steps for Creating an Archive
For an organization that cares about preserving its past but without a formal archive, it is important to begin with a written mission statement that sets forth the purpose and goals of archival preservation. One can create this mission statement and organizational policy about archives by first examining and developing the organization’s present record management policies, however formal or informal they may be.
Once this is accomplished, the systematic collection of non-current records in a suitable location (a records center) is an obvious, but critical, step in this process, and the organization of these records will require the attention and responsibility of a person who has some training in records management or archives. Of course, the maintenance of electronic records necessitates the involvement of trained data management professionals along with the appropriate information technology to preserve and retrieve records in electronic and digital formats.
In summary, the organization must evaluate the institutional and the economic value of preserving its records in an archive. For most organizations, archives are an asset by virtue of the fact that its records are truly unique and exist nowhere else in the world in quite the same form.
The Experience of the March of Dimes
The March of Dimes has a rich history that dates back to the founding of the National Foundation for Infantile Paralysis by President Franklin Roosevelt in 1938. Our achievements, which include a long history of assistance to the developing world, are meticulously documented in our archives located in our national headquarters in White Plains, New York. The March of Dimes Archives, a traditional repository of documents, photography, and film, is also a dynamic center of historical resources that enhances the foundation’s ability to reassess policy, diagnose problems, and direct change. These resources are playing an integral role in shaping the foundation’s commemoration of the 50th anniversary of the success of the Salk polio vaccine field trial of 1955 and celebrating the historical continuity of the March of Dimes mission “from polio to prematurity.” We are committed to the strategic utilization of these resources because we realize that our archives and history are a vitally important business asset and have a tremendous potential for education about who we are and what we do.
Should you have questions about organizational archives or the process of setting them up, please contact David Rose, Archivist, March of Dimes Foundation, at drose@marchofdimes.com.
PREMATURITY: The leading cause of neonatal mortality.
Prematurity or preterm birth (birth at less than 37 weeks gestation) is a major contributing factor in infant mortality around the world. Approximately 13 million preterm deliveries occur each year worldwide.(1) In industrialized countries(2) and for hospital deliveries in lower-resource countries, (3, 4) preterm delivery is the most important determinant of neonatal mortality and morbidity. Low birthweight (either in a preterm neonate or full term neonate) contributes significant mortality especially in neonates below 2000g. Even for neonates who do survive, prematurity/low birthweight can be the cause of long-term illness and disability, including developmental delays, chronic respiratory problems and vision and hearing impairment.
Although there has been a significant reduction in child mortality in the latter half of the 20th century, most of that reduction has occurred in lives saved after the neonatal period (day 28 of life onwards). Neonatal deaths (death within the first 27 days of life) are estimated at nearly 4 million each year and now account for 36 percent of deaths worldwide in children under the age of 5 years.(5) New attention and efforts are being directed to this world problem. The Global Partnership for Child Survival Secretariat has been established to reduce child death in the 42 countries that account for 90 percent of deaths in children aged 5 years and younger. Other countries are revising their child healthcare and survival programs as well. One Millennium Development Goal(6, 7) is to reduce child death by two-thirds, from 95 per 1000 in 1990 to 31 per 1000 in 2015. Currently, the neonatal mortality rate is 31 per 1000 worldwide. Thus, a substantial reduction in childhood mortality will be required to meet the 2015 goal.(5)
One of the reasons why the health of newborns has been neglected in many countries despite the huge death toll could be that many neonatal deaths in these countries remain unseen and undocumented. In poorer countries, where there is much lower expectation for survival for both mother and child, mother and baby may remain at home with limited access to health care. Newborns are often not named for up to six weeks, illustrating a cultural acceptance of high mortality.(5)
Although many factors are known to account for the high rate of neonatal mortality worldwide, in the case of preterm delivery, most causes are not well understood. Past successes in reducing perinatal mortality from prematurity have been mostly associated with technology for survival and not interventions to prevent preterm birth.(8) Thus, preventing preterm birth has not been an established priority in low-resource countries to date. If a low-cost preventive strategy and other interventions are identified, however, it can be expected that these will also be just as effective in preventing preterm delivery in lower-resource countries, thus reducing the devastating rate of neonatal mortality worldwide.
New Research on Prematurity
Despite advances in perinatal care and the associated reduction in perinatal mortality from prematurity, rates of preterm birth have continued to increase in the United States. Recently, there have been some promising research developments. Two trials have shown that progesterone therapy substantially reduces the rate of preterm delivery in a high-risk population: women who have a history of preterm delivery.(9 10) Another study carried out in Austria demonstrated that antibiotic treatment for asymptomatic vaginal infection in a relatively small population of 4,429 pregnant women reduced the rate of preterm births from 5.3 percent in the control group to 3 percent in the treatment group.(11) Although these findings offer hope for some, they do not provide the answer for all types of preterm delivery. Research to date has shown preterm birth to be a complex disorder that is, as yet, poorly understood, demanding a number of different interventions and treatments.
International Meetings and the March of Dimes
One program, the Perinatal Epidemiological Research Initiative, is focused on identifying the role of biomarkers in preterm delivery. Promising research was discussed and prematurity prevention protocols shared at an international conference, Biomarker[s] and Preterm Delivery, held in Denmark in June 2004. Information about the conference, which was sponsored in part by the March of Dimes can be accessed at http://www.ptdmeeting.org/.
A new association, the International Preterm Birth Collaborative (http://www.prebic.org/), was created subsequent to the conference. The next meeting of this group will be held in Los Angeles, California, on 21-23 March 2005. A recent article in the journal Lancet identified the need for systematic review of causes of newborn deaths. The formation of the International Preterm Birth Collaborative was a response to this need.
In July 2004, Dr. Jose Villar, Director of Perinatal Research at the World Health Organization (WHO), and a colleague, Dr. Mario Merialdi, visited the March of Dimes National Office. Dr Villar characterized preterm birth as a complex disorder or “syndrome” and emphasized the need for more complete collection of international statistics on preterm birth and birth defects.12
A National Prematurity Campaign
According to 1999 data, the United States had a rate of infant mortality of 7.1 deaths per 1,000 live births which ranks 28th in the world.13 This finding reflects the wide diversity of the U.S. population and the priorities of its economic and social resources. Prematurity remains a national problem with 1 in 8 babies being born premature, the current rate being 12.1 per 1,000 live births. This rate reflects a 29 percent rise in preterm births over the past 20 years, despite high levels of neonatal intensive care. 14,15 In response to this crisis, the March of Dimes in 2003 launched a five-year, 75 million-dollar Prematurity Campaign to educate pregnant women and to support the work of top researchers internationally in an effort to reverse this devastating trend.
For more information on the March of Dimes Prematurity Campaign, visit http://search.marchofdimes.com/msmres.asp?query=prematurity&x=13&y=9
(1) Villar J. Gurtner de la Fuente, Ezcurra E, Campodonico L. Pre-term delivery:unmet need. In Keirse M, editor. New perspectives for the effective treatment of pre-term labour. Royal Turnbridge Wells, Kent, UK: Wells Medical;1994.
(2) Kramer MS, Demrissie K, Yang H Platt RW, Sauvé R, ListonR for the Federal and Infant Health Study Group pf the Canadian Perinatal surveillance System. The contribution of mild and moderate pre-term birth to infant mortality, JAMA 2000;284:843-9.
(3) UN. General assembly, 56th session. Road map towards the implementation of the United Nations millennium declaration: report of the Secretary-General (UN document no. A/56/326). New York: United Nations, 2001.
(4) Black RE, Morris SS, Bryce J. Where and why are 10 million children dying every year? Lancet 2003; 361: 2226-34
(5) Lawn JE, cousens s, Bhutta ZA et al. Why are 4 million newborn babies dying each year? Lancet 2004;364: 399-401.
(6) UN. General assembly, 56th session. Road map towards the implementation of the United Nations millennium declaration: report of the Secretary-General (UN document no. A/56/326). New York: United Nations, 2001.
(7) Black RE, Morris SS, Bryce J. Where and why are 10 million children dying every year? Lancet 2003; 361: 2226-34
(8) Goldenberg R and Rouse D. Review article: Prevention of premature birth. New England Journal of Medicine 1998; 339:313-320.
(9) Meis PJ, KlebanoffM, thom E, Dombrowski MP et al.Prevention of recurrent preterm delivery by 17 alpha-hydroxyprogesterone caproate. N Engl J Med. 2003;348(24):2379-85.
(10) da Fonseca EB, Bittar RE, Carvalho MH, Zugaib M. Prophylactic administration of progesterone by vaginal suppository to reduce the incidence of spontaneous preterm birth in women at increased risk: A randomized placebo-controlled double-blind study. Am J Obstet Gynecol 2003;188:419-24.
(11) Kiss H, Petricevic L, Husslein P. Prospective randomised controlled trial of an infection screening programme to reduce the rate of preterm delivery.BMJ, dol:10.1136/bmj.3869.519653.EB (published 4 August 2004).
(12) Villar J, Abalos E et al. Heterogeneity of perinatal outcomes in the preterm delivery syndrome. Obstet Gynecol 2004;104:78-87.
(13) National Center for Health Statistics. Available at http://www.cdc.gov/nchs/hus.htm
(14) Thompson LA,Goodman DC. Is more neonatal intensive care always better? Insights from a cross-national comparison of reproductive care. PEDIATRICS 2002;109:1036-1043.
(15) High level of resources for neonatal intensive care does not give US better outcomes. BMJ. 2002;324:1353. Available at. http://bmj.bmjjournals.com/cgi/content/full/324/7350/1353
Until next time,
The March of Dimes
For more detail from the March of Dimes, see http://www.marchofdimes.com/aboutus/14458_14791.asp and http://www.marchofdimes.com/aboutus/14458_14894.asp
The Global Programs Newsletter is written by Dr. Christopher P. Howson, Dr. Mary-Elizabeth Reeve, David Rose and Ellen Fiore. We gratefully appreciate the editorial contributions of Dr. Michael Katz.
