4. Propuesta de adaptación Tecnológica
4.3 Evaluación de proceso
In 1998, the United States was reported to have invested ‘$9.3 billion on programs for the
developmentally disabled [and] CASA estimated that at least nine percent or $837 million of state costs for programs for the developmentally disabled are a result of Fetal Alcohol Syndrome’. When compared with the costs of tobacco and other drugs, the costs of alcohol are enormous (alcohol $149.2 billion; tobacco $79.4 billion; other drugs $18.7 billion). Approximately four per cent of the alcohol budget is devoted to prevention and treatment (Center for Addictions and Substance Abuse 2005, p. 18).
In the early part of the decade 2001–2010, estimates were that at least ‘40% of all pregnancies would have some exposure to alcohol before birth’ (Centers for Disease Control, 2004) and 14.8 per cent of females of childbearing age (18–44) indicated at least one binge drinking session in the previous 30 days (Morbidity and Mortality Weekly Report 2002). Within two decades, three to five per cent of
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fetuses were estimated as heavily exposed to alcohol (Herrick et al. 2011, p. 44) and 7.6 per cent of pregnant women reported using alcohol, with 1.4 per cent of this group disclosing use in the previous month (Morbidity and Mortality Weekly Report 2006–2010).In the same year that the Seattle Post-Intelligencer (2005) published an article on the prevention of FAS, claiming that the alcohol industry ‘buttresses’ its position by invoking a disease model of alcoholism and asserting that problem drinking occurs only among a small number of troubled individuals, a report called ‘Shovelling It Up II’ (Center for Addictions and Substance Abuse 2005) was published. In this report, the total government spending linked to alcohol was estimated at $149.2 billion a year, which the authors claimed was ‘more than 60 times as much to clean up the devastation substance abuse and addiction impacts on children as they do on prevention and treatment’. Of this vast investment, ‘$960.0 million in state costs for the developmentally disabled as a result of Fetal Alcohol Syndrome’ was estimated, with the largest share for children in education (Center for Addictions and Substance Abuse 2005, p. 17). School costs linked to substance abuse and addiction include increased special education for those with FASD (Center for Addictions and Substance Abuse 2005, p. 17).
In the 1980s and 1990s the prevalence of FAS in the United States was estimated at between ‘0.5 to 2 cases per 1000’, and FASD prevalence studies were ‘most frequently carried out where there are a large number of FAS cases to be found’ (May & Gossage 2001). Researchers cautioned that if findings were then applied to the general population, ‘the prevalence of FAS may be overestimated’ (May et al. 2009, p. 176). With this in mind, May and Gossage reviewed FASD prevalence studies which used one of three different approaches. The first was passive surveillance, an approach using existing records to identify cases ‘at risk’ for FASD (p. 178). The second approach was clinic-based studies involving screening in prenatal clinics. As women chose to participate or not and the highest- risk women were often not regular attendees, the higher-risk drinking population group was often underrepresented. Clinic-based studies conducted in public health systems on the other hand, often dealt with disadvantaged women, so their data often over-represented the prevalence of FASD (May & Gossage 2009, p. 179). The third method was active case ascertainment, which was determined to be the most reliable approach due to its application of on-site assessment and diagnosis; however, the approach was labour- and resource-intensive and the recruitment only of ‘at risk’ women and their children was deemed selective (May & Gossage 2009, pp. 181–182). The authors reported ‘that the prevalence of FAS in typical, mixed-racial, and mixed-socioeconomic populations of the US is at least 2 to 7 per 1,000’ (p. 189). In respect to the complete spectrum, the researchers estimated a current prevalence rate ‘in populations of younger school children … as high as 2–5% in the US and some Western European countries’ (p. 190). The results indicated an increased prevalence in school populations, and therefore in the general population, than previously estimated.
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The National Organisation on Fetal Alcohol Syndrome (NOFAS) predicted in early 2012 that an estimated 40,000 fetal alcohol-exposed babies will be born each year in the United States. According to the Substance Abuse and Mental Health Services Administration, this equates with ‘up to 1 in 20 births’. It ‘can cost nine times as much to take care of [children with fetal alcohol disorders] as a healthy child’: which translates to a cost of ‘as much as $2 million’ for each child over a lifetime. This led to a prediction that the cost of health care for those living with diagnosed FAS would reach an estimated $6 billion, with costs escalating ‘sharply’ if the complete spectrum and impact of fetal alcohol were ‘factored in’ (National Organisation on Fetal Alcohol Syndrome, 2012). The estimate matches the one proposed by the Fetal Alcohol Syndrome Interagency Workgroup Report to the Governor’s Council on Substance Abuse in 2007 (Fetal Alcohol Syndrome Interagency Workgroup, 2007), a conservative estimate of $2 million per lifetime of care for each individual living with FASD. The Fetal Alcohol Syndrome Interagency Workgroup contrasted this with an estimated $10,000 per individual required to prevent FASD.5.7.
SUMMARY
The story from the United States suggests that the search for prevention opportunities since the early 1970s has been often dominated by duplicated research funded by major national health institutions, mandated by Congress to report on how best to target higher-risk drinking women and to determine prevalence rates for specific population groups in order to target investment. From the outset the focus has been on high-risk drinking women, and this has generally translated as Native American
communities and other population groups identified by lower socio-economic indices. Despite the evidence that social and environmental factors influence higher-risk alcohol use (including poverty, violence, advanced maternal age, number of pregnancies, previous births of a child with FAS, cohabitation with a male partner who drinks heavily, and particularly socio-cultural values), these seem to be ignored.
The NIAAA holds leadership in the national effort to reduce alcohol-related problems by conducting and supporting research in a wide range of areas including genetics, neuroscience, epidemiology, health risks and benefits of alcohol consumption, prevention, and treatment; coordinating and collaborating with other research institutes and Federal Programs on alcohol-related issues; collaborating with international, national, state, and local institutions, organisations, agencies, and programs engaged in alcohol-related work; and translating and disseminating research findings to health care providers, researchers, policymakers, and the public. The NIAAA continues to fund a large and specific FASD ($30m) research program, with projects covering prevention, diagnosis and
‘ameliorative interventions’ and the treatment of women with alcohol use disorders, and supports collaborations like the Collaborative Initiative on Fetal Alcohol Spectrum Disorders. This
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multidisciplinary consortium aims ‘to accelerate the translation of key research findings by fostering collaboration and coordinating clinical, basic, and translational research’. CIFASP also seeks to determine ‘the prevalence of FASD among school-aged children in several United States communities … using active case ascertainment methodology’. NIAAA supports the annual meeting of the FASD Study Group and the Prenatal Alcohol and Sudden Infant Death Syndrome and Stillbirth (PASS) Network. The work of the latter group is investigative, examining ‘the role of prenatal alcohol exposure and SIDS, stillbirth and FASD’ (NIAAA 2012).Despite all that has been attempted to prevent fetal alcohol exposure and FASD, mandates call for prevention in specific population groups based on evidence of social and environmental contributing factors, at a time when the social determinants of women’s health and wellbeing are rarely addressed in the literature. This is evident in an April 2015 presentation to the American Psychological
Association by Kenneth Warren, Deputy Director of the NIAAA; Professor Ed Riley, Professor of Psychology and Director of the Center for Behavioral Teratology at San Diego State University; and Kathleen T. Mitchell, Vice President and national spokesperson for the National Organization on Fetal Alcohol Syndrome (NOFAS). For Riley, the challenge of accurate diagnosis is to account for the myriad symptoms and signs of fetal alcohol exposure: ‘some will have the classic facial characteristics associated with FASD, others may have no outward morphologic signs but still have the brain
impairments associated with FASD’. Riley also speaks about the reality that only half of all paediatricians are confident in making a diagnosis of FASD, and how this impacts on access to
treatment. Mitchell, speaking from personal experience, describes her lack of awareness of the dangers of alcohol when she was pregnant in the 1970s and stresses the need to understand that most women do not know they are pregnant when they drink, or are unaware of the dangers. She points out that most women do not drink to harm their unborn child, yet may face prosecution and stigma if they seek help. Warren points out that half of all pregnancies are unplanned, so many unborn children are exposed to alcohol prior to confirmation of a pregnancy: this indicates that a change to the social norms surrounding drinking behaviour need to be encouraged.
Consistent prevention messages and increased public awareness of the risk of alcohol use in pregnancy, the limitations of current diagnostic criteria, the need to train the other half of all paediatricians, and a broader population-based focus instead of the discretionary selection of some women and some communities are issues that resonate through this chapter on FASD in the United States. This research now turns to Canada to determine if the story there is similar or different.