scholarly journals Political analysis of the neonatal screening for severe combined immunodeficiency - Curitiba, Brazil

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
D R L Lima ◽  
P F I Goiozo ◽  
A Sanches ◽  
E De Carvalho ◽  
H A Carvalho ◽  
...  
Keyword(s):  
Public Health ◽  
Public Policy ◽  
Policy Analysis ◽  
Neonatal Screening ◽  
Severe Combined Immunodeficiency ◽  
Political Agenda ◽  
The Political ◽  
Combined Immunodeficiency ◽  
Term Survival ◽  
Wide Range

Abstract Severe Combined Immunodeficiency (SCID) is the most aggressive form of primary immunodeficiencies, being able to death within 2 years after birth. In the USA, the screening found that the incidence of SCID was double that previously stipulated, before screening. Israel, Taiwan, Spain and others European countries are also testing for SCID. The long-term survival of patients diagnosed and treated before 4 months of life reaches 94%. Brazil does not perform neonatal screening for SCID through the Public Health System (SUS), numbers are unknown and under-diagnosed, even the treatment for SCID is funded by SUS. Analyze the political dimensions of the bill that aims to implement neonatal screening for SCID in Curitiba, Brazil. Participatory research was carried out between March - October 2019 and, bibliographic research on policy analysis in the context of emerging countries, to understand the criteria are taken into account for the political agenda, the influence of interest groups and the influence of the political arena in the implementation of a public policy through policy analysis. The project is pending in the municipal legislature of Curitiba and faces issues related to the financing of the implementation - a wide range of dependent variables act in the construction of a public policy. Its materialization, although important for public health, must consider real possibilities of implementation. In parallel, independent of the bill, a screening pilot project is under preparation by doctors, academics, and civil society. Brazil has a feasible technique that can be implemented on a large scale for neonatal SCID screening. However, although strongly recommended by the medical community, the implementation of this policy can be unviable by political and financial issues. Key messages The implementation of a public policy involves decisions between institutions, rules of the game and political forces. Early diagnosis may reduce treatment costs, requiring public policies for SCID.

The Rockefeller Foundation and medical education in Ireland in the 1920s

1997 ◽  
Vol 30 (120) ◽  
pp. 564-580
Author(s):  
Greta Jones
Keyword(s):  
Public Health ◽  
New York ◽  
Medical Education ◽  
Rockefeller Foundation ◽  
Social Background ◽  
The Political ◽  
Social Stability ◽  
Wide Range ◽  
Public Health Programmes ◽  
Health Programmes

In 1913 part of the enormous fortune of the American millionaire John D. Rockefeller was put aside for philanthropic and charitable purposes under the direction of the Rockefeller Foundation. Throughout the twentieth century the Rockefeller Foundation disbursed money to a wide range of economic, scientific and artistic projects. Among its interests were health and medical research, and Rockefeller invested funds in public health programmes throughout the world for the eradication of particular diseases or to strengthen the effectiveness of existing public health structures.The Rockefeller Foundation was also interested in providing aid for the reorganisation and modernisation of medical education. It was, however, loath to part with any of its monies unless it was assured of the political and social stability of a country, and also of the competence, honesty and good intentions of those to whom it entrusted funds. In order to assess this, the officers of the Rockefeller Foundation visited potential recipients. They reported back to the New York headquarters of the Foundation on the political and social background of the countries to which assistance might be given and also on the feasibility of the programmes of assistance devised to help them.

scholarly journals Early diagnosis of ataxia telangiectasia in the neonatal phase: a parents’ perspective

2019 ◽  
Vol 179 (2) ◽  
pp. 251-256 ◽  
Author(s):  
M. H. D. Schoenaker ◽  
M. Blom ◽  
M. C. de Vries ◽  
C. M. R. Weemaes ◽  
M. van der Burg ◽  
...  
Keyword(s):  
Family Planning ◽  
Early Diagnosis ◽  
Healthy Child ◽  
Ataxia Telangiectasia ◽  
Neonatal Screening ◽  
Neurodegenerative Disorder ◽  
Severe Combined Immunodeficiency ◽  
Diagnostic Process ◽  
Combined Immunodeficiency ◽  
Asymptomatic Phase

Abstract Ataxia telangiectasia (A-T) is a severe neurodegenerative disorder with variable immunodeficiency. Together with the Dutch A-T community, we investigated the opinion of A-T parents on an early A-T diagnosis in the asymptomatic phase of the disease. During an annual national meeting for A-T patients and families, the topic of an early A-T diagnosis was discussed in relation to the recent introduction of neonatal screening for severe combined immunodeficiency (SCID) in the Netherlands. Based on the discussion, individual arguments were identified and processed into a questionnaire, which was sent out to 64 A-T parents (32 families). Arguments included were insecurity to diagnosis, possible medical advantages, appropriate genetic counseling and family planning, loss of “golden” year(s), and early cancer screening for parents. The response rate was 55% (n = 35 parents). Twenty-six (74%) parents felt that the advantages of an early diagnosis outweighed the disadvantages, five parents thought that the disadvantages would outweigh the advantages (14%), and four parents did not indicate a preference. Conclusion: The majority of parents of a child with A-T would have preferred an early diagnosis during the asymptomatic phase of the disease, because the uncertainty during the diagnostic process had had a major impact on their lives. In addition, the knowledge of being carriers of an ATM gene mutation influenced decisions about family planning. Parents who opposed against an early diagnosis emphasized the joy of having a seemingly healthy child until diagnosis.What is Known:• Ataxia telangiectasia (A-T) is a devastating DNA repair disorder with a huge impact on quality of life of patients and their parents.• Patients with A-T may incidentally be identified at birth as the consequence of neonatal screening for severe combined immunodeficiency (SCID).What is New:• The majority of Dutch parents of A-T patients (74%) would have preferred an early diagnosis of their child in the asymptomatic phase of the disease.• Major arguments for an early A-T diagnosis were (1) the experienced insecurity in diagnostic trajectories and its impact on families and (2) the knowledge of being ATM mutation carriers when deciding about family planning. An argument against an early diagnosis is losing the joy of having a seemingly healthy child until diagnosis.

scholarly journals When evidence alone is not enough: the problem, policy and politics of water fluoridation in England

2021 ◽  
Author(s):  
Gary Lowery ◽  
Matthew Flinders ◽  
Barry J. Gibson
Keyword(s):  
Public Health ◽  
Policy Change ◽  
Hospital Admissions ◽  
Exchange Process ◽  
Political Agenda ◽  
The Political ◽  
Water Fluoridation ◽  
Sociopolitical Context ◽  
Health Policymaking

Background: Tooth extractions are the most common cause of hospital admissions for children in England. Water fluoridation has the potential to reduce this number by 60%, is backed by the scientific and public health communities, and yet is currently consumed by only 10% of the population.Aims and objectives: This ‘evidence-policy gap’ is explored through Kingdon’s ‘multi-streams approach’ which provides insights into the circumstances under which water fluoridation has made it onto the political agenda, the rationale underpinning opponent and advocate policy positions, and the role of the political arena in fostering or hindering policy action.Methods: Over 100 primary documents were reviewed to develop an understanding of the scientific and ethical arguments for and against water fluoridation, as well as to identify how they have all historically sought to mobilise their policy preferences. Eleven consultations were also conducted with stakeholders as part of the knowledge exchange process.Findings: The key finding of this research is that evidence is only likely to trigger policy change if it emerges into a receptive sociopolitical context. In substantiating this claim we identify evidence not of an ‘evidence-policy gap’ but of a more complex and multidimensional ‘evidence-policy-politics gap’.Discussion: The findings contribute to a range of debates in relation to: (1) the apparent irreconcilability of background ideas about what ought to form the basis of public health policymaking; (2) the presence of differing evidential standards that create an uneven playing field; and (3) the central underpinning role of politics in public health policymaking.<br />Key points<br /><ul><li>Water fluoridation in England is characterised by a disconnect between the evidence base and the policies enacted.</li><br /><li>This is attributable to a complex, multidimensional and dialectical ‘evidence-policy-politics gap’.</li><br /><li>Evidence is only likely to trigger policy change if located within a receptive sociopolitical context.</li><br /><li>These insights feed into broader debates surrounding blame-avoidance behaviour and the existence of evidential biases.</li></ul>

History as an Obstacle to Change: The Case of Haiti

1989 ◽  
Vol 31 (1-2) ◽  
pp. 1-22 ◽  
Author(s):  
Mats Lundahl
Keyword(s):  
Public Policy ◽  
Economic Policy ◽  
Policy Analysis ◽  
Good Deal ◽  
Economic Models ◽  
The State ◽  
The Political ◽  
Political Will ◽  
Public Policy Analysis ◽  
The Government

…widespread social evils are seldom unconnected with the selfish and brutal behavior of powerful groups and individuals…(Andreski, 1966)Most economic models do not explicitly incorporate the “state” or the “government” into their analyses. Instead, this entity is viewed as a deus ex machina which plans and directs economic policy according to notions of efficiency, growth, distributional justice, and so on, that form the central concepts of the models. Unfortunately, the same naive thinking permeates a good deal of public policy analysis. This is the case, for example, with issues of development and underdevelopment. Here, attention is concentrated on “technical,” or “economic,” solutions, while taking for granted, either implicitly or explicitly, the existence of the political will necessary to implement them.

Plague and Public Health: Treating the Body of the City and the Body of the Poor

2019 ◽  
pp. 84-117
Author(s):  
John Henderson
Keyword(s):  
Public Health ◽  
Vital Role ◽  
The Body ◽  
The Political ◽  
Health Board ◽  
Public Health Policies ◽  
Local Structures ◽  
Marginalised Groups ◽  
Wide Range ◽  
The City

This chapter examines the ways in which the combined administrative and medical expertise informed the developing strategies of the Italian government during the early stages of the epidemic. While conforming to more general public health policies of Italian states, it also considers how far the Florentine experience of plague was mediated through existing local structures and the political status quo. The influence of the Grand Duke of Tuscany, Ferdinand II, remained very evident, as he sought to intervene in and to influence the developing policy of the magistrates of the health board, which was constituted by patricians who were members of his court. Meanwhile, the voluntary lay religious group, the Archconfraternity of the Misericordia, played a vital role in the transport and burial of the sick and the dead. While their porters and grave-diggers were paid, the members of the fraternity themselves performed their tasks from a sense of Christian charity towards the poorer members of society, a motivation which formed the obverse of the government's decrees against marginalised groups, such as prostitutes and Jews. A mixed motivation also informed the strategies of the medical staff in the service of the Sanità (health board), and the chapter looks at their role—sometimes distant, sometimes interventionist and sometimes compassionate—in inspecting the sick and recommending a wide range of treatments for the more affluent and the humble.

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