scholarly journals Treating Rare Diseases in Africa: The Drugs Exist but the Need Is Unmet

2022 ◽  
Vol 12 ◽  
Author(s):  
Lucio Luzzatto ◽  
Julie Makani
Keyword(s):  
Rare Diseases ◽  
Medical Profession ◽  
Orphan Drugs ◽  
High Income ◽  
African Countries ◽  
The Us ◽  
History Of ◽  
African Patients ◽  
The Impact ◽  
Human Family

Rare diseases (RD) pose serious challenges in terms of both diagnosis and treatment. Legislation was passed in the US (1983) and in EU (2000) aimed to reverse the previous neglect of RD, by providing incentives for development of “orphan drugs” (OD) for their management. Here we analyse the current situation in Africa with respect to (1) sickle cell disease (SCD), that qualifies as rare in the US and in EU, but is not at all rare in African countries (frequencies up to 1–2%); (2) paroxysmal nocturnal haemoglobinuria (PNH), that is ultra-rare in Africa as everywhere else (estimated <10 per million). SCD can be cured by bone marrow transplantation and recently by gene therapy, but very few African patients have access to these expensive procedures; on the other hand, the disease-ameliorating agent hydroxyurea is not expensive, but still the majority of patients in Africa are not receiving it. For PNH, currently most patients In high income countries are treated with a highly effective OD that costs about $400,000 per year per patient: this is not available in Africa. Thus, the impact of OD legislation has been practically nil in this continent. As members of the medical profession and of the human family, we must aim to remove barriers that are essentially financial: especially since countries with rich economies share a history of having exploited African countries. We call on the Global Fund to supply hydroxyurea for all SCD patients; and we call on companies who produce ODs to donate, for every patient who receives an expensive OD in a high income country, enough of the same drug, at a symbolic price, to treat one patient in Africa.

scholarly journals The impact of alternative rebuilding strategies to rebuild overfished stocks

2016 ◽  
Vol 73 (9) ◽  
pp. 2190-2207 ◽  
Author(s):  
Chantel R. Wetzel ◽  
André E. Punt ◽  
Keyword(s):  
West Coast ◽  
Life Histories ◽  
Estimation Error ◽  
The United States ◽  
Fish Stocks ◽  
Strategy Evaluation ◽  
The Us ◽  
History Of ◽  
The Impact ◽  
Us West

Abstract Ending overfishing and rebuilding fish stocks to levels that provide for optimum sustainable yield is a concern for fisheries management worldwide. In the United States, fisheries managers are legally mandated to end overfishing and to implement rebuilding plans for fish stocks that fall below minimum stock size thresholds. Rebuilding plans should lead to recovery to target stock sizes within 10 years, except in situations where the life history of the stock or environmental conditions dictate otherwise. Federally managed groundfish species along the US West Coast have diverse life histories where some are able to rebuild quickly from overfished status, while others, specifically rockfish (Sebastes spp.), may require decades for rebuilding. A management strategy evaluation which assumed limited estimation error was conducted to evaluate the performance of alternative strategies for rebuilding overfished stocks for these alternative US West Coast life histories. Generally, the results highlight the trade-off between the reduction of catches during rebuilding vs. the length of rebuilding. The most precautionary rebuilding plans requiring the greatest harvest reduction resulted in higher average catches over the entire projection period compared with strategies that required a longer rebuilding period with less of a reduction in rebuilding catch. Attempting to maintain a 50% probability of rebuilding was the poorest performing rebuilding strategy for all life histories, resulting in a large number of changes to the rebuilding plan, increased frequency of failing to meet rebuilding targets, and higher variation in catch. The rebuilding plans that implemented a higher initial rebuilding probability (≥60%) for determining rebuilding fishing mortality and targets generally resulted in fewer changes to the rebuilding plans and rebuilt by the target rebuilding year, particularly for stocks with the longer rebuilding plans (e.g. rockfishes).

ISRAELI STUDIES AT THE INSTITUTE OF ORIENTAL STUDIES OF THE RUSSIAN ACADEMY OF SCIENCES: PAGES OF HISTORY (THE BEGINNING OF THE 21ST CENTURY)

2020 ◽  
pp. 219-232
Author(s):  
Tatiana A. Karasova ◽  
◽  
Andrey V. Fedorchenko ◽  
Dmitry A. Maryasis ◽  
◽  
...  
Keyword(s):  
21St Century ◽  
Political Development ◽  
The State ◽  
Main Research ◽  
Research Fields ◽  
The Us ◽  
History Of ◽  
Oriental Studies ◽  
Academy Of Sciences ◽  
The Impact

The article presents a historical overview of Israeli studies at the Institute of Oriental Studies RAS in the first two decades of the 21st century. The paper demonstrates the main research fields and publications of the Department for the Study of Israel and Jewish Communities, as well as the list of its heads and research fellows. The article shows how, having successfully overcome the difficulties of the 1990s that were rather hard on Russian Academy as a whole, the staff of the Israeli Studies Department in their numerous publications, speeches at Russian and international academic forums tried to respond to the new challenges in a scholarly way. In the 2000s the number of works published on the history of relations between the USSR / Russia and Israel increased, and this trend continued in subsequent years. Access to the archives for the first time made it possible to analyze the formation and development of Soviet-Israeli relations before the break (in 1953). The department expanded the directions of its academic activity. Its topics included such directions as the study of the collective memory of Jews in modern Russia, cultural identity, cultural memory, religious and secular identity of Russian Jews, attitude towards disability and people with disabilities, study of youth communities in Israel, Russia and Europe, the impact of the US-Israeli relations on the US Jewish community. Development of basic methodology for researching the state of Jewish charity in Moscow was one of the new tasks for the fellows of the Department to solve. The novelty of the tasks also included new methodology of researching the economic and socio-political development of Israel using social networks data. The Department continued to study all aspects of the life of the State of Israel — economic, socio-political and cultural processes developing in the Israeli state, including new features in regional policy and the concept of Israeli security. At present, members of the department’s, in addition to their current activities, are implementing a number of promising projects aimed at strengthening the department’s position as the leading center of Israeli studies in the post-Soviet space.

Dare voce ai pazienti nella ricerca sulle malattie rare e sui famaci orfani / Giving patients a voice in the rare diseases and orphan drugs research

2018 ◽  
Vol 67 (1) ◽  
pp. 25-40
Author(s):  
Elena Mancini ◽  
Roberta Martina Zagarella
Keyword(s):  
Clinical Trials ◽  
Rare Diseases ◽  
Patient Reported Outcomes ◽  
Narrative Medicine ◽  
Orphan Drugs ◽  
New Drugs ◽  
Patient Centered ◽  
Patient Reported ◽  
Critical Issues ◽  
The Impact

L’articolo ha l’obiettivo di mettere in luce potenzialità e criticità dell’inclusione della prospettiva dei pazienti nella ricerca sulle malattie rare e sui farmaci orfani. A tal fine, nella prima parte, si propone un’analisi epistemologica dell’utilizzo dei racconti dell’esperienza individuale della malattia nella ricerca scientifica e nei trial clinici, facendo emergere, anche attraverso gli strumenti della medicina narrativa, le sfide teoriche e operative poste dall’inclusione della soggettività del paziente e del vissuto di malattia nonché l’importanza della valorizzazione della prospettiva del paziente, sia in generale sia nella ricerca sulle malattie rare e sui farmaci orfani. Nella seconda parte, il testo analizza in particolare il ruolo degli esiti riportati dai pazienti o Patient Reported Outcomes (PROs), misure per la valutazione complessiva della salute basate sulla prospettiva dei pazienti stessi, incentrandosi sulla sperimentazione clinica nel campo delle malattie rare. In questo contesto, infatti, i racconti di malattia, raccolti e valorizzati da fonti istituzionali e associazioni di pazienti, hanno contribuito a far emergere importanti questioni critiche e difficoltà nell’impiego di outcome centrati sul paziente nello sviluppo di nuovi farmaci e trattamenti, generando una serie di documenti e raccomandazioni relative al loro utilizzo per il benessere della comunità dei malati rari. ---------- This paper aims to highlight the potentiality and criticality of including patients’ perspective in rare diseases and orphan drugs research. In the first part, we propose an epistemological analysis of individual narrations of disease experience as they are used in scientific research and clinical trials. With the help of narrative medicine approach, this analysis points out theoretical and operational challenges of a perspective that includes patient’s subjectivity and illness experience. Furthermore, it reveals the significance of patients’ standpoints in general and in rare diseases as well as in the orphan drugs research. The second part of our article focuses on the role of the Patient reported Outcomes (PROs) – which are measures for the health’s overall assessment based on patient’s perspective – by investigating the impact on clinical trials for rare diseases. In this context, illness stories, which are collected and promoted by institutional sources and patients’ associations, contribute to underline important critical issues at stake in the employment of patient-centered outcomes both in new drugs and in the treatments development. Moreover, these stories are crucial to elaborate documents and recommendations concerning the use of PROs for the rare patients’ community welfare.

scholarly journals Mental Distress in the United States at the Beginning of the COVID-19 Pandemic

2020 ◽  
Vol 110 (11) ◽  
pp. 1628-1634 ◽  
Author(s):  
Calliope Holingue ◽  
Luther G. Kalb ◽  
Kira E. Riehm ◽  
Daniel Bennett ◽  
Arie Kapteyn ◽  
...  
Keyword(s):  
Depressive Symptoms ◽  
Odds Ratio ◽  
Mental Distress ◽  
Adult Population ◽  
The United States ◽  
The Us ◽  
Patient Health ◽  
Completion Date ◽  
History Of ◽  
The Impact

Objectives. To assess the impact of the COVID-19 pandemic on mental distress in US adults. Methods. Participants were 5065 adults from the Understanding America Study, a probability-based Internet panel representative of the US adult population. The main exposure was survey completion date (March 10–16, 2020). The outcome was mental distress measured via the 4-item version of the Patient Health Questionnaire. Results. Among states with 50 or more COVID-19 cases as of March 10, each additional day was significantly associated with an 11% increase in the odds of moving up a category of distress (odds ratio = 1.11; 95% confidence interval = 1.01, 1.21; P = .02). Perceptions about the likelihood of getting infected, death from the virus, and steps taken to avoid infecting others were associated with increased mental distress in the model that included all states. Individuals with higher consumption of alcohol or cannabis or with history of depressive symptoms were at significantly higher risk for mental distress. Conclusions. These data suggest that as the COVID-19 pandemic continues, mental distress may continue to increase and should be regularly monitored. Specific populations are at high risk for mental distress, particularly those with preexisting depressive symptoms.

scholarly journals Unwanted Conflict? The Analysis of the Impact of Misperception, Beliefs and Psychology of President Nasser at the Outbreak of the Six Day War

2019 ◽  
Vol 01 (02) ◽  
pp. 1950003
Author(s):  
Janko Šćepanović
Keyword(s):  
Decision Making ◽  
Decision Makers ◽  
Structural Explanation ◽  
Defining Moments ◽  
The Us ◽  
History Of ◽  
The Subject ◽  
Six Day War ◽  
The Impact

The Six Day War was one of the most defining moments in the history of the Modern Middle East. This paper seeks to add to the existing scholarship on the subject by going beyond the structural explanation. It gives special attention to the role of unit-level variables like perception, personality, and political psychology of decision-makers. As one scholar noted, threats are not perceived in a vacuum, and are, instead, products of complex synthesis of subjective appraisal of events by the decision-makers. The focus will be on the beliefs and perceptions of the most impactful actor in this crisis: Egyptian President Nasser. As will be argued, his decision-making was shaped by his experience with foreign imperialism, a general misconception of super power intentions, an incorrect analogy between two crucial crisis situations with Israel: the February 1960 Rotem Crisis, and the build-up to the June War in 1967, and especially his complicated relations with the US leaders.

scholarly journals An Exploratory Study of the Impact of Top Leadership on Effectiveness of Privatization of Hospitals Through Mergers and Acquisitions in Kenya

2018 ◽  
Vol 9 (3) ◽  
pp. 54
Author(s):  
Shawn Bolouki ◽  
Peter Lewa
Keyword(s):  
Middle Class ◽  
Mergers And Acquisitions ◽  
Sample Size ◽  
Private Equity ◽  
The Body ◽  
Insurance Fund ◽  
Technological Advancement ◽  
African Countries ◽  
History Of ◽  
The Impact

This paper examines the privatization of hospitals through mergers and acquisitions (M&A) using Kenya as the country of focus. It shows that M&A activities are increasing in Africa and there is a history of privatization of state-owned enterprises (SOEs) / parastatals in Africa and Kenya in particular, which started in the 1990s. With the changing dynamics, increasing pressure to achieve universal health and looking at the history of mergers and acquisitions there is no doubt that this is going to become an important phenomenon in Kenya in the near future.Privatization of hospitals, including public and not-for-profit (NFP), has been popular since 1980s in North America (U.S., Canada) and Europe (Germany, England). Privatization and M&A activities of hospitals in other countries such as India, China, Saudi Arabia, Africa and Kenya have also increased. The reasons for these trends are industrialization of developing countries, changing lifestyles, aging populations, longer life expectancy, technological advancement, growth of the middle class, increase of non-communicable diseases (NCDs) and inefficiency of public health systems. With the changing dynamics, it would appear there is a need for African countries to expand their private sectors, and privatization of healthcare is an attractive area for private equity firms and private hospital chains. Due to growth of the economy and the middle class, higher demand for healthcare services and particularly expansion of NHIF (National Hospital Insurance Fund) coverage, privatization of hospitals makes economic sense in Kenya.Knowledge of M&A among top leadership is crucial in determining its success or failure. Therefore, the literature review focused on property right, transaction cost, and institutional theory. Relevant M&A theories such as process, synergy, efficiency and disturbance theory were also reviewed.The research philosophy, methodology and design of this study was based on exploratory, post-positivism, deduction and utilized mixed methods (qualitative and quantitative) with focus on verifying the hypothesis. The population of this research included Level 4, 5 and 6 hospitals in Kenya, totaling 268 hospitals with at least 50 beds; the sample size was 158 hospitals. Proportionate stratified random sampling methodology was used to determine the sample size of each hospital level (Level 4, 137 hospitals; Level 5, 14 hospitals; and Level 6, 7 hospitals).The hypothesis that there is no relationship between top leadership (X) and the effectiveness of privatization of hospitals (Y) through M&A was tested and there was a strong and positive relationship between the dependent and independent variables (r=0.821), and the regression model was found to be reliable. The null hypothesis was rejected because of the results of the T-test (β1=0.925, t=9.757, p<0.005).It is recommended that similar studies be conducted in East and South Africa to enable researchers to perform comparative analyses in order to improve the body of knowledge.

Toxic masculinity in American politics: Donald Trump’s tweeting activity in the US presidential election (2016)

2020 ◽  
Vol 39 (2) ◽  
pp. 163-181 ◽  
Author(s):  
Margalida Pizarro-Sirera
Keyword(s):  
Presidential Election ◽  
American Politics ◽  
Gender Performativity ◽  
White House ◽  
The Us ◽  
Twitter Account ◽  
History Of ◽  
Us Presidential Election ◽  
The Impact ◽  
Central Purpose

In the US presidential election of 2016, Donald Trump’s connection with his voters marked the history of American politics by electing a political outsider to the White House. Under a feminist scope, this article examines Donald Trump’s Twitter account. The central purpose of this article is threefold: first, to scrutinize Trump’s tweeting activity and his dissemination of hegemonic toxic masculinity through this platform; second, to assess the unfavourable representation of Hillary Clinton’s decentred femininity and third, to examine how Trump’s performative toxic masculinity immediately connected with his voters’ cultural capital via Twitter. Finally, through an analysis of the impact of Trump’s tweets on his followers, the findings from this study will highlight that Clinton’s decentred gender performativity and Trump’s shared capital with his voters may well have been a fundamental tenet of Donald Trump’s victory.

Introduction to the Special Issue on Faith-Based Organizing in the USA

2012 ◽  
Vol 6 (4) ◽  
pp. 383-397
Author(s):  
Katie Day
Keyword(s):  
Community Organizing ◽  
Political Discourse ◽  
Social Mobilization ◽  
Special Issue ◽  
Faith Based ◽  
The Us ◽  
The Usa ◽  
History Of ◽  
Community Organizer ◽  
The Impact

Abstract This article serves as an introduction to faith-based community organizing and to this special issue of IJPT. First, an overview of the history of community organizing in the US includes introductions to the key figures (Saul Alinsky and Ed Chambers), organizing networks and methods currently employed. Then current challenges to community organizing are explored, such as technology, gender and race. Further, the rigid distinction between broad-based and issue organizing is challenged. Finally, the article notes that the impact of Barack Obama’s background as a community organizer on political discourse has raised the profile of this form of social mobilization, and it is reframing the questions raised for public theologians as community organizing moves into the future.

scholarly journals Stosunki rosyjsko-irańskie w latach 2011–2019. Pragmatyczny sojusz czy trwałe partnerstwo?

2020 ◽  
Vol 48 (1) ◽  
pp. 35-59
Author(s):  
Andrzej Purat ◽  
Paweł Bielicki
Keyword(s):  
The United States ◽  
Religious Leader ◽  
Donald Trump ◽  
Economic Issues ◽  
Political Processes ◽  
The Us ◽  
History Of ◽  
The Arab Spring ◽  
The Impact

The main goal of our considerations is to analyse the most important conditions and dependencies that characterise Russian-Iranian relations from the beginning of the Arab Spring to the present day. We pay special attention to the infl uence of the United States on the development of diplomatic contacts between Moscow and Tehran and the conflict in Syria.Firstly, we describe the history of relations between the two countries after 1979 and the takeover of power by the religious leader, Ayatollah Khomeini, who, despite adopting an anti-Western course in international politics, did not show a desire to get closer to the Soviet neighbour. Secondly, we describe the relations of both countries from the collapse of the USSR to 2011, focusing on Iran’s role in influencing political processes in the post-Soviet area. Thirdly, we present the position of Russia and the Middle East about the war in Syria and the role of the Kurds. We also examine the impact of US policy on establishing links between Russia and Iran. Moreover, we raise economic issues and Moscow’s growing desire to dominate the Iranian economy and army.In the summary, we try to answer the question of what Russian-Iranian relations will look like in the future, especially in the era of the gradually ending war in Syria. Importantly, we refer to the issue of the US anti-Iranian rhetoric reinforced by Donald Trump and how it can influence the further strengthening of the Russia-Iran alliance.

scholarly journals The Impact of Social and Digital Medias on Senegalese Society

2017 ◽  
Vol 5 (2) ◽  
pp. 1
Author(s):  
Ousmane Sall
Keyword(s):  
Social Media ◽  
New Media ◽  
New Technologies ◽  
Text Message ◽  
Oral Communication ◽  
West African ◽  
African Countries ◽  
History Of ◽  
The Impact ◽  
Rich History

West African countries especially Senegal, have a very rich history of written and oral communication based on their culture and traditions. Today, Senegal is inescapable about the adoption and use of new technologies in Africa. Senegal experienced a boom of cell phones users over the past 5 years in 2012 for example, we noticed “88% mobile subscriptions” compared with “46% mobile subscriptions in 2008” {world bank,2013}. That explains mobile phones are no more to make a call or to send a text message but also to interact with people around and entertain. In fact, digital communication is expanding in all Senegalese spheres like the workplace, school, universities... in the latter half of the 20th century before the explosion of social media, people only depended on old media like TV, Radio, Newspapers… to get informed. For this study, we are going to focus on how social media are impacting economically and politically on Senegalese society and how young people are managing the transition between traditional media and new media.

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