The paper is addressing aspects of health system sustainability for rare diseases in relation to the current economic crisis and equity concerns. It takes into account the results of the narrative review carried out in the framework of the Joint Action for Rare Diseases (Joint RD-Action) "Promoting Implementation of Recommendations on Policy, Information and Data for Rare Diseases", that identified networks as key factors for health systems sustainability for rare diseases. The legal framework of European Reference Networks and their added value is also presented. Networks play a relevant role for health systems sustainability, since they are based upon, pay special attention to and can intervene on health systems knowledge development, partnership, organizational structure, resources, leadership and governance. Moreover, sustainability of health systems can not be separated from the analysis of the context and the action on it, including fiscal equity. As a result of the financial crisis of 2008, cuts of public health-care budgets jeopardized health equity, since the least wealthy suffered from the greatest health effects. Moreover, austerity policies affected economic growth much more adversely than previously believed. Therefore, reducing public health expenditure not only is going to jeopardise citizens' health, but also to hamper fair and sustainable development.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1007/978-3-319-67144-4_33 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Assessing the Risk of Sexually Transmitted Infections among Men who have Sex with Men in San Francisco during COVID-19: A Socio-ecological Analysis.
AIDS Behav
January 2025
Center for Public Health Research, Department of Public Health, San Francisco, USA.
Background: Men who have sex with men (MSM) are disproportionately affected by sexually transmitted infections, a disparity that has only worsened in recent years. During the COVID-19 pandemic, an overall increasing trend remained.
Methods: We utilized data from the MSM cycle of the National HIV Behavioral Surveillance (NHBS) study in San Francisco, California, conducted from June 2021 through December 2021, to identify socio-ecological disruptions during the COVID-19 pandemic that were associated with sexually transmitted infections.
Prevalence of Chronic Hand Eczema in adults: A cross-sectional survey of over 60,000 respondents in the general population in Canada, France, Germany, Italy, Spain, and the United Kingdom.
Br J Dermatol
January 2025
Department of Occupational and Environmental Diseases, University Hospital of Centre of Paris, Hotel-Dieu Hospital, and Department of Dermatology, University Hospital of Centre of Paris, Cochin Hospital, AP-HP, Paris, France AP-HP, Paris, France.
Background: The lack of attention to Chronic Hand Eczema (CHE) and the lack of a specific International Classification of Diseases code for CHE may have limited the assessment of CHE prevalence. To date, prevalence estimates have primarily been derived from (partly small) single-country studies.
Objectives: To estimate the annual prevalence of self-reported physician-diagnosed CHE across socio-demographic characteristics among adults in Canada, France, Germany, Italy, Spain, and the United Kingdom (UK).
Transcatheter Left Ventricular Reconstruction in Heart Failure Patients With Prior Anterior Myocardial Infarction: The Prospective ALIVE Trial.
JACC Heart Fail
January 2025
The Zena and Michael A. Wiener Cardiovascular Institute, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
Background: Left ventricular (LV) dilatation and extensive scar portend a poor prognosis in heart failure (HF). The Revivent TC system (BioVentrix Inc) is used either during a hybrid transcatheter-surgical or a surgical-only procedure to exclude transmural scar and reduce LV dimensions.
Objectives: The purpose of this study was to examine the safety and efficacy of the Revivent TC® anchor system in patients with HF.
Digital Solutions for the Optimization of Pharmacologic Therapy for Heart Failure.
JACC Heart Fail
January 2025
Cardiovascular Division, Brigham and Women's Hospital, Boston, Massachusetts, USA.
Data from large-scale, randomized, controlled trials demonstrate that contemporary treatments for heart failure (HF) can substantially improve morbidity and mortality. Despite this, observed outcomes for patients living with HF are poor, and they have not improved over time. The are many potential reasons for this important problem, but inadequate use of optimal medical therapy for patients with HF, an important component of guideline-directed medical therapy, in routine practice is a principal and modifiable contributor.
View Article and Find Full Text PDFVariations in Revascularization Strategies for Chronic Limb-Threatening Ischemia: A Nationwide Analysis of Medicare Beneficiaries.
JACC Cardiovasc Interv
December 2024
Richard A. and Susan F. Smith Center for Outcomes Research in Cardiology, Department of Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA; Division of Cardiology, Department of Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA; Harvard Medical School, Boston, Massachusetts, USA. Electronic address:
Background: Recent data support both surgical-first and endovascular-first revascularization approaches for chronic limb-threatening ischemia (CLTI), but hospital-based practices are poorly described.
Objectives: This aim of this study was to characterize contemporary variations and outcomes associated with each strategy among U.S.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!