A compilation of national plans, policies and government actions for rare diseases in 23 countries.
Ontology highlight
ABSTRACT:
SUBMITTER: Khosla N
PROVIDER: S-EPMC6290840 | biostudies-other | 2018 Nov
REPOSITORIES: biostudies-other
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Project description:Vaccination against COVID-19 is an essential public health tool for pandemic control. Inclusion of migrants in COVID-19 vaccination is not only ethically necessary from a right-to-health perspective but also technically indispensable for disease control. This study aimed to characterize the inclusion of international migrants, refugees, and asylum seekers in COVID-19 vaccination policies in Latin American countries that have the greatest recent increase in the reception of migrants. We conducted a content analysis of public policy documents issued between March 11, 2020, and June 30, 2022 by the Ministries of Health of seven countries: Brazil, Chile, Colombia, Costa Rica, Ecuador, Mexico and Peru. Documents were located through Ministries of Health web pages, references in scientific literature, and the Pan American Health Organization's Information Platform on Health and Migration in the Americas. A content analysis was performed of the documents that were located, along six dimensions: migrants' right to vaccination, temporality of vaccination, administrative discretion, policies to facilitate access, language or cultural considerations, and normative, ethical or technical justifications provided. Eighty-six public policy documents were reviewed. Their contents showed that none of the countries explicitly excluded migrants from vaccination, nor did they explicitly define restrictions on this population. One barrier that was detected was to require identity documents in order to be vaccinated or to receive a vaccination certificate, which could be difficult for migrants to obtain. Few countries defined actions to facilitate or promote the vaccination of migrants. The documents that mentioned justifications for vaccinating migrants presented reasons that were mainly based on the recognition of the right to health, the principle of non-discrimination and equity. The countries studied generally had inclusive policies but were limited in terms of dealing with potential barriers to access. The lack of mechanisms to guarantee the right to health is a limitation that countries in the region should address.
| S-EPMC10694650 | biostudies-literature
Project description:Nutrition-related non-communicable diseases (NR-NCDs) are a global health problem, increasingly recognised as driven by unhealthy food environments. Yet little is known about government action to implement food environment-relevant policies, particularly in low-and lower-middle income countries. This study assessed government action, implementation gaps, and priorities to improve the food environment in Ghana. Using the Healthy Food-Environment Policy Index (Food-EPI), a panel comprising government and independent experts (n = 19) rated government action to improve the healthiness of food environment in Ghana against international best practices and according to steps within a policy cycle. Forty-three good practice indicators of food environment policy and infrastructure support were used, with ratings informed by systematically collected evidence of action validated by government officials. Following the rating exercise, the expert panel proposed and prioritized actions for government implementation. Three-quarters of all good practice indicators were rated at 'low'/'very little' implementation. Restricting the marketing of breast milk substitutes was the only indicator rated "very high". Of ten policy actions prioritized for implementation, restricting unhealthy food marketing in children's settings and in the media were ranked the highest priority. Providing sufficient funds for nationally-relevant research on nutrition and NCDs was the highest priority infrastructure-support action. Other priority infrastructure-support actions related to leadership, monitoring and evaluation. This study identified gaps in Ghana's implementation of internationally-recommended policies to promote healthy food environments. National stakeholders recommended actions, which will require legislation and leadership. The findings provide a baseline for measuring government progress towards implementing effective policies to prevent NR-NCDs.
| S-EPMC7299075 | biostudies-literature
Project description:BackgroundA multifaceted response, including government action, is essential to improve population levels of physical activity (PA). This article describes the development process of the 'Physical Activity Environment Policy Index' (PA-EPI) monitoring framework, a tool to assess government policies and actions for creating a healthy PA environment.MethodsAn iterative process was undertaken. This involved a review of policy documents from authoritative organizations, a PA policy audit of four European countries, and a systematic review of scientific literature. This was followed by an online consultation with academic experts (N = 101; 20 countries, 72% response rate), and policymakers (N = 40, 4 EU countries). During this process, consensus workshops were conducted, where quantitative and qualitative data, alongside theoretical and pragmatic considerations, were used to inform PA-EPI development.ResultsThe PA-EPI is conceptualized as a two-component 'policy' and 'infrastructure support' framework. The two-components comprise eight policy and seven infrastructure support domains. The policy domains are education, transport, urban design, healthcare, public education (including mass media), sport-for-all, workplaces and community. The infrastructure support domains are leadership, governance, monitoring and intelligence, funding and resources, platforms for interaction, workforce development and health-in-all-policies. Forty-five 'good practice statements' or indicators of ideal good practice within each domain conclude the PA-EPI. A potential eight-step process for conducting the PA-EPI is described.ConclusionsOnce pre-tested and piloted in several countries of various sizes and income levels, the PA-EPI good practice statements will evolve into benchmarks established by governments at the forefront of creating and implementing policies to address inactivity.
| S-EPMC9706113 | biostudies-literature
Project description:Background & aimsIt is estimated that 3.26 million children and adolescents worldwide have chronic HCV infection. To date, the global response has focused on the adult population, but direct-acting antiviral (DAA) regimens are now approved for children aged ?3 years. This global review describes the current status of policies on HCV testing and treatment in children, adolescents, and pregnant women in WHO Member States.MethodsWe identified national strategic plans and/or clinical practice guidelines (CPGs) for HCV infection from a World Health Organization (WHO) database of national policies from Member States as of August 2019. A standardised proforma was used to abstract data on polices or recommendations on testing and treatment in children, adolescents and pregnant women. Analysis was stratified according to the country-income status and results were validated through WHO regional focal points through August 2020.ResultsNational HCV policies were available for 122 of the 194 WHO Member States. Of these, the majority (n = 71/122, 58%) contained no policy recommendations for either testing or treatment in children or adolescents. Of the 51 countries with policies, 24 had specific policies for both testing and treatment, and were mainly from the European region; 18 countries for HCV testing only (12 from high- or upper-middle income); and 9 countries for treatment only (7 high- or upper-middle income). Twenty-one countries provided specific treatment recommendations: 13 recommended DAA-based regimens for adolescents ?12 years and 6 still recommended interferon/ribavirin-based regimens.ConclusionsThere are significant gaps in policies for HCV-infected children and adolescents. Updated guidance on testing and treatment with newly approved DAA regimens for younger age groups is needed, especially in most affected countries.Lay summaryTo date, the predominant focus of the global response towards elimination of hepatitis C has been on the testing and treatment of adults. Much less attention has been paid to testing and treatment among children and adolescents, although in 2018 an estimated 3.26 million were infected with HCV. Our review shows that many countries have no national guidance on HCV testing and treatment in children and adolescents. It highlights the urgent need for advocacy and updated policies and guidelines specific for children and adolescents.
| S-EPMC7898178 | biostudies-literature
Project description:Many low-income countries (LICs), including Nepal, endeavour to deliver climate mitigation by reducing greenhouse gas (GHG) emissions and achieving more sustainable resource consumption. However, their prospects of delivering on such goals alongside the rapid structural changes in the economy prevalent in the LICs are not clear. This research aims to better understand the underlying complexity in the linkage between the framing of climate mitigation actions into government policies and the prospects for their delivery. We use critical discourse analysis, post-structural discourse analysis, and thematic analysis of textual data corpus generated from government policies (n = 12) and semi-structured interviews (n = 12) with policy actors, such as government policymakers and private sector and non-government organisations' representatives. We also develop energy and material consumption and GHG emissions models to predict their values up to 2050 via the R tools and machine learning algorithms that validate the accuracy of models. Our findings suggest that the social context of policymaking creates a knowledge structure on climate mitigation which is reflected in government policies. The policy actors and their institutions exchange their ideas and interests in a deliberative and collaborative environment to prioritise policies for the energy, forest, and transport sectors to deliver climate mitigation actions in Nepal. However, the energy sector, together with the agriculture sector, has insufficient climate mitigation actions. Reflecting on the high proportion of biomass in the energy mix and the rapid rise in fossil fuel and energy consumption per capita-both of which are driven by the remittance inflows-this research suggests measures to reduce these in an absolute sense.
| S-EPMC9034080 | biostudies-literature
Project description:BackgroundChina has made tremendous progresses in serving the needs of its people living with rare diseases in the past decade, especially over the last 5 years. The Chinese government's systematic approach included a series of coordinated initiatives, amongst these are: forming the Rare Disease Expert Committee (2016), funding the "Rare Diseases Cohort Study" (2016-2020), and publishing its first "Rare Disease Catalog" (2018). Herein, we present the National Rare Diseases Registry System (NRDRS)-China's first national rare diseases registry, and the analysis of cases registered in the first 5 years ending Dec 31, 2020.ResultsThe total 62,590 cases covered 166 disease/disease types, forming 183 disease cohorts. The data from nearly 22% of them (13,947 cases) is also linked to valuable biological samples. The average age of definitive diagnosis was 30.88 years; 36.07% of cases were under 18 years of age. Regional distribution analysis showed 60% of cases were from the more developed, wealthier East and North China, suggesting the local availability of quality care and patients' financial status were key access factors. Finally, 82.04% of cases were registered from the five clinical departments: Neurology, Endocrine, Hematology, Cardiovascular, and Nephrology, suggesting that either these are most affected by rare diseases, or that there were disease non-specific ascertainment factors.ConclusionsThe preliminary analysis of the first 5-year's data provides unique and valuable insight on rare disease distribution in China, and higlights the directions for enhancing equity, scale and utility.
| S-EPMC8684272 | biostudies-literature
Project description:AimThe outbreak of the new coronavirus pandemic (SARS-CoV-2) was initiated in December 2019, and within a couple of months it became a global health emergency. Given the importance to assess the evolution and transmissibility of SARS-CoV-2 and to forecast the next scenario of the pandemic, mainly in countries with limited healthcare systems, we estimated the reproductive number (R0) of SARS-CoV-2 in Jammu and Kashmir (J&K), India, and a possible scenario for this pandemic in the region.Subject and methodsWe estimated the reproductive number (R0) of SARS-CoV-2 in its first outbreak stage in the northwestern region of Himalaya, India, and we also predicted new daily cases for the next 90 days using different R0, testing a plausible end of the SARS-CoV-2 outbreak.ResultsOur results showed a considerable increase in the number of cases, but with a tendency to asymptote. Anantnag, Bandipora, Baramulla, Shopian, and Srinagar districts showed more than 100 cases and Kulgam and Kathua districts showed strong growth of the number of cases from the beginning of May, without a tendency to normalization. The estimated R0 for the J&K region was 1.041; but by decreasing the RO by 10, 25, and 50%, we observed a great decrease in the daily number of new cases, especially by decreasing by 50%.ConclusionIn this study, we indicate positive effects of the preventive measures, such as lockdown and social distancing, taken in the J&K region, showing a stabilization of the growth curves of new cases of SARS-CoV-2, which tends to a strong decrease over time as the R0 decreases.
| S-EPMC8049861 | biostudies-literature
Project description:The International Rare Diseases Research Consortium (IRDiRC) has agreed on IRDiRC Policies and Guidelines, following extensive deliberations and discussions in 2012 and 2013, as a first step towards improving coordination of research efforts worldwide. The 25 funding members and 3 patient umbrella organizations (as of early 2013) of IRDiRC, a consortium of research funders that focuses on improving diagnosis and therapy for rare disease patients, agreed in Dublin, Ireland in April 2013 on the Policies and Guidelines that emphasize collaboration in rare disease research, the involvement of patients and their representatives in all relevant aspects of research, as well as the sharing of data and resources. The Policies and Guidelines provide guidance on ontologies, diagnostics, biomarkers, patient registries, biobanks, natural history, therapeutics, models, publication, intellectual property, and communication. Most IRDiRC members-currently nearly 50 strong-have since incorporated its policies in their funding calls and some have chosen to exceed the requirements laid out, for instance in relation to data sharing. The IRDiRC Policies and Guidelines are the first, detailed agreement of major public and private funding organizations worldwide to govern rare disease research, and may serve as a template for other areas of international research collaboration. While it is too early to assess their full impact on research productivity and patient benefit, the IRDiRC Policies and Guidelines have already contributed significantly to improving transparency and collaboration in rare disease research.
| S-EPMC5865169 | biostudies-literature
Project description:BackgroundGlobally, the threat of infectious diseases, particularly emerging infectious diseases, originating at the human-animal-environment interface, has caught health systems off guard. With forecasts that future pathogen emergence will be centred in hotspots in Asia, Africa, and Latin America, the need to prepare policy frameworks that can combat this threat is urgent.DiscussionEmergence of diseases such as avian influenza and Ebola virus disease, which threatened social disruption, have established the need for intersectoral coordination/collaboration. These events led to the initiation of establishing institutionalised collaborative frameworks in India to adopt a One Health approach to disease prevention and control. However, the gains made in influenza control could not be adapted to other infectious diseases. Intersectoral coordination was briefly carried out, more as a reactive response to threats. The systemic failure to sustain such efforts have therefore, only undermined a coordinated response. The recent draft National Health Policy, 2015, has also failed to establish the need for intersectoral coordination in disease control approaches. Neglecting the need to endorse linkages between human health, animal health and husbandry, agriculture, and environmental sectors, has led to duplicative and weak response systems. The absence of health impact assessment with respect to the development agenda in policies, has cast negative effects on the health and wellbeing of man, animal, and the environment. Lack of attention to building core capacity in these critical sectors has further raised challenges in designing and deploying mitigation strategies. With developing countries like India being home to a major portion of the world's poorest livestock farmers, the absence of a policy discourse that endorses the One Health approach in development and health policies is a major hurdle in eliminating poverty and poverty-related diseases.ConclusionsThe adoption of One Health approaches in health and related sectoral policies is a critical policy requirement for India and other developing countries. The goal should be to not just establish preparedness plans, but also to encourage a policy environment where assessment and mitigation of downstream impacts of different agenda are incorporated.
| S-EPMC5047123 | biostudies-literature
Project description:BackgroundAntimicrobial resistance (AMR) poses an increasing public health threat to low- and lower-middle income countries. Recent studies found that in fact poor governance and transparency correlate more strongly with AMR than factors such as antibiotic use. While many African countries now have national action plans (NAPs) on AMR, it is unclear whether information is publicly available on their implementation, surveillance and financing.MethodsHere, the transparency of information related to AMR national action plans in 15 African countries is assessed, based on a governance framework for AMR action plans. Public availability is assessed for AMR documents, progress reports, AMR surveillance data, budget allocations, as well as bodies and persons responsible for implementation of NAPs. Government websites and search engines were perused using search terms related to the studied criteria and countries.ResultsResults show that most countries have a national action plan publicly available. AMR surveillance data was available for a few countries, but systematic progress reports and funding allocations were absent in all but one country. Information on a body mandated to coordinate NAP implementation was available for most countries, but their functionality remain unclear. Most countries have nominated at least one person responsible for AMR nationally. In general, information was often fragmented and frequently available on external, non-government websites. It appears that commitments on AMR made in the often comprehensive NAPs are rarely met in a timely manner, exhibiting rather weak accountability for AMR results. The article provides concrete policy recommendations on how transparency and accountability may be improved with little effort.ConclusionsMaking information available can enable stakeholders such as civil society to demand accountability for results and lead to much needed specific actions on curbing AMR in countries.
| S-EPMC8785006 | biostudies-literature