实现我国罕见病药品可及性的困境与对策研究

实现罕见病药品的可及性是保障我国罕见病患者生命健康权利的重要途径。目前我国罕见病药品还缺乏统一管理制度,文章从罕见病药品信息制度、药品保障制度和药品费用分担制度分析了我国罕见病药品实现可及性的现实困境。建议政府适时地采取恰当措施确保正义社会不损害罕见病患者维护健康的正当权益,建立罕见病药品的信息制度,增强药品的可获得性;建立罕见病药品的保障制度,促进药品的可供应性;完善多层次医疗保障体系,提高罕见病药品的可负担性。     

澳大利亚救生药物计划及对我国罕见病医疗救助制度的启示

目的:介绍澳大利亚救生药物计划,为完善我国罕见病医疗救助制度提供参考。方法:根据文献分析澳大利亚救生药物计划的主要内容和特点,并与国内罕见病医疗救助现状进行比较。结果:澳大利亚通过孤儿药资格认证和成本效益评估将符合条件的孤儿药纳入救生药物计划,并通过财政资助为罕见病患者提供免费的治疗药物。该计划规定了严格的孤儿药和患者纳入条件,建立了罕见病临床指南和专家咨询制度,并定期开展上市后再审查,提高了孤儿药的可及性。结论:我国应当借鉴澳大利亚经验,由国家主导罕见病和孤儿药的管理,在大病医疗保险的基础上探索符合我国国情的罕见病医疗救助制度。     

提高我国罕见病患者用药可及性的管理策略研究

目的 探索提高我国罕见病患者用药可及性的管理策略.方法 通过对我国近年典型罕见病用药事件进行分析研究、对医院管理和临床医疗专家进行访谈式问卷调查,以及对我国目前罕用药医疗保险政策进行分析研究,确定药品可及性的含义,明确影响罕见病患者用药可及性的障碍因素.结果 我国医药卫生系统目前主要在科技、供应、信息传递和医疗保障能力四个方面存在主、客观障碍因素,影响罕见病患者用药的可及性,患者呈现出用不到药、用药不及时和用不起药的特点.结论 提高我国罕见病患者用药的可及性,应明确罕见病与罕用药的基本概念和激励机制,设计提高医药卫生系统罕用药供应的反应性机制,构建政府、企业、患者三维主体协作模式,降低患者的经济负担.     

提高我国罕见病患者用药可及性的管理策略研究

目的 探索提高我国罕见病患者用药可及性的管理策略.方法 通过对我国近年典型罕见病用药事件进行分析研究、对医院管理和临床医疗专家进行访谈式问卷调查,以及对我国目前罕用药医疗保险政策进行分析研究,确定药品可及性的含义,明确影响罕见病患者用药可及性的障碍因素.结果 我国医药卫生系统目前主要在科技、供应、信息传递和医疗保障能力四个方面存在主、客观障碍因素,影响罕见病患者用药的可及性,患者呈现出用不到药、用药不及时和用不起药的特点.结论 提高我国罕见病患者用药的可及性,应明确罕见病与罕用药的基本概念和激励机制,设计提高医药卫生系统罕用药供应的反应性机制,构建政府、企业、患者三维主体协作模式,降低患者的经济负担.     

提高我国罕见病患者用药可及性的管理策略研究

目的 探索提高我国罕见病患者用药可及性的管理策略.方法 通过对我国近年典型罕见病用药事件进行分析研究、对医院管理和临床医疗专家进行访谈式问卷调查,以及对我国目前罕用药医疗保险政策进行分析研究,确定药品可及性的含义,明确影响罕见病患者用药可及性的障碍因素.结果 我国医药卫生系统目前主要在科技、供应、信息传递和医疗保障能力四个方面存在主、客观障碍因素,影响罕见病患者用药的可及性,患者呈现出用不到药、用药不及时和用不起药的特点.结论 提高我国罕见病患者用药的可及性,应明确罕见病与罕用药的基本概念和激励机制,设计提高医药卫生系统罕用药供应的反应性机制,构建政府、企业、患者三维主体协作模式,降低患者的经济负担.     

国内外罕见病患者医疗保障现状探讨及启示

目的通过了解国外罕见病患者医疗保障现状,为国内罕见病患者医疗保障改进提供借鉴,为完善我国罕见病立法及政策提出初步构想。方法检索2006年-2016年国外关于罕见病患者医疗保障的文献,对文献观点及结论进行统计分析。结果国外对于罕见病患者的医疗保障主要以界定罕见病内涵、提高罕见病药品可及性与医疗保险报销比重等方面作为讨论重点。结论罕见病患者医疗保障在不同国家和地区存在差异,本研究涉及鼓励罕见病科学研究、规范罕见病药物管理、增加罕见病在医疗保险体系中的占有率等若干策略     

我国罕见病患者医疗保障现状及改进建议

系统梳理了国家层面和地方层面针对罕见病患者的医疗保障政策,分析了罕见病患者医疗保障制度存在的现实问题——制度供给不足与定位不清、诊疗水平局限与地区差异、药品可及性差,从制度供给、诊疗水平、药物保障三个方面提出加强我国罕见病患者医疗保障的具体建议。     

国外罕见病药物政策发展现状对比分析

对国外罕见病药物政策发展现状进行分析。描述了各国的罕见病药物政策发展现状。通过对比发现差异并总结罕见病药物制度的实施对罕见病领域的研究和人类健康事业发展产生的影响,也为各国罕见病的政策制定及公共卫生事业发展提供参考。     

基于政策工具视角的我国罕见病领域政策文本分析

目的:总结我国罕见病领域相关政策的关键要素及不足,为我国罕见病领域后续政策的制定与完善提供参考。方法:采用内容分析法,构建“政策目标—政策工具”分析框架对我国32份国家层面的罕见病领域相关政策进行量化分析。结果:我国罕见病领域政策目标为提升罕见病药品可及性、提升罕见病诊疗水平和提高罕见病患者保障水平,应用于上述目标的政策工具比例分别为50%、44.87%和5.13%。讨论:我国罕见病领域政策目标集中在罕见病药品可及性及诊疗水平提升;相关政策工具的选择和使用存在一定失衡或缺失,环境型政策工具使用较多,需求型政策工具使用较少。建议:今后在政策设计上应加强罕见病防治与管理,促进罕见病药品的研发、上市与使用,健全罕见病保障机制,完善罕见病政策体系。     

中国罕见病保障机制：现状、挑战与建议

当前,我国部分地区积极探索建立罕见病保障机制,包括医疗服务保障、药品供应保障、费用保障。在此过程中,面临系统性思维欠缺、诊疗服务能力不强、药物供应保障能力不足、费用分担机制不健全等挑战。对此,要强化系统思维,加强部门联动,加速形成罕见病保障机制共识;加强罕见病诊疗技术研究,提升罕见病诊疗服务能力;完善罕见病药品的全流程支持性政策,提升罕见病药品的可及性;汲取地方有益经验,加快建立全国性的罕见病多层次费用保障机制。     

The human drama of genetics: 'hard' and 'soft' media representations of inherited breast cancer

This paper examines media coverage of 'breast cancer genetics', and explores its implications for public understanding. We present a content analysis of coverage in British newspapers and look at a variety of popular forms, including women's magazines, television soap opera and radio drama. Genetic/inherited risk receives a great deal of coverage across a wide range of media formats and outlets. Much of this attention has focused on individuals from 'high risk families' and dilemmas around prophylactic mastectomies. Through examining media coverage, combined with interviews with media personnel and their sources, we show why this story proved so attractive to the media and highlight the different production values which influence coverage. Finally, we introduce preliminary findings from focus group discussions to demonstrate how such 'human interest' framing has engaged audience attention and influenced public understandings. The paper concludes by highlighting the implications for analysing, predicting, and engaging with, media representations of science.     

Worker education in the primary prevention of occupational dermatoses

This paper reports the evaluation of a skin care education programmeconducted on a fine chemicals manufacturing site where over1,000 employees are located. Approximately 60% are involvedin chemical manufacture. Over a 12 month period production staffreceived training in prevention of occupational dermatoses linkedto a site-wide poster initiative. The incidence of new casesof occupational dermatoses fell from 0.055 (70 cases in 1,277employees) to 0.021 (27 cases in 1,277 employees) before andafter the intervention respectively (p<0.0001). After otherfactors such as chemicals handled, observer bias and changesin reporting related to socioeconomic climate were taken intoaccount it is concluded that this study demonstrates the importanceof worker education as a tool for primary prevention of disease.Training materials such as video and poster presentations maybe effectively used in the chemical manufacturing industry asan adjunct to prevention and control of exposure to substanceshazardous to the skin. Such methods may also be used in otherindustries where there are significant risks of dermatoses.     

Regional Variation in Travel-related Illness acquired in Africa,March 1997–May 2011

To understand geographic variation in travel-related illness acquired in distinct African regions, we used the GeoSentinel Surveillance Network database to analyze records for 16,893 ill travelers returning from Africa over a 14-year period. Travelers to northern Africa most commonly reported gastrointestinal illnesses and dog bites. Febrile illnesses were more common in travelers returning from sub-Saharan countries. Eleven travelers died, 9 of malaria; these deaths occurred mainly among male business travelers to sub-Saharan Africa. The profile of illness varied substantially by region: malaria predominated in travelers returning from Central and Western Africa; schistosomiasis, strongyloidiasis, and dengue from Eastern and Western Africa; and loaisis from Central Africa. There were few reports of vaccine-preventable infections, HIV infection, and tuberculosis. Geographic profiling of illness acquired during travel to Africa guides targeted pretravel advice, expedites diagnosis in ill returning travelers, and may influence destination choices in tourism.     

The design of hazard risk assessment matrices for ranking occupational health risks and their application in mining and minerals processing

Two hazard risk assessment matrices for the ranking of occupational health risks are described. The qualitative matrix uses qualitative measures of probability and consequence to determine risk assessment codes for hazard-disease combinations. A walk-through survey of an underground metalliferous mine and concentrator is used to demonstrate how the qualitative matrix can be applied to determine priorities for the control of occupational health hazards. The semi-quantitative matrix uses attributable risk as a quantitative measure of probability and uses qualitative measures of consequence. A practical application of this matrix is the determination of occupational health priorities using existing epidemiological studies. Calculated attributable risks from epidemiological studies of hazard-disease combinations in mining and minerals processing are used as examples. These historic response data do not reflect the risks associated with current exposures. A method using current exposure data, known exposure-response relationships and the semi-quantitative matrix is proposed for more accurate and current risk rankings.     

Psychopathological features of a patient population of targets of workplace bullying

BACKGROUND: A strong association between workplace bullying and subsequent anxiety and depression, indicated by empirical research, suggests that bullying is an aetiological factor for mental health problems. AIMS: To evaluate levels of stress and anxiety-depression disorder developed by targets of workplace bullying together with outcome at 12 months and to characterize this population in terms of psychopathology and sociodemographic features. METHODS: Forty-eight patients (36 women and 12 men) meeting Leymann Inventory of Psychological Terror criteria for bullying were included in a prospective study. Evaluations were performed at first consultation and at 12 months using a standard clinical interview, a visual analogue scale of stress, the Hospital Anxiety and Depression (HAD) scale, the Beech scale of stress in the workplace and a projective test (Picture-Frustration Study). RESULTS: At first consultation, 81% of patients showed high levels of perceived stress at work and 83 and 52% presented with anxiety or depression, respectively. At 12 months, only 19% of working patients expressed a feeling of stress at work. There was a significant change in symptoms of anxiety while there was no change in symptoms of depression. Stress at work and depression influenced significatively capacity to go back to work. At 12-month assessments, workers showed a significantly better score on the HAD scale than non-workers. Over half the targets presented a neuroticism-related predominant personality trait. CONCLUSION: Workplace bullying can have severe mental health repercussions, triggering serious and persistent underlying disorders.     

The rise and fall in incidence of malignant mesothelioma from a British Naval Dockyard, 1979-1999

BACKGROUND: The incidence of malignant mesothelioma in Britain is predicted to rise over the next 15-25 years because of past failure to protect the workforce against inhalation of asbestos. In British Naval dockyards, alternative insulation materials and respiratory protection were introduced from the mid-1960s. Aims This study was carried out to investigate the effects of these control measures on mesothelioma deaths in dockyard workers. METHODS: Cases of mesothelioma of the pleura and peritoneum between 1979 and 1999 in workers from the Devonport Naval Dockyard, south-west England, were sought from coroners' and medico-legal records. RESULTS: Three hundred and one cases were identified, 7% peritoneal. The peak incidence occurred in 1991 with 25 cases per annum (quadratic model fit R(2) = 74.2%, P < 0.001) and we predict that by 2003 the incidence will fall to fewer than five cases per annum. The mean time between first exposure and presentation was 48.5 years [95% confidence interval (CI) = 47.3-49.8], but this was significantly shorter in the more heavily exposed trades, when compared with the less heavily exposed (42 years, 95% CI = 39.0-45.0, versus 49.5 years, 95% CI = 48.2-50.9). Those with higher exposure were also at significantly greater risk of peritoneal disease (P < 0.023, Fisher's exact test). CONCLUSION: The reduction in incidence of mesothelioma is greater than can be accounted for by reduction in numbers of dockyard workers over the last 50 years. Changes in insulation materials and improved industrial hygiene measures introduced into the Devonport Dockyard from the mid-1960s have resulted in an earlier decline in the incidence of malignant mesothelioma than that predicted for the British workforce as a whole.     

Organophosphate toxicity and occupational exposure

The ubiquitous organophosphates present a continuing health hazard in agriculture, public health eradication programmes and as chemical warfare agents. Despite significant progress in understanding the potential mechanisms of toxicity far beyond the commonly accepted mechanism of cholinesterase inhibition in intentional exposures, the precise health effects following occupational exposures are yet to be completely defined. A much greater understanding exists of the clinical features of organophosphate poisoning. These are characterized by a triphasic response involving an initial acute cholinergic phase, an intermediate syndrome (both associated with high mortality) and a disabling but non-lethal delayed polyneuropathy. The delayed polyneuropathy may occur in the absence of the cholinergic or intermediate phases. However, progress is still required in order to improve the quantification and assessment of occupational exposures and the implementation of appropriate preventive measures. Finally, evidence-based guidelines for appropriate or optimal therapeutic interventions following poisoning are required urgently and collaborative work with colleagues in developing countries, where the occurrence of organophosphate exposures is more frequent, may provide the answers.     

Miliaria rubra of the lower limbs in underground miners

This report documents a case series of miliaria rubra of the lower limbs in miners at a deep underground metalliferous mine in tropical arid Australia. During the summer months of February and March 1999, all cases of miliaria rubra of the lower limbs in underground miners seen at the mine's medical centre were clinically examined and administered a questionnaire. Twenty-five patients were seen, an incidence of 56.4 cases per million man-hours. Miliaria rubra was most often located between the ankle and knee (88% of cases). Twenty-four percent had concurrent folliculitis and 20% had concurrent tinea. Thirty-two percent had a personal history of asthma. Walking through ground-water and splashing of the legs was common. Three to 4 weeks of sedentary duties in air conditioning was generally required to achieve resolution of miliaria rubra. The incidence of miliaria rubra of the lower limbs is 38% of the incidence of heat exhaustion at the same mine. The length of disablement is greater, however. Atopics may be at increased risk of miliaria rubra. Control measures are discussed.     

Planning research

The starting point for any research project should be a question.Once this has been defined and the relevant scientific literaturereviewed, a protocol should be drawn up. This will be used notonly as a guide to the conduct of the study and in the preparationof the final report, but also in seeking any financial supportand approvals that are required for the investigation. A protocolis normally arranged in sections covering the background tothe study, the question(s) that it will address, the methodsthat will be used for the collection and analysis of data, thestatistical power of the investigation (where relevant), anyethical considerations, and the financial input that will beneeded. A pilot study is often helpful where aspects of thestudy method are untried or of uncertainvalidity.     

Stress in the Norwegian police service

BACKGROUND: High levels of stress have been attributed to the conditions of police work, but there is little empirical evidence for this. AIMS: To develop a new instrument to measure job stress in the police; to assess the most severe and frequent police stressors; to compare levels of stress according to the demographic and organizational factors; and to study stress in relation to personality traits, work locus of control and coping strategies. METHODS: A comprehensive nationwide questionnaire survey of 3272 Norwegian police at all hierarchical levels, including the Norwegian Police Stress Survey (NPSS), the Job Stress Survey, the Basic Character Inventory, the Work Locus of Control Scale, and the Coping Strategies Scale. RESULTS: Work injuries were appraised as the most stressful but least frequent stressor and job pressure was reported the least severe but most frequent stressor. Females experienced job stressors less frequently, but appraised them as more severe than men did. Older police officers reported more job pressure severity and fewer work injuries. The police in districts where peer support was planned but not implemented, and who worked in districts with more than 50,000 inhabitants, perceived the lack of support more severely than others. The correlations between stress and personality traits, work locus of control, and coping were moderate. CONCLUSIONS: The NPSS captures police-specific stressors that are not adequately measured by global stress instruments. The study of stress in police work should preferably involve a nationwide use of police-specific stress instruments.