Distortions of parliamentary amendments to the equitable allocation of federal resources to the PAB / Distorções das emendas parlamentares à alocação equitativa de recursos federais ao PAB

ABSTRACT OBJECTIVE Analyze the implications of parliamentary amendments (EP) for the model of equitable allocation of resources from the Fixed Primary Care Minimum (PAB-Fixo) to municipalities in the period from 2015 to 2019. METHODS A descriptive and exploratory study was conducted on allocating federal resources to the PAB-Fixo and on the increment in the PAB by parliamentary amendment. The municipalities were classified into four groups according to degrees of socioeconomic vulnerability defined by the Ministry of Health for the allocation of PAB-Fixo resources. The transfers from the Ministry by parliamentary amendment were identified. The proportions of municipalities benefiting per group were analyzed by resources allocated from the PAB-Fixo and increment to the minimum by EP. RESULTS There were reduced resources allocated to the PAB-Fixo (from R$ 6.04 billion to R$ 5.51 billion, -8.8%) and increased increment to PAB by parliamentary amendment (from R$ 95.06 million to R$ 5.58 billion, 5.767%) between 2015 and 2019. The participation of municipalities by the group of those favored by EP was similar to that in the PAB-Fixo. In the proportion of resources for amendments, the municipalities of group I (most vulnerable) had more participation, and those of group IV had less participation if compared to the allocation of the PAB-Fixo. The distribution of resources by the parliamentary amendment did not cover all municipalities, even the most vulnerable ones, i.e., belonging to groups I and II. There was great inequality of resources per capita according to the groups of municipalities. CONCLUSION The EP distorted the model of equitable allocation of resources proposed by the Ministry of Health for the PAB-Fixo, by allocating resources in a much more significant proportion to the municipalities of group I and much less to those of group IV, which is in disagreement with this model. Furthermore, this distribution by amendments does not benefit all municipalities, not even the most vulnerable.

RESUMO OBJETIVO Analisar as implicações das emendas parlamentares (EP) para o modelo de alocação equitativa de recursos do Piso da Atenção Básica Fixo (PAB-Fixo) aos municípios no período de 2015 a 2019. MÉTODOS Realizou-se um estudo descritivo e exploratório da alocação de recursos federais para o PAB-Fixo e para incremento ao PAB por emenda parlamentar. Os municípios foram classificados em quatro grupos, segundo graus de vulnerabilidade socioeconômica definidos pelo Ministério da Saúde para destinação de recursos do PAB-Fixo. Os repasses do ministério por emenda parlamentar foram identificados, analisando-se as proporções de municípios beneficiados em cada grupo por recursos alocados do PAB-Fixo e do incremento ao piso por EP. RESULTADOS Verificou-se redução dos recursos alocados ao PAB-Fixo (de R$ 6,04 bilhões para R$ 5,51 bilhões, -8,8%) e aumento do incremento ao PAB por emenda parlamentar (de R$ 95,06 milhões para R$ 5,58 bilhões, 5.767%) entre 2015 e 2019. A participação dos municípios por grupo dos que foram favorecidos por EP foi semelhante à dos municípios do PAB-Fixo. Na proporção de recursos por emendas, os municípios do grupo I (mais vulneráveis) tiveram maior participação e os do grupo IV, menor participação, se comparada à alocação do PAB-Fixo. A distribuição de recursos por emenda parlamentar não contemplou todos os municípios, mesmo aqueles mais vulneráveis, pertencentes aos grupos I e II. Houve grande desigualdade de recursos per capita segundo os grupos de municípios. CONCLUSÃO As EP distorceram o modelo de alocação equitativa de recursos proposto pelo Ministério da Saúde para o PAB-Fixo, ao destinar recursos em proporção muito maior para os municípios do grupo I e muito menor para os do grupo IV, o que está em desacordo com esse modelo, além disso essa distribuição por emendas não beneficia a todos os municípios, nem mesmo aos mais vulneráveis.

Public Appeals Challenging Criteria for Pediatric Organ Transplantation.

In this article, I review the ethical issues that arise in the allocation of deceased-donor organs to children and young adults. By analyzing the public media cases of Sarah Murnaghan, Amelia Rivera, and Riley Hancey, I assess whether public appeals to challenge inclusion and exclusion criteria for organ transplantation are ethical and under which circumstances. The issues of pediatric allocation with limited evidence and candidacy affected by factors such as intellectual disability and marijuana use are specifically discussed. Finally, I suggest that ethical public advocacy can coexist with well-evidenced transplant allocation if and when certain conditions (morally defensible criteria, expert evidence, nonprioritization of the poster child, and greater advocacy for organ transplantation in general) are met.

Assessing the effects of changes in care commissioning guidelines at a tertiary centre in London on the provision of NHS-funded procedures of limited clinical effectiveness: an 11-year retrospective database analysis.

OBJECTIVES: The main objective of this study was to assess the impact of changes in care commissioning policies on National Health Service (NHS)-funded cosmetic procedures over an 11-year period at our centre. SETTING: The setting was a tertiary care hospital in London regulated by the North Central London Hospitals NHS Trust care commissioning group. PARTICIPANTS: We included all patients logged on to our database at the time of the study which was 2087 but later excluded 61 from analysis due to insufficient information. PRIMARY AND SECONDARY OUTCOME MEASURES: The main outcome measures were the results of tribunal assessment for different cosmetic surgeries which were either accepted, rejected or inconclusive based on the panel meeting. RESULTS: There were a total of 2087 patient requests considered between 2004 and 2015, of which 715 (34%) were accepted, 1311 (63%) were declined and 61 (3%) had inconclusive results. The implementation of local care commissioning guidelines has reduced access to cosmetic surgeries. Within this period, the proportion of procedures accepted has fallen from 36% in 2004 to 21% in 2015 (χ2; p<0.05, 95% CI). CONCLUSION: Local guidance on procedures of limited clinical effectiveness is a useful, although not evidence-based selection process to reduce access to cosmetic surgery in line with increasing financial constraints. However, patients with a physical impairment may not receive treatment in comparison to previous years, and this can have a negative impact on their quality of life.

Contested evidence: a Dutch reimbursement decision taken to court.

This paper examines a remarkable lawsuit in health care rationing. The Patients Association for Interstitial Cystitis sued the Dutch National Health Care Institute for alleged misconduct against Interstitial Cystitis patients, as the Institute decided that bladder instillations with chondroitin sulphate or hyaluronic acid are no longer covered by the basic health insurance. The patients' organisation challenged the Institute for basing its standpoint on scientific evidence; overruling clinical expertise and patients' experiences. While scientific advice is often solicited in public health issues, simultaneously, the authority of scientific advice is increasingly being questioned in the public domain. Also, the judiciary is frequently called upon to adjudicate in rationing decisions. Based on an ethnographic study of the National Health Care Institute, drawing on insights from the field of Science and Technology Studies, we analyse this lawsuit as a negotiation of what knowledge counts in reimbursement decisions.

Ética de la equidad y justicia en el acceso al diagnóstico, tratamiento y rehabilitación de los pacientes con enfermedades raras / Ethics of equity and justice in access to diagnosis, treatment and rehabilitation of patients with rare diseases

Las enfermedades raras se definen por su reducida frecuencia en la población, lo que supone numerosas consecuencias adversas, tanto a nivel médico como social. Estas patologías, al ser poco conocidas, tienen un diagnóstico tardío y no cuentan con tratamientos específicos para muchas de ellas. Se caracterizan por ser enfermedades crónicas, degenerativas, invalidantes con calidad de vida disminuida, pérdida de autonomía, alto nivel de dolor y sufrimiento de la persona y su familia, y generalmente ponen en riesgo la vida. Aquellas que tienen un tratamiento específico son de tan alto costo que no pueden ser financiadas por el paciente sin el aporte estatal. Esta situación implica desde el punto de vista ético la necesidad de considerar el principio de Beneficencia y de Justicia Social en las decisiones que se adopten.

Rare diseases are defined by the reduced frequency in the population, leading to numerous adverse consequences, both at medical and social level. These pathologies, being little known, the diagnose is late or non-existent and there are no specific treatments for many of them. They are characterized by debilitating, degenerative, chronic diseases with decreased quality of life, loss of autonomy, high level of pain and suffering of the person and his family, and usually life threatening. Those with specific treatment are so costly that they can not be financed by the patient without the state contribution. This situation results from the ethical point of view the need to consider the principle of Beneficence and Social Justice in the decisions taken.

Analysis of pediatric lung donor allocation policy: a call for change?

In an unprecedented legal ruling in June 2013, a US federal district court judge decided that the existing policy for donor lung allocation be vacated to save the life of a ten-year-old girl dying from cystic fibrosis. This case has fueled much controversy in the United States among policy makers, ethicists, and physicians who treat other patients awaiting transplant. This article examines the creation of the current US lung allocation policy and its impact on outcomes and analyzes the multidimensionality of the ruling. After analyzing the current policy and investigating alternatives for donor pool expansion, the article concludes by articulating options that may mitigate the need for current policy revision.

[How is the implementation of the new legal framework for health care affecting HIV-infected immigrants in an irregular situation in Spain?]. / ¿Cómo está afectando la aplicación del nuevo marco legal sanitario a la asistencia de los inmigrantes infectados por el VIH en situación irregular en España?

INTRODUCTION: The entry into force of Royal Decree (RD) 16/2012 in Spain in September 2012 led to the exclusion of the group of irregular immigrants from the National Healthcare System. With this work, GESIDA attempts to measure the impact of the entry into force of the RD in relation to its application by the Autonomous Communities (CCAA), and how it has affected the health care of irregular immigrants infected with HIV. METHODS: Information was requested from the 17 CCAA of the existence of measures to ensure the care and treatment of people with HIV infection that were left unprotected because of the implementation of the RD. Likewise, a survey was conducted on health professionals and NGOs involved in the care of these people, to find out how it has affected the implementation of the RD to their daily healthcare work and the availability of information on regulations to implement it. RESULTS: The response of the CCAA was variable, hardly contributing, in some cases, to mitigate the negative effect of the RD. To this is added a complex bureaucracy to access the benefits offered by some regions, often inaccessible to the most vulnerable subjects. Lack of information for health-care professionals and NGOs involved in the care of immigrants, hinders access of this population to health care and the establishment of control measures for diseases with an impact on the public health. CONCLUSIONS: The RD 16/2012 has had a negative impact on daily healthcare working, generating the appearance of deep inequities throughout the country.

[Rationing in German health care with particular consideration of oncology: view points of German stakeholders--a qualitative interview study]. / Rationierung im deutschen Gesundheitswesen unter besonderer Berücksichtigung der Onkologie: Sichtweisen deutscher Entscheidungsträger--eine qualitativen Interviewstudie.

AIM: Germany is at the beginning of a discussion about possible rationing in the health-care system. Cancer treatment, which is often cost-intensive but not always cost-effective, is frequently considered as a field for rationing. METHODS: Against this background, we conducted semi-structured, guideline-based interviews with different stakeholders of the German health-care system and analysed them with the help of grounded theory techniques. The goal of the study was to collect the experiences and opinions of members of the German Medical Review Board of the Statutory Health Insurance Funds (MDK), leading officials in central administrations of the German health-care sector and health politicians (members of the Parliamentary Committee for Health of the Federal German Parliament, the Bundestag) regarding cost-considerations in treatment decisions in health care with a special focus on oncology. RESULTS: (1) Cost-considerations have a limited role in the daily routine of the interviewed experts; (2) the interviewed personnel of the MDK were open to discuss rationing, while the group of leading officials was ambivalent and the health politicians rejected rationing and its discussion altogether; (3) the awareness of the opportunity costs of medical services varied with the profession of the interviewee: the members of the MDK saw opportunity costs primarily within the field of medicine, the leading officials noted the opportunity costs for other social services, and the health policy makers interpreted opportunity costs under fiscal budgetary aspects; (4) according to the interviewees, decisions on rationing require a legal basis, which should be based on a broad public discussion and an interdisciplinary debate among experts; (5) defining criteria for rationing was regarded as being outside of the professional competence of the interviewees; however, a preference with regard to the criterion of cost-effectiveness became apparent. CONCLUSIONS: The results of this study indicate that the strongest opposition to a debate on rationing in Germany does not stem from the medical, but rather from the political sector. The criteria for rationing suggested in the theoretical debate are in need of a context-sensitive examination and specification for the field of oncology. A possible approach to constructively promote the debate on rationing is a stronger focus on social opportunity costs of health care. The exact role of experts in a discourse on rationing, which was emphasised by the interviewees, requires a thorough determination. It is necessary to differentiate between the roles of impartial experts and stakeholders. Decisions on rationing can ultimately only be legitimised politically by parliament.

Decision making in Germany: is health economic evaluation as a supporting tool a sleeping beauty?

For many years, the legal situation within the statutory health insurance (SHI) system in Germany has allowed for health economic evaluations. There are various reasons why health economic evaluations have played virtually no role in decision making until now: to begin with, a method for the evaluation of the relation between benefits and costs which needed to be in accordance with the legal requirements had to be developed, the outcome of which was the efficiency frontier approach. Subsequent health care reforms have led to changing objectives and strategies. Currently, price negotiations of newly launched drugs are based on an early benefit assessment of dossiers submitted by pharmaceutical manufacturers. Other reasons might be the presently very comfortable financial situation of the statutory health insurance system as well as a historically grown societal fear and discomfort towards what is perceived to be a rationing of medicinal products. For the time being, it remains open how long the German health care system can afford to continue neglecting the benefits of health economic evaluations for drug and non-drug interventions, and when it will be time to wake this sleeping beauty.

[Rationalization and rationing at the bedside. A normative and empirical status quo analysis]. / Rationalisierung und Rationierung am Krankenbett. Normativ-empirische Analyse zum Status quo.

BACKGROUND: The topic of bedside rationing is increasingly discussed in Germany. Further need for clarification exists for the question how bedside rationing (e.g., in the area of overcare) can be justified despite coexistent inefficiencies. DISCUSSION: This paper outlines and analyses the relationship of waste avoidance and rationing from an ethical perspective. Empirical findings regarding the status quo of bedside rationing and rationalization are presented. These normative and empirical explorations will then be further specified regarding opportunities for future physician-driven activities to tackle overuse. CONCLUSION: The self-government partners in Germany should communicate more explicitly within their communities and to the public how and with which benchmarks they aim to reduce inefficient health care (overuse) in an appropriate manner. Physician-driven activities such as the "Choosing Wisely®" initiative in the USA could provide a first step to raise the awareness for overuse among physicians as well as in the public.