Safeguarding cancer research funding by European charities amidst the COVID-19 pandemic.

The COVID-19 outbreak has affected cancer research and cancer care. European cancer charities need to reconsider strategies for safeguarding income and supporting cancer researchers, in times when sustaining cancer research funding is more crucial than ever.

Valuing families' preferences for drug treatment: a discrete choice experiment.

BACKGROUND AND AIMS: The burden on family members of those who are dependent on illicit drugs is largely unidentified, despite the presence of significant negative financial, health and social impacts. This makes it difficult to provide appropriate services and support. This study aimed to assess the preferences for treatment attributes for heroin dependence among family members affected by the drug use of a relative and to obtain a measure of the intangible economic benefit. DESIGN: Discrete choice experiment. Data were analysed using mixed logit which accounted for repeated responses. SETTING: Australia. PARTICIPANTS: Eligible participants were Australian residents aged 18+ years with a relative with problematic drug use. Complete data on 237 respondents were analysed; 21 invalid responses were deleted. MEASUREMENTS: Participant preference for likelihood of staying in treatment, family conflict, own health status, contact with police and monetary contribution to a charitable organization providing treatment. FINDINGS: All attributes were significant, and the results suggest that there was a preference for longer time in treatment, less family discord, better own health status, less likelihood of their relative encountering police and, while they were willing to contribute to a charity for treatment to be available, they prefer to pay less, not more. In order of relative importance, participants were willing to pay an additional A$4.46 [95% confidence interval (CI) = 3.33-5.60] for treatment which resulted in an additional 1% of heroin users staying in treatment for longer than 3 months, A$42.00 (95% CI = 28.30-55.69) to avoid 5 days per week of family discord, A$87.94 (95% CI = 64.41-111.48) for treatment options that led to an improvement in their own health status and A$129.66 (95% CI = 53.50-205.87) for each 1% decline in the chance of police contact. CONCLUSIONS: Drug treatment in Australia appears to have intangible benefits for affected family members. Families are willing to pay for treatment which reduces family discord, improves their own health, increases time in treatment and reduces contact with police.

História da assistência hospitalar em São Paulo: a subvenção do Estado às misericórdias paulistas / History of hospital care in São Paulo: State grants to the misericórdia charitable associations

Resumo O artigo analisa como as santas casas de misericórdia do estado de São Paulo foram subvencionadas pelos governos municipais, provincial e estadual na passagem do século XIX para o XX. Para tanto, são discutidas as dotações orçamentárias realizadas de 1838 a 1915, com o fim de avaliar o repasse e a ampliação de verbas nesse ínterim. É possível notar que foi criada uma rede de assistência fortemente apoiada pelo Estado, mas efetivada pela assistência filantrópica. Essa rede de atendimento hospitalar permanece com o mesmo formato até pelo menos o primeiro terço do século XX, contexto em que se incluíam as misericórdias criadas pelo interior do estado paulista.

Abstract This article investigates how the santas casas de misericórdia charitable associations in the state of São Paulo were subsidized by the municipal, provincial, and state governments at the turn of the twentieth century. Budget appropriations from 1838 to 1915 were examined to evaluate these charitable grants as well as the growth in funding during this period. While a care network created with strong state backing, it was put into action by philanthropic assistance. This network of hospital care retained the same format until at least the first third of the twentieth century, and included misericórdia establishments created within the interior of the state of São Paulo.

Lots of little ones: Analysis of charitable donations to a hospice and palliative care unit in Taiwan.

BACKGROUND: Charitable donations play a major role in the provision of hospice and palliative care (HPC) services, most of which are not reimbursed by health insurance programs. A good understanding of the constitution and use of donations is thus conducive to maintaining a high-quality HPC unit. METHODS: The data sources were the publicly available balance sheet, work report, and donor lists of a foundation exclusively supporting one of the best HPC units in Taiwan in the fiscal year of 2017. The analysis included the donation amounts and frequencies by donor type (individual, corporate, and group) and the categories of expenses. RESULTS: The foundation received 3033 donations worth a total of 7.8 million New Taiwan dollars (NTD) (approximately 258 thousand US dollars) in 2017. Two-thirds of the donations were allocated to the provision of direct care services. Of the 3033 donations, only 11 (0.4%) were worth 100 000 NTD or more, while 108 (3.6%) were valued between 10 000 and 99 999 NTD, 1268 (41.8%) were valued between 1000 and 9999 NTD, and 1646 (54.2%) were worth less than 1000 NTD. Of 1051 donors, 974 (92.7%) were individuals, 378 (36.0%) donated more than once, and 106 (10.1%) donated 12 or more times in one year. CONCLUSION: HPC services in Taiwan are sponsored by lots of individuals and small donations. For sustainability of standards-based and quality HPC services, the benevolence of the public should be thus cherished and adequately responded to.

Financial Eligibility Criteria and Medication Coverage for Independent Charity Patient Assistance Programs.

Importance: Although independent charity patient assistance programs improve patient access to costly prescription drugs, recent federal investigations have raised questions about their potential to increase pharmaceutical spending and to violate the federal Anti-Kickback Statute. Little is known about the design of the programs, patient eligibility, or drug coverage. Objective: To examine the eligibility criteria of the independent charity patient assistance programs and the drugs covered by them. Design, Setting, and Participants: Descriptive cross-sectional study of the 6 largest independent charities offering patient assistance programs for patients including, but not limited to, Medicare beneficiaries in 2018. These charities offered 274 different disease-specific patient assistance programs. Drugs were identified for subgroup analysis that had any use reported on the Medicare Part D spending dashboard and any off-patent brand-name drugs that incurred more than $10 000 in Medicare spending per beneficiary in 2016. Exposures: Support by independent charity patient assistance programs. Main Outcomes and Measures: The primary outcomes were the characteristics of patient assistance programs, including assistance type, insurance coverage (vs uninsured), and income eligibility. The secondary outcomes were the cost of the drugs covered by the patient assistance programs and the coverage of expensive off-patent brand-name drugs vs substitutable generic drugs. Results: Among the 6 independent charity foundations included in the analysis, their total revenue in 2017 ranged from $24 million to $532 million, and expenditures on patient assistance programs ranged from $24 million to $353 million, representing on average, 86% of their revenue. Of the 274 patient assistance programs offered by these organizations, 168 (61%) provided only co-payment assistance, and the most common therapeutic area covered was cancer or cancer treatment-related symptoms (113 patient assistance programs; 41%). A total of 267 programs (97%) required insurance coverage as an eligibility criterion (ie, excluded uninsured patients). The most common income eligibility limit was 500% of the federal poverty level. The median annual cost of the drugs per beneficiary covered by the programs was $1157 (interquartile range, $247-$5609) compared with $367 (interquartile range, $100-$1500) for the noncovered drugs. Off-patent brand-name drugs (cost: >$10 000) were covered by a mean of 3.1 (SD, 2.0) patient assistance programs, whereas their generic equivalents were covered by a mean of 1.2 (SD, 1.0) patient assistance programs. Conclusions and Relevance: In 2018, among 274 patient assistance programs operated by the 6 independent charity foundations, the majority did not provide coverage for uninsured patients. Medications that were covered by the patient assistance programs were generally more expensive than those that were not covered.

Heart Disease in Adult Syrian Refugees: Experience at Jordan University Hospital.

BACKGROUND: Since 2011, 1.26 million Syrians have immigrated to Jordan, increasing demands on Healthcare service. Information about cardiovascular disease (CVD) in Syrian refugees in general, and specifically in Jordan, is unknown. OBJECTIVES: The study aimed to describe CVD in Syrian refugee adults who were referred to Jordan University Hospital (JUH) in terms of diagnosis, presentation, outcome, sources of funding for treatment, and to follow these patients after their discharge. METHODS: From January 2012 to October 2016, retrospective analysis was performed on the data of Syrian patients who were referred to JUH. This study describes the diagnoses, treatment, and outcome. It also discusses the funding sources; a follow-up was conducted until January 2017. RESULTS: There were 969 patients referred to JUH with CVD; median age was 56 years, 686 (72.2%) of them were males and 283 (27.8%) were females. Of the patients, 584 had hypertension (60%), 308 (31%) had diabetes mellitus, 281 (29.0%) suffered from dyslipidemia, and 237 were smokers (24%). There were 69.6% who had coronary artery disease (CAD) and 20 patients (2%) had valvular heart disease. Treatment was offered to 489 patients (49.5%), but only 322 (65.8% of treatment offered and 33.2% of referrals) of them received the intended treatment. Mortality rate was 3% and loss of follow-up was 49.2%. Funding for procedures mostly came from the Jordanian Health Aid Organization, the United Nations, NGOs, and charities. Sixty-four (13.3% of referred) patients were denied any funding during the time frame of this study. CONCLUSIONS: CVD is a major issue for both Syrian refugee patients and the Jordanian healthcare system. CAD and classic cardiovascular risk factors (specifically arterial hypertension, diabetes, and dyslipidemia) are most common in this specific population. Inadequate primary healthcare, suboptimal living conditions, lack of funding, and loss of patient contact are among the major challenges facing this vulnerable population.

Mapping the European cancer research landscape: An evidence base for national and Pan-European research and funding.

BACKGROUND: Cancer research is among the most active biomedical research domains for the European Union (EU). However, little quantitative empirical evidence is available to guide the decisions on the choice of disease site to study, specific research domain focus or allocation of research resources. To inform national/supranational cancer research policy, high-resolution intelligence is needed. METHODS: We performed a bibliometric analysis of European cancer research papers in the Web of Science from 2002 to 2013 to quantify research activity in each of the 28 EU Member States, along with Iceland, Norway and Switzerland (EUR31), which cancer sites/research domains they addressed, and their sources of financial support (2009-2013). FINDINGS: Cancer research papers from EUR31 correlated well with national Gross Domestic Products (r2 = 0.94). However, certain cancer sites (lung, oesophagus and pancreas) were under-researched relative to their disease burden, whereas central nervous system and blood cancers were more generously supported than their burden would warrant. An analysis of research domains indicated a paucity of research on radiotherapy (5%), palliative care (1.2%) and quality of life (0.5%). European cancer research funding in 2012-2013 amounted to ∼€7.6 billion and came from diverse sources, especially in western Europe/Scandinavia, where in nine countries the charitable sector outspent the government but not in Eastern Europe where charitable research funding barely exists. INTERPRETATION: Several countries need to increase their cancer research outputs substantially, and/or alter their research portfolios to better match their growing (and changing) cancer burden. More co-ordination among funding agencies is required, so that resources can be attuned to align activities to research gaps and perceived clinical needs. In Eastern Europe, the charitable funding sector needs to be developed, so that both public and patient advocacy can have an active role in research.

The impact and cost-effectiveness of the Amref Health Africa-Smile Train Cleft Lip and Palate Surgical Repair Programme in Eastern and Central Africa.

INTRODUCTION: Cleft lip with or without cleft palate (CLP) is a congenital malformation that causes significant morbidity in low and middle income countries. Amref Health Africa has partnered with Smile Train to provide CLP surgeries since 2006. METHODS: We analyzed anonymized data of 37,274 CLP patients from the Smile Train database operated on in eastern and central Africa between 2006 and 2014. Cases were analyzed by age, gender, country and surgery type. The impact of cleft surgery was determined by measuring averted Disability-Adjusted Life Years (DALYs) and delayed averted DALYs. We used mean Smile Train costs to calculate cost-effectiveness. We calculated economic benefit using the human capital approach and Value of Statistical Life (VSL) methods. RESULTS: The median age at time of primary surgery was 5.4 years. A total of 207,879 DALYs were averted at a total estimated cost of US$13 million. Mean averted DALYs per patient were 5.6, and mean cost per averted DALY was $62.8. Total delayed burden of disease from late age at surgery was 36,352 DALYs. Surgical correction resulted in $292 million in economic gain using the human capital approach and $2.4 billion using VSL methods. CONCLUSION: Cleft surgery is a cost-effective intervention to reduce disability and increase economic productivity in eastern and central Africa. Dedicated programs that provide essential CLP surgery can produce substantial clinical and economic benefits.

Quantifying the economic impact of government and charity funding of medical research on private research and development funding in the United Kingdom.

BACKGROUND: Government- and charity-funded medical research and private sector research and development (R&D) are widely held to be complements. The only attempts to measure this complementarity so far have used data from the United States of America and are inevitably increasingly out of date. This study estimates the magnitude of the effect of government and charity biomedical and health research expenditure in the United Kingdom (UK), separately and in total, on subsequent private pharmaceutical sector R&D expenditure in the UK. METHODS: The results for this study are obtained by fitting an econometric vector error correction model (VECM) to time series for biomedical and health R&D expenditure in the UK for ten disease areas (including 'other') for the government, charity and private sectors. The VECM model describes the relationship between public (i.e. government and charities combined) sector expenditure, private sector expenditure and global pharmaceutical sales as a combination of a long-term equilibrium and short-term movements. RESULTS: There is a statistically significant complementary relationship between public biomedical and health research expenditure and private pharmaceutical R&D expenditure. A 1% increase in public sector expenditure is associated in the best-fit model with a 0.81% increase in private sector expenditure. Sensitivity analysis produces a similar and statistically significant result with a slightly smaller positive elasticity of 0.68. Overall, every additional £1 of public research expenditure is associated with an additional £0.83-£1.07 of private sector R&D spend in the UK; 44% of that additional private sector expenditure occurs within 1 year, with the remainder accumulating over decades. This spillover effect implies a real annual rate of return (in terms of economic impact) to public biomedical and health research in the UK of 15-18%. When combined with previous estimates of the health gain that results from public medical research in cancer and cardiovascular disease, the total rate of return would be around 24-28%. CONCLUSION: Overall, this suggests that government and charity funded research in the UK crowds in additional private sector R&D in the UK. The implied historical returns from UK government and charity funded investment in medical research in the UK compare favourably with the rates of return achieved on investments in the rest of the UK economy and are greatly in excess of the 3.5% real annual rate of return required by the UK government to public investments generally.

Funding allocation to surgery in low and middle-income countries: a retrospective analysis of contributions from the USA.

OBJECTIVE: The funds available for global surgical delivery, capacity building and research are unknown and presumed to be low. Meanwhile, conditions amenable to surgery are estimated to account for nearly 30% of the global burden of disease. We describe funds given to these efforts from the USA, the world's largest donor nation. DESIGN: Retrospective database review. US Agency for International Development (USAID), National Institute of Health (NIH), Foundation Center and registered US charitable organisations were searched for financial data on any organisation giving exclusively to surgical care in low and middle income countries (LMICs). For USAID, NIH and Foundation Center all available data for all years were included. The five recent years of financial data per charitable organisation were included. All nominal dollars were adjusted for inflation by converting to 2014 US dollars. SETTING: USA. PARTICIPANTS: USAID, NIH, Foundation Center, Charitable Organisations. PRIMARY AND SECONDARY OUTCOME MEASURES: Cumulative funds appropriated to global surgery. RESULTS: 22 NIH funded projects (totalling $31.3 million) were identified, primarily related to injury and trauma. Six relevant USAID projects were identified-all obstetric fistula care totalling $438 million. A total of $105 million was given to universities and charitable organisations by US foundations for 12 different surgical specialties. 95 US charitable organisations representing 14 specialties totalled revenue of $2.67 billion and expenditure of $2.5 billion. CONCLUSIONS AND RELEVANCE: Current funding flows to surgical care in LMICs are poorly understood. US funding predominantly comes from private charitable organisations, is often narrowly focused and does not always reflect local needs or support capacity building. Improving surgical care, and embedding it within national health systems in LMICs, will likely require greater financial investment. Tracking funds targeting surgery helps to quantify and clarify current investments and funding gaps, ensures resources materialise from promises and promotes transparency within global health financing.

UK research spend in 2008 and 2012: comparing stroke, cancer, coronary heart disease and dementia.

OBJECTIVE: To assess UK governmental and charity research funding in 2012 for cancer, coronary heart disease (CHD), dementia and stroke, and to make comparisons with 2008 levels. DESIGN: Analysis of research expenditure. SETTING: United Kingdom. MAIN OUTCOME MEASURES: We identified UK governmental agencies and charities providing health research funding to determine the 2012 levels of funding for cancer, CHD, dementia and stroke. Levels of research funding were compared to burden of disease measures, including prevalence, disability adjusted life years and economic burden. RESULTS: The combined research funding into cancer, CHD, dementia and stroke by governmental and charity organisations in 2012 was £856 million, of which £544 million (64%) was devoted to cancer, £166 million (19%) to CHD, £90 million (11%) to dementia and £56 million (7%) to stroke. For every £10 of health and social care costs attributable to each disease, cancer received £1.08 in research funding, CHD £0.65, stroke £0.19 and dementia £0.08. A considerable shift in the distribution of government research funding was observed between 2008 and 2012. In 2008, 66% of governmental research funding into the four conditions under study was devoted to cancer, 21% to CHD, 9% to dementia and 4% to stroke. In 2012, the proportions devoted to dementia and stroke had increased to 21% and 12%, respectively, with cancer accounting for 45% of total research spend. CONCLUSIONS: Although there has been much progress by government to increase levels of research funding for dementia and stroke, these areas remain underfunded when compared with the burden of disease.

MPs slam Macmillan for spending £1m on an integrated care project.

A leading cancer charity has denied its decision to spend nearly £1 million on an NHS project instead of nurses is a misuse of donations, after coming under fire from MPs.