Genomics research: world survey of public funding.

BACKGROUND: Over the past two decades, genomics has evolved as a scientific research discipline. Genomics research was fueled initially by government and nonprofit funding sources, later augmented by private research and development (R&D) funding. Citizens and taxpayers of many countries have funded much of the research, and have expectations about access to the resulting information and knowledge. While access to knowledge gained from all publicly funded research is desired, access is especially important for fields that have broad social impact and stimulate public dialogue. Genomics is one such field, where public concerns are raised for reasons such as health care and insurance implications, as well as personal and ancestral identification. Thus, genomics has grown rapidly as a field, and attracts considerable interest. RESULTS: One way to study the growth of a field of research is to examine its funding. This study focuses on public funding of genomics research, identifying and collecting data from major government and nonprofit organizations around the world, and updating previous estimates of world genomics research funding, including information about geographical origins. We initially identified 89 publicly funded organizations; we requested information about each organization's funding of genomics research. Of these organizations, 48 responded and 34 reported genomics research expenditures (of those that responded but did not supply information, some did not fund such research, others could not quantify it). The figures reported here include all the largest funders and we estimate that we have accounted for most of the genomics research funding from government and nonprofit sources. CONCLUSION: Aggregate spending on genomics research from 34 funding sources averaged around $2.9 billion in 2003-2006. The United States spent more than any other country on genomics research, corresponding to 35% of the overall worldwide public funding (compared to 49% US share of public health research funding for all purposes). When adjusted to genomics funding intensity, however, the United States dropped below Ireland, the United Kingdom, and Canada, as measured both by genomics research expenditure per capita and per Gross Domestic Product.

Equitable and Inclusive Education for All? Public Funding for Denominational Schools in Ontario

Roman Catholic separate schools’ denominational right to receive public funding is a contentious issue in Ontario’s educational system. Ontario’s publicly funded denominational schools historically served a purpose at Confederation; however, in light of Ontario’s evolving demographics, publicly funding denominational schools today may no longer serve the needs of Ontario. The research problem in this study is expressed through growing problems reconciling Roman Catholic schools with diversity and current public views. Additionally, recent tensions, public views, and political consensus suggest it is time to revisit the existing policy. In order to understand both the history of denominational schools and the present context, this study conducted II policy analyses as its research design by completing 2 policy cycles. The first policy cycle determined that based upon Upper and Lower Canada’s pre-Confederation diversity, extending public funding to denominational schools at Confederation was an effective way of protecting minority rights; however, the analysis in the second policy cycle; which examined how equitable and inclusive denominational schools are today, concluded that the denominational school system no longer serves the diversity and equity needs of contemporary Ontario. Building on these findings, this study then explored two viable alternative educational arrangements for Ontario’s future educational system: publicly funding all faith-based schools, or publicly financing a one-school-system. To address the diversity issue in Ontario, transitioning toward publicly funding a one-school-system is found to be the most viable option.

Should Texas use public funding for bariatric surgery?

Background. Obesity in America has increased exponentially since the 1970s with no sign of slowing down. It is a major public health problem, and is currently the second leading cause of preventable deaths in America (Flegal et al., 2010). Bariatric surgery is currently the only approved therapy that has shown to have a lasting impact on obese patients. While the initial cost of the surgery remains high, numerous cost-benefit analyses have demonstrated an overall cost saving within two to five years (McEwen et al., 2010). Only three states, including Texas, do not currently fund bariatric surgery through Medicare and Medicaid. ^ Objectives. To determine whether the current data on the cost-benefit analysis of bariatric surgery supports Texas' decision to not publicly fund bariatric surgery through its Medicare and Medicaid programs. ^ Methods. We conducted literature reviews to determine the current cost of obesity in Texas as well as the methods being employed to treat obesity currently. We then analyzed the history of bariatric surgery and its current implementation, looking at safety and the future benefits of bariatric surgery. We then looked at key cost-benefit analyses and meta-analyses to determine the cost effectiveness of bariatric surgery. We then analyzed both direct medical expenditures and indirect benefits of bariatric surgery. ^ Conclusions. If the obesity epidemic continues unabated, it will become one of the leading health expenditures in Texas within decades. Given that surgery is currently the only approved therapy for obesity that has been shown to be effective in the majority of patients, Texas' decision not to publicly fund bariatric surgery is short sighted.^

Arts funding : public funding profiles of the NEA, states and cities : fact sheet for Congressional committees /

"B-246348"--P. [1].

An invitation to an alcohol industry lobby to help decide public funding of alcohol research and professional training: a decision that should be reversed

No Abstract

Application of a policy framework for the public funding of drugs for rare diseases

BACKGROUND: In many countries, decisions about the public funding of drugs are preferentially based on the results of randomized trials. For truly rare diseases, such trials are not typically available, and approaches by public payers are highly variable. In view of this, a policy framework intended to fairly evaluate these drugs was developed by the Drugs for Rare Diseases Working Group (DRDWG) at the request of the Ontario Public Drug Programs. OBJECTIVE: To report the initial experience of applying a novel evaluation framework to funding applications for drugs for rare diseases. METHODS: Retrospective observational cohort study. MEASURES: Clinical effectiveness, costs, funding recommendations, funding approval. KEY RESULTS: Between March 2008 and February 2013, eight drugs were evaluated using the DRDWG framework. The estimated average annual drug cost per patient ranged from 28,000 to 1,200,000 Canadian dollars (CAD). For five drugs, full evaluations were completed, specific funding recommendations were made by the DRDWG, and funding was approved after risk-sharing agreements with the manufacturers were negotiated. For two drugs, the disease indications were determined to be ineligible for consideration. For one drug, there was insufficient natural history data for the disease to provide a basis for recommendation. For the five drugs fully evaluated, 32 patients met the predefined eligibility criteria for funding, and five were denied based on predefined exclusion criteria. CONCLUSIONS: The framework improved transparency and consistency for evaluation and public funding of drugs for rare diseases in Ontario. The evaluation process will continue to be iteratively refined as feedback on actual versus expected clinical and economic outcomes is incorporated. © 2014 Society of General Internal Medicine.

“Productivity and Employment in Firm’s Acess to Public Funding to Support Innovation”

Innovation is at the heart of the Europe 2020 Strategy, in order to promote higher levels of employment and productivity. Special attention is given to increasing the effectiveness of innovation policy instruments, mainly as some authors found evidence that productivity could be negatively affected by subsidies. The aim of the study is to assess how the expected impact on firm productivity and employment is taken into account, when firms apply for public funding for innovation. The analysis is based on the case study of the Portuguese Innovation Incentive System in the Alentejo region. In order to understand which factors influence the public decision to financially support private investment, we estimated a logit model based on firms’ and applications’ characteristics, controlling for the macroeconomic environment. The results indicate that government preferences for promoting exports, exploiting firms R&D results and stimulating the level of qualified employment are shown to be more relevant than the impact on firm productivity. Furthermore, the cost to the government of new jobs created, measured at least by exemption of interest and financial charges on the loan, is almost twice as much for non-SMEs as for SMEs.

Enabling access to research data in developing countries : designing a policy and practice framework for Malaysia’s Public Research Universities

Members of the World Trade Organisation (WTO) are obliged to implement the Agreement on Trade-related Intellectual Property Rights 1994 (TRIPS) which establishes minimum standards for the protection and enforcement of intellectual property rights. Almost two decades after TRIPS was adopted at the conclusion of the Uruguay Round of trade negotiations, it is widely accepted that intellectual property systems in developing and least-developed countries must be consistent with, and serve, their development needs and objectives. In adopting the Development Agenda in 2007, the World Intellectual Property Organisation (WIPO) emphasised the importance to developing and least-developed countries of being able to obtain access to knowledge and technology and to participate in collaborations and exchanges with research and scientific institutions in other countries. Access to knowledge, information and technology is crucial if creativity and innovation is to be fostered in developing and least-developed countries. It is particularly important that developing and least-developed countries give effect to their TRIPS obligations by implementing intellectual property systems and adopting intellectual property management practices that enable them to benefit from knowledge flows and support their engagement in international research and science collaborations. However, developing and least-developed countries did not participate in the deliberations leading to the adoption in 2004 by Organisation for Economic Co-operation and Development (OECD) member countries of the Ministerial Declaration on Access to Research Data from Public Funding, nor have they formulated policies on access to publicly funded research outputs such as those developed by the National Institutes of Health in the United States, the United Kingdom Research Councils or the Australian National Health and Medical Research Council. These issues are considered from the viewpoint of Malaysia, a developing country whose economy has grown strongly in recent years. Lacking an established policy covering access to the outputs of publicly funded research, data sharing and licensing practices continue to be fragmented. Obtaining access to research data requires arrangements to be negotiated with individual data owners and custodians. Given the potential for restrictions on access to impact negatively on scientific progress and development in Malaysia, measures are required to ensure that access to knowledge and research results is facilitated. This paper proposes a policy framework for Malaysia‘s public research universities that recognises intellectual property rights while enabling the open access to research data that is essential for innovation and development. It also considers how intellectual property rights in research data can be managed in order to give effect to the policy‘s open access objectives.

Turing and the Trans-Pacific Partnership: Intellectual Property, Public Health, and Access to Essential Medicines

A recent controversy in the United States over drug pricing by Turing Pharmaceuticals AG has raised larger issues in respect of intellectual property, access to medicines, and the Trans-Pacific Partnership (TPP). In August 2015, Turing Pharmaceuticals AG – a private biopharmaceutical company with offices in New York, the United States, and Zug, Switzerland - acquired the exclusive marketing rights to Daraprim in the United States from Impax Laboratories Incorporated. Martin Shkreli, Turing’s Founder and Chief Executive Officer, maintained: “The acquisition of Daraprim and our toxoplasmosis research program are significant steps along Turing’s path of bringing novel medications to patients with serious disorders, some of whom often go undiagnosed and untreated.” He emphasised: “We intend to invest in the development of new drug candidates that we hope will yield an even better clinical profile, and also plan to launch an educational effort to help raise awareness and improve diagnosis for patients with toxoplasmosis.” In September 2015, there was much public controversy over the decision of Martin Shkreli to raise the price of a 62 year old drug, Daraprim, from $US13.50 to $US750 a pill. The drug is particularly useful in respect to the treatment and prevention of malaria, and in the treatment of infections in individuals with HIV/AIDS. Daraprim is listed on the World Health Organization’s (WHO) List of Essential Medicines. In the face of much criticism, Martin Shkreli has said that he will reduce the price of Daraprim. He observed: “We've agreed to lower the price on Daraprim to a point that is more affordable and is able to allow the company to make a profit, but a very small profit.” He maintained: “We think these changes will be welcomed.” However, he has been vague and ambiguous about the nature of the commitment. Notably, the lobby group, Pharmaceutical Research and Manufacturers of America (PhARMA), disassociated itself from the claims of Turing Pharmaceuticals. The group said: “PhRMA members have a long history of drug discovery and innovation that has led to increased longevity and improved lives for millions of patients.” The group noted: “Turing Pharmaceutical is not a member of PhRMA and we do not embrace either their recent actions or the conduct of their CEO.” The biotechnology peak body Biotechnology Industry Organization also sought to distance itself from Turing Pharmaceuticals. A hot topic: United States political debate about access to affordable medicines This controversy over Daraprim is unusual – given the age of drug concerned. Daraprim is not subject to patent protection. Nonetheless, there remains a monopoly in respect of the marketplace. Drug pricing is not an isolated problem. There have been many concerns about drug pricing – particularly in respect of essential medicines for HIV/AIDS, tuberculosis, and malaria. This recent controversy is part of a larger debate about access to affordable medicines. The dispute raises larger issues about healthcare, consumer rights, competition policy, and trade. The Daraprim controversy has provided impetus for law reform in the US. US Presidential Candidate Hillary Clinton commented: “Price gouging like this in this specialty drug market is outrageous.” In response to her comments, the Nasdaq Biotechnology Index fell sharply. Hillary Clinton has announced a prescription drug reform plan to protect consumers and promote innovation – while putting an end to profiteering. On her campaign site, she has emphasised that “affordable healthcare is a basic human right.” Her rival progressive candidate, Bernie Sanders, was also concerned about the price hike. He wrote a letter to Martin Shkreli, complaining about the price increase for the drug Daraprim. Sanders said: “The enormous, overnight price increase for Daraprim is just the latest in a long list of skyrocketing price increases for certain critical medications.” He has pushed for reforms to intellectual property to make medicines affordable. The TPP and intellectual property The Daraprim controversy and political debate raises further issues about the design of the TPP. The dispute highlights the dangers of extending the rights of pharmaceutical drug companies under intellectual property, investor-state dispute settlement, and drug administration. Recently, the civil society group Knowledge Ecology International published a leaked draft of the Intellectual Property Chapter of the TPP. Knowledge Ecology International Director, James Love, was concerned the text revealed that the US “continues to be the most aggressive supporter of expanded intellectual property rights for drug companies.” He was concerned that “the proposals contained in the TPP will harm consumers and in some cases block innovation.” James Love feared: “In countless ways, the Obama Administration has sought to expand and extend drug monopolies and raise drug prices.” He maintained: “The astonishing collection of proposals pandering to big drug companies make more difficult the task of ensuring access to drugs for the treatment of cancer and other diseases and conditions.” Love called for a different approach to intellectual property and trade: “Rather than focusing on more intellectual property rights for drug companies, and a death-inducing spiral of higher prices and access barriers, the trade agreement could seek new norms to expand the funding of medical research and development (R&D) as a public good, an area where the US has an admirable track record, such as the public funding of research at the National Institutes of Health (NIH) and other federal agencies.” In addition, there has been much concern about the Investment Chapter of the TPP. The investor-state dispute settlement regime would enable foreign investors to challenge government policy making, which affected their investments. In the context of healthcare, there is a worry that pharmaceutical drug companies will deploy their investor rights to challenge public health measures – such as, for instance, initiatives to curb drug pricing and profiteering. Such concerns are not merely theoretical. Eli Lilly has brought an investor action against the Canadian Government over the rejection of its drug patents under the investor-state dispute settlement regime of the North American Free Trade Agreement (NAFTA). The Health Annex to the TPP also raises worries that pharmaceutical drug companies will able to object to regulatory procedures in respect of healthcare. It is disappointing that the TPP – in the leaks that we have seen – has only limited recognition of the importance of access to essential medicines. There is a need to ensure that there are proper safeguards to provide access to essential medicines – particularly in respect of HIV/AIDs, malaria, and tuberculosis. Moreover, there must be protection against drug profiteering and price gouging in any trade agreement. There should be strong measures against the abuse of intellectual property rights. The dispute over Turing Pharmaceuticals AG and Daraprim is an important cautionary warning in respect of some of the dangers present in the secret negotiations in respect of the TPP. There is a need to preserve consumer rights, competition policy, and public health in trade negotiations over an agreement covering the Pacific Rim.

Bacteremic pneumonia before and after withdrawal of 13-valent pneumococcal conjugate vaccine from a public vaccination program in Spain: a case-control study

The objective of this study is to compare the incidence and epidemiology of bacteremic community-acquired pneumonia (CAP) in the setting of changes in 13-valent pneumococcal conjugate vaccine (PCV13) coverage. In the region of Madrid, universal immunization with the PCV13 started in May 2010. In July 2012, public funding ceased. Vaccination coverage decreased from >95% to 82% in 2013 and to 67% in 2014. We performed a multicenter surveillance and case-control study from 2009-2014. Cases were hospitalized children with bacteremic CAP. Controls were children selected 1:1 from next-admitted with negative blood cultures and typical, presumed bacterial CAP. Annual incidence of bacteremic CAP declined from 7.9/100 000 children (95% CI 5.1-11.1) in 2009 to 2.1/100 000 children (95% CI 1.1-4.1) in 2012. In 2014, 2 years after PCV13 was withdrawn from the universal vaccination program, the incidence of bacteremic CAP increased to 5.4/100 000 children (95% CI 3.5-8.4). We enrolled 113 cases and 113 controls. Streptococcus pneumoniae caused most of bloodstream infections (78%). Empyema was associated with bacteremia (P = .003, OR 3.6; 95% CI 1.4-8.9). Simple parapneumonic effusion was not associated with bacteremia. Incomplete PCV immunization was not a risk factor for bacteremic pneumonia.

On the governance of public education

Private schools in Australia receive significant public funding, but their determination to concentrate social and cultural capital and consolidate positional advantage ‘denies the possibility of their serving the public interest’. A 1998 study of Victorian private schools has confirmed that they produce above-average academic results and are also concentrated in high socioeconomic geographic areas. The few private schools outside this pattern serve mainly provincial areas or ethnic minority groups. High academic credentials depend at least in part on their scarcity, and ‘the selective function of schools, directed towards establishing a hierarchy of performance, overwhelms the pedagogical function of universal learning and social justice,’ especially at transition points in the education system. The governance procedures of schools typically encourage high academic standards ‘through mechanisms of exclusion’. Private schools in particular, at the secondary level, tend to ‘export failure’ through ‘predatory recruitment and selective dumping practices’, and by arrangements with universities for early placement of high performers into preferred tertiary courses. The broader education system reinforces the competitive processes within schools though competitive examinations. A range of steps can address these equity problems. Curriculum should be made more sensitive to disadvantaged social groups. Secondary schools should be aligned more closely to the social, cultural and economic development of their communities through mechanisms such as VET in schools, linkages with TAFE colleges, and a broadened curriculum that addresses community problems.

Australia's strengths and weaknesses in technology transfer and R&D exploitation : GEM survey "experts" views compared with public policy and other published data

There has been increasing public debate in Australia in recent years about research culture in universities and other publicly funded research agencies such as CSIRO and its impact on Australia's performance in generating economic, social and environmental benefits to the Australian community from the large amount of public funding for R&D. This is the supply side issue. On the demand side there is equally concern about the technology absorptive capacity of Australian. business as illustrated by the low proportion of gross business research expenditure (GERD) spent by business (BERD). Against this background, this paper has explored the views of abut 100 "experts" interviewed in the Australian Global Entrepreneurship Monitor (GEM) studies in the years 2000, 2001, 2002 and 2003 on the issues, strengths and weaknesses of Australia's technology transfer performance as it applies to new technology small firms. The paper has also explored evidence for any longitudinal change over this period.