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Science Policy Around the Web – April 12, 2019

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By: Saurav Seshadri, PhD

Photo by Elijah Hiett on Unsplash

With Vertex, NHS back at the pricing table, CF advocates ratchet up the pressure

petition demanding coverage of the cystic fibrosis (CF) drug Orkambi in the UK has now garnered over 100,000 signatures, and must therefore be considered by Parliament for debate.  The milestone is the latest development in the struggle between Orkambi maker Vertex Pharmaceuticals and the British government, which began soon after Orkambi was approved in 2015.  The main point of contention is the price of the drug.  The UK’s National Institute for Health and Care Excellence (NICE) has refused to recommend Orkambi at Vertex’s asking price of £104,000 ($136,000) per patient per year, but Vertex has rejected the UK’s offer of £500 million for 5 years’ access, leaving both parties at an impasse.

The UK is not the first country to clash with Vertex over pricing. Several health agencies have refused to pay for Orkambi on the grounds that it is only marginally effective; some now face lawsuits, as programs like Medicaid are required to provide available drugs for qualifying patients.  While Orkambi is not as effective as Vertex’s first drug Kalydeco, it can be prescribed to more patients (up to 50% of those with CF).  Life expectancy for patients with CF is less than 40 years, and many patients are children, so even small improvements can be life-changing.  However, as with the multiple sclerosis drug Ocrevus, NICE seems unlikely to relent; on the contrary, UK Health Minister Matt Hancock recently accused Vertex of ‘hold[ing] the NHS to ransom’ and ‘profiteering’.  

For its part, Vertex is unlikely to compromise on the price of its best-selling drug, which brought in $1.26 billion in 2018.  CEO Jeffrey Leiden insists that this revenue is critical to the company’s continued investment in CF research.  Ironically, this stance may be pushing the UK closer to a measure that would jeopardize all future medical R&D efforts: invoking ‘Crown’ use, which allows the government to sell a patent without the consent of its owner. While the idea has gained support among some British lawmakers, and has been used in the past (to make Pfizer-owned antibiotic tetracycline available in the 1960s), it would face legal challenges that could render it ineffective.  But with public pressure mounting, especially after Vertex recently admitted to destroying almost 8,000 packs of Orkambi amid the standoff, inaction may not be an option for much longer.

(Eric Sagonowsky, FiercePharma)


Why some low-income neighborhoods are better than others

A recent study, published in PNAS, builds upon a body of evidence that while race can influence upward mobility (with white children having a 4-fold higher chance of moving from the lowest to highest income brackets than their black peers), environmental factors also play a major role.  Previous work demonstrated that the neighborhood in which a child grows up has a large effect on their future success, with better outcomes for children raised in low-poverty neighborhoods, regardless of race.  However, black children are significantly less likely to live in such neighborhoods.  To combat racial inequality, it is critical to understand which aspects of poverty impact long-term socioeconomic progress. 

The new study is based on the Opportunity Atlas, and pulls together data from tax returns, Census surveys, police reports, prison admission records, and blood tests conducted by the health department. The data tracks a cohort of children born in 1978-1983 (age 31-37 in 2014), living in 754 Census tracts in Chicago.  The authors report that even after controlling for other variables, a large proportion of the racial disparity observed in adults can be explained by three factors: violence, incarceration, and lead exposure during adolescence.  Since these factors were highly correlated with each other, the authors combined them into a single ‘neighborhood harshness/toxicity’ factor; this variable proved to be a much stronger predictor of income, incarceration, and teen pregnancy than more traditional factors, such as poverty or college education rates.   

That these elements impair social mobility is perhaps not surprising, as exposure to both violence in the community and high levels of lead have both been linked to cognitive impairment. But the magnitude of the effect is striking: for example, according to their model, toxicity exposure could account for 60% of the difference in incarceration rates between black and white men in their sample, and a 10% increase in teen births among black women.  While the authors acknowledge they cannot establish causality, they conclude that ‘Chicago’s residential segregation is disproportionately exposing its black children to neighborhoods that are hazardous to their development’.  Recently elected mayor Lori Lightfoot ran on a platform that includes stopping violence, expanding affordable housing, and ‘investing in our neighborhoods’.  Insight into the mechanisms that perpetuate inequality can only enhance these policies’ power to improve the trajectories of vulnerable kids.      

(Sujata Gupta, Science News


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April 12, 2019 at 5:21 pm

Science Policy Around the Web – April 5, 2019

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By: Janani Prabhakar Ph.D.

Image by Cally Lawson from Pixabay 

Have you herd? It turns out cows have feelings, too.

The idea that nonhuman animals have feelings seems not only far-fetched, but a tad bit Disneyesque. We are used to anthropomorphizing nonhuman animals in movies and television, but the idea that a cow can feel emotions seems unbelievable. Part of this is because the concept of feeling rests on specific behavioral indices. Humans express feelings through facial expressions, through sound, and through language. We can infer others’ emotions by watching people’s actions and what they tell us. How can we possibly gain these kinds of insights from animals? How can we infer a nonhuman animal’s mental states?

With the rise of behaviorism came a focus on concepts of thoughts, feelings, and consciousness. The notion that these concepts are difficult to probe using standard empirical methods in nonhuman animals, behavioral scientists thought less of animals for several decades. Industrialization caused a further rift between humans and nonhuman animals such that the plight and treatment of nonhuman animals did not factor into the everyday ethos of behavioral science. This has since changed. 

Professor Frans de Waal, a primatologist from Emory University, has argued that nonhuman animals do indeed show emotions and in fact, they show emotions in similar ways to humans. The challenge is to determine what emotion they are conveying, when, and why. As Alexandra Horowitz, a canine cognition psychologist, points out, we cannot measure nonhuman animal emotion using the same methods we use to study human emotions. It would be too presumptuous to assume direct overlaps. Instead, she emphasizes that scientists must let the animal show us what the emotion is. This paradigm shift toward understanding how animals show emotion (and not if they do at all) has already had policy impact. Many countries have increased restrictions on using animals for research, with some outright banning use of primates in behavioral science. Restrictions on factory farms may be coming not too long from now.

Beyond policy, independent farms and rescues have heard cry of these notions. VINE Sanctuary, a farm animal rescue mission in Vermont, has taken on this perspective in creating an open, free space for farm animals of different species to roam and mingle. This represents a “radically different way of life for domesticated animals.” According to Pattrice Jones, the goal of this mission is to liberate, in a sense, animals who have been tortured or held in captivity, allowing them to live in a safe space where their emotional well-being and their individual rights can be maintained. That is something we can all get on board with.

(Eoin O’Carroll, Christian Science Monitor


Copenhagen Wants to Show How Cities Can Fight Climate Change

By 2025, Copenhagen hopes to transition from an industrial town to a net carbon neutral city. To achieve this, it will have to generate more renewable energy than dirty energy that it consumes. If Copenhagen achieves this, it will be a big achievement and will set a great example for cities worldwide. If cities can change toward using less dirty energy, then our negative impact on greenhouse gas emissions will substantially drop. Copenhagen is a great test case for the extreme measures that this will require: it is a city with a small population that is rich and who care about climate change. 

Copenhagen has already made great strides toward this goal. It has cut its emissions by 42 percent since 2005. To go even further, it has to change the way people commute and their heating choices, and how the city deals with trash. To really make effective strides, the city needs the support of the national government. However, the national government, led by a center-right party, has been reluctant to impose restrictions on gas-fueled vehicles, which is the largest contributor to the country’s carbon footprint. Contrary to efforts to reduce greenhouse gas emissions, the national government has lowered car-registration taxes, allowing more individuals to own cars. So, as many in Copenhagen would like to see a reduction in their carbon footprint, this footprint is increased with greater personal mobility through car ownership. This is a problem that is faced by many nations trying to reduce their emissions. 

Despite these hurdles, Copenhagen has implemented several key initiatives to help toward their goals. They have several bike lanes on busy city routes. Some of these lanes are three lanes wide, owing to how widely they are used. A new metro line connects more residents, allowing them to take the metro over driving their own cars. Garbage is beginning to be burned in a high-tech incinerator that contributes to heating sources for buildings. Furthermore, natural winds that are common in Copenhagen has made wind energy a viable renewable source. 

However, progress sometimes has a negative side to it as well. For example, the city’s power plants have begun to use wood pellets rather than coal. However, burning wood causes emissions, especially if the trees that were cut cannot be replaced by new trees. The new garbage facility comes with a year-round ski slope as well as a slew of trucks that must bring garbage to its furnaces daily. This also has a carbon footprint, but it may be outweighed by what it can give back in terms of heat to the city. The other part to all this is motivating behavioral change. So far, the city’s residents have utilized the bike paths to a large extent and this is good for the city’s goals. Generalizing this to other cities requires similar paradigm shifts in individual’s behaviors and the city residents to all be equally cognizant of how their choices impact climate change. When people are concerned, as are the residents of Copenhagen, it can help swing policy. Copenhagen, as such, is a perfect test case for this paradigm shift.

(Somini Sengupta, New York Times


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April 5, 2019 at 5:45 pm

Science Policy Around the Web – October 31, 2013

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By: Chris O’Donnell

Our weekly linkpost, bringing you interesting and informative links on science policy issues buzzing about the internet.

Battle Over Reauthorization of the America COMPETES Act – The America COMPETES Act, which was first approved in 2007, increased federal support for research and science education. The legislation is once again up for reauthorization this fall, but it appears this once bipartisan bill will now be the ground for a battle in the House of Representatives. Already, there are disagreements over the agencies to be included and how those agencies should function. A discussion draft was recently released by Democrats on the House science committee, but the committee’s Republican chairman, Representative Lamar Smith (TX), has yet to release his draft bill. Representative Eddie Bernice Johnson (D-TX) discusses her draft bill and trying to find common ground with House Republicans. (Jeffrey Mervis)

Organizations Urge Lawmakers to Allow NSF to Advance Research in Social and Behavioral Sciences – Recently, over 70 organizations wrote a letter to House Science, Space, and Technology Committee Chairman Lamar Smith (R-TX) asking for lawmakers to continue to allow the National Science Foundation (NSF) to evaluate and fund research propels in a wide range of disciplines, including social science and behavioral sciences. This is in response to a recent editorial where Smith and Rep. Eric Cantor (R-Va.) suggested that certain grants in the social, behavioral, and economic sciences were not worthy of federal funding. There is concern that politics may interfere with the ability of the NSF to fund projects from all disciplines and negatively impact the scientific process as a whole. (Kathy Wren)

Wide Disparities Among U.S. States in Science and Math A recent study by the National Center for Education Statistics suggests eighth-graders attending public schools in the U.S. are above average in science compared to their foreign counterparts in 47 of the 50 states. U.S. students did not fare as well in math, but students were still above the international average in 36 states. However, wide disparities were observed between states. For example, average state scores in science ranged from 453 in the District of Columbia to 567 in Massachusetts. And from states with an average science score of at least 500, the percentage of students with high or advanced scores ranged from 31% in Hawaii to 61% in Massachusetts. There is a desire for policymakers to find out why some states, like Massachusetts, are performing so well.  (Adrienne Lu)

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Written by sciencepolicyforall

October 31, 2013 at 4:51 pm