’Orphan drugs’ are ascendant. What will that mean for people with rare diseases?
▻https://massivesci.com/articles/drug-development-orphan-healthcare-costs
Niche drugs may be good for companies, but that doesn’t mean they’ll reach sufferers
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Goldman Sachs report : « Is curing patients a sustainable business model ? » / Boing Boing
▻https://boingboing.net/2018/04/14/shared-microbial-destiny.html
Soigner les pauvres est seulement rentable s’ils demeurent malades.In Goldman Sachs’s April 10 report, “The Genome Revolution,” its analysts ponder the rise of biotech companies who believe they will develop “one-shot” cures for chronic illnesses; in a moment of rare public frankness, the report’s authors ask, “Is curing patients a sustainable business model?”
The authors were apparently spooked by the tale of Gilead Sciences, who developed a Hepatitis C therapy that is more than 90% effective, making $12.5B in 2015 — the year of the therapy’s release — a number that fell to $4B this year.
The analysts are making a commonsense observation: capitalism is incompatible with human flourishing. Markets will not, on their own, fund profoundly effective cures for diseases that destroy our lives and families. This is a very strong argument for heavily taxing the profits of pharma companies’ investors and other one percenters, and then turning the money over to publicly funded scientific research that eschews all patents, and which is made available for free under the terms of the Access To Medicines treaty, whereby any country that devotes a set fraction of its GDP to pharma research gets free access to the fruits of all the other national signatories.
Humans have shared microbial destiny. If there’s one thing that challenges the extreme libertarian conception of owing nothing to your neighbor save the equilibrium established by your mutual selfishness, it’s epidemiology. Your right to swing your fist ends where it connects with my nose; your right to create or sustain reservoirs of pathogens that will likely kill some or all of your neighbors is likewise subject to their willingness to tolerate your recklessness.
Goldman Sachs’s analysts suggest three “cures” for the problem of one-shot cures; and taxing the rich to fund socialized pharma research isn’t among them; rather, they propose eschewing rare diseases, to ensure that the pool of patients is large enough to produce a return on their investment, or developing one-shot cures fast enough to “offset the declining revenue trajectory of prior assets.”
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PLOS Neglected Tropical Diseases: Diseases Neglected by the Media in Espírito Santo, Brazil in 2011–2012
▻http://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0004662Abstract
Background
The aims of the present study were to identify and analyse the Diseases Neglected by the Media (DNMs) via a comparison between the most important health issues to the population of Espírito Santo, Brazil, from the epidemiological perspective (health value) and their effective coverage by the print media, and to analyse the DNMs considering the perspective of key journalists involved in the dissemination of health topics in the state media.Methodology
Morbidity and mortality data were collected from official documents and from Health Information Systems. In parallel, the diseases reported in the two major newspapers of Espírito Santo in 2011–2012 were identified from 10,771 news articles. Concomitantly, eight interviews were conducted with reporters from the two newspapers to understand the journalists’ reasons for the coverage or neglect of certain health/disease topics.Principal Findings
Quantitatively, the DNMs identified diseases associated with poverty, including tuberculosis, leprosy, schistosomiasis, leishmaniasis, and trachoma. Apart from these, diseases with outbreaks in the period evaluated, including whooping cough and meningitis, some cancers, respiratory diseases, ischaemic heart disease, and stroke, were also seldom addressed by the media. In contrast, dengue fever, acquired immune deficiency syndrome (AIDS), diabetes, breast cancer, prostate cancer, tracheal cancer, and bronchial and lung cancers were broadly covered in the period analysed, corroborating the tradition of media disclosure of these diseases. Qualitatively, the DNMs included rare diseases, such as amyotrophic lateral sclerosis (ALS), leishmaniasis, Down syndrome, and verminoses. The reasons for the neglect of these topics by the media included the political and economic interests of the newspapers, their editorial line, and the organizational routine of the newsrooms.Conclusions
Media visibility acts as a strategy for legitimising priorities and contextualizing various realities. Therefore, we propose that the health problems identified should enter the public agenda and begin to be recognized as legitimate demands. -
Drugs companies unite to mine genetic data - FT.com
▻http://www.ft.com/intl/cms/s/0/4d1792fe-d2f1-11e4-b7a8-00144feab7de.html#axzz3VchnVvVjSeveral of the world’s biggest pharmaceuticals companies have formed a partnership with Genomics England in the first step towards using genetic data from NHS patients in medical research.
GlaxoSmithKline and AstraZeneca, the two biggest UK drugs groups, will team up with rivals, including Roche of Switzerland and AbbVie and Biogen of the US, to mine information from a government project to decode the genomes of 100,000 patients with cancer and rare diseases. -
How deforestation shares the blame for the Ebola epidemic - The Washington Post
▻http://www.washingtonpost.com/news/morning-mix/wp/2014/07/08/how-deforestation-and-human-activity-could-be-to-blame-for-the-ebolaThe commonality between numerous outbreaks of Ebola, scientists say, is growing human activity and deforestation in previously untouched forests, bringing humans into closer contact with rare disease strains viral enough to precipitate an epidemic.
“The increase in Ebola outbreaks since 1994 is frequently associated with drastic changes in forest ecosystems in tropical Africa,” wrote researchers in a 2012 study in the Onderstepoort Journal of Veterinary Research. “Extensive deforestation and human activities in the depth of the forests may have promoted direct or indirect contact between humans and a natural reservoir of the virus.”
Such a conclusion is particularly troublesome for West Africa, which has never before experienced an Ebola outbreak like this one, and is reported to have one of the world’s highest rates of regional deforestation.
#forêt #déforestation #ebola #santé
