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Joined 2 years ago
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Cake day: June 20th, 2023

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  • I wish the authors had called out the company by name in the summary - Novartis is one of many pharmaceutical conglomerates raising the price of life-saving therapies. This particular drug is a flagrant example of price gouging, and it will take a lot of effort to fix the problem of cost.

    However, a new system has to carefully skirt around a very real issue - how can we provide market incentive to cure rare diseases? We are going through a quiet Rennaisance where advances in gene therapy and immunotherapy have provided us with the tools to cure most neurodegenerative diseases. However, most are considered rare diseases and the development of these drugs is very expensive (billions of dollars). Under capitalism, companies have to grapple with the horrific fact that curing a disease that affects ~1 in 300,000 with an expensive drug is a “bad investment”.

    Currently, the FDA offers a program where a company that develops a rare disease medication earns a credit for expedited review on a future program. These credits can be sold and traded, and are worth their weight in gold. But, rare disease medicines in the US benefit from longer periods of exclusivity which lets companies maintain high prices for even longer. In the UK, the NHS can rule the price of a drug does not provide enough benefit to society, and elect not to cover the medication, providing incentive to lower prices. I’m less familiar with the EU regulations.



  • Neuromancer49toPrivacy@lemmy.mlI know Phones dont listen but....
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    10 days ago

    No no, they listen. How do you think the “Hey Google” feature works? It has to listen for the key phrase. Might as well just listen to everything else.

    I spent some time with a friend and his mother and spoke in Spanish for about two hours while YouTube was playing music. I had Spanish ads for 2 weeks after that.




  • The Code of Federal Regulations (CFR) includes the laws governing the Food and Drug Administration. These laws are written in the blood of the exploited and vulnerable, like the victims of the Tuskeege Syphillis Experiment. Many of these regulations are specifically written to keep pharmaceutical and food companies from cutting corners in product development, testing, and manufacturing.

    It’s not a necessary disruption. It’s going to kill a lot of vulnerable people.


  • The article describes the review process - you’re right, these words just flag a paper for further review. I wonder if it’s an automatic flagging system like you suggested.

    However, it took me almost a decade of rigorous training to understand my research. I sure as hell don’t trust an elected or appointed official with a political vendetta to critically read my grants. Leave politics out of peer review.

    This is still an emergency situation, IMHO. Like you said, people’s grants are being canceled. I see this as a direct attack against higher education.

    ETA: It’s also a waste of taxpayer money. These grants are already competing for meager funds. Why should we siphon away any resources to “investigate” them?



  • Here’s a quick off-the-cuff list of neuroscience domains, not part of Diversity, Equity, and Inclusion, that will be impacted by this censorship. This is not an exhaustive list, it’s just what I thought of after thinking critically for 10 minutes.

    It goes without saying this practice is evil and reprehensible. No academic domain should be politically targeted. But it reaches more than their targets. It is dangerous. It is unscientific. It is book-burning. Contact your representatives. Take action. Donate to good causes.

    Patient advocacy for people who have had a stroke, or have dementia, or have any number of disabilities, hereditary or acquired.

    Any research about the blood brain barrier, including development of drugs that can cross it more efficiently.

    Any research about the placental barrier, including development of safe medications for birthing people.

    Research into cognitive bias.

    Development of statistics (including Bayesian, the hot frontier), machine learning (that’s AI for anyone who prefers that term), where the term bias is used to talk about parameters and model performance.

    Basic visual and auditory science, where we talk about visual and auditory discrimination.

    Sex differences research- this isn’t just a social issue, we don’t understand how differences in metabolism impact drug metabolism. Can’t have female mice anymore, apparently.

    Basic research in the function of neurons, which polarize, depolarize, hyperpolarize, etc.

    Concussion research and, again, stroke research. The field is broadly known as traumatic brain injury.