sleep on the floor, dream about me @royaltyfreesalmonimages - Tumblr Blog

fish among fish,,,

900 Year Old Mirror Mosque in Iran from “Baraka” directed by Ron Fricke

i think we should be talking about the semi-recent advancements in cystic fibrosis treatment like all the time every day. there hasn’t been a drug like this since AZT medications for HIV infection it is truly fucking miraculous and very important

rimonoroni2

basically: cystic fibrosis is a genetic disease which makes the mucous a person generates extra sticky. it used to kill people in infancy, then with advancements in medical tech it killed people in young childhood, and until very recently cystic fibrosis patients could expect to live until about thirty years old with consistent painful lung infections and complications.

in 2019 the FDA approved a drug called trikafta (which is really three drugs in one) for cystic fibrosis treatment. what it essentially does is patch up the malfunctioning proteins that cause the extra sticky mucus. trikafta is effective on about 90% of cystic fibrosis patients.

people who had spent their entire lives in and out of hospitals, on and off of ventilators, suffering from pneumonia and sometimes treated through painful procedures like intubation took this drug, got out of bed, coughed up an entire lifetimes worth of mucus out of their lungs over the course of a few hours, breathed clearly for perhaps the first time in their lives, and now go on to live well into their seventies.

like isn’t that insane. isn’t that amazing. doesn’t that give you hope for the future of medical advancements and treatment. fuck. i think about it all the time……

kittydesade

There’s a WHAT.

For WHAT.

sweetdreamspootypie

It's been amazing!

My ward is the respiratory ward - CF is one of the things we specialize in.

Since this med came out we haven't had a SINGLE CF admission to the ward

There used to always be a CF patient spending a couple of months with us at a time

There's a man who is 23 years old who I was sure would not survive his next admission (aim saturations 85% is end stage lung disease)

There's a set of the local frequent flyers that we all know so well

Except

No we don't

On the CF specialist ward (with reasonable staff turnover)

Half the staff have probably never even seen a CF patient

They are going to live

anartificialsatellite

For the people asking "well how do we know people are living that long if it's so new????" Here's a page from the CF foundation about life expectancy.

Additionally, it should be noted that metrics like life expectancy are in no way a guarantee of... Anything. There are significant outlier CF patients who are at an advanced age now despite the odds due to a variety of different factors, having lived the majority of their lives before the development of modulators.

But the fact remains that the odds are better now than they have ever ever been before, by leaps and bounds. It isn't cured, and many patients still need significant treatment in addition to Trikafta, but it is so much better than anyone could have dreamed of twenty years ago, and that is a triumph.

kittyoverlord

Yes! My sister has a serious form of cf and finally is living a more comfortable and active life. She was also part of many of the clinical trials leading to these breakthroughs due to the nature of her cf. It's been very exciting to see.

naamahdarling

That's absolutely incredible. Don't get me wrong. It's miraculous from a clinical standpoint. But, uhh. Not to be a downer but I need people to see this so they stay angry and stay real about what medical breakthroughs actually mean for patients. When I call something "survival gatekeeping", this is what I mean:

That is per month with the most common coupon people are likely to use.

But don't worry, there's grants and patient assistance programs you can apply for. 🤞🫠 Most people in high income countries like the USA can get it "covered" through insurance for fewer thousands of dollars. Or even less if your insurance is good or the manufacturer likes how poor and/or on Medicaid you are! A good social worker will help you with the process, and make sure your yearly reapplications and PAs are done a little early so they have time to think about it before you run out. Jesus Christ.

NEVER look at something like this and navigate away feeling better about things without asking how much it costs and who can get it. NEVER. It isn't revolutionary until poor people can access it without a struggle.

barcelonas

pure poetry

cherrylugosi

charl0ttan

can you imagine having a small dick and going to buy your Gay Water and the box tells you youre racist

darkcomedies

evoking bertholt brecht’s “the way people cast a play!” quote as a spell against prescriptive, stereotypical, fatalistic typecasting

darkcomedies

idk what to tell you except go look at the fishwives

nyantara

things that would exist if intellectual property wasn't a thing

so much cheap generic medication. reverse engineering compounds would be even more financially profitable.

fewer people dead of vaccine preventable illnesses in the global south bc the greatest barrier to distributing some vaccines like hpv is their ip

plant seeds and grafts that come from the plants instead of licensing them. don't invest so much in preventing cross contamination. more localised experimental breeding.

library of the world: every book and journal article in the world could be digitised and be searchable for every person in the world to read regardless of where they live. cheap reprint runs and local translations everywhere.

an online interface where every citation could actually lead to the text in question

freedom from the hell that is DRM software

everytime someone reverse engineered your shitty proprietary software we would all be freed from it instead of them getting DMCA'd

so much hardware would be opened up & therefore made so much cooler.

so many more songs that riff off and sample and interpolate shit from this decade instead of like 70 years ago and more analysis of music that didn't keep getting nuked off the internet

preserving movies and tv shows and games as long as someone, somewhere has the desire to host them

just go publish your fanfic/art/vid as is instead of all us pretending it isn't fanwork or begging the corporation for mercy / licensing

a world without ip lawyers. im getting chills just imagining it.

nocakeno

#there cant simply be no more IP we need acrive anti-IP enforcement #or else companies will still enforce various paywalls and implement DRM a bit differently on their own #same w medical formulas and tech we need active anti-patent anti-privatization enforcement or theyll find a way to withhold it for profit #IP laws are one of the tools of capitalism and colonialism #when increasing capital is the way the entire system works and benefits them #they will always find a way even if you get rid of IP #this isnt to say its useless this IS to say be more anti-IP now and then keep aiming higher

tags via foxpunk

nyantara

this is true, but right now to break DRM is super mega illegal and setting up shadow libraries sends you to jail, for life. people who hack video games get sent to jail. reverse engineering is illegal as fuck.

if we enforced anti privatisation that would look like forced licensing by nation states, like you discovered a drug? now make the formula and its manufacture public. its much more complicated. simply abolishing the threat of IP litigation protects the people who make the ongoing IP regime bearable and encourage more people to be involved in efforts to liberate intellectual property secrets.

expressions-of-nature

by Ville Kotimaki

holespoles

Kansetsu Hashimoto : "Pure Midday" (1941)

橋本関雪「清昼」(昭和16)

leahberman

rise; zion national park, utah

instagram - twitter - website

worldsandemanations

Gizem Akdag

sailatina3

snandtnurtle

[ID: A Brazilian soccer player sits on the sidelines with crossed arms looking upset. On the chair next to him is a plushie of Hatsune Miku, also in a Brazilian jersey, looking joyful. /End ID]