Dreaming

@velvetdemon I'm doing a full reply because I want to give this question the time and space it deserves, and I really do appreciate your curiosity about this.

The short answer: It is deeply unethical. There are nowhere near enough willing patients in the world to be able to do this, and it would be criminal to put them through this.

The long answer: The one side of the equation you're focusing on is: how much of a drug is too much, to the point where it will cause negative side effects or even death? And this is crucial to know. But it's not just a matter of finding out the lethal dosage of a heart cholesterol medication, you need to know that it can actually lower the cholesterol of any living thing. There is no way to know this without giving it first to...a living thing.

But beyond this, I need to emphasize: The goal of a drug trial is to effectively cure people who are already suffering from disease, who are living on limited time.

Drug trials don't just happen on any member of the public, they need to happen specifically on people affected by the disease you're trying to treat. There is at any time a very limited and very marginalized population of the world affected by early onset, familial Parkinson's disease. Because you cannot ethically induce disease in a human being, you are working with, speaking with, and helping patients and their families who are hopeful and desperate for a cure.

If you were to jump straight to human trials from petri dishes, not knowing absolutely anything about how the drug functions in a living, breathing animal body, it would look like this:

We didn't know that minute quantities of the drug interact lethally with x, y, z medication that people are commonly also taking. X number of patients have died as a result.

We didn't know that the drug is fatal to people with [common variant] in their genetics. X more patients have died.

We didn't know the drug exacerbates x, y, z chronic illnesses. X number of people have acquired permanent, lifelong disabilities.

We didn't know the best way to deliver the drug, so we tried multiple ways: the people who received it intravenously are now suffering from a painful, costly, and debilitating condition that did not happen with the ingested form.

I could go on, and on, and on.

The vast majority of these problems can be nearly or almost entirely averted by testing other animals first.

These are all people who possibly could have waited for the normal progression from animal testing to human testing and thus received better outcomes. Some people will pass away in the time it takes to get to that point, and that's heartbreaking, and we all wish science could be faster.

animal research is not the mad scientist wild west that PETA wants you to think it is. there are extremely strict federal laws in place to protect the well being of these animals. animal welfare organizations like AAALAC ensure that lab animals are treated with dignity & respect and are given enough specialized care & enrichment to be happy and content in captivity, just like AZA accreditation with zoos.

not a single animal from a zebrafish to a mouse to a dog to a macaque goes unaccounted for. if an animal gets moved to a new cage, paired for breeding, has a procedure performed on it, gives birth, gets sick or injured, dies, etc. it is legally required that this information is recorded and kept on file for the US federal government to access. failing to record & retain this information is very much punishable by US federal law.

let me tell you - if you abuse or kill an animal, even a mouse - you are almost certainly getting both fired & blacklisted from the industry. if you abuse or kill a more ‘advanced’ animal, such as a dog or monkey, you will likely face criminal charges. killing a monkey is as serious and disastrous as a nuclear meltdown. you are expected to reasonably explain every illness, injury, or death of an animal under your care. you must record all of this information. animals that are clearly suffering with low QOL are required to be euthanized according to AVMA guidelines.

research animals are highly expensive. yes, even the "lesser" animals like mice. the cheapest mice will run you a few hundred $ per individual, with some of the most expensive mice i've cared for being $25,000 per individual. in research we have the "three Rs" - reduction (reduce amount of necessary animals to a minimum), refinement (refine processes to ensure research is accurate and animals feel no pain or distress), and replacement (replace animals with non-living research models as they become available). i can assure you no proper research team is wasting animals (*do not* say "b-b-but elon musk--" his research team is actively being investigated for animal abuse by the government).

research methods that do not require live animals are currently being looked into & efforts spearheaded by - you guessed it - the animal research industry itself (notice how the animal rights people are strangely silent & unhelpful when it comes to this?) but current technology is rudimentary and does not compare to live animal models.

some research animal fun facts (US edition):

all species of animals are only allowed to have one single major surgery performed on them in their entire lifetime.

institutions with nonhuman primates must have a behavior program in place (run by knowledgeable primate specialists) to ensure that they are happy and receiving enough daily enrichment and social interaction.

institutions with dogs are required to have physical exercise programs in place. this means every individual dog gets a substantial amount of leashed AND free-roaming exercise daily, including playgroups with other dogs.

a majority of nonhuman primates get to retire to sanctuaries like peaceable primate sanctuary, and almost all dogs get retired and adopted out by organizations like homes for animal heroes. some institutions will also adopt out unneeded young rabbits, guinea pigs, rats, etc.

some strains of mice glow neon green (or orange or blue) under UV light. this is not harmful to them and is commonly seen in cancer research.

So she picked one shirt and one pair of trousers, carefully, methodically ripped every third stitch out of every seam, and then hung them back up together so that he would be likely to pick them at the same time. This took her a couple hours, so by the time she was done, the anger had worn down. She came out, she and my father had a talk that ended in apologies, after which they were tired and went to bed. My mother swears up and down that she meant to warn my father about the sabotaged clothes in the morning, but he wore a different uniform set and they were both still feeling a little raw, so she didn’t want to bring up the fight again. She decided to tell him that night instead.

And then she forgot.

Anyway, about four days later, my father apparently came home roughly an hour after he left for work, his clothes slowly, gently shredding off his body, the most bewildered expression on his face. “Paula,” he said, his voice mildly shell-shocked. “Paula, my clothes are broken.”

I will now impart all of my profit killing resources onto you, in case you don’t know them. I think most of you know them, now. But just in case you don’t.

THIS IS US-CENTRIC. I’M SORRY. 

1. GoodRx - this thing has an app now, so you can look up the best places to get your expensive medicines at the lowest possible prices without insurance on the go, and you no longer have to print coupons because you can just hand over your phone or tablet. Times have changed for the better with GoodRx. Definitely use it before trying to fill your scrip, because it will tell you the best place to go. (You can do that on the website, too.)

2. NeedyMeds - Needymeds is basically the clearinghouse of drug payment assistance. They have their own discount cards, but also connections to many patient assistance programs run by drug companies themselves. They are good assistance programs, too.

3. Ask your county - This is not a link. This is a pro tip. Most county social services will have pharmacy discount programs for people with no and/or shitty pharmaceutical coverage. You can often just find them hanging around at social services offices; you can just pick one up and walk off with it. 

4. Ordering online - There are a few safe online pharmacies. I keep a little database in a text file on my computer. Most of them are courtesy of CFS forums, my mother or voidbat, so a lot of that is a hat tip to other people, but if you’re in need of a place to get a drug without a prescription … first I’ll make sure you 100% know what you’re doing for safety reasons and then I’m happy to turn over a link. 

5. Healthfinder - A government resource that helps find patient assistance programs in your area. This might also point out the convenient county card thing. RxHope is something a lot of people get pointed to via Healthfinder that’s a good program.

Do a Google search for “patient assistant programs” + (your med), or search the manufacturers website. Sometimes the info is online; other times you have to call.

Even some of the big name pharma companies have this. It’s certainly not all companies, or all meds, but it is worth a shot.

Before Obamacare, I lost insurance and couldn’t pay for my mood stabilizers (kiiiiinda important to have those when you’re bipolar.) I was on generic Lamictal, but I went to the official Lamictal website, filled out a form with a valid prescription, and they mailed my meds to me every month for free.

They were especially adamant about enforcing this new policy at my store which was: (1) the only 24hr pharmacy within 20 miles (2) geographically right between 2 popular ERs (3) criminally understaffed (4) at the center of a notoriously Portuguese city and (5) had minimal, if any, translators to communicate to the populace that they could find discount cards.

CVS is also well known on the above mentioned apps for being the most expensive place to buy uninsured medicine.

Needless to say, I quit.

“like two years ago”

“you mean i could’ve been drinking the tap water all this time?”

“yeah. they gave us individual mailboxes too finally, you don’t have to dig through the communal bin anymore”

“are you for real right now?? i just redirected my mail, i didnt know”

and the new tennant is like “why did you guys even live here if it was so bad”

“we like it.”

“i know, so sad. he was really gross”

“i mean, his cousin streaks through the commons sometimes and knocks on all the doors”

Old Resident: yeah we have no idea where that guy came from. We’ve left messages with maintenance ‘bout ‘im but-

“Oh! Thats from the crab infestation!”

“The crab infestation?! Wow, glad they got that under control before I moved in.”

“Oh, no no, it was an intentional infestation.”

“Uh….”

Knives are decorating the walls for the Ides Of March.

There’s a community movie night held on October 3rd where tenants choose to watch either Mean Girls or binge watch all of Fullmetal Alchemist.

Every single apartment opens their windows and blasts Earth, Wind, and Fire on the 21st of September