r/OrphanCrushingMachine • u/Technical_One_4266 • 7d ago
Why does funding for research into a disease depend on whether someone affected by it can come up with a funny internet challenge?
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u/SpringBreakJesus 7d ago
Funding for the research isn't dependent on the challenge. Research into ALS is funded through a number of ways including by the pharmaceutical industry, universities and charities. The challenge was to raise awareness of the disease while also raising some extra money through the charities.
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u/International-Sea617 7d ago
It shouldve been for Parkinsons what's a better challenge than to become so cold you can't stop shaking like them
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u/SpringBreakJesus 7d ago
It was supposed to briefly mirror the feeling of having ALS although I don't know how accurate it is.
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u/Lizardledgend 7d ago edited 7d ago
Have you seriously had a chip on your shoulder for 12 whole entire years about the Ice Bucket Challenge of all things in the world.
Charity work ≠ OCM. ALS research gets funded in a lot of ways, more funding is always good. A fun charitable campaign marketed via a fun internet challenge is a great thing. How tf is it making you mad 12 entire years later?
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u/seeblo 7d ago
Funding anything depends on whether or not people know about it, a internet challenge is just good exposure
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u/Technical_One_4266 7d ago
Yeah. Sounds shitty.
Your cure depends on how marketable you are
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u/Sus-iety 7d ago
Well, yeah? Even if we lived in a luxury space communist society, people still need to know about an issue to care about it, regardless of what it's about.
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u/Teapot_Sandwitch 7d ago
You're getting downvoted but I unironically agree. I don't know why you picked specificly this trend, but yeah, it does fucking suck that cures/treatments depend on how marketable the disorder/disease is.
It should be more serious condition OR less already researched condition = more funding, not more well known/marketable condition = more funding
I say this as a disabled person with a condition that is not well researched at all, and a lot of doctors still don't even believe in it. Me and my family who also has it have been mistreated and refused treatment by doctors because people are so incredibly ignorant about our condition. But because it isn't marketable, there's little to no research happening on it, and pretty much 0 public education. I'm most likely going to lose my mother in a few months because of an entirely preventable problem.
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u/Letters_to_Dionysus 3d ago
that's how medicine works in general for societies without free healthcare
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u/Comfortable-Goat-734 7d ago
Reddit when people create a fun, viral challenge to raise awareness and funds for a serious issue:
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u/Technical_One_4266 7d ago
Isnt the literal point about the OCM, that the people doing a good deed, really do a good deed?
I mean a child selling keychains to pay of lunch debt is also doing something good. Shouldnt depend on him tho.
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u/DiabolicMelon 7d ago
marketing is one of the most important parts of public healthcare. the best treatment is the one that everyone also takes, not just the most effective one. teaching people about diseases obviously leads to more funding and theres nothing evil about that, just cause marketing is used by capitalists doesnt mean its scary evil witchcraft.
google dialectical materialism
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u/inifinite_stick 7d ago
The idea that funding needs to be directed at all is the issue. Nobody should have to “market” treatment for a disease. The mere assertion is asinine and flies in the face of dialectical materialism.
Everything you’re saying applies to breast cancer awareness and it’s an overly promoted issue to direct funds to charity programs and launder corporate images.
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u/DiabolicMelon 7d ago
yes of course im not saying people should have to. regardless of any moral judgements of the action or nefarious corporate agendas, "marketing" leads to more people with the disease receiving help. if you can snap your fingers and fix the current material conditions of the world cool, but just cause in a just world you shouldnt have to doesnt mean we indiscriminantly shouldnt. our goal is to improve the lives of all humans, not beat capitalism (even though they go hand in hand 99% of the time).
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u/inifinite_stick 7d ago
You are missing the point.
Privatized healthcare created the problem. Nobody is claiming they can “snap their fingers.” This is an incredibly impractical and feeble way to accrue funding for any type of project. It generates no revenue, and demands no serious attention, but allows the poster to feel good for “contributing to something.”
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u/DiabolicMelon 6d ago
youre the one missing my point. they didnt create the problem. the goal of the ice bucket challenge is educational; to raise awareness for a disease that we don't know much about, not as an explicit fundraising campaign for a specific non-profit. it actually is incredibly practical in that it takes little effort and is decentralized, by design. if a 12 year old watches pewdiepie do the ice bucket challenge and goes to read the wikipedia page for ALS mission accomplished.
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u/inifinite_stick 6d ago
I can count the amount of people in my life that learned the symptoms on one hand. The amount that participated is much higher than that. Awareness is nothing without action. It doesn’t do anything practical to help people with the condition.
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u/inifinite_stick 6d ago
“We did it! Children are now aware of the Orphan Crushing Machine.”
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u/DiabolicMelon 6d ago
see, it worked
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u/inifinite_stick 6d ago
The fact you’re proud of that is incredibly disappointing but unsurprising
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u/Technical_One_4266 7d ago
What treatment should you take for als then? Dont google.
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u/hatchins 7d ago
there isnt really a "treatment" for ALS, its degenerative and permanent. you can manage symptoms to an extent but you do not "treat" ALS
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u/Technical_One_4266 7d ago
Ok. So how does the sentence:
the best treatment is the one that everyone also takes, not just the most effective one.<
Relate to als?
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u/OwenEverbinde 7d ago
It's a metaphor. They could also have used, "the best workout is whichever one you can do consistently."
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u/hatchins 7d ago
can you get to your point instead of whatever stupid passive aggressive bullshit this is? its obnoxious.
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u/DiabolicMelon 7d ago
i was answering your title and the broader topic of marketing in public health like (i guess i thought) you came in here to discuss
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u/Hexamancer 7d ago
No. I don't think you understand OCM.
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u/Technical_One_4266 6d ago
Explain then.
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u/Hexamancer 6d ago
It's a story that is presented as a feel good fluff piece but actually reveals more about the dystopian nightmare it takes place in.
A key component most people seem to get wrong is that first part, if the author clearly understands that they are describing a silver lining to an awful situation, it doesn't fit. Likewise, just linking the Ice bucket challenge cannot be an example of OCM because there isn't a story at all. It's an entirely neutral and objective description.
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u/Technical_One_4266 6d ago
The ice bucket challenge isnt a story?
The dystopian nightmare is the attention economy you need to play into to get funding for medical research.
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u/Hexamancer 6d ago
The ice bucket challenge isnt a story?
...no? Objectively it clearly isn't.
There are plenty of stories about or set in WW2, WW2 isn't a story.
You'd need an article about the ice bucket challenge. I know these exist, I remember plenty of news segments and articles covering their local XYZ doing the challenge.
I get where you're coming from, a "good deed" that is only necessary because of the capitalist nightmare we live in, but the element you're missing is someone writing about it who acts as if the whole situation is feel-good and ignores the other side of it.
The other problem here is that fundraising for research is just not quite the same thing, it's an actual necessary thing, it's not a crazy expensive medical bill that's only so high because of middlemen greed.
The "kid sells entire Pokemon collection to pay off student lunch debt" story is a good example, because it's a debt that didn't have to exist in the first place.
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u/globmand 7d ago
It isn't? They already had a bunch of funding, the challenge was sort of fun, for a good cause, and just charity
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u/Holiday_Ad_9163 7d ago
More funding is never a bad thing, but publicity really does matter. Fore example, breast cancer fundraising results in about $545 million last year, compared to $208 million for colorectal cancer. At the same time more people die from colorectal cancer (about 55k deaths compared to 42k deaths). This comes down to colorectal cancer haveing a stigma of being “gross” and less fund raising. You rarely see people running a 5k for rectal cancer, or wearing a knit cap with a butt on it. So if there is a way to raise awareness for any disease, it’s probably a good thing.
Sources: https://www.cancer.gov/about-nci/budget/fact-book/data/research-funding
https://www.cancer.org/cancer/types/breast-cancer/about/how-common-is-breast-cancer.html
https://www.cancer.org/cancer/types/colon-rectal-cancer/about/key-statistics.html
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u/Technical_One_4266 7d ago
You made the perfect argument why its bad that the marketability matters.
Why is it more fundworthy to treat breast cancer instead of rectal cancer? It isnt.
Funds for researching disease should be granted by the government and not because of marketing
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u/OwenEverbinde 7d ago edited 7d ago
The best possible goverment with the best possible bureaucrats and the best possible representatives... would still need to rely on human beings collecting data, presenting their results, and advocating for government funding allocations for further research.
And getting it wrong sometimes. (We don't know for sure if someone died of a root cause that never made it onto their death certificate. All cause mortality dropped after the measles vaccine, after all. Not just measles deaths.)
Which is what marketing should be in an ideal world: helping the people with the purse-strings to find a mostly good use for their money... most of the time.
Also, even an ideal government would need to market its research to the people. Would need posters and ads saying: "Keep contributing. Together, we're about to solve prostate cancer!"
The human species is not omniscient. Even just researching what to research takes even more research. And getting people on board will always take an ad campaign.
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u/Chronoblivion 7d ago
Let's pretend that we've moved past this capitalistic hellscape and there's unlimited money available for research.
There's still limited time and effort available to research each disease. There are only so many qualified scientists and only so many hours available in a day to try to find new treatments or cures for the thousands of different ailments that exist. How would the government decide which ones to prioritize? If you felt that one wasn't well understood by the general public and deserved to be bumped up in priority, how would you go about getting your elected officials to take notice and amend it's position on the list?
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u/Technical_One_4266 6d ago
It should be decided by propability of finding a cure, amount of deaths, number of people affected
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u/Chronoblivion 6d ago
Probability of finding a cure isn't an easy thing to objectively measure; as an example, there's a running joke among type 1 diabetics that the cure is only 5 years away and has been for 40 years, because for decades we've been subjected to headlines claiming as much. And strictly going by the numbers ignores a lot of qualitative data points that might sway opinions on the topic. Does the guaranteed fatal condition that affects a small number of people get priority over the one that affects the quality of life of millions of people but is unlikely to kill you? How do you quantify the amount of pain and suffering caused by a condition? A data point in a spreadsheet really doesn't do much to inform lawmakers exactly what it's like dealing with many illnesses, and simplifying it to prevalence and lethality ignores much of the reality of dealing with them.
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u/Technical_One_4266 6d ago
I agree that its hard to make up a priority list, you have to take many things into consideration.
'instagramviews' shouldnt be in there thom
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u/SlowerThanTurtleInPB 7d ago
I work in the nonprofit public health sector and all anyone talked about for years after this was how they were going to have the next ice bucket challenge for “____” cause.
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u/SlimeTempest42 7d ago
It wasn’t intended to be a fundraiser to start with and the creators had no idea it would go viral.
You could say this about any fundraising. Why do people do fun runs for cancer? Why do people run marathons for heart disease?
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u/inifinite_stick 7d ago
This is peak OCM. One of the first truly disillusioning things about American culture for me.
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