[RD] Does Every Disease Deserve Awareness?

[Synobun]

When I find myself in conversations with people about my health, it often leads to a proclamation that it's unfair for there to be so little attention and funding for treatment and research. The number of people who fall within the same category of me likely make up less than 0.001% of the population.

I have always responded, clouded with depression over my health, that there is no point in there being awareness of what I'm ailed with. It impacts so little people. Funding is better for the big names like cancer, diabetes, alzheimer's, and other major diseases that are far more likely to be bumped up against in your daily life than a disease that is either singular to one person or to a minuscule demographic.

But this feels... cruel, to me. It makes me question if I feel this way because I am generally in despair over what I am and not because I genuinely believe it from a logical viewpoint.

So I figured I would turn to CFC, especially since members here come from all over the world and have their own unique personal and cultural experiences to draw from.

Does every disease deserve awareness and funding? Is it okay if the uncommon and rare conditions get pushed aside to make room for the diseases that ail the most people? What determines which condition is worth investment and which isn't?

 

[Ryika]

When it comes to the budget that is available for research and treatment, then yeah, it makes perfect sense to realize that the world is cruel, and that, to remove as much of that cruelty as we can, we should focus our budget on the things that have the greatest impact based on what diseases affect the most people, and the impact they have on the lives of these people.

That's seems kind of cruel because you have to have your rationality win over the feeling of wanting to "help everybody", which just isn't possible. A "fair" solution simply doesn't exist, because you either neglect people who are unlucky enough to have a rare disease, or you neglect a LOT of people who have a disease that is not that rare, by focusing part of your budget on something that affects almost nobody.

So... yeah, in general I would say it's okay to push uncommon and rare conditions to the side, but I do agree there's some cruelty in "having to think that way", even as somebody who is not affected by it (at least not so far). But in my opinion the cruelty comes from the situation that reality has put us into, not so much from the decision that we took. It's just a game we can't win.

In my opinion the real question is whether we are currently neglecting ways to push more funding towards research, but going down that route would just end up as a political debate.

 

[Valka D'Ur]

Before you push funding for a disease, you have to have awareness that it exists.

I have fibromyalgia, and had to fight for years with my doctor to get a proper diagnosis. She was so damn sure I was faking, and finally dared me to go to a specialist - she was convinced that the specialist would confirm her idea that not only did I not have fibromyalgia, but that no such disease exists.

The joke was on her. I hadn't been with the specialist for more than two minutes when he looked me straight in the eye and said, "You have fibromyalgia."

There is quite a lot of misunderstanding about this, and it doesn't hit everyone the same way. There are days when my fingers just seem to lock up and I can't even hold a pen properly, let alone write anything with it. I used to be a good, fast typist, but some days I've got no dexterity at all and it's a challenge to turn out a paragraph of text here that's not full of typos. And some days it's just painful to touch almost everything. The cat doesn't understand when she wants to be cuddled and petted and I find her smooth fur difficult to touch.

I don't know how much funding this particular disease gets. I'm just tired of the notion that it doesn't really exist.

And those "on a scale of 1 to 10, how much pain are you in" questions? They drive me to start yelling at the person who asks them. When things are haywire to the point where part of a hand can feel numb and some fingertips are so super-sensitive that you can't stand to touch anything, how do you answer such questions? I honestly can't remember what it's like not to feel pain.

 

[Lexicus]

In principle, sure, but as long as resources are limited I don't see how we can avoid doing some triage.

 

[El_Machinae]

Because of the ratcheting nature of science, and that fact that all of biology actually is integrated into a whole, then in many ways it makes sense to have 0.001% of the medical research being done on 0.001% of a disease that affects people. Because of diminishing returns in research (adding one more scientist to a problem that is already being handled by a huge number of scientists might not do much), then having people spread out makes sense. Research usually has a heavy 'motivation' component, so letting researchers chase what they prefer to will make things go faster.

But this is a second question to the bureaucracy, etc. There's a minimum amount of social effort that needs to be done to get funding targeted to a specific disease. And so, there will be a point where 0.001% of the funding allocated to that disease will generate ... zero new research. But it would still be worth having someone compile the known data, rewrite it into plain language, etc. To create something useful for the people suffering from it and their caregivers.

OTOH, because of the ratcheting nature of science, sometimes it worth putting off a set of research in order to concomitantly tamp down an expensive problem AND build tools that will increase the utility of future forays into the orphan disease. Those big diseases are a net drain on the amount of wealth society has available to invest into progress. So, large victories will then free up resources. As well, when the greater amount of resources is brought in to the orphan disease, those resources can buy better tools and knowledge.

Now, on the whole, people under-invest in medical research. We have a hard time with doing the economic calculations required to give ten bucks to a research organisation, so we don't.

The third paragraph above literally happened to me. I was working on Parkinson's when I began my career. Then I spent two years on Multiple Sclerosis, because of the way funding works. When I came back to Parkinson's, one of our machines had been upgraded in the interim. What used to take four days to ask one question now took one day to ask 18 questions. That's a really big jump! As well, I was two years wiser. I knew more about neuron biology. I knew more about the immune system. Any and all work that I then did on Parkinson's was vastly more productive than it would have been even two years earlier.

 

[EgonSpengler]

Now, on the whole, people under-invest in medical research. We have a hard time with doing the economic calculations required to give ten bucks to a research organisation, so we don't.

I agree with this. In the U.S., the problem of limited resources is far, far down the road from where we are now. Our budget management and priorities are what stand in the way of, I dunno, quadrupling research funding across the board. A year ago, The Washington Post cited a study by the International Institute for Strategic Studies (which I know nothing about) that put US military spending at $598 billion; meanwhile, according to nih.gov, "The [National Institutes of Health] invests nearly $32.3 billion annually in medical research for the American people." So just the increase to defense spending recently proposed by the current administration (which was only a bit more than that already planned by the previous administration) would by itself more than double the NIH budget. Limited resources, my butt.

OTOH, because of the ratcheting nature of science, sometimes it worth putting off a set of research in order to concomitantly tamp down an expensive problem AND build tools that will increase the utility of future forays into the orphan disease.

This reminds of a story I read a few years ago: A researcher wanted to start a study on the effects of head trauma in adolescents. In preparing his study, his found no MRI scans of healthy teenagers to use as a baseline, so he scrapped his original plan and simply started scanning healthy brains to compile a data set that other researchers could then use for studies of things like concussions and drug use. I haven't followed up to see where the guy or his work is today. I also don't know how much his project cost - probably the equivalent of a pack of gum, in federal budget terms.

 

[El_Machinae]

The very fastest way of earmarking more of your money and the government's money to medical research is through the tax deduction. Society spends roughly 0.5% on research, for various motives and at different levels of efficiency.

That means that one hour's wages per month more than doubles your effective contribution. On the supply side, which is where the current deficit is

 

[Synobun]

That means that one hour's wages per month more than doubles your effective contribution. On the supply side, which is where the current deficit is

That is an interesting way of structuring it, and makes me wonder about the potential validity of incorporating an optional form every tax season that allows people to designate a certain percentage of their paycheque to a department/concept of their choosing for the following year. It would be interesting to see if people would be willing to be taxed a little more if their donation to a cause or system they support was automatically done and required no manual effort on their end to make it happen every month. Even if only a third of the nation does it, that would certainly increase funding for research by a fair margin.

 

[civvver]

I mean most medical research is profit driven so it doesn't really matter if every disease deserves it or not right? I don't think most cancer research is done to cure cancer but rather to find drugs they can sell to cure cancer or treat the symptoms.

Also I've heard in the past there's little research done on sickle cell because of the type of people who contract it don't rate out as a great group to profit off of, or maybe the type of people who donate to medical research aren't from that subgroup. I mean it seems blatantly racist and maybe I'm way off, but I can see why rich white people would be extremely interested in donating to breast cancer and Alzheimer research and not so much to sickle cell.

 

[Perfection]

Researching Orphan diseases shouldn't be thought of as a fools errand that takes funding away from more popular diseases. Rather it should be seen as an opportunity to approach understanding the human body from another angle.

As I see it, it would be a lot easier to research diseases if we better knew how the body functioned in the first place.

 

[El_Machinae]

Well, there's functionally no difference from donating to a charity and being willing to pay more taxes for that specific social good. But lotsa people won't fund something unless everyone is forced to. They'll voluntarily pay more taxes. But they won't voluntarily just pay more.

Edit: for civver, there tend to be three wings of funding research - corporate (which will be for profit), government (which tends to be incremental), and charity (which will fund based on probability of making a difference)

 

[civvver]

Actually I think charity funds based on the interest level of the individual donors. If rich people are interested in a disease they will fund it.

 

[El_Machinae]

Ah. Yes. People will fund charity based on their interest. What I mean is that research charities will fund grants based on a calculus of trying to make a difference with the disease

 

[warpus]

I'm sure not every disease deserves attention. But if someone wants to put up a billboard to tell me about Lupus, I don't see the big deal.

 

[Berzerker]

while I like to rip corporations and hate drug ads I gotta admit I've become much more aware of diseases

maybe ignorance is bliss

 

[Timsup2nothin]

I have fibromyalgia, and had to fight for years with my doctor to get a proper diagnosis.

I genuinely don't get this. If you were sure you had it, and this doctor said that you didn't, why did you go back? What was gained by spending years that could have been spent treating at least your symptoms if not your disease on this "prove the doctor wrong" project?

I got mad at a doctor once...for wasting my time. I called to get an appointment as soon as possible, telling the receptionist I had a sinus infection and needed an antibiotic because it was bad enough to affect my work. They got me in the next day and I filled out a stack of forms and told the receptionist again that I had a sinus infection and needed an antibiotic. An hour later an assistant showed me into a room, weighed, measured, took my temperature, and asked me what was wrong...so I told her I had a sinus infection and needed an antibiotic. Another hour passed, by which time I was pinging off the walls of this room, and the doctor came in and asked the same question, despite the fact he was looking at a chart where my previous answer was clearly written. I told him the same thing, he looked at me for about a minute, and said "you have a sinus infection, I'll write you a prescription for an antibiotic."

So, I paid this bozo a chunk of my hard earned money and wasted a day that I could have used earning more money so he could eventually tell me what I already knew. I was furious, true enough, and since then I've learned, and just bought antibiotics in Mexico when I need them. But if he had said anything else I would have gone somewhere else for my antibiotic. I would not have felt any compulsion to educate the man.

 

[GoodSarmatian]

Research funding for every disease may be impractical and from an utilitarian perspective it makes most sense to prioritise the more common ones, but as Perfections pointed out it also has the side effect of improved understanding of our own biology. Especially when we're dealing with something really out there like FOP.
The bigger problem with private medical research is not that it focuses on common diseases, it's that it often focuses on minor annoyances and then spends money on marketing to sell pills to healthy people.

Awareness on the other hand doesn't cost much and should be promoted for every disease. Making a disease well known enough that people recognize the symptoms can have a greater effect than donations for medical research. Sometimes there already is a treatment and people suffer needlessly because they're not aware of their medical issues.
I've recently found out through random internet reading that I might have an easily treatable and not even that rare genetic defect. One that had been discovered decades before I was born. I went to a doctor, listed the symptoms and he agreed that it's very likely. Still waiting on the test results. It's still treatable, but I'm pretty sure that had I known about it earlier and been diagnosed in my teens instead my mid-thrirties my life until now would have been much better.

 

[uppi]

I think there is a difference between basic and applied research. In basic research, I do not think it is a good idea to tie funds to a specific application at all. I would rather fund the areas with the highest gain of knowledge, no matter whether it can be applied to a pressing problem or not. Funding tied to the cure of a certain disease, no matter whether raised to address a common disease or because of raised awareness of an uncommon disease, will just force scientists to come of with strenuous links between what they consider interesting and what is supposed to be funded. in the long run this will lead to disappointment of the funders, when the thousandth breakthrough on cancer does not result in any measurable result in treating some form of cancer.

The situation is different when it comes developing a specific treatment for a specific condition. The goal and the expected result should be somewhat clear and we should prioritize according to the impact on public health. However, the market is quite good at directing effort to common diseases and I believe the return on investment to no scale linearly with the money spent. Therefore, some funding for even the most rarest diseases is a good thing just to be able to develop the simple things that do a lot to help the few people affected by it. But I think we should have better mechanisms for that than awareness campaigns for the disease of the month that result in momentary overfunding of that disease, just to disappear into obscurance again once the awareness has dissipated.