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satt10y50

The fact that the disease was first detected in the gay community is only attributable to the marginalization they already lived in.

And yet the disease has never broken into the straight community, despite decades of predictions that it was on the verge of doing so.

Whoa, déjà vu.

[anonymous]10y20

I have a prediction...

EDIT not overwhelmingly likely given further examination.

See in context

9 LINK: Diseases not sufficiently researched

by polymathwannabe

17th Jan 2015

1 min read

9

This Chart Shows The Worst Diseases That Don't Get Enough Research Money

We have already covered this topic several times on LW, but what prompted me to link this was this remark:

Of course, where research dollars flow isn't —and shouldn't be— dictated simply in terms of which diseases lay claim to the most years, but also by, perhaps most importantly, where researchers see the most potential for a breakthrough.

[Edit: a former, dumber version of me had asked, "I wonder what criterion the author would prefer," before the correct syntax of the sentence was pointed out to me.]

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[-][anonymous]10y80

The transmission rate per-infected-capita has declined dramatically from the height of the epidemic and continues to drop:

http://www.microbiologybook.org/lecture/transmission-lg.gif

(Figures I can find indicate that the figures today are less than 2/3 the rate at the end of that graph circa 2005, and that while there are a few particular age subdemographics in which male-to-male sexual transmission rose slightly over the last decade total male-to-male transmission constantly declined.)

Annual figures from Russia indicate a massive decrease in spread in the early 2000s, and a major downward phase-shift in spread amongst infected people in the homosexual population circa 1996 when you compare the fraction that are infected via different routes with the total number of cases.

http://darussophile.com/2009/03/myth-of-russian-aids-apocalypse/

As near as I can tell the disease is now sub-replacement in the United States, with each person who gets it (a bit over half of all new infections now being male-to-male sexually transmitted) on average infecting less than one additional person over their expected lifespan, and this was true both just before and after antiretrovirals began massively extending life. That's a hell of a behavior change from the early days of the epidemic.

[-]gwern10y50

Mike Darwin has an interesting little history of the gay organizing around fighting HIV: http://chronopause.com/chronopause.com/index.php/2011/05/31/going-going-gone-part-3/index.html

[-][anonymous]10y00

Indeed, organizing politically was something of a existential imperative. The parallels with cryonics are... strained? I don't know.

[-]alienist10y-10

That article appears to be a partial white washing of the early history of AIDS.

[-][anonymous]10y40

Cuba doesn't even figure in to the "early history" of HIV. The earliest confirmed case in the States was in 1969, twelve years prior to Cochrane's weasely "first noticed cases."

Cuba is the size of Tennessee and had less than one-twentieth the population in 1980. It also had and continues to have among the highest number of doctors per capita in the world.

There's a reason Cochrane mentions Cuba and not, say, China, where quarantine attempts failed.

Previously.

[-]buybuydandavis10y50

I wonder what criterion the author would prefer.

Didn't he just say?

where research dollars flow isn't — and shouldn't be— dictated simply in terms of which diseases lay claim to the most years, but also ... where researchers see the most potential for a breakthrough.

Basic economics takes into account the likelihood that your actions will produce a benefit, and not just the benefit. Hasn't the author just stated the obvious?

I just don't get your point. I don't see any point to be made.

What are you "wondering" about? It seems like you object to his comment, but have given no indication why, and I see little to object to.

[-]polymathwannabe10y30

I am so stupid! How could I read that sentence, copy and paste it, and not get the meaning right? I honestly thought that the "but also" clause served to add potential breakthroughs to the list of things that should not motivate funding.

My only possible excuse is that my brain is wired for Spanish, and funny stuff happens when you translate "but" into Spanish.

[-]torekp10y20

Metus pointed out that the funding has "a bias for infectious diseases". That seems like a good criterion to add, at least when it comes to emerging diseases - diseases that haven't laid claim to many life-years yet, but might in the future. Mac made a similar point. But yeah, basically, the author nailed it.

[-]Metus10y50

It seems to me that research funding is surprisingly well calibrated with a bias for infectous diseases as opposed to what I as an amateur would call "structural failure" collecting ischemic heart disease, stroke, injury and so on.

Looking at the "overfunded" category the worst offenders are HIV and cancer. I suppose cancer research is overfunded because people donate to causes their loved ones suffered and cancer tends to kill old people with a lot of money. But I have no good explanation for the overfunding of HIV which is a completely preventable disease on the personal level by using a condom and refraining from using IV drugs. BTW, the most successful HIV reduction programs give out free needles and condoms, reducing the need for medical treatment and of course human suffering in the first place.

Looking at the "underfunded" category we have injury, ischemic heart disease, COPD, depression, stroke. Injury is something that disproportionally affects poorer people, so I use the reverse reasoning to cancer. I have no good explanation for the underfunding of the other diseases here, except for maybe depression which has a bit of a stigma to it. At best I'd guess that heart attack and stroke do not have the spectacular, drawn out suffering like cancer and HIV treatment have.

[-][anonymous]10y90

It seems to me that research funding is surprisingly well calibrated with a bias for infectous diseases as opposed to what I as an amateur would call "structural failure" collecting ischemic heart disease, stroke, injury and so on.

I too was incredibly surprised to see how close everything lies to the 1:1 line. Most overfunded only 16% over the line? Most underfunded 11% below? Holy crap, the people behind that deserve a medal.

Looking at the "overfunded" category the worst offenders are HIV and cancer. I suppose cancer research is overfunded because people donate to causes their loved ones suffered and cancer tends to kill old people with a lot of money. But I have no good explanation for the overfunding of HIV which is a completely preventable disease on the personal level by using a condom and refraining from using IV drugs.

I suspect cancer is probably at least partially up because there's so many subfields of cancer that don't always behave like each other. There's breast cancer, skin cancer, pancreatic cancer... a lot of the time you need to do separate research on each, and that kind of duplication might spill over into money applied.

Could HIV funding levels being a bit over the ratio be a result of recent declines in disease burden but an unchanged allocation? Antiretrovirals have massively decreased the burden on the big overhang of those who got the disease over the decade before they were developed, at least in developed countries, and at least until resistant strains develop.

Or perhaps the desire to end an expanding disease, thus taking into account future levels of expanded burden? It's not like advances in treating HIV are intended only for the US where the only reason it's still expanding is that the people who are infected live on for decades while on average not 'replacing' thesmselves (you can see a small dip in the number of people with the disease in the nineties, as new infection rates declined but before antiretrovirals kept those with the disease alive longer). Most of the bad effect is centered in Africa where its growing much much more rapidly. And I don't think it being preventable really enters into these calculations, as prevention has obviously not actually worked in many places. Though prevention should obviously be a big fraction of the effort against it.

As for Inury being underfunded, isn't it also the case that 'research' on injury has been going on for as long as there have been people, whereas molecular biology and germ theory and the like have opened up new vistas in treating communicable diseases and many other things only in the last century or two? There's probably a lot less expected utility in the research they can do there.

[-]JoshuaZ10y60

In the case of HIV there are likely a variety of different functions going on: First political organization: dealing with HIV became connected to the gay rights movement, especially when religious figures and politicians who were not happy with the gay rights movement said that gays deserved it or that it was punishment from God or otherwise mocked what was happening.

Second, HIV has a long time from diagnosis to when it becomes AIDS. This makes it a disease where the people with it can actively take part and lobby for more funding- since the primary treatments put the disease merely in check rather than curing it, the medical results make this tendency more strong rather than less strong.

Third, the massive increase in HIV cases in the 1980s made it seem like a disease that was a general threat to the population, and people are still riding that assumption.

Fourth, HIV is a disease that in principle (and sometimes in practice) can arise in a variety of different populations: the presence of people who received it from blood transfusions helped make it feel more like a disease threatening the general population (this connects in the obvious way to point three), and this combined with the presence of HIV+ babies to give a strong emotional aspect.

[-]ChristianKl10y20

But I have no good explanation for the overfunding of HIV which is a completely preventable disease on the personal level by using a condom and refraining from using IV drugs.

Condom usage reduces the changes of getting infected via sex by ~90% not 99.9%.

[-]gwern10y10

I found the 'injury' entry too, but I'm not sure it is a good target for improving. 'injury' is broad. I know what HIV is, and I have a good idea of what researchers might do to improve it ('develop a vaccine'; 'discover a new drug'), but what does one do with a category like 'injury'?

Presumably this category embraces everything from burning yourself on a stove to falling on ice to heavy machinery at work killing you; there's not one or a few different problems there, but thousands of distinct ones which have next to no causal mechanisms in common. (And people are frustrated by cancers...!)

So research may have counterintuitively low ROI: OK, so you managed to cut stove burns by say 10% using your extremely expensive public health campaign to switch as many houses as possible from electric coils to induction heating, but stove burns were only say 5% of all accidents in the first place so your ROI works out to be terrible compared to dumping even more money into HIV or something.

[-]emr10y50

The causes of injury are quite skewed. From the CDC, here is chart showing leading causes of "fatal unintentional injury": http://www.cdc.gov/injury/wisqars/pdf/leading_causes_of_injury_deaths_highlighting_unintentional_injury_2012-a.pdf. Note that this isn't DALY-lost.

As expected, car accidents and falls in the elderly account for a largest chunk of deaths. Next you have a cluster of poisoning and suicide (which I guess is classified as unintentional?). Some quick googling suggests that traffic accidents and falls are both roughly top 20 in leading causes of (global) DALY lost, although I'm out of time to check for better sources. I'd bet that poisoning is a bigger problem than currently measured in poorer countries.

Can these causes be targeted? An interaction of public policy and technology has reduced (and continues to reduce) deaths per million vehicle miles traveled. On the latter, I've noticed that "risk of falling" is often tracked in studies of the elderly, although I don't know anything more about this.

[-]gwern10y50

An interaction of public policy and technology has reduced (and continues to reduce) deaths per million vehicle miles traveled.

Traffic accidents are hard because risk homeostasis works to negate improvements, and a lot of research has already been put into improving automobile safety, so the outside view is that we should expect continued diminishing returns. On the other hand, autonomous/self-driving cars are a new innovation which could potentially make a big difference. So that seems like a good area to target.

Next you have a cluster of poisoning and suicide (which I guess is classified as unintentional?).

Good luck trying to reduce suicide! Poisoning... I dunno. Many of those might be suicide, and the obvious tactics of child-safety locks and warning labels have been implemented for a long time. Is there any low-hanging fruit there?

I've noticed that "risk of falling" is often tracked in studies of the elderly, although I don't know anything more about this.

Falling is a huge problem for elderly, and also one that seems to me like it could be easily tackled. As Joshua says, there's architectural improvements to housing that would reduce risk of falling which are currently uncommon, and there are other tactics: exercises and vibrating platforms may be able to improve the balance of elderly, and there's a biological aspect in weakened bones (vitamin D clinical trials sometimes show reductions in all-cause mortality, which seems to be largely due to better bones leading to fewer damaging falls, and this may be why the bisphonates also reduce all-cause mortality).

[-]JoshuaZ10y30

An interaction of public policy and technology has reduced (and continues to reduce) deaths per million vehicle miles traveled.

One other thing to note here is that it isn't clear how much of the technology improvement is technological improvement in medicine. In particular, there's an argument that murder rates have gone down because people who would have died from from some injuries are now being saved. (See e.g. this summary. ) If so, this has likely also contributed to the reduction in automobile fatalities, although I'm not aware of any studies which have specifically looked at that impact.

[-]satt10y20

Though this still leaves the door open to mitigating road traffic injury, and injury more generally, through improved medical technology. There is at least one juicy bit of low-hanging fruit waiting to be taken here.

[-]JoshuaZ10y30

I don't have a specific breakdown data on types of falls in the elderly but one category that is common is falls in the bathrooms. Switching to curbless showers (which have become more common in general in North America) reduces shower falls in the general population and (I've been told by people in the industry) reduces falls especially in the elderly. There are likely many small aspects of household design that can help here in similar ways.

[-]Douglas_Knight10y10

Since you asked...No, suicide is not classified as unintentional. Nor is homicide! That is not a chart of unintentional injury, but of all injury, with unintentional causes highlighted by being colored, while suicide and homicide are in white.

[-]emr10y00

Oops! Thanks for catching that.

[-]bramflakes10y-20

But I have no good explanation for the overfunding of HIV which is a completely preventable disease on the personal level by using a condom and refraining from using IV drugs.

one would think so but certain demographics can't seem to handle this

[-]Metus10y20

[Seperate post, because it is a seperate point]

I wonder how a "rational" funding system would look like if an economist designed it. The expression "where researchers see the most potential for a breakthrough" under the constraint of competition over limited resources just screams "market mechanism" to me.

[-][anonymous]10y70

It seems to me that one characteristic of the optimal funding system would be very high funding/burden ratios for contagious diseases with catastrophic worst-case scenarios (e.g. Ebola), holding all other things like P(Breakthrough) equal.

A market-based system might not have this characteristic, especially if a "free rider" problem arises.

[-]ChristianKl10y00

I don't think academic research has to focus on diseases in the first place. I would appreciate if more money would be invested into finding better ways to measure drug toxicity levels. That's no disease and therefore it's underfunded.

DNA sequencing is a success story of the last decades. It's no disease itself but was a worthwhile investment.

It makes sense to spend money research AIDS not only because curing AIDS is a good idea. AIDS patients are a population where you can ethically try a lot of high risk interventions for interacting with the human immune system.

[-]polymathwannabe10y-20

The 1980s just called, and they want their misinformed, odious, uncalled-for moral panic back.

[-]alienist10y-40

Wow, do you have anything resembling an argument to go with that list of boo lights?

[-][anonymous]10y30

What would such an argument look like?

I could reply with the various statistics showing that gays and lesbians in the states have become more monogamous in the past thirty years, but since advancedatheist has already assumed all such behavior is "self-destructive", it wouldn't matter much whether they were monogamous or non-monogamous, would it?

We could peruse the literature and determine that the basic template of this one-liner is much in the vein of similar ill-informed remarks made by preachers, politicians, and other pundits over the past thirty years, thereby establishing that in fact, it was "misinformed... moral panic" from the 1980s, but who would really be convinced by such a thing? No one who hadn't lived through decades of it, probably.

Anyway, didn't we do this a couple months ago? If risks like these are "self-destructive behavior", then OP probably shouldn't leave the house too often.

[-]alienist10y-40

I could reply with the various statistics showing that gays and lesbians in the states have become more monogamous in the past thirty years,

Well, that would actually be on topic, and then advencedatheist or myself could actually look at your statistics to see whether the size of the effect was significant or whether the statistics themselves are BS. I haven't look at the statistics in detail but from what I've seen of society that does not in fact appear to be the case.

We could peruse the literature and determine that the basic template of this one-liner is much in the vein of similar ill-informed remarks made by preachers, politicians, and other pundits over the past thirty years,

Well, you'd need to establish that those remarks were themselves "ill-formed" and you can't do that just by looking at what they said, you'd have to compare it to reality.

[-]polymathwannabe10y-10

OK, if you want concrete arguments:

This [the relative overfunding of HIV research as compared to other, more pressing epidemics] happens because gays have organized politically

The first thing wrong with this statement is the knee-jerk association of HIV with the gay community, which disregards the difference between the vulnerability gays had during the past century and their better standing today. Gays kept their sexual life secret because mainstream culture routinely feared, hated and misrepresented them. In such conditions they were much more exposed to STDs, because clandestinity made it much harder to establish and maintain stable relationships, and stigma gave them less incentive to seek medical attention.

Also, the antibiotic boom had lessened the fear of the old STDs, all of which were now curable. This, together with the contraceptive pill, was a huge boost to the 1960s sexual revolution, which made the 1970s a period of relaxed attitudes about safe sex. Thus, the 1980s were wholly unprepared for a new STD. The fact that the disease was first detected in the gay community is only attributable to the marginalization they already lived in. This disease can be used as a proxy indicator of which group has the least autonomy and freedom to protect itself, which makes it not at all surprising that currently the demographic sector at most risk for AIDS is heterosexual housewives.

One side effect of the AIDS epidemic was to expose the hypocrisy of having had a sexual revolution that didn't acknowledge the existence and validity of the gay experience. However, gay political activism had started well before AIDS; remember the Stonewall riots occurred in 1969.

they don't want to change their basically self-destructive behavior.

Nobody would have described the gay experience as "self-destructive" before the AIDS epidemic. The closest that you would have heard would have been prophets of doom citing God's nuking of Sodom as a scare tactic that was getting older every time they repeated it.

It is not being gay per se which kills you; it is being forced to live in secret and not having anywhere to go for help. If you take an entire segment of the population, declare them not fit for public viewing, and object to their every movement, you can't act surprised when they're hit first and hit hardest by a new disease.

But there is another, more sinister layer of meaning beneath the description of the gay experience as a "self-destructive behavior" that they "don't want to change." You're basically describing them in the same language used to demonize drug addicts, and thereby you're disrespecting both populations. Addictions involve a physical dependence that impairs proper decision-making, and accusing them of simply not wanting to change goes against the facts and against compassion. By using the same language to describe the gays, you're falling into the gay-as-a-choice trap, which is not only a myth, but an insult to their intelligence. Apart from true addictions like nicotine, ordinary people are smart enough to stop doing something that kills them. In any case, it is not their desires that's killing the gays; it's lack of legal protections and lack of human compassion. Blaming them for their desires is completely beside the point.

[+]alienist10y-50

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