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Perhaps it's my own "marketing" here that is bad, and my own wording that is sloppy in this post.

Fistula Foundation doesn't use this phrase "a lot" and looking around their site, starting with their homepage (where they don't use this phrase), it's not at all vague what they are ending. They are ending this condition being a permanent and horrifying disability for one million women around the world. And moving it to be the easily and quickly cured condition that it is. (And already they have funded over 100,000 surgeries with an 88% cure rate, so on this front they do have some potential to actually end this condition as a disability.)

See in context

The case for curing untreated birth trauma

by gogreatergood

Feb 162 min read 13

18

Global health & developmentEffective givingCharity evaluationNeglected tropical diseasesOpinion

Frontpage

EA relevance:

The Life You Can Save recommends Fistula Foundation.
GiveWell said about them most recently (in 2021), "We think that Fistula Foundation may be in the range of cost-effectiveness of our current top charities."
Happier Lives Institute has "fistula repair surgery" on their upcoming research agenda to see if Fistula Foundation may be a top charity for them.

My thoughts:

I believe Fistula Foundation is underrated in the EA world for a number of reasons:

They seek to permanently end a horrific condition for all women on earth, in our lifetimes.

(Whereas many other EA charities do not have such a bold and plausible plan to permanently end the problems they work on... eg, Malaria Consortium).

PS... should "permanence" even be added to the EA framework alongside tractability, scale, and neglectedness?
They are bottom-up oriented... in that they build up already existing hospitals, surgeons, and outreach programs... in manners that are collaborative and long-lasting.

(Not that top-down dependency... eg, Malaria Consortium... is inherently bad... but it's always ideal to instead be collaboratively building up such that communities can take care of themselves).
There is something to be appreciated about a cost-effective charity which specifically looks after issues common to women in low income countries, especially as there are few EA charities doing this... as of course, there are a number of horrific contexts in low-income countries that apply more often to women, or even exclusively to women (like the birth trauma that Fistula Foundation cures). This is a conversation worth having, and an action worth taking.
As there are many ways in which the wider world cares about women (eg, the popularity of International Women's Day), but does not always have something obvious and effective to do about it... I believe Fistula Foundation can be utilized to get non-typical EAs donating to a highly effective charity. Fistula Foundation's work is clear-cut and pulls at the heart strings.

(Whereas many other EA charities have very low possibilities of reaching outside of the exclusive EA club... eg, Malaria Consortium... "We give chemo drugs to kids to prevent some of them from later contracting malaria." -- this is not an easy sell... for starters, most people don't even know the details of malaria... whereas most everyone knows that women's insides can sometimes get ripped apart in labor but that this can be cured.)

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Davidmanheim1mo5

Permanence should already be under cost effectiveness over time, but I agree it's not obvious where it goes in the simplified ITN framework. if we added it, I'd suggest 'persistence' as the more general framing for how long the fix lasts. And fistulas won't ever get fixed permanently globally the way eliminating diseases globally can permanently fix an entire problem, so I'd say it's fairly persistent, but not fully permanent.

Julia_Wise🔸1mo*6

Agree, I find their claim of "permanence" strange. It's like claiming to permanently eliminate broken arms. We could reduce the causes of fistulas and broken arms, and we could ensure that everyone gets appropriate medical care to treat fistulas and broken arms, but the actual injuries will continue to happen and continue to need treatment. (And afaict Fistula Foundation isn't working on prevention, only treatment. Which is understandable, as underlying causes are less straightforward to work on.)

Whereas a contagious disease like malaria could in theory be actually eliminated.

But in general I'm glad to see attention on quality of life type interventions!

gogreatergood1mo1

It would be permanent elimination of *untreated* obstetric fistula & perineal tears (both of which Fistula Foundation treats). Not the elimination of obstetric fistula / perineal tears themselves.

I apologize if I was a little sloppy with my wording on that.

Julia_Wise🔸1mo4

Their own language is a little vague - the slogan "in it to end it" is used a lot, but it's unclear what exactly is being ended. "end the suffering caused by fistula" and "end the suffering caused by childbirth injuries" are used in some places. Certainly a world where everyone gets prompt treatment for such injuries is much better where they don't!

But I find their framing about ending fistulas strange, given that there are known risk factors (maternal malnutrition leading to small stature, very young maternal age, lack of obstetric care, infibulation) and they're not working on any of those. That's probably a good decision if fistulas are more cost-effective to treat than to prevent, but I find their marketing choice kind of misleading.

gogreatergood1mo1

As a side note, I do also see potential for their current system to additionally cascade into more of the prevention side. I'm not sure of this. But, at least, they are definitely building up local obstetric health infrastructure around the world in long-lasting manners.

Julia_Wise🔸1mo*8

Sorry, I realize this is in the weeds, but I don't see where they say they're building up obstetric health infrastructure at all. They work with surgical teams to facilitate more reparative surgeries, but it's not clear to me that those surgeons are providing any care before or during births. Again, repairs rather than prevention may just be the most cost-effective way to make immediate progress on this problem — I don't mean that it's not a good strategy!

I was looking at the Vision page which describes "in it to end it" several times as their vision (but vision statements are meant to be aspirational rather than realistic). An 88% cure rate on 100,000 surgeries is still 22,000 [edit, should be 12,000] uncured patients even after treatment, so I do think there's a gap between the vision and what one should expect in a practical sense.

gogreatergood1mo3

Sorry to write a 3rd comment in response to your latest one. Hope I'm not throwing you off, I'd be curious and enjoy hearing any additonal thoughts from you even if I disagree with them.

Just wanted to point out this fantastic Emmy-award winning documentary that profiles a few women who outreach teams managed to find and connect with a hospital that Fistula Foundation funded in Ethiopia.

One of the women profiled, the surgery didn't work (so she would be in the 12%), but they did end up finding a less ideal workaround for her anyway as they continued to care for her.

gogreatergood1mo1

+ btw your number should be 12,000 on the 88% cure rate, not 22,000.

+ also btw this was a good point about their methods not being perfect even if they DO reach everyone, that was a good rebuttal to what I had initially said! thank you for bringing it up and allowing me to respond further in the other comment I just posted.

+ my main point in bringing this point of "permanence" or "persistence" up... was more about what's being aimed at in a broad sense.

FF is acting toward an end (or to be fair a near-end) to untreated birth trauma. whereas other orgs eg Malaria Consortium are acting toward an indefinite dependence on foreign help and pharmaceutical companies for something that does not end (nor near-end) the problem as much as keep it more under control.

Julia_Wise🔸1mo5

>btw your number should be 12,000 on the 88% cure rate, not 22,000.
Thanks, you're right!

gogreatergood1mo13

thank you Julia for engaging with me. most people don't give me much when I occasionally post here. you have helped me to think about different valid points and refine my own thoughts and how I word things. appreciate you !!

gogreatergood1mo1

I feel like things are being looked at here in a bit of a bad faith manner. I apologize if I am wrong.

Yes "in it to end it" is an aspirational phrase, and limited to their "vision" page. It's not at the forefront of any details of what they are actually doing on the ground.

I imagine the Fistula Foundation team is indeed motivated to see this problem eliminated from the planet totally.

Perhaps they will transform more to the prevention side as they finish their mission of tackling the extremely low-hanging fruit of curing 88% of the 1 million women who have these 2 conditions of untreated obstetric fistula and untreated perineal tears. That is the obvious thing to do for now and will eliminate 88% of the issue of untreated birth trauma.

People in EA think that we will all be immortal and merge with machines. And many other crazy things. But perhaps we will never ever be able to stop all women from being permanently incontinent due to birth trauma. To me this seems more than plausible.
They are indeed building up local obstetric health infrastructure, in some manner or another. I did not say they are currently providing care prior to or during births as you seemed to think I said. Obstetrics is anything to do with the female reproductive organs.

I merely speculated that as FF amplifies and supports the efforts of already amazing OB/GYNs around the low-income world, and continuing to build up their outreach programs that brings in women from all over the place in to be connected with OB/GYNs, that this could at some point spill over more into the prevention side of things. Maybe I'm wrong about that. That's why I said I wasn't sure of it. But it is not far-fetched.

Greatly increasing the number of women who are connected with OB/GYN doctors... knowing where they are located and what they can do, etc, you think is not building up obstetric health infrastructure? This is the phrasing that I'm personally using but the details here are correct. Many of these 100,000 women they have funded surgeries for didn't even know their condition was curable beforehand. [edit to include this link: https://fistulafoundation.org/what-we-do/how-we-work/]

gogreatergood1mo1

Perhaps it's my own "marketing" here that is bad, and my own wording that is sloppy in this post.

gogreatergood1mo2

Thank you for your thoughtful comment David !

The "permanence" idea is definitely something I have not thought too carefully on, which is why it's just one of the little side points in this piece. -- so I appreciate your thoughts to help me think about it more carefully.

I agree that persistence is another good word for this; and also that this could be a sub-topic under cost effectiveness. Great points.

I think I slightly disagree that fixing the fistula problem is different from eliminating diseases. But in any case I do agree with your overall point on that, that persistence is probably a better word to use!

Thank you again.