>(and in fact didn’t work)

This review [1] cites 11 documented survival outcomes of the Milwaukee and related Recife protocols. Is there a basis to your claim?

[1]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7670764/

> rabies leads to death in 100%

That is not true anymore. There are two known protocols with a small chance of working but which have already saved about a few dozen lives. They are called "the Milwaukee protocol" and "the Recife protocol" after the cities they were developed.

Not sure about the Recife protocol, but it's pretty much accepted now that the Milwaukee protocol doesn't work[1][2] - the initial case may have been some other encephalitis mimicking rabies.

[1] https://journals.lww.com/pidj/fulltext/2015/06000/the__milwa...

[2] https://www.cambridge.org/core/journals/canadian-journal-of-...

Your second link is an error 404, page not found.

How did you get that “the initial case may have been some other encephalitis mimicking rabies.” from that paper?

AFAICT The paper questions the hypothesis that the 2 additional survivors had rabies, but not the first patient.

You may want to reply to drunkendog so they see your question.

Oh I didn't pay attention that you weren't the original poster of that link, thanks for pointing that out!

Back when I was a paramedic, I HAD a rabies patient that survived using the Milwaukee protocol.

It doesn't work very well... but it does seem like it occasionally works.

That's amazing.

How did you get that “the initial case may have been some other encephalitis mimicking rabies.” from the decond paper paper?

AFAICT The paper questions the hypothesis that the 2 additional survivors had rabies, but not the first patient.

> They already tried the experimental Milwaukee protocol even though it wasn’t clinically established (and in fact didn’t work)

It worked for the first patient on which it's been tried though! Which is still an objective win even if it wasn't particularly successful afterwards.

The first patient might not actually have had rabies.

I don't think there's much doubt on that actually, the diagnostic was confirmed by CDC analysis and antibodies were found.

towards the end of the article, they say it makes sense to test in India because they get large numbers of advanced rabies cases whereas north america supposedly gets zero.

Yes. My point was it sounds like we’ll delay it for years for testing.

But 59,000 people die of rabies each year and each case is almost certainly fatal.

So it seems we should speed up distributing this. If rabies patients start surviving then we know it works.

At that point we can test exactly how much it works. But meanwhile why wait?

The Milwaukee protocol is not particularly good. It has a low survival rate.

However considering the normal survival rate is zero... It's a lot better

I mean.. you can't say it doesn't work if it led to the first ever documented case of rabies survival. That's amazing.

Once again, every single comment is picking apart the least important aspect of a comment. Though it works a small percentage of the time or not, the Milwaukee protocol is evidently not nearly effective enough, thus necessitating this research into a cure.

Your question stands: why not test it? There's precedent for testing unproven drugs on humans in extremis, so it's not that.

As a halfhearted stab in the direction of an answer: I assume they will try it in human rabies victims in a later phase, they're just testing it in mice first.

> Your question stands: why not test it?

Because there are so few late stage rabies victims that you simply can't get the data?

By and large in the US, people know the protocol--get bitten by a strange animal, head to the ER and get ready for rabies shots. And it almost always works.

Apparently, the US never had a post-exposure death until one 84-year-old man with an immune deficiency (and a bunch of other health issues) died of it. It's not clear anything would have worked for him. https://www.unmc.edu/healthsecurity/transmission/2023/04/04/...

Basically, the only people who die of rabies are those who missed that they got bit or those who were dumb enough to refuse the vaccine.

>>Because there are so few late stage rabies victims that you simply can't get the data?

In India, estimated 20k(!!!) people die of rabies each year. Surely that's enough to warrant human testing.

https://www.who.int/india/health-topics/rabies

I think there are some ethical issues with trying to find those people and not treat their disease before it is too late, most of the testing will consists of preventing people from becoming good test subjects.

I'm not saying it's bad, but it will be expensive and may fail to yield much result (as far as testing the cure goes).

Treating them is the point. Find people who's too late to get the old rabies shot and give the new treatment to them. The difficult part is control group but that's always the difficult part. Without control group they can probably just compare statistics with the past...

I don't think you really need a control group for something with a well established nigh 100% fatality rate.

The fact that 20K people die to a disease that has a set of proven, relatively inexpensive treatments tells me that 20K people already can't get to a medical facility.

Getting to those people to a medical facility to test a new, unproven, expensive treatment simply isn't going to happen.

This is especially so since there are a vast number of diseases that are much higher priority than rabies in India.

I have unfortunately seen some heartbreaking videos where it's children who got it. Some for sure can't get access to medical care in the rural areas, but sometimes the kids might not even know.

> Basically, the only people who die of rabies are those who missed that they got bit or those who were dumb enough to refuse the vaccine.

Lots of people are dumb enough not to go to the ER following a harmless animal bite.

Maybe, if it's a bat, but lots of people won't bother (and 99% of the time, they'll be fine either way)

Post exposure vaccination alone is not sufficient to prevent death for all cases. Immunoglobulins (HRIG) must also be administered. HRIG is not commonly available in many developing countries or rural areas. This is why preexposure vaccination is recommended for vulnerable groups (children) when traveling to such areas.

I might have been unclear: the Milwaukee protocol was not effective.

My point was, normal medical ethics seem to go out the window here. With most interventions, you can harm the patient, so you had best not give them anything until you test it.

But a symptomatic rabies patient is default dead. Given these results, it strikes me that we ought to move much faster through our usual phases and make it available for immediate use in centres which are symptomatic rabies patients.

If any of those patients start surviving, the drug has proven itself for general use and stats can be gathered. The control group is every prior symptomatic rabies patient: they all died.

The article made it sound like this will be something rolled out over several years. If that, as investment is required.

An estimated 59,000 people die of rabies each year globally. Each year of delay kills them. My question is should we not make this available immediately and see what happens?

It isn’t like heart disease where the patient will often live many years and so a new treatment must prove itself. Literally everyone dies of rabies if symptomatic.

> An estimated 59,000 people die of rabies each year globally. Each year of delay kills them.

How many are diagnosed before it's too late?

In the developed world where you're likely to get tested and diagnosed, we probably don't have many cases.

And you probably can't give the treatment to suspected cases.

But yes, there is little risk in testing on diagnosed patients.