What happened to ‘the baby cured of HIV’? Part Two

Of course, SciBlogs is in the middle of a Wordpress update when this news breaks:

'Mississippi Baby' now has detectable HIV, researchers find

Some of you might remember last year, when there was exciting news about a baby, born with HIV, who had subsequently become HIV- thanks to an alternative treatment strategy (basically, give babby HAART ASAP).

The end of last year, the physicians associated with the babby finally published some of their observations.

This led to a rush of 'Me too!' physicians, either trying the same approach, or reporting on their previous HAART attempts. Theres nothing wrong with that at all. One baby should not change the standard of care for babies born to HIV+ mothers. It needs to be replicated in many other environments.

Well, the Canadians had been using this 'aggressive' approach for treating babies for a while, and found it was not the miraculous cure the physicians associated with the first baby had hoped-- The 'miracle' fails 58% of the time.

But these physicians were just *sure* they had cured these kids... which lead to a disturbing trend...

It is considered medically unethical to stop the baby’s drugs now, but Dr. Deveikis and Dr. Yvonne J. Bryson, a pediatric AIDS expert at the University of California, Los Angeles, who is also working on the case, said they would consider stopping them briefly to see what happens if the baby is still virus-free at age 2.

...

Then chance intervened. One of the children, a now 3-year-old being treated at CHEO, was having difficulty sticking with the medication. Swallowing several tablespoons of unpleasant-tasting medicine twice a day is a common challenge for HIV-positive children.

“Sometimes it’s just not possible to keep going with the medication and because we would rather them not take it at all than take it intermittently, we sometimes, together with the family, make a decision to stop for a while,” said Lindy Samson, an infectious disease physician at CHEO.

Which lead me to freak out.

Until we figure out how to make sure the kids are cured and not just 'cured', YOU CANT TAKE THE KIDS OFF THE MEDS UNLESS THE MEDS ARE LITERALLY KILLING THEM. If the meds are LITERALLY shredding the kids kidneys/liver/whatever, by all means, take them off the drugs and pray they remain negative.

But in the absence of imminent death... DONT TAKE THEM OFF THE DAMN MEDS!

I CANT BELIEVE I HAVE TO TYPE THAT.

Well, HIV does what we know HIV does. The aggressive HAART didnt happen soon enough to prevent latency (HIV infects a cell and hides). Some of those latent cells reactivated, and now the miracle baby 'cured of HIV' in Mississippi is HIV+ again, because she was never cured of HIV.

And thats all the details I know now, because once again, we are talking about a press release, and not an actual publication.

This is 2014 and physicians are dinging around with kids lives, outside of a proper scientific context.

I was pissed enough at the physician who played games with the lives of two adults. But I have zero patience for this crap in children. I will say this once:

Keep the kids on the fucking drugs, you fucking idiot physicians.

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Tangentially, shouldn't someone be putting some effort into making these drugs easier for the kids to take? If a kid might die because the medicine is so foul that they won't swallow it, wouldn't the obvious thing to do be to make it taste better? Or find an alternate form? Can you even teach children that young to take a pill safey? You would think, with all the food science there is out there about making artificial flavors, that someone could make life-saving medicine that has to be taken every day taste OK.

By JustaTech (not verified) on 11 Jul 2014 #permalink

There is a huge amount of effort going into making these drugs easier to take for both kids and adults, but it is an enormously difficult task, changing the drugs so they hang around in the body longer (so you have once a day dosing) while keeping the ability to inhibit the virus AND without becoming toxic to the host is a molecular juggling act of insane complexity, this is why so few new drugs (not just anti-HIV drugs) are approved each year. And the drugs we currently have are a huge improvement on what we had at the start of the HIV era. So, better drugs for kids will come, but slowly, because chemistry and physiology aren't magic

By Ian Musgrave (not verified) on 11 Jul 2014 #permalink

Not that I disagree with your overall comments, but "only" a 42% success rate in curing AIDS seems pretty damn good to me, when I was taught that it was incurable.

"There is a huge amount of effort going into making these drugs easier to take for both kids and adults"

Does food interfere or react with the drugs? I'm sure this is not an original idea, but what prevents mixing the drugs with something the kid will tolerate, such as oatmeal or ice cream?

By Spectator (not verified) on 13 Jul 2014 #permalink

It is obviously better to stay on therapy than to go off, but remember that doctors aren't dictators, they have to deal with people, people aren't always reliable about taking their medicine. And, as implied by that quote, it is far better to do a carefully planned therapy break than to take the pills haphazardly.

If done correctly, you can minimize the risk of developing resistant virus, by making sure none of the antivirals stay in the body longer than the others. This can be tricky, as the half-lives of different antivirals vary widely, but it can be done with proper supervision. Otherwise you're effectively going from HAART to no treatment with a brief period of monotherapy in between, which is a recipe for disaster.

i thought the baby cured of hiv was because of a successful bone marrow transplant. must have my facts wrong.

i'm curious about this whole "they don't like the taste, so we quit, whatever" approach to giving children hiv meds. are they not deliverable in any other way whatsoever? considering most two year olds would absolutely spit out someone noxious tasting, iv drip, pills in a pocket of yum, nothing? nothing?! really?!!

@ c.gee
The bone marrow transplant(s?) was in an adult, and was used to treat cancer - curing HIV was a convenient side effect, and only worked because the donor had an interesting mutation that does not allow HIV to infect cells. (I think there might have been another person around the same time with a similar story?)
Re: Drug delivery to kids - I know zip about that, but I imagine there must be a lot of stuff in the works. The trick is to make sure that your delivery system doesn't affect a) how the drug works and b) how long the drug sticks around in the body. A lot of drugs aren't just interchangeable between pills and IVs, or pills with vs. without foods, liquids, juices, etc., because of this.