Curing kids of HIV: The third through seventh baby

The first and second baby, apparently 'cured' of HIV after being infected at birth, lived in the US. In the US, the standard treatment for an at-risk baby is wait for a firm HIV diagnosis before administering HAART. But when Baby #1 and Baby #2 got HAART ASAP, they are functionally 'cured' of HIV, and there was hope that this aggressive approach would be able to help the >200,000 babies infected with HIV every year.

Well, in Canada, the standard treatment for potentially HIV+ babies is the more aggressive approach that 'cured' the two babies in the US.

So, after US physicians announced their findings, Canadian physicians started hunting through their files to see if, unbeknownst to them, they had already 'cured' some kids themselves.

Transmission of HIV to babies during birth is extraordinarily rare in the US/Canada-- so they only had 12 kids to start with. 7 of those children, despite the aggressive treatment, were still clearly HIV+. So, this aggressive approach, heralded in the US for two kids... wont work >58% of the time. That is a downer.

Heres another downer. MAJOR DOWNER.

They had five kids who were the 'same' as the two babies 'cured' in the US.

YAY! Five more kids without detectable HIV!

MAJOR WIN!

How could this possibly turn into a major downer??

That left five children who range in age from 2 1/2 to nearly 8, all of whom showed no detectable signs of the virus, even in ultra sensitive tests.

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.

Oh, poor baby! You dont like the taste of the medicine that is keeping you from dying? Aww. Well, parents and physicians agree, taking yucky medicine is totally worse than AIDS, so you dont have to take them anymore.

WHAT?

WHAT???

ARE YOU KIDDING ME??????

Guess what happened after the kid was taken off the meds.

Guess.

Guess.

You all will never guess.

Unfortunately, the virus started replicating quickly, proving the child had not been functionally cured at all. The virus had simply been well suppressed. The child's viral load skyrocketed from fewer than 40 copies of the virus per millilitre of blood to 7,797 copies in two weeks and 11,358 copies in four.

Well, who could have predicted THAT.

Just one thing I am worried about for Baby #2. Baby #1 being off the drugs was a fluke. An irresponsible parents did not fill the prescriptions. Baby #2 is still on the meds. Baby #2 should stay on the meds. Because all it takes is *one* latently infected cell reactivating for the entire enterprise to go down the toilet.

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.

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Every time someone claims to be a doctor and a scientist, I make them demonstrate the validity of that last bit. The terms are obviously not synonyms.

By Joe Padilla (not verified) on 05 May 2014 #permalink

So...
Much...
RAGE!

Why the fuck are these people's ability to use logic so fucking bad that they couldn't figure out the proper course of action in this very clear cut instance?

By Kemanorel (not verified) on 07 May 2014 #permalink

The reason why a child or adult is taken off of antiretroviral medication when they are not taking it as prescribed is because the person can become resistant to components in the ARV. So if a person is prescribed ARV's and they are prescribed to take the medicine daily with food and they are taking the medicine 4x per week without food, this can seriously inhibit the way that the components of the drugs work in their body therefore leaving someone susceptible to acquiring resistance. If their HIV management physician finds out that the patient is not taking the medications as prescribed then per protocol the patient is taken off the medication, a resistance test is ordered, and a new plan for medication management is put in place based upon the result of the resistance testing. Acquiring resistance to a component of the ARV's is so detrimental because many of the ARV's available contain similar components. Limiting an already limited pool of options.

Sometimes you have to make the best of a bad situation. I get it - this is life saving medicine. Still, if you're having to spend a couple hours each and every day trying to force medication down a toddler's mouth, you and your physician may decide that taking a break is necessary.