Friday 31 March 2023

No Surprise...

The Make-A-Wish Foundation offers children with life-threatening illnesses a chance to live their dream: be a firefighter, adopt a puppy, go on a wild shopping spree.

But not every wish, eh..? Only those that they approve of. Of course.

But in an era of rapid medical advancements, what counts as life-threatening is changing. A case in point: the charity has announced that, beginning next year, people with cystic fibrosis, a genetic disease that primarily affects the lungs, will no longer qualify automatically for a wish. The good news is that that is because the illness is, for many people, far less of a threat than it once was.

Good news, indeed! Who could possibly disagree? 

...there are many ways the genetic issue behind CF can manifest, and not all of them respond to the drug. Much of the early research on the illness focused on non-Hispanic white patients, McGarry says, and genetic testing often misses variants in Black, Asian, Hispanic and Ashkenazi Jewish populations.
Now, McGarry said, “we’ve turned it into two different diseases”. Ninety per cent of patients have variants of CF that will respond to the drugs. The other 10% continues to grapple with severe illness.”

Oh. Silly me. I forgot identity politics trumps everything. 

Other treatments, including gene therapy, are being developed that may treat these mutations. But for now, “I think that’s where we’re going to have to work with Make-A-Wish to make sure that they understand about the patients who don’t qualify [for the drugs] – that cystic fibrosis is still a devastating disease for them,” McGarry said.

So little white Jimmy won't get to make a wish, but little black Ayeesha and little brown Malalia will. That won't cause any issues at all, will it? 

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