“The Baby Lottery” Coming Soon to Poor Countries Around the World

Ropi via ZUMA

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I try not to go too far overboard in our communal loathing of pharmaceutical companies, but they sure do make it hard sometimes:

Novartis AG launched a lottery-style program to give away doses of its pricey gene therapy for free, drawing criticism from patient groups that say that is an inappropriate way to distribute a lifesaving treatment aimed at babies.

Zolgensma, a one-shot cure for a deadly inherited disease whose victims cannot control their muscles, is so far sold only in the U.S. at a price of $2.1 million, making it the world’s most expensive drug….Under the program, doctors can submit requests for the treatment, with eligible patients entered into a draw every two weeks for free doses. AveXis, the Novartis unit that makes the drug, said it aimed to distribute around 100 free doses a year as long as production capacity allows.

This is not just sort of like The Hunger Games, it’s pretty much exactly like The Hunger Games. A rich corporation draws names of babies out of a hat, and every two weeks a lucky baby from a poor country gets to live. Then the drudges all go back to work and dream about the next lottery. All that’s missing are the outlandish costumes.

Meanwhile, in the US there’s no lottery. Your baby lives if you or your insurance company is willing to shell out $2.1 million. That’s a lottery too, but not quite such an obvious one.

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WHO DOESN’T LOVE A POSITIVE STORY—OR TWO?

“Great journalism really does make a difference in this world: it can even save kids.”

That’s what a civil rights lawyer wrote to Julia Lurie, the day after her major investigation into a psychiatric hospital chain that uses foster children as “cash cows” published, letting her know he was using her findings that same day in a hearing to keep a child out of one of the facilities we investigated.

That’s awesome. As is the fact that Julia, who spent a full year reporting this challenging story, promptly heard from a Senate committee that will use her work in their own investigation of Universal Health Services. There’s no doubt her revelations will continue to have a big impact in the months and years to come.

Like another story about Mother Jones’ real-world impact.

This one, a multiyear investigation, published in 2021, exposed conditions in sugar work camps in the Dominican Republic owned by Central Romana—the conglomerate behind brands like C&H and Domino, whose product ends up in our Hershey bars and other sweets. A year ago, the Biden administration banned sugar imports from Central Romana. And just recently, we learned of a previously undisclosed investigation from the Department of Homeland Security, looking into working conditions at Central Romana. How big of a deal is this?

“This could be the first time a corporation would be held criminally liable for forced labor in their own supply chains,” according to a retired special agent we talked to.

Wow.

And it is only because Mother Jones is funded primarily by donations from readers that we can mount ambitious, yearlong—or more—investigations like these two stories that are making waves.

About that: It’s unfathomably hard in the news business right now, and we came up about $28,000 short during our recent fall fundraising campaign. We simply have to make that up soon to avoid falling further behind than can be made up for, or needing to somehow trim $1 million from our budget, like happened last year.

If you can, please support the reporting you get from Mother Jones—that exists to make a difference, not a profit—with a donation of any amount today. We need more donations than normal to come in from this specific blurb to help close our funding gap before it gets any bigger.

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