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An Arm and a Leg: John Green vs. Johnson & Johnson (Part 1)

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Dan Weissmann
Wed, 11 Oct 2023 09:00:00 +0000

Why is treating drug-resistant tuberculosis so expensive?

Pharmaceutical giant Johnson & Johnson's patents on a drug called bedaquiline have a lot to do with it.

In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with writer and YouTube star John Green about how he mobilized his massive online community of “nerdfighters” to change the company's policy and help make the drug more accessible.

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But not every lifesaving drug has a champion with a platform as big as Green's. Drug companies' patents limit access to affordable treatments as well.

Weissmann also speaks with drug-patent expert Tahir Amin about how companies keep their drugs under patent for so long and the legal challenges that have been made to these policies around the world.

Dan Weissmann


@danweissmann

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Host and producer of “An Arm and a Leg.” Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.

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Transcript: John Green vs. Johnson & Johnson (Part 1)

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the .

Dan: Hey there — A little while ago, I got to talk with this widely-beloved dude. 

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John Green: My name is John Green, and I'm a writer and YouTuber.

Dan: John Green, writer, may be the most likely to ring a bell. His best-known book, “The Fault in Our Stars,” sold millions of copies and became a movie.

But before he was such a big deal as a writer, he and his brother Hank were a big deal on YouTube. And they still are. We'll get into the details a little bit later.

But for now the thing to know is: Pretty recently, John Green got on the main YouTube channel he and his brother share, and started talking to hundreds of thousands of people about how the drug-maker Johnson & Johnson was using legalistic drug patent to deny access to life saving tuberculosis medicine to millions of people in poor countries. And John Green wanted anybody listening to stand up and do something about it.

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John Green: Tell your friends about this injustice, tell your , tell the internet, because the only reason Johnson Johnson executives think they can get away with this is that they think we aren't paying attention in the part of the world where they sell most of their products, their Band Aids, their Tylenol, their Listerine.

Dan: And a lot of the people who watch John Green's videos– the community calls themselves “nerdfighters” — made a fair amount of noise.

And a few days later, Johnson & Johnson seemed to blink. The company issued a statement saying it would allow a cheaper generic version of that TB drug to be more widely distributed. Here's John's brother Hank from their next YouTube video.

Hank Green: And this happened in a week, John, you made a video on Tuesday, “it's Friday right now! I'm really proud to be a part of this community I'm really proud to be your brother…”

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Dan: I mean, that's a super-fun story that we're gonna get into: How a self-proclaimed nerd raised an internet posse to influence a global pharma giant to do something pretty decent-sounding.

We are definitely going to tell that story.

… But that story is just a first impression, because the whole thing is bigger and way more complicated.

As John Green would tell you –as he told me – he was adding his bit to a global movement — to advocates and lawyers in places like India, for instance, that have been doing the heavy, heavy lifting, for years.

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And, of course, to understand any of this, we are going to have to get into how pharma companies use drug patents. And what it means.

And that is part of where this story comes home.

As John Green mentioned in his video, the story of this tuberculosis drug wouldn't normally draw a lot of attention in the U.S. TB isn't one of our top issues.

But … the mechanisms at play with this tuberculosis drug – the patent games – are some of the same mechanisms that make so many drugs here so expensive: Drugs like Humira, and insulin, and pretty much everything else.

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And here's what's actually the most interesting part:

Behind the first impression version of this story – nerds in the U.S. and their online posse for people in what's called the Global South –

There's a story about people and ideas from the Global South coming here to save the U.S. from our own messed-up drug patent system.

Because they've figured out that unless we save ourselves, they're screwed too. That's a LOT! And it's gonna take us two episodes to connect all the dots. 

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You ready? Here we go…

This is An Arm and a Leg. A show about why health care costs so freaking much, and what we can maybe do about it. I'm Dan Weissmann. I'm a reporter, and I like a . So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life, and to bring you something entertaining, empowering, and useful.

And so, let's start with John Green — YouTuber.

John and his brother Hank were among the people who invented the idea of being a professional quote-unquote “creator” on the internet – maybe kind of by accident, at first. But they were hugely successful at it.

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In 2007, they started posting video messages to each other on this still-kinda-new website called YouTube. They thought a few hundred people might be interested, if they kept it up for a year.

Then Hank posted a song about waiting for the last Harry Potter book to come out.

Hank Green: [Singing] … I'm getting kind of petrified. What would Ron do if Hermione died or if Voldemort killed Hedwig, Just for yucks? …

Dan: It got a million views– which, early YouTube? That was huge. And they were off. Today, that original YouTube channel has more than three and a half million subscribers. Hank now manages more than a hundred full-time employees and a whole bunch of contractors.

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And, you know, it's impossible to sum up the thousands of videos they've shared.

Hank Green: Good morning, John. Today we're gonna be making cinnamon toast two different ways.

John Green: Good morning, Hank, it's Tuesday. So I need your help with the thing I'm working on. I need to learn some jokes, but not just any jokes.

Dan: But it's fair to say digressive, ranty arguments are kind of a staple.

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John Green: Good morning Hank, it's Tuesday. I kind of hate Batman.

Hank Green: Good morning, John, you pretty much got Batman entirely wrong.

John Green: Batman is just a rich guy with an affinity for bats who's playing out his insane fantasy of single-handedly ridding Gotham of crime. How is that heroic?

Hank Green: Of course, I know that Your video on Tuesday wasn't really about Batman, it was just using Batman as a tool to say something.

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Dan: The arguing may have something to do with why they call their community nerd-fighters.

But the idea is more that this is a community of nerds fighting for something. As they put it: fighting to ‘reduce the amount of suck in the world.'

Partly by producing things that can be amusing and sweet and thoughtful – but also by giving money to worthy causes and encouraging others to do the same.

Every year, since the beginning, they have hosted a kind of online telethon called the Project for Awesome.

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John Green: Good morning, Hank. It's Thursday, December 17th, 2009. Time for the Project for Awesome! Hooray! Oh! [crashing sound] Ow! Whoa! I got too about the awesome.

Dan: It is SUPER-interactive: People upload videos pitching their favorite charities, they vote, they give. They've raised more than 30 million dollars. And a lot of it has gone to an organization called Partners in Health, which provides incredibly effective health services in places like Haiti and Sierra Leone.

And just to indulge my own tendency to nerdy digression here: A book about Partners in Health and its founder, Paul Farmer, is one of my favorite books of all time.

It's called Mountains Beyond Mountains, and when we finally do start a book club – and I haven't forgotten making that suggestion here – I want to nominate it as one of our first picks.

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Anyway, the Green brothers are huge supporters of Partners in Health. And then, three years ago, John started one of his weekly videos this way.

John Green: Good morning, Hank, it's Tuesday. So over the next five years, our families are donating six and a half million dollars to Partners in Health Sierra Leone. Also we need your help…

Dan: And here's where we get to tuberculosis. In the run up to that commitment, John Green visited Sierra Leone with his wife Sarah, and met some of the folks there from Partners in Health.

Here's how he told the story to me. I'm not gonna interrupt:

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John Green: On the last day, two of the physicians from Partners in Health, who we were visiting with said, “Hey, if it's not a big deal to you, we'd really like to stop by this TB hospital on the way back to the capitol because we have a case we're really concerned about.” And I said, “Yeah, of course, I'm not going to get in the way of actual doctoring.” So … But I, you know, I didn't think much of it at the time.

So we get to this TB hospital. And immediately upon arriving, the doctors go off to do doctor stuff. And Sarah and I are just sort of sitting there in this little nine year old boy who tells me his name is Henry, which is my son's name, at the time, my son was nine, kind of grabs me by the shirt and starts walking me around. And he takes me to the lab, shows me how to look into the microscope to see if a specimen has tuberculosis, introduces me to the lab technician, he takes me to the patient wards, he takes me to the kitchen where they make the food, he takes me all over the hospital, and then eventually I end up in the room with where the doctors are, and, uh, and the, and the kid has departed and I said, you know, “I just spent 30 minutes with an extraordinary child named Henry and he gave me a tour of the whole facility and I have no idea who he is. Is he somebody's kid? Is he a doctor's kid?” And one of the doctors said, “you know, that's what I thought when I first got here, uh, about Henry because he does seem like that. And actually he's the case that we're so concerned about that we, um, needed to come here.” And he wasn't nine. He was 16. He was just really stunted and emaciated by tuberculosis. 

And, um, even though he was feeling pretty good at the time, the doctors knew that his treatment for multidrug resistant TB was failing, and that he needed access to a new cocktail that included bedaquiline, this drug that's been around in the U.S. since 2013, but was, was at the time totally unavailable in Sierra Leone. And so, that was my introduction to TB and we were on our way to the airport and I said, “what's gonna, what's gonna happen to that kid?” And they were like, “it's going to be a difficult path for him um, if we can't get, if we can't get the new treatment cocktail to him, he has a very low chance of survival.”

So that's the beginning of the story for me, is meeting Henry.

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Dan: I'm going to skip to the end of this part of the story: Henry's OK. He's alive, because he did get the drug cocktail that included Bedaquiline.

But, after that visit, John Green did not know that, and he started obsessing a bit about tuberculosis. Reading about it, thinking about it. And over the last year or so, he started occasionally sharing, making videos about TB. Some of them were fun, short, nerdy explainers.

John Green: What if I told you that tuberculosis gave us the cowboy hat? 

John Green: How did TB reinvigorate women's shoe fashions?

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John Green: How did tuberculosis help New Mexico become a ? I'm so glad you asked.

Dan: But he also dug into the deeper reason he'd become obsessed with TB. Because it's a surprisingly big deal, still.

John Green: It's almost certain that in the last 2, 000 years, more people died just from tuberculosis than died from all wars combined.

And before you think like, oh, but that's ancient history. No, more people died last year from tuberculosis than died in war, and every year going back to World War II

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Dan: We fact checked that. He's actually understating things. By a lot.

TB is a growing problem. In the middle of the 20th Century, new medicines took TB off the list of diseases that most people in the rich parts of the world had to worry about. But it never got wiped out.

And in less-rich parts of the world, where access to the best treatments was spottier, drug-resistant strains of TB developed and developed. But no new drugs came out– no drugs for drug-resistant TB.

Until bedaquiline, produced by Johnson & Johnson. The drug that did eventually help save Henry, the kid that John Green met in Sierra Leone.

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But bedaquiline is expensive. So people in less-rich parts of the world often can't get it. One study estimated that eight out of nine people who needed treatment with a drug like bedaquiline weren't getting it.

And of course medicines stay expensive when they're under patent protection: Once the patent on a drug expires, anybody can make and sell a generic version of the drug. Which, you know, competition, usually allows prices to fall.

And in one way, as John Green started making tuberculosis videos in 2022, it might have seemed like there was hope coming up:

Bedaquiline was patented in 2003. Patents last twenty years. By 2023, that patent would expire.

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Except, not really. Because it turns out, patents on drugs have ways of living for way more than twenty years.

That's next.

MIDROLL: This episode of An Arm and a Leg is produced in partnership with KFF Health News. That's a nonprofit newsroom that covers health care in America. KFF Health News are amazing journalists – their work wins all kinds of every year – and I'm honored to work with them. We'll have a little more information about KFF at the end of this episode.

Dan: So, let's talk about drug patents and how they work– and why they don't just last 20 years. And this is something my colleague Emily Pisacreta has been interested in for a long time.

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Emily: It's true. As I've said before on the show, I'm an insulin-dependent diabetic. If I can't get insulin, I'm literally dead. And, insulin is super expensive. And insulins have became so expensive in part because of the kinds of patents on them – even though those patents are way more than twenty years old! ..

Dan: Right, so you've got a big interest in this question: How can a patent last more than twenty years?

Emily: And Dan, my answer to that question is a riddle: When is a patent not a patent?

Dan: OK, I give up. When is a patent not a patent. 

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Emily: When it's 74 patents.

Dan: Yeah, this riddle is going to need some explaining.

Emily: Right. So, for a while I used an insulin called Lantus.It's a once-a-day, long acting insulin made by the French company Sanofi. Sanofi first patented Lantus in 1994. So, that should mean it's out of patent protection by 2014, right?

Dan: Uh-huh

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Emily: Except, according to a report from a few years back, Sanofi actually filed for 74 patents on Lantus. And a lot of those patents were filed WAY after 1994. So, ONE patent from 1994 would've lasted till 2014. 74 patents could've lasted until 2031.

Dan: Ah, hence the very-specific answer for your riddle. I mean, I knew the principle – these insulin products have multiple patents on them, but 74 is … more than I'd imagined. What are 74 things you even COULD patent?

Emily: I mean, for Lantus, there are patents on formulations to improve stability. Like, all right … But there are also patents on the pen cartridge that Lantus comes in. And inside of that, a whole bunch of patents on the drive mechanisms, like the little plastic piston that lets you pick the right dose. These kinds of things.

Dan: OK. Now, I notice you said, those 74 patents COULD've lasted until 2031?

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Emily: That's right. As it turns out, in the case of Lantus, another drug maker actually did fight some of Sanofi's later patents and won. But more often – and I mean a lot more often — simply filing for a patent is enough to keep generic makers away.

Dan: Sure. Who wants to spend money fighting a patent lawsuit when you could just y'know, manufacture some other drug?

Emily: Right. And of course this is not just insulin.

Tahir Amin: Oh, this is the standard practice. This happens with every drug.

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Emily: That's Tahir Amin – one of the big global experts on drug patents. Tahir the CEO and cofounder of a non-profit called I-MAK, which stands for …

Tahir Amin: The Initiative for Medicines Access and Knowledge. We work on building a more just and equitable access to medicine system.

Emily: The report that documented 74 patents on Lantus, that one insulinI used to use? Tahir's group wrote it. And Tahir says this is business as usual, because it means big money.

Tahir Amin: Particularly when you're talking about some of the drugs that you see in the US market, like for rheumatoid arthritis, these are worth billions of dollars.

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Emily: Tahir's group did a study on the 12 best-selling drugs in the U.S. They had an average of 131 patents each. If all the patents stick, that's an average of 38 years of patent protection.

Dan: So maybe we can update your riddle: 

When is a patent not a patent? 

When it's 131 patents.

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Emily: Yeah, activists and experts call this kind of thing “patent thicketing” or “evergreening.”

Dan: I've been reading up on this too. Drug companies have their own name for this practice. They call it  “life-cycle management.”

Emily: What a term of art. And actually bedaquiline, the TB drug,is a great example. In 2014, Tahir did what they call a “patent landscape” on bedaquiline, mapping all the different patents J&J filed around the world.

Tahir Amin: We all knew that with the advent of multiple drug resistance TB, we needed to know how we're gonna get these drugs to the communities and the countries that need them most.

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Emily: He identified a long list of patents J&J filed. And the most important being the original formula for the drug, set to expire in 2023, and the second most important patent was on something called the salt formulation for the drug.

Dan: Salt formulation.

Emily: Yep, and it's kind of worth getting into the weeds here just for a second. Because this sort of thing is at the absolute heart of these drug patent games. When you develop a drug, the first step is finding a molecule that works in a test tube, that does the thing you want, like kills the germ. That gonna be the first patent, that molecule. But the molecule isn't medicine.

Tahir Amin: You have to develop it, formulate it so that it's actually more bioavailable, that it can get into the bloodstream and, and do whatever biological activity that it does. And this is classic organic chemistry stuff that is routine.

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Emily: It's routine. SO what he's saying here, and other experts agree, by the way, identifying a salt formulation that can work as medicine isn't where the innovation is. And most importantly, it doesn't have to take a long time. But J&J didn't apply for their secondary patent on it until a full four years after their initial patent.

Dan: I've started reading about “lifecycle management,” you know, what the pharma industry calls all this. And this is literally the playbook. One lawyer has advice about when to file this kind of secondary patent, here's what he says, quote:

“You want to do this as late as possible, but before clinical trials. If Company X can hold off filing for two or three years during the drug discovery phase, it will buy more time on the back end of the patent's term.”

Emily: Yep, and J & J waited four years. A little extra.

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Dan: And we asked Johnson & Johnson: Hey, did you put off filing this secondary patent on the salt formulation to stretch out your patent rights? We haven't heard back.

So: TB advocates kind of had their eye on July 2023. Because in July 2023 the original patent that Johnson & Johnson had on bedaquiline was set to expire. And the secondary patent, this sort of basic add on, was to become the next big obstacle.

So, back to John Green. He's learning all this stuff about TB – about how the secondary patent on bedaquiline is gonna keep clamping down access.

And he's making all these TB videos, but it's not like he has some kind of big plan:

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John Green: But the, for me, You know, this is all I was thinking about. It was the first thing I thought about in the morning and the last thing I thought about before I went to sleep, is how did we end up in a world where the world's deadliest infectious disease is largely ignored in the richest parts of the world?

Dan: And he was getting kind of discouraged.

John Green: I felt powerless before it. And this is one of the real lessons for me is that I felt like, well, what … what are we going to do? It's not like Johnson & Johnson is going to abandon the idea of secondary patents, right?

Dan: He knew: secondary patents can be worth billions of dollars.

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John Green: And so they're not going to abandon these attempts to make their patents last longer than they should because they're a for profit company. And I felt really … Yeah, I just felt powerless.

Dan: And then, earlier this year, something changed. It was not something that John Green, or an army of nerds could have done, or could've done anything about.

It was done by India's patent office – responding to a legal challenge brought by two young women who had survived tuberculosis – one from India and one from South Africa.

It was based on legal work that our new pal Tahir Amin and others did in India almost twenty years ago.

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And gave John Green an idea of how an army of nerdfighters could join this battle.

That's next time, on An Arm and a Leg. Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, and Emily Pisacreta – with help from Bella Cjazkowski, and edited by Ellen Weiss.

Daisy Rosario is our consulting managing producer. 

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Adam Raymonda is our audio wizard. 

Our music is by Dave Winer and Blue Dot Sessions.

Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.

Bea Bosco is our consulting director of operations. 

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Sarah Ballema is our operations manager.

An Arm and a Leg is produced in partnership with KFF Health News–formerly known as . That's a national newsroom producing in-depth journalism about health care in America, and a core program at KFF — an independent source of health policy research, polling, and journalism.

And yes, you did hear the name Kaiser in there, and no: KFF isn't affiliated with the health care giant Kaiser Permanente. You can learn more about KFF Health News at armandalegshow.com/KFF.

Zach Dyer is senior audio producer at KFF Health News. He is editorial liaison to this show.

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Thanks to Public Narrative — that's a Chicago-based group that helps journalists and nonprofits tell better stories — for serving as our fiscal sponsor, allowing us to accept tax-exempt donations. You can learn more about Public Narrative at www.publicnarrative.org.

And thanks to everybody who supports this show financially.

If you haven't yet, we'd love for you to join us. The place for that is armandalegshow.com/support. That's armandalegshow.com/support. 

It helps us out a lot, so thanks for pitching in if you can! And thanks for listening!

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“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

To keep in touch with “An Arm and a Leg,” subscribe to the newsletter. You can also follow the show on Facebook and Twitter. And if you've got stories to tell about the health care system, the producers would love to hear from you.

To hear all KFF Health News podcasts, click here.

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——————————
By: Dan Weissmann
Title: An Arm and a Leg: John Green vs. Johnson & Johnson (Part 1)
Sourced From: kffhealthnews.org/news/podcast/john-green-vs-johnson-johnson-part-1/
Published Date: Wed, 11 Oct 2023 09:00:00 +0000

Did you miss our previous article…
https://www.biloxinewsevents.com/thousands-got-exactech-knee-or-hip-replacements-then-patients-say-the-parts-began-to-fail/

Kaiser Health News

California’s $12 Billion Medicaid Makeover Banks on Nonprofits’ Buy-In

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Angela Hart
Thu, 16 May 2024 09:00:00 +0000

TURLOCK, Calif. — For much of his young life, Jorge Sanchez regularly gasped for air, at times coughing so violently that he'd almost throw up. His mother whisked him to the emergency room late at night and slept with him to make sure he didn't stop breathing.

“He's had these problems since he was born, and I couldn't figure out what was triggering his asthma,” Fabiola Sandoval said of her son, Jorge, now 4. “It's so hard when your child is hurting. I was willing to try anything.”

In January, community health workers Sandoval's home in Turlock, a city in California's Central Valley where dust from fruit and nut orchards billows through the air. They scoured Sandoval's home for hazards and explained that harsh cleaning products, air fresheners, and airborne dust and pesticides can trigger an asthma attack.

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The team also provided Sandoval with air purifiers, a special vacuum cleaner that can suck dust out of the air, hypoallergenic mattress covers, and a humidity sensor — goods that retail for hundreds of dollars. Within a few months, Jorge was breathing easier and was able to run and play outside.

The in-home consultation and supplies were paid for by Medi-Cal, California's health insurance program for low-income . Gov. Gavin Newsom is spearheading an ambitious $12 billion experiment to transform Medi-Cal into both a health insurer and a social services provider, one that relies not only on doctors and nurses, but also community health workers and nonprofit groups that offer dozens of services, including delivering healthy meals and helping homeless people pay for housing.

These groups are redefining health care in California as they compete with businesses for a share of the money, and become a new arm of the sprawling Medi-Cal bureaucracy that serves nearly 15 million low-income residents on an annual budget of $158 billion.

But worker shortages, negotiations with health insurance companies, and learning to navigate complex billing and technology systems have hamstrung the community groups' ability to deliver the new services: Now into the third year of the ambitious five-year experiment, only a small fraction of eligible have received benefits.

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“This is still so new, and everyone is just overwhelmed at this point, so it's slow-going,” said Kevin Hamilton, a senior director at the Central California Asthma Collaborative.

The collaborative has served about 3,650 patients, including Sandoval, in eight counties since early 2022, he said. It has years of experience with Medi-Cal patients in the Central Valley and has received about $1.5 million of the new initiative's money.

By contrast, CalOptima Health, Orange County's primary Medi-Cal insurer, is new to offering asthma benefits and has signed up 58 patients so far.

“Asthma services are so difficult to get going” because the nonprofit infrastructure for these services is virtually nonexistent, said Bruno-Nelson, CalOptima's executive director for Medi-Cal. “We need more community-based on board because they're the ones who can serve a population that nobody wants to deal with.”

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Newsom, a Democrat in his second term, says his signature health care initiative, known as CalAIM, seeks to reduce the cost of caring for the state's sickest and most vulnerable patients, including homeless Californians, foster , former inmates, and people battling addiction disorders.

In addition to in-home asthma remediation, CalAIM offers 13 broad categories of social services, plus a benefit connecting eligible patients with one-on-one care managers to help them obtain anything they need to get healthier, from grocery shopping to finding a job.

The 25 managed-care insurance companies participating in Medi-Cal can choose which services they offer, and contract with community groups to provide them. Insurers have hammered out about 4,300 large and small contracts with nonprofits and businesses.

So far, about 103,000 Medi-Cal patients have received CalAIM services and roughly 160,000 have been assigned personal care managers, according to state data, a sliver of the hundreds of thousands of patients who likely qualify.

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“We're all new to health care, and a lot of this is such a foreign concept,” said Helena Lopez, executive director of A Greater Hope, a nonprofit organization providing social services in Riverside and San Bernardino counties, such as handing out cleats to children to help them be active.

Tiffany Sickler runs Koinonia Family Services, which offers California foster children mental health and other types of care, and even helped a patient pay off parking tickets. But the program is struggling on a shoestring budget.

“If you want to do this, you have to learn all these new systems. It's been a huge learning curve, and very time-consuming and frustrating, especially without adequate funding,” she said.

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Brandon Richards, a Newsom spokesperson, defended CalAIM, saying that it was “on the cutting edge of health care” and that the state was working to increase “awareness of these new services and support.”

For nonprofits and businesses, CalAIM is a money-making opportunity — one that top state health officials hope to make permanent. Health insurers, which receive hefty payments from the state to serve more people and offer new services, share a portion with service providers.

In some places, community groups are competing with national corporations for the new funding, such as Mom's Meals, an Iowa-based company that delivers prepared meals across the United States.

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Mom's Meals has an advantage over neighborhood nonprofit groups because it has long served seniors on Medicare and was able to immediately start offering the CalAIM benefit of home-delivered meals for patients with chronic diseases. But even Mom's Meals isn't reaching everyone who qualifies, because doctors and patients don't always know it's an option, said Catherine Macpherson, the company's chief nutrition officer.

“Utilization is not as high as it should be yet,” she said. “But we were well positioned, because we already had departments to do billing and contracting with health care.”

Middleman companies also have their eye on the billions of CalAIM dollars and are popping up to assist small organizations to go up against established ones like Mom's Meals. For instance, the New York-based Nonprofit Finance Fund is advising homeless service providers how to get more contracts and expand benefits.

Full Circle Health Network, with 70 member organizations, is helping smaller nonprofit groups develop and deliver services primarily for families and foster children. Full Circle has signed a deal with Kaiser Permanente, allowing the health care giant to access its network of community groups.

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“We're allowing organizations to launch these benefits much faster than they've been able to do and to reach more vulnerable people,” said Camille Schraeder, chief executive of Full Circle. “Many of these are grassroots organizations that have the trust and expertise on the ground, but they're new to health care.”

One of the biggest challenges community groups face is hiring workers, who are key to finding eligible patients and persuading them to participate.

Kathryn Phillips, a workforce expert at the California Health Care Foundation, said there isn't enough seed money for community groups to hire workers and pay for new technology platforms. “They bring the trust that is needed, the cultural competency, the diversity of languages,” she said. “But there needs to be more funding and reimbursement to build this workforce.”

Health insurers say they are trying to increase the workforce. For instance, L.A. Care Health Plan, the largest Medi-Cal insurer in California, has given $66 million to community organizations for hiring and other CalAIM needs, said Sameer Amin, the group's chief medical officer.

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“They don't have the staffing to do all this stuff, so we're helping with that all while teaching them how to build up their health care infrastructure,” he said. “Everyone wants a win, but this isn't going to be successful overnight.”

In the Central Valley, Jorge Sanchez is one of the lucky early beneficiaries of CalAIM.

His mother credits the trust she established with community health workers, who spent many hours over multiple visits to teach her how to control her son's asthma.

“I used to love cleaning with bleach” but learned it can trigger breathing problems, Sandoval said.

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Since she implemented the health workers' recommendations, Sandoval has been able to let Jorge sleep alone at night for the first time in four years.

“Having this program and all the things available is amazing,” said Sandoval, as she pointed to the dirty dust cup in her new vacuum cleaner. “Now my son doesn't have as many asthma attacks and he can run around and be a normal kid.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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By: Angela Hart
Title: California's $12 Billion Medicaid Makeover on Nonprofits' Buy-In
Sourced From: kffhealthnews.org//article/newsom-medicaid-12-billion-dollar-makeover-nonprofits-bureacracy-calaim/
Published Date: Thu, 16 May 2024 09:00:00 +0000

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Federal Panel Prescribes New Mental Health Strategy To Curb Maternal Deaths

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Cheryl Platzman Weinstock
Thu, 16 May 2024 09:00:00 +0000

For help, call or text the National Maternal Mental Health Hotline at 1-833-TLC-MAMA (1-833-852-6262) or contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.” Spanish-language services are also available.

BRIDGEPORT, Conn. — Milagros Aquino was trying to find a new place to and had been struggling to get used to new foods after she moved to Bridgeport from Peru with her husband and young son in 2023.

When Aquino, now 31, got pregnant in May 2023, “instantly everything got so much worse than before,” she said. “I was so sad and lying in bed all day. I was really lost and just surviving.”

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Aquino has lots of company.

Perinatal depression affects as many as 20% of women in the United States during pregnancy, the postpartum period, or both, according to studies. In some states, anxiety or depression afflicts nearly a quarter of new mothers or pregnant women.

Many women in the U.S. go untreated because there is no widely deployed system to screen for mental illness in mothers, despite widespread recommendations to do so. Experts say the lack of screening has driven higher rates of mental illness, suicide, and drug overdoses that are now the leading causes of death in the first year after a woman gives birth.

“This is a systemic issue, a medical issue, and a human rights issue,” said Lindsay R. Standeven, a perinatal psychiatrist and the clinical and education director of the Johns Hopkins Reproductive Mental Health Center.

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Standeven said the root causes of the problem include racial and socioeconomic disparities in maternal care and a lack of support for new mothers. She also pointed a finger at a shortage of mental health professionals, insufficient maternal mental health training for providers, and insufficient reimbursement for mental health services. Finally, Standeven said, the problem is exacerbated by the absence of national maternity policies, and the access to weapons.

Those factors helped drive a 105% increase in postpartum depression from 2010 to 2021, according to the American Journal of Obstetrics & Gynecology.

For Aquino, it wasn't until the last weeks of her pregnancy, when she signed up for acupuncture to relieve her stress, that a social worker helped her get care through the Emme Coalition, which connects girls and women with financial help, mental health counseling services, and other resources.

Mothers diagnosed with perinatal depression or anxiety during or after pregnancy are at about three times the risk of suicidal behavior and six times the risk of suicide with mothers without a mood disorder, according to recent U.S. and international studies in JAMA Network Open and The BMJ.

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The toll of the maternal mental health crisis is particularly acute in rural communities that have become maternity care deserts, as small hospitals close their labor and delivery units because of plummeting birth rates, or because of financial or staffing issues.

This week, the Maternal Mental Health Task Force — co-led by the Office on Women's Health and the Substance Abuse and Mental Health Services Administration and formed in September to respond to the problem — recommended creating maternity care centers that could serve as hubs of integrated care and birthing facilities by building upon the services and personnel already in communities.

The task force will soon determine what portions of the plan will require congressional action and to implement and what will be “low-hanging fruit,” said Joy Burkhard, a member of the task force and the executive director of the nonprofit Policy Center for Maternal Mental Health.

Burkhard said equitable access to care is essential. The task force recommended that federal officials identify areas where maternity centers should be placed based on data identifying the underserved. “Rural America,” she said, “is first and foremost.”

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There are shortages of care in “unlikely areas,” including Los Angeles County, where some maternity wards have recently closed, said Burkhard. Urban areas that are underserved would also be eligible to get the new centers.

“All that mothers are asking for is maternity care that makes sense. Right now, none of that exists,” she said.

Several pilot programs are designed to help struggling mothers by training and equipping midwives and doulas, people who provide guidance and support to the mothers of newborns.

In Montana, rates of maternal depression before, during, and after pregnancy are higher than the national average. From 2017 to 2020, approximately 15% of mothers experienced postpartum depression and 27% experienced perinatal depression, according to the Montana Pregnancy Risk Assessment Monitoring System. The state had the sixth-highest maternal mortality rate in the country in 2019, when it received a federal grant to begin training doulas.

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To date, the program has trained 108 doulas, many of whom are Native American. Native Americans make up 6.6% of Montana's population. Indigenous people, particularly those in rural areas, have twice the national rate of severe maternal morbidity and mortality compared with white women, according to a study in Obstetrics and Gynecology.

Stephanie Fitch, grant manager at Montana Obstetrics & Maternal Support at Billings Clinic, said training doulas “has the potential to counter systemic barriers that disproportionately impact our tribal communities and improve overall community health.”

Twelve states and Washington, D.C., have Medicaid coverage for doula care, according to the National Health Program. They are California, Florida, Maryland, Massachusetts, Michigan, Minnesota, Nevada, New Jersey, Oklahoma, Oregon, Rhode Island, and Virginia. Medicaid pays for about 41% of births in the U.S., according to the Centers for Disease Control and Prevention.

Jacqueline Carrizo, a doula assigned to Aquino through the Emme Coalition, played an important role in Aquino's recovery. Aquino said she couldn't have imagined going through such a “dark time alone.” With Carrizo's support, “I could make it,” she said.

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Genetic and environmental factors, or a past mental health disorder, can increase the risk of depression or anxiety during pregnancy. But mood disorders can happen to anyone.

Teresa Martinez, 30, of Price, Utah, had struggled with anxiety and infertility for years before she conceived her first child. The joy and relief of giving birth to her son in 2012 were short-lived.

Without warning, “a dark cloud came over me,” she said.

Martinez was afraid to tell her husband. “As a woman, you feel so much pressure and you don't want that stigma of not being a good mom,” she said.

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In recent years, programs around the country have started to help doctors recognize mothers' mood disorders and learn how to help them before any harm is done.

One of the most successful is the Massachusetts Child Psychiatry Access Program for Moms, which began a decade ago and has since spread to 29 states. The program, supported by federal and state funding, provides tools and training for physicians and other providers to screen and identify disorders, triage patients, and offer treatment options.

But the expansion of maternal mental health programs is taking place amid sparse resources in much of rural America. Many programs across the country have out of money.

The federal task force proposed that Congress fund and create consultation programs similar to the one in Massachusetts, but not to replace the ones already in place, said Burkhard.

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In April, Missouri became the latest state to adopt the Massachusetts model. Women on Medicaid in Missouri are 10 times as likely to die within one year of pregnancy as those with private insurance. From 2018 through 2020, an average of 70 Missouri women died each year while pregnant or within one year of giving birth, according to state government statistics.

Wendy Ell, executive director of the Maternal Health Access in Missouri, called her service a “lifesaving resource” that is free and easy to access for any provider in the state who sees patients in the perinatal period.

About 50 health care providers have signed up for Ell's program since it began. Within 30 minutes of a request, the providers can consult over the phone with one of three perinatal psychiatrists. But while the doctors can get help from the psychiatrists, mental health resources for patients are not as readily available.

The task force called for federal funding to train more mental health providers and place them in high-need areas like Missouri. The task force also recommended training and certifying a more diverse workforce of community mental health workers, patient navigators, doulas, and peer support specialists in areas where they are most needed.

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A new voluntary curriculum in reproductive psychiatry is designed to help psychiatry residents, fellows, and mental health practitioners who may have little or no training or education about the management of psychiatric illness in the perinatal period. A small study found that the curriculum significantly improved psychiatrists' ability to treat perinatal women with mental illness, said Standeven, who contributed to the training program and is one of the study's authors.

Nancy Byatt, a perinatal psychiatrist at the University of Massachusetts Chan School of Medicine who led the launch of the Massachusetts Child Psychiatry Access Program for Moms in 2014, said there is still a lot of work to do.

“I think that the most important thing is that we have made a lot of progress and, in that sense, I am kind of hopeful,” Byatt said.

Cheryl Platzman Weinstock's is supported by a grant from the National Institute for Health Care Management Foundation.

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By: Cheryl Platzman Weinstock
Title: Federal Panel Prescribes New Mental Health Strategy To Curb Maternal Deaths
Sourced From: kffhealthnews.org/news/article/postpartum-mental-health-federal-strategy-maternal-deaths/
Published Date: Thu, 16 May 2024 09:00:00 +0000

Did you miss our previous article…
https://www.biloxinewsevents.com/medics-at-ucla-protest-say-police-weapons-drew-blood-and-cracked-bones/

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Kaiser Health News

Medics at UCLA Protest Say Police Weapons Drew Blood and Cracked Bones

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Molly Castle Work and Brett Kelman
Thu, 16 May 2024 09:00:00 +0000

Inside the protesters' encampment at UCLA, beneath the glow of hanging flashlights and a deafening backdrop of exploding flash-bangs, OB-GYN resident Elaine Chan suddenly felt like a battlefield medic.


related coverage from 2020

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Less-Lethal Weapons Blind, Maim and Kill. Victims Say Enough Is Enough.

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were pushing into the camp after an hours-long standoff. Chan, 31, a medical tent volunteer, said protesters limped in with severe puncture wounds, but there was little hope of getting them to a hospital through the chaos outside. Chan suspects the injuries were caused by rubber bullets or other “less lethal” projectiles, which police have confirmed were fired at protesters.

“It would pierce through skin and gouge deep into people's bodies,” she said. “All of them were profusely bleeding. In OB-GYN we don't treat rubber bullets. … I couldn't believe that this was allowed to be [done to] civilians — — without protective gear.”

The UCLA protest, which gathered thousands in opposition to Israel's ongoing bombing of Gaza, began in April and grew to a dangerous crescendo this month when counterprotesters and police clashed with the activists and their supporters.

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In interviews with KFF News, Chan and three other volunteer medics described treating protesters with bleeding wounds, head injuries, and suspected broken bones in a makeshift clinic cobbled together in tents with no electricity or running . The medical tents were staffed day and night by a rotating team of doctors, nurses, medical students, EMTs, and volunteers with no formal medical training.

At times, the escalating violence outside the tent isolated injured protesters from access to ambulances, the medics said, so the wounded walked to a nearby hospital or were carried beyond the borders of the protest so they could be driven to the emergency room.

“I've never been in a setting where we're blocked from getting higher level of care,” Chan said. “That was terrifying to me.”

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Three of the medics interviewed by KFF Health News said they were present when police swept the encampment May 2 and described multiple injuries that appeared to have been caused by “less lethal” projectiles.

Less lethal projectiles — including beanbags filled with metal pellets, sponge-tipped rounds, and projectiles commonly known as rubber bullets — are used by police to subdue suspects or disperse crowds or protests. Police drew widespread condemnation for using the weapons against Black Lives Matter demonstrations that swept the country after the killing of George Floyd in 2020. Although the name of these weapons downplays their danger, less lethal projectiles can travel upward of 200 mph and have a documented potential to injure, maim, or kill.

The medics' interviews directly contradict an account from the Los Angeles Police Department. After police cleared the encampment, LAPD Chief Dominic Choi said in a post on the social platform X that there were “no serious injuries to or protestors” as police moved in and made more than 200 arrests.

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In response to questions from KFF Health News, both the LAPD and California Highway Patrol said in emailed statements that they would investigate how their officers responded to the protest. The LAPD statement said the agency was conducting a of how it and other law enforcement agencies responded, which would lead to a “detailed .”

The Highway Patrol statement said officers warned the encampment that “non-lethal rounds” may be used if protesters did not disperse, and after some became an “immediate threat” by “launching objects and weapons,” some officers used “kinetic specialty rounds to protect themselves, other officers, and members of the public.” One officer received minor injuries, according to the statement.

footage that circulated online after the protest appeared to show a Highway Patrol officer firing less lethal projectiles at protesters with a shotgun.

“The use of force and any incident involving the use of a weapon by CHP personnel is a serious matter, and the CHP will conduct a fair and impartial investigation to ensure that actions were consistent with policy and the law,” the Highway Patrol said in its statement.

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The UCLA Police Department, which was also involved with the protest response, did not respond to requests for comment.

Jack Fukushima, 28, a UCLA medical student and volunteer medic, said he witnessed a police officer shoot at least two protesters with less lethal projectiles, including a man who collapsed after being hit “square in the chest.” Fukushima said he and other medics escorted the stunned man to the medical tent then returned to the front lines to look for more injured.

“It did really feel like a war,” Fukushima said. “To be met with such police brutality was so disheartening.”

Back on the front line, police had breached the borders of the encampment and begun to scrum with protesters, Fukushima said. He said he saw the same officer who had fired earlier shoot another protester in the neck.

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The protester dropped to the ground. Fukushima assumed the worst and rushed to his side.

“I find him, and I'm like, ‘Hey, are you OK?'” Fukushima said. “To the point of courage of these undergrads, he's like, ‘Yeah, it's not my first time.' And then just jumps right back in.”

Sonia Raghuram, 27, another medical student stationed in the tent, said that during the police sweep she tended to a protester with an open puncture wound on their back, another with a quarter-sized contusion in the center of their chest, and a third with a “gushing” cut over their right eye and possible broken rib. Raghuram said patients told her the wounds were caused by police projectiles, which she said matched the severity of their injuries.

The patients made it clear the police officers were closing in on the medical tent, Raghuram said, but she stayed put.

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“We will never a patient,” she said, describing the mantra in the medical tent. “I don't care if we get arrested. If I'm taking care of a patient, that's the thing that comes first.”

The UCLA protest is one of many that have been held on college campuses across the country as students opposed to Israel's ongoing war in Gaza demand universities support a ceasefire or divest from companies tied to Israel. Police have used force to remove protesters at Columbia University, Emory University, and the universities of Arizona, Utah, and South Florida, among others.

At UCLA, student protesters set up a tent encampment on April 25 in a grassy plaza outside the campus's Royce Hall theater, eventually drawing thousands of supporters, according to the Los Angeles Times. Days later, a “violent mob” of counterprotesters “attacked the camp,” the Times reported, attempting to tear down barricades along its borders and throwing fireworks at the tents inside.

The night, police issued an unlawful assembly order, then swept the encampment in the early hours of May 2, clearing tents and arresting hundreds by dawn.

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Police have been widely criticized for not intervening as the clash between protesters and counterprotesters dragged on for hours. The University of California system announced it has hired an independent policing consultant to investigate the violence and “resolve unanswered questions about UCLA's planning and protocols, as well as the mutual aid response.”

Charlotte Austin, 34, a surgery resident, said that as counterprotesters were attacking she also saw about 10 private campus security officers stand by, “hands in their pockets,” as students were bashed and bloodied.

Austin said she treated patients with cuts to the face and possible skull fractures. The medical tent sent at least 20 people to the hospital that evening, she said.

“Any medical professional would describe these as serious injuries,” Austin said. “There were people who required hospitalization — not just a visit to the emergency room — but actual hospitalization.”

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Police Tactics ‘Lawful but Awful'

UCLA protesters are far from the first to be injured by less lethal projectiles.

In recent years, police across the U.S. have repeatedly fired these weapons at protesters, with virtually no overarching standards governing their use or safety. Cities have spent millions to settle lawsuits from the injured. Some of the wounded have never been the same.

During the nationwide protests following the police killing of George Floyd in 2020, at least 60 protesters sustained serious injuries — including blinding and a broken jaw — from being shot with these projectiles, sometimes in apparent violations of police department policies, according to a joint investigation by KFF Health News and USA Today.

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In 2004, in Boston, a college student celebrating a Red Sox victory was killed by a projectile filled with pepper-based irritant when it tore through her eye and into her brain.

“They're called less lethal for a reason,” said Jim Bueermann, a former police chief of Redlands, California, who now leads the Future Policing Institute. “They can kill you.”

Bueermann, who reviewed video footage of the police response at UCLA at the request of KFF Health News, said the footage shows California Highway Patrol officers firing beanbag rounds from a shotgun. Bueermann said the footage did not provide enough context to determine if the projectiles were being used “reasonably,” which is a standard established by federal courts, or being fired “indiscriminately,” which was outlawed by a California law in 2021.

“There is a saying in policing — ‘lawful but awful' — meaning that it was reasonable under the legal standards but it looks terrible,” Bueermann said. “And I think a cop racking multiple rounds into a shotgun, firing into protesters, doesn't look very good.”

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This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

——————————
By: Molly Castle Work and Brett Kelman
Title: Medics at UCLA Protest Say Police Weapons Drew Blood and Cracked Bones
Sourced From: kffhealthnews.org/news/article/ucla-protest-gaza-israel-rubber-bullets-injuries-volunteer-medics/
Published Date: Thu, 16 May 2024 09:00:00 +0000

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