🎧 The Too-Good-To-Be-True Cancer Cure | On the Media | WNYC Studios

Listened to The Too-Good-To-Be-True Cancer Cure from On the Media | WNYC Studios

Despite steadily declining rates of cancer deaths over the past two decades, cancer remains responsible for 1 in every 6 deaths worldwide. It’s a scourge. So when, this week, an Israeli company called Accelerated Evolution Biotechnologies captured the news cycle with promises of a complete cure for cancer within the year, the story caught fire.

The company’s technology is called “MuTaTo” — that's multi-target toxin. And, to judge from the news media this week, it seems vetted, verified and veering us all toward a cancer-free future. Reports began in the Jerusalem Post, but quickly took off, making their way into various Murdoch-owned publications like FOX and the New York Post and landing in local news outlets around the country and the globe.

A couple days into the fanfare, the skeptics started coming out: for one thing, as oncologist David Gorski points out in his blog “Respectful Insolence,” the claims are based on experiments with mice: no human trials have yet started. For another, they haven’t been sufficiently peer reviewed. In fact, the company won’t share its research, claiming it can’t afford the expense. The too-good-to-be-true story appears to be just that, built on PR puffery. But who can resist a good cancer cure?

With Mutato in mind, for this week’s podcast extra, we revisit our Breaking News Consumer’s Handbook: Health News edition, with Gary Schwitzer, publisher & founder of HealthNewsReview.org.

This is a fantastic piece of reporting relating to improved journalism and media consumption with respect to the frequent health studies seen in the main stream media. For those interested, here’s a link to the original version from 2015.

Watched For Patients, by Patients: Pioneering a New Approach in Med-Tech Design by  Innovate Pasadena: Friday Coffee Meetup Innovate Pasadena: Friday Coffee Meetup from YouTube

I was ten years into a career as a user experience designer making new digital products when diabetes blew my family's life apart. The complexity and relentlessness of the burden of care that came with my youngest daughter's diagnosis at 1.5 years old, were overwhelming. I learned that people with diabetes are always 10 minutes of inattention away from a coma. Run your blood sugar too low and risk brain injury or death. Run too high and you do cumulative damage to your organs, nerves and eyes. And as a designer and hardware hacker I couldn't accept the limitations and poor User Experience I was seeing in all the tools we were given to deal with it.

Then I discovered Nightscout (a way to monitor my daughter's blood sugar in real time from anywhere in the world) and Loop (a DIY open sourced, artificial pancreas system that checks blood sugar and adjusts insulin dosing every five minutes 24/7) and the community that produced them. For the first time I saw the kinds of tools I needed and true power of solutions that come from the people living with the problem. When I learned about the Tidepool's project to take Loop through FDA approval and bring it to anyone who wants to use it to give the same freedom and relief that we've experienced from it, I had to get involved. Now we are taking an open source software through regulatory approval and using real-life user data from the DIY community for our clinical trial in a process that is turning heads in the industry. We'll get into the many ways this story demonstrates ways that user driven design, open source models and a counterculturally collaborative approach with regulators are shifting the incentives and changing the landscape toward one more favorable to innovation.

Here’s the video I mentioned yesterday. Those deeply enmeshed in the IndieWeb movement and many of its subtleties will get a ringing sense of déjà vu as they watch it and realize there’s a lot of overlap with how (and why) Matt Lumpkin is working to help those with type 1 diabetes and the IndieWeb. Perhaps there are some lessons to be learned here?

There was an eerie and surprisingly large overlap of a lot of what Matt Lumpkin said in his talk this morning and the IndieWeb movement. If you just change the disease from Type 1 Diabetes to Social Media, there are a tremendous number of similarities between the two approaches of problems to be solved in terms of giving people agency, ownership of their data, the silo nature of the big corporations in the space, and the lack of solid inter-operability and standards.

I can’t wait for Chuck Chugumulung and the gang to get the video for this week up on YouTube so I can share it with colleagues.

Based on what I’ve heard, it might not be a completely terrible thing to class what the IndieWeb is working on fixing as a broad public health issue–but in its case a mental health one instead of a pancreas and diet related one.

Matt Lumpkin on stage pointing at a slide on the screen stating "Restoring one's own agency is the most critical task for people working to negotiate a healthy relationship with a chronic disease."
Matt Lumpkin during his talk “For Patients, by Patients: Pioneering a New Approach in Med-Tech Design“.
Matt Lumpkin on stage with a slide displaying the text "Do the people who use the things you make feel their power returned to them?"
Another IndieWeb sentiment in a presentation on UX/UI for improving health of people dealing with type 1 diabetes.

📑 YouTube Executives Ignored Warnings, Letting Toxic Videos Run Rampant

Annotated YouTube Executives Ignored Warnings, Letting Toxic Videos Run Rampant by Mark Bergen (Bloomberg)
A 2015 clip about vaccination from iHealthTube.com, a “natural health” YouTube channel, is one of the videos that now sports a small gray box.  

Does this box appear on the video itself? Apparently not…

Examples:

But nothing on the embedded versions:

A screengrab of what this looks like for those that don’t want to be “infected” by the algorithmic act of visiting these YouTube pages:
YouTube video on vaccinations with a gray block below it giving a link to some factual information on Wikipedia

👓 The Death of an Adjunct | The Atlantic

Read The Death of an Adjunct (The Atlantic)
Thea Hunter was a promising, brilliant scholar. And then she got trapped in academia’s permanent underclass.

👓 ‘It will take off like a wildfire’: The unique dangers of the Washington state measles outbreak | Washington Post

Read ‘It will take off like a wildfire’: The unique dangers of the Washington state measles outbreak (Washington Post)

VANCOUVER, Wash. — Amber Gorrow is afraid to leave her house with her infant son because she lives at the epicenter of Washington state’s worst measles outbreak in more than two decades. Born eight weeks ago, Leon is too young to get his first measles shot, putting him at risk for the highly contagious respiratory virus, which can be fatal in small children.

📑 Read Write Respond #037 | Read Write Collect | Aaron Davis

Annotated Read Write Respond #037 by Aaron DavisAaron Davis (Read Write Collect)
This a harrowing story made even sadder by the grim reality of the statistics.  

I’m almost losing count of how many racial health disparity stories I’ve been seeing lately. It’s so common I’ve got tags for it on my site now.

👓 I Was Pregnant and in Crisis. All the Doctors and Nurses Saw Was an Incompetent Black Woman | Time

👓 Stress From Racism May Be Causing African-American Babies To Die More Often | NPR

Read How Racism May Cause Black Mothers To Suffer The Death Of Their Infants (NPR.org)
African-American women are more likely to lose a baby in the first year of life than women of any other race. Scientists think that stress from racism makes their bodies and babies more vulnerable.

👓 Zuckerberg San Francisco General’s aggressive tactics leave patients with big bills | Vox

Read A $20,243 bike crash: Zuckerberg hospital’s aggressive tactics leave patients with big bills by Sarah Kliff (Vox)
I spent a year writing about ER bills. Zuckerberg San Francisco General has the most surprising billing practices I’ve seen.

🎧 Before the Flood:The Mesopotamian Enuma Elish and Atrahasis | The Literature and History Podcast

Listened to Before the Flood:The Mesopotamian Enuma Elish and Atrahasis by Doug Metzger, Ph.D. from The Literature and History Podcast

BCE 1700-1500
The Enuma Elish and the Atrahasis, in circulation 3,800 years ago, were Mesopotamia's creation and flood epics, making them 1,000 years older than Genesis.

There are a few sections of these ancient texts which indicate that thousands (or more) were wiped out due to illness and disease that sound like a flu, a virus, or some other local pandemic. Gives pause to think about what the state of public health was at the time.

Enuma Elish and Atrahasis are indeed not well known, but I’ve actually seen quite a bit about them as the result of reading within the area of Big History.

I’ll have to do some digging but I’m curious if any researcher(s) have done synoptic analyses of these books and the Book of Genesis from the Old Testament. I’m sure there aren’t as many as there are of the synoptic gospels from the New Testament, but it might be interesting to take a look at them.

The obvious quote of the day:

The gods became distraught at the destruction they had unleashed. The midwife goddess, Mami, who helped raise the first generations of mankind, was particularly saddened, and “The gods joined her in weeping for the vanished country / She was overcome with heartache, but could find no beer”. Yes, it really says that.

As a side note, fermented beverages like beer were more popular throughout history than they are in modern America, because unlike now, prior generations of humans didn’t have the public health ideals or levels of clean drinking water that we do today. Thus beer and other alcoholic drinks were more par for the course because they were less likely to make you sick or kill you to drink them. Naturally the Mesopotamian gods must have been healthier for drinking them as a result too!

👓 Progress on eradicating polio has stalled – Infectious disease | The Economist

Read Progress on eradicating polio has stalled (The Economist)
Cases caused by viruses derived from the vaccine are a growing worry

👓 Your Vagina Is Terrific (and Everyone Else’s Opinions Still Are Not) | New York Times

Read Your Vagina Is Terrific (and Everyone Else’s Opinions Still Are Not) (New York Times)
One year ago I wrote about my vagina and men’s opinions of it. Things have not improved.

👓 Why suicide is falling around the world, and how to bring it down more | The Economist

Read Why suicide is falling around the world, and how to bring it down more (The Economist)
Urbanisation, fewer forced marriages and more curbs on the means of self-destruction