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Doctors tried to lower $148K cancer drug cost; makers triple price of pill

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A drug that treats a variety of white blood cell cancers typically costs about $148,000 a year, and doctors can customize and quickly adjust doses by adjusting how many small-dose pills of it patients should take each day—generally up to four pills. At least, that was the case until now.

Last year, doctors presented results from a small pilot trial hinting that smaller doses could work just as well as the larger dose—dropping patients down from three pills a day to just one. Taking just one pill a day could dramatically reduce costs to around $50,000 a year. And it could lessen unpleasant side-effects, such as diarrhea, muscle and bone pain, and tiredness. But just as doctors were gearing up for more trials on the lower dosages, the makers of the drug revealed plans that torpedoed the doctors’ efforts: they were tripling the price of the drug and changing pill dosages.

The drug, ibrutinib (brand name Imbruvica), typically came in 140mg capsules, of which patients took doses from 140mg per day to 560mg per day depending on their cancer and individual medical situation. (There were also 70mg capsules for patients taking certain treatment combinations or having liver complications.) The pills treat a variety of cancers involving a type of white blood cell called B cells. The cancers include mantle cell lymphoma, which was approved for treatment with four 140mg pills per day, and chronic lymphocytic leukemia, approved to be treated with three 140mg pills per day. Each 140mg pill costs somewhere around $133—for now.

Imbruvica’s makers, Janssen and Pharmacyclics, have now gotten approval to sell four different tablets of varying strengths: 140mg, 280mg, 420mg, and 560mg. But the new pills will all be the same price—around $400 each—even the 140mg dose pill. The makers will stop selling the old, cheaper 140mg pill within three months, according to a report by the Washington Post.

The plan nixes any chance to lower costs with lower dosages. Even if patients can drop down to just 140mg a day, they’ll pay three times what they pay now for each 140mg pill.

In a statement to the Post, Janssen and Pharmacyclics explained the move by saying the new line-up is “a new innovation to provide patients with a convenient one pill, once-a-day dosing regimen and improved packaging, with the intent to improve adherence to this important therapy.” They noted that those taking 560mg a day will save money with the new pricing.

But doctors balked at what they saw as an underhanded move. In an interview with the Post, oncologist Mark Ratain of the University of Chicago Medicine put things bluntly: “That got us kind of pissed off.”

Ratain and colleagues wrote a commentary in the weekly newsletter Cancer Letters this month, decrying the price hike and new pill series, calling it “highly unusual.” In addition to thwarting efforts to help lower treatment costs, the doctors pointed out that the new dosage lineup will make it harder to nimbly adjust patients’ doses by simply advising them to take different numbers of pills each day. Switching a patient from a 280mg or 420mg per day dose down to 140mg will require paperwork, filling a new prescription, and having patients return unused pills—a process that can drag out for weeks. And increasing a patient’s dose would either be just as lengthy of a process or risk multiplying their treatment costs even further by doubling or tripling the pills each day.

In their commentary, titled in part “Sales Revenues at the Potential Expense of Patient Safety,” the doctors lay out examples of when quick dosage changes would be necessary. Those include when a patient needs to drop down while they’re on a short course of antibiotics or to adjust for new combination-cancer treatments. “Any putative convenience advantage of taking one pill a day is negated by the marked inconvenience to the patient of having to return pills every time there is a need for a dosage change,” they write.

Ratain and colleagues end with a call to the Food and Drug Administration to look into the matter, “given that it creates a barrier to optimal prescribing for some patients,” they write. “We further urge the FDA to recognize that the combination of the high price per pill and the flat pricing scheme are specific impediments to safe administration, and that ignoring the marketing approach for ibrutinib is antithetical to fostering optimally safe dosing and administration.”

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1 day ago
as someone who may be looking at needing ibrutinib, fuck every single thing about this. recover your R&D costs, sure, but don't price the damned drug out of reach of patients.
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6 hours ago
This coming after the Goldman Sachs guy asking if curing disease was a viable business model it is clear the Free Market and Capitalism does NOT value people's lives. I get that you're in business to make a profit. But, you're in HEALTHCARE to care for people and sometimes that means you have to take a loss to HELP people.

My gut reaction to this would be a bill that would criminally punish CEOs and companies that raise drug prices.
1 day ago
And thus endeth any future research into probing the lower end of the therapeutic range of drugs still under patent protection. There's just no longer any incentive to improve patient outcomes by reducing price any more.
New York, NY

Intentional Cognitive Friction

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The sweetness and delights of the resting-place are in proportion to the pain endured on the Journey. Only when you suffer the pangs and tribulations of exile will you truly enjoy your homecoming. (The Mathnawi of Jalaluddin Rumi – Book 3)

John Johnston started to talk about ‘clunky-ness’ in technology as a way into digital mindfulness. Recently, on our radio show, we discussed the idea of friction in technology as potentially a way to develop digital skills that may be being lost in the ‘Generator Generation’ as they rely more and more on technology ‘creating’ for them.

I have also been following D’Arcy Norman’s quest to find space away from social media. He seems  to also have discovered the value of ‘clunky-ness’ and the tyranny of convenience.  He also speaks of adding friction as valuable,

“I’ve deleted the Twitter apps from my devices, and now if I want to check in I have to use the browser. Not having notifications or easy launching of a stream adds a bit of friction. I also have 2-factor authentication enabled, and logout after checking in, so dropping into twitter is deliberately kind of a pain in the ass.”

How is he finding this ‘pain in the ass’ valuable?  “I find I’m thinking with less snark. I’m being less sarcastic in general. And I think that has something to do with withdrawing from the hot-take snark-and-sarcasm streams on social media.” Friction accessing social media, just making it more clunky, is allowing him to be more intentional and clearing his head of unnecessary stimuli. Interestingly, we also featured the ‘Space’ app on the Daily Stillness recently. What does it do? It makes accessing apps you use without intention a pain in the ass! From the blurb: “It loads a Moment of Zen before the apps you want space from. That re-wires your brain and helps you take back control of your habit. Because you don’t really want to dump your favourite apps: you just need Space.”

So, Cody De Haan adds further to the above, building in inefficiency is exactly the point:

Now when I pick up my phone, I see essentially a blank slate. This means that instead of seeing a bunch of triggers for distractions, I wind up pausing for a moment to think about what I’m doing. Often I lock my phone again and set it back down, realising that I was just in an avoidant state or trying to distract myself from what I really want to be doing. […] I think the slight delay in typing the app name I’m looking for is balanced out by the time I save not mindlessly scrolling through my apps.

So, I got curious. It seems we are (re)discovering something that has been part of many a spiritual tradition for a long time. The Rumi poem at the start of this post a beautiful example of the way in which ‘clunky-ness’ in life can bring sweetness and delight. I wondered where the notion of friction came from, I wondered why people felt more comfortable with ‘friction’ than ‘relinquishment’ or ‘abstinence’ or plain old ‘difficulty’. The renunciant’s path is alive and well in  monastic life with the taking of vows to renounce the comfortable life. When I did a 3 year retreat, I did not warm to renunciation straight away, I preferred it when my abbot told me to ‘practice sense-restraint’ – it seemed less antiquated and somehow more doable!

Maybe this is what is going on with friction; adding friction to your life, does feel more modern than giving up creature comforts. Yet, popular culture really gets the inevitable end point of the ‘frictionless life’. Have you seen Wall-e and its fat people? A favourite book by David Whiteland summed it up well back in 2000,

‘You should never underestimate the power of comfort. To our everlasting discredit, we owe our utter dependency on technology to our inability to resist it.’

My search led me to cognitive friction. Alan Cooper coined the term in 1999 and defined it as:  “the resistance encountered by a human intellect when it engages with a complex system of rules.” If cues don’t match our expectations, we experience cognitive friction. Avoiding cognitive friction in UI design has been a design mantra in software design at least since the term was coined if not before. We get frustrated when interfaces don’t function seamlessly, and the aim is always to overcome cognitive friction in software. Of course, the flip side of the lack of friction is that we build unconscious habit and let our fingers do the walking, as we open Twitter for the Nth time in an hour without ever intending to…and stay there catching up with nothing.

I searched for the benefits of cognitive friction in health and well being, and could find very little on the google, a potential PhD for somebody scanning for research ideas? John and D’Arcy offer first person inquiry into how their mental wellbeing is benefitting by building friction into their interaction with software. The Space app benefits from our emerging ability to see value in friction – generally we call it a pain in the ass and want it gone, we want instant gratification…except sometimes.

Here at the Still Web, we have worked with the idea of challenging comfort and creating friction as offering a way out of that monkey mind since we set up the web site. Comfort is a lie or at least it is not something we should keep on pursuing uncritically as a society.

Creating friction intentionally maybe something we can sign up to more easily than relinquishing comfort and ease; and maybe becoming a consideration in software design going forward, as shown by our Space App example above.

May be those monastics through the ages telling us to sit with discomfort, relinquish comfort and become renunciants to gain enlightenment do still have something to teach us as we add a little intentional friction into our work flows. Buddhists monks know that  ‘renunciation is a skill’,

“Buddhism takes a familiar American principle — the pursuit of happiness — and inserts two important qualifiers. The happiness it aims at is true: ultimate, unchanging, and undeceitful. Its pursuit of that happiness is serious, not in a grim sense, but dedicated, disciplined, and willing to make intelligent sacrifices. What sort of sacrifices are intelligent? The Buddhist answer to this question resonates with another American principle: an intelligent sacrifice is any in which you gain a greater happiness by letting go of a lesser one, in the same way you’d give up a bag of candy if offered a pound of gold in exchange. In other words, an intelligent sacrifice is like a profitable trade.”

Maybe intentional friction will lead us to ‘the pot of gold’ of equanimity as we face our modern busy lives. I am reminded of my reading of McLuhan. What does the frictionless life flip into when pushed to its limits? Intentional Cognitive Friction, maybe?

“Too much of anything, however sweet, will bring the opposite of whatever you thought you were getting. One becomes many, many become one. You start out a consumer and you end up consumed. The trick is to recognise the pattern before it is complete.”

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54 days ago
Friction and intentionality are important in our current easy-constant-content-streams…
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55 days ago
Kill Bill vol. 3
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LMS Dogma

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I mentioned in my last post that I recently was invited to talk to a group of students in Eddie Maloney’s Technology Innovation by Design course. This group are the pioneers of Georgetown’s new Masters program in Learning and Design. I was asked to talk about something, and I proposed a few things:

A Brief History of Learning Management Systems: I would take a course period to frame 20 years of Learning Management Systems and what they have meant to the field of educational technology in higher education. It would be a fun way for me to integrate the core principals of your program through the lens of the predominant systems we use to manage learning in Higher Ed. I like this cause it frames how we understand learning design, where we capture analytics, what passes for innovation, and how leadership understands all these things. The LMS is a perfect refraction point for so many issues at the heart of the program.

Future Visions: Hosted Lifebits and the Personal Cloud
This talk would provide an overview of existing technical infrastructure much of the innovation in higher ed has relied on since 2003 (LAMP stacks for self-hosted apps like WordPress, MediaWiki, etc.) while framing what will come next. It will look at the changing nature of cloud infrastructure that started with APIs at Amazon and led to Amazon Web Services, a cloud-based infrastructure that effectively changed the nature of how we imagine the basic plumping of the web. The implications for future innovations are remarkable given access to various technologies beyond the LAMP environment are increasingly just one-click way, not to mention the implications for managing and hosting your personal digital “lifebits” on your own cloud. This ties into practical work we are doing at Reclaim that builds on the Domains project.  In fact, I would love to teach an entire course about this topic.

The Problem with Analytics in Higher Education:
This would be a bit more of a provocation (although well grounded in the current reality of big tech) that would trace the discussion around analytics (much like I propose with the LMS) in order to lay bare some of the assumptions and problems with the promise of analytics as an excuse for unfettered data collection on the part of the various systems that we subscribe to in higher educational institutions (and beyond). I will discuss this in light of alternative models for imagining data collection and control on the part of the individual using “personal  APIs” and designing a system that gives  students and faculty far more control over their data—which should be a central concern given “data is the new oil.”

Practical Innovations: An Idiosyncratic History of Learning Design:
This would be a bit of the greatest hits of work we did at UMW to focus on practical ways in which you build a culture of innovation around learning technologies. This would cover UMW Blogs, ds106, Domain of One’s Own and move to Reclaim Hosting. I’ve done versions of this many times, and it will really focus on learning design and innovation, but will touch tangentially on the other two core tenets of the program.

I find it is easier to propose things than to do them, but when you commit to showing up you have to have something. We settled on the history of the LMS proposal, and I was happy to dig in. But once I started to prepare I remembered I’m not much of a historian, rather I’m just a lowly blogger. So I started searching around, and I started at the Learning Management System Wikipedia article. This led me to E.M. Forster’s story called “The Machine Stops”, which struck me as fairly bizarre starting point for distance learning in the 20th century. Wild to think the same writer behind novels like Passage to India, Howard’s End, and Room with a View could have a hand in the beginnings of the LMS. But that’s what’s remains compelling about the field of edtech: it’s a strange mix of Edwardian nostalgia, technological imperialism, and speculative science fiction. 

Around the same time I was reading Forster’s story, Audrey Watter’s published her review of Brian Dear’s The Friendly Orange Glow—a history of the “the first generalized computer-assisted instruction system.” After reading her review and following up on both the Brett Victor 1973 2013 “Future of Programming” talk (which I had not previously watched)  as well as a deeper dive into PLATO. And after that I had the preparatory reading/viewing for my class visit: E.M. Forster’s “The Machine Stops,” Brett Victor’s “The Future of Programming,” and Audrey Watter’s PLATO review. I liked the way the idea of dogma weaved its way through all three pieces, and it resonated with the students as well.

As I imagined we spent most of the time talking about Forster’s short story, which was fine by me. I came up teaching literature and I can’t get enough of it.  The parallels in that work are pretty striking, and it seems quite fresh more than 100 years after it was written. Folks make a lot of the idea of the everyone lectures and there is a distance ed machine, but for me the theme of dogma and the growing cult of technology as the next religion seemed far more interesting—not to mention the concomitant historical amnesia. Passages like the following meditation on the machine was pretty powerful for me:

Cannot you see, cannot all you lecturers see, that it is we that are dying, and that down here the only thing that really lives in the Machine? We created the Machine, to do our will, but we cannot make it do our will now. It was robbed us of the sense of space and of the sense of touch, it has blurred every human relation and narrowed down love to a carnal act, it has paralysed our bodies and our wills, and now it compels us to worship it. The Machine develops – but not on our lies. The Machine proceeds – but not to our goal. We only exist as the blood corpuscles that course through its arteries, and if it could work without us, it would let us die.

This may bleed uncomfortably close into artificial intelligence for many folks, but for me the sense of having lost control over the systems and online spaces we have helped champion was poignant. The idea of these systems existing somehow external to our collective will maps onto my experience with the LMS. A meek acceptance of this as the decided upon future for computer-mediated teaching and learning was always the worst part of instructional technology, a theme which both Brett Victor and Audrey Watters nail in relationship to the dogma of programming languages and the ahistorical dogma of edtech served up by Silicon Valley. In fact, the second half focused on Victor and Watters, and in the end I spent far more time talking about our current dogma of technology and the narratives we weave rather than anything resembling a history of the LMS. I tried to save myself by quickly running through the Wikipedia page on the History of virtual learning environments, which I got thanks to a Tweet from Audrey and turned out to be a real gem.

It was fun to do, and it gave me an idea for a fun presentation wherein one gives 2004/2005 era edtech talk in relationship to all that’s changed in the last 15 years when it comes to promise and possibilities of Web 2.0. I still think it is a bit too close, and unlike some I don’t think that work was for naught—but it does take on a different valence 15 years later. Anyway, I wanted to try and get out some of these thoughts down before they vanished, and say a special thank you to Eddie and the students in the course who made me feel so welcome and tolerated my two and a half hour indulgence. 

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64 days ago
Innovation in education can easily be co-opted by corporations. There is a better way. Jim is into something important here.
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A list of 25 Principles of Adult Behavior by John Perry Barlow

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Silicon Valley visionary John Perry Barlow died last night at the age of 70. When he was 30, the EFF founder (and sometime Grateful Dead lyricist) drew up a list of what he called Principles of Adult Behavior. They are:

1. Be patient. No matter what.
2. Don’t badmouth: Assign responsibility, not blame. Say nothing of another you wouldn’t say to him.
3. Never assume the motives of others are, to them, less noble than yours are to you.
4. Expand your sense of the possible.
5. Don’t trouble yourself with matters you truly cannot change.
6. Expect no more of anyone than you can deliver yourself.
7. Tolerate ambiguity.
8. Laugh at yourself frequently.
9. Concern yourself with what is right rather than who is right.
10. Never forget that, no matter how certain, you might be wrong.
11. Give up blood sports.
12. Remember that your life belongs to others as well. Don’t risk it frivolously.
13. Never lie to anyone for any reason. (Lies of omission are sometimes exempt.)
14. Learn the needs of those around you and respect them.
15. Avoid the pursuit of happiness. Seek to define your mission and pursue that.
16. Reduce your use of the first personal pronoun.
17. Praise at least as often as you disparage.
18. Admit your errors freely and soon.
19. Become less suspicious of joy.
20. Understand humility.
21. Remember that love forgives everything.
22. Foster dignity.
23. Live memorably.
24. Love yourself.
25. Endure.

Here’s what these principles meant to Barlow:

I don’t expect the perfect attainment of these principles. However, I post them as a standard for my conduct as an adult. Should any of my friends or colleagues catch me violating one of them, bust me.

You can read remembrances of Barlow from the EFF and from his friends Cory Doctorow and Steven Levy. The EFF wrote:

Barlow was sometimes held up as a straw man for a kind of naive techno-utopianism that believed that the Internet could solve all of humanity’s problems without causing any more. As someone who spent the past 27 years working with him at EFF, I can say that nothing could be further from the truth. Barlow knew that new technology could create and empower evil as much as it could create and empower good. He made a conscious decision to focus on the latter: “I knew it’s also true that a good way to invent the future is to predict it. So I predicted Utopia, hoping to give Liberty a running start before the laws of Moore and Metcalfe delivered up what Ed Snowden now correctly calls ‘turn-key totalitarianism.’”

Barlow’s lasting legacy is that he devoted his life to making the Internet into “a world that all may enter without privilege or prejudice accorded by race, economic power, military force, or station of birth … a world where anyone, anywhere may express his or her beliefs, no matter how singular, without fear of being coerced into silence or conformity.”

Tags: Cory Doctorow   John Perry Barlow   lists   Steven Levy
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71 days ago
fantastic guidelines. focus. give a shit. love.
70 days ago
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71 days ago
That's a worthwhile list. I think I'll appropriate it.
Portland, Oregon, USA, Earth
71 days ago
Words to live by
71 days ago
Mr Barlow would definitely give me a "D" as an adult. But I'm trying.
Louisville, KY

Measuring Social Relations in New Classroom Spaces: Development and Validation of the Social Context and Learning Environments (SCALE) Survey

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This study addresses the need for reliable and valid information about how the innovative classrooms that are becoming more common on college and university campuses affect teaching and learning. The Social Context and Learning Environments (SCALE) survey was developed though a three-stage process involving almost 1300 college students. Exploratory and confirmatory factor analyses supported a four-factor solution that measures formal and informal aspects of student-student and student-instructor classroom relations. The resulting 26-item instrument can be used by instructors and researchers to measure classroom social context in different types of learning spaces and to guide efforts to improve student outcomes.
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79 days ago
validated survey on student experience in learning spaces…
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