Archive for e-patients

Updated Dec. 22, 2013: adds reference to Myriad’s action on DNA data as company trade secrets

As the author of a rabble-rousing call to action, with a heavy dose of humor, on managing medical care called Cancer for Christmas, I have some street cred on both cancer and on dealing with tough personal health conversations over a Christmas standing rib roast dinner.

My hair has been on fire since I heard that Myriad Genetics had patented genes, back in the previous millennium. First, how in the pluperfect f^ck is a naturally-occurring part of the human body – microscopic or not – patentable?? Second, why is a commercial enterprise allowed to dictate scientific research at a university? If they’re funding it … maybe. If they’re trying to prevent it from moving forward? What. The. F^CK? I expect crass commercialism at Walmart. When it comes to cancer research, a primary profiteering motive should be a capital offense. Yep, off with their heads, baby.

It recently came to my attention, thanks to my buddy BraveBosom‘s tip-off …

… that the trolls at Myriad Genetics are up to newer, stinkier tricks: “helping” us make cancer a holiday centerpiece!

Hey, Myriad, here’s a tip: WE DON’T TRUST YOU. You’re trolls. Support from you? I’d sooner eat dinner with Hannibal Lecter.

If you haven’t heard of Myriad Genetics, here’s the Cliff’s Notes version:

  • Founded in Salt Lake City in 1992 by, among other names, a Nobel Prize winner in chemistry, Walter Gilbert
  • In 1997, Myriad is granted a patent on BRCA1 (one of two genes that indicate high risk of breast and ovarian cancer)
  • In 1998, Myriad is granted a patent on BRCA2 (2nd of two breast cancer risk genes)
  • BRCAnalysis, the company’s genetic test for breast cancer risk, costs $4,000 (you can get an entire genomic sequence for less than that – the Myriad test only looks at two genes!)
  • Myriad hits research institutions with cease and desist letters to prevent their research into BRCA1 and BRCA2 genes as patent infringement (it seems they think your genes are their intellectual property)
  • The Association for Molecular Pathology files suit, challenging Myriad’s BRCA1 and BRCA2 patents
  • June 13, 2013: the Supreme Court rules against Myriad, saying that human genes are not patentable
  • Myriad starts to press legal action against other genetics companies, alleging trade secrets infringement (pre-SupCo-decision story here, post-decision story here)

With me so far? OK.

Yo, MySupport360 – your “support” would cost me how much, exactly? My liver, with some fava beans? The sticker price of an Escalade? The entire contents of my 401(k)? Given your track record for bottom-lining other people’s health risks, why the French-pressed f^ck should we trust you on anything, much less guiding health-related conversations with our families?

Your invitation to “talk about genetic testing” with our families over Christmas dinner … hell, we’d HAVE to serve up a bottomless flagon of nice Chianti to get through it, given that the “talk” (following your paradigm) would wind up with us wanting to clap a restraint mask on the faces of everyone behind MySupport360. ‘Cause sure as shootin’ you’d be picking our pockets all the way.

How much more powerful it would be if you followed the rising call for open science, backed by notable minds from 2012 ISEF Prize winner Jack Andraka to 2013 Nobel Prize in medicine winner Randy Schekman.

So get off your Scrooge train for Christmas, will ya? You low-down, dirty, rotten trolls.

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This story from PBS Newshour clearly shows how important it is to ask questions, and shop around, when it comes to prescription drug prices.

Think a generic drug guarantees a lower price? Not so much. Watch this story, and learn how the same generic drug can cost anywhere from $11 to $455. The best way to get the lowest price? The same way you shop for shoes, or appliances: research online, ask local retailers, and make an informed decision.


MedX: Persistence of vision

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The firehose of amazeballs ideas and connections that was Stanford MedicineX is now over two weeks back in my rear-view mirror. That does not mean that my head has not been on fire ever since, chewing on all the data that got packed into my cranium in those three days. If you want to read a recap of the joyful noise that was those days, it’s over on

A forest fire between my ears has flared up with this thought: all the “big idea” thinking that happens when smart people gather to talk the future of healthcare is terrific. How can that be translated, today, into actual care improvement for the average human? Not just ePatients, but just-plain-folks? How can we start little centers of excellence in a free clinic for undocumented workers in the South Bronx, or in a village in AIDS-ravaged sub-Saharan Africa?

Is there an app for THAT?

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I often feel myself at the crossroads of Possible and Are You F***ing Nuts. In other words, I dream of smartphone apps that could help a little boy in Ghana avoid getting malaria. I could lose an hour wondering how an app might help a little girl in Pakistan avoid a forced marriage at 12. As I type this, I’m thinking of how the kids in the public housing projects of the small city where I live could really use some how-to-manage-your-healthcare apps they’d be able to relate to. And the smartphones to go with them, of course.

Is there an app for THAT?

The grass, and its roots, are where we all stand. Healthcare, like charity, needs to begin at home. How do we help that happen? How do we empower children, and their parents, to understand how to interact with the healthcare system when so many of them are overwhelmed by just ensuring another 24 hours of survival?

Is there an app for THAT?

Here’s what I would LOVE to see at MedX 2014 (at which I firmly intend to be in attendance): real-world, right-now ideas for putting empowerment tools in the hands of not only the privileged, and the connected, but also into the hands of children across the globe. They’re more than our future … they’re our only hope.

John Green of vlogbrothers breaks down why healthcare costs in the US are so crazy. (Hey, John – I feel dizzy, too!)

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Put up a post today over on asking for a RAW DATA – NOW movement in scientific/medical research. Time for some sunlight, folks ….