Archive for News
Spending one’s days on the advocacy beat out here on the Wild Wild Web can be hugely rewarding. Like, say, when you start getting recognized by organizations like the WHO as a strong voice for people-who-are-patients.
Then there are the days when you get called f***ing a**hole by strangers for simply speaking up.
This is not a unique problem for patient advocates – this happens to anyone who speaks up in service of changing a cultural norm. Just ask MLK, who was trolled by none other than the FBI, who told him he should just kill himself. Imagine the fun the FBI could have had on Facebook, if MLK vs. FBI on Facebook had been a possible-thing in 1964.
It can happen in the e-patient game, too, as shown in the Bill Keller/Emma Gilbey Keller/Lisa Bonachek Adams/NY Times dustup over whether or not patient blogs, particularly those about cancer, are TMI (Too Much Information – translation: “ew, gross”).
Just being a woman online (guilty as charged) can be enough to draw the gimlet eye, and ire, of a mob of trolls. The #gamergate mess – if you click that link, pack a lunch, a raincoat, and some serious antibiotics – is an example of that.
I recently tripped over a compelling piece on the Guardian’s site. The piece, by Lindy West, was about how she had been hard-trolled by someone who had gone so far as to create a Twitter handle that mimicked Lindy’s recently dead father, who she grieved for deeply. And who used that Twitter handle to troll her about her stance on rape threats.
My dad was special. The only thing he valued more than wit was kindness. He was a writer and an ad man and a magnificent baritone (he could write you a jingle and record it on the same day) – a lost breed of lounge pianist who skipped dizzyingly from jazz standards to Flanders and Swann to Lord Buckley and back again – and I can genuinely say that I’ve never met anyone else so universally beloved, nor do I expect to again. I loved him so, so much. ~ Lindy West
Lindy West is no stranger to the experience of being trolled. She’s a prolific, funny writer who’s talked openly about being a fat girl at the gym, about the toxicity of the “men’s rights movement,” about sexuality, about comedy … the girl’s got content. And trolls love to gang up on women on the web.
So put yourself in the place of a young woman, who recently lost her beloved dad, who suddenly finds a stranger co-opting her dad’s name and image, and then aiming threats of physical violence at her via the handy-dandy trolling tool known as The Internet.
What made this piece stand out was the payoff – after she shared on Jezebel.com how much this Twitter troll had wounded her by making rape jokes, and threats, using a handle whose avatar was a photo OF. HER. DAD. … she heard via email from the troll himself. I won’t put any spoilers here, because I want you to read the piece yourself. And maybe even listen to the recent This American Life episode that features a story about Lindy + the Troll.
My point? I think Lindy’s right – feed the trolls until they explode. Advocacy requires disturbing the status quo, which risks some serious pushback from those who are in that status quo’s driver’s seat. Ask any woman who’s blazed a trail outside “the woman’s place” – Boudicea, Susan B. Anthony, Golda Meir, Dr. Elizabeth Blackwell – what it’s like to take on the boy Mafia status quo. Push for change, and be aware you’ll need all the ordnance you can muster.
Because what the haters really want is for us to shut up. What trolls want is our silence. We have to meet that with a serious, and steady, “THAT’S. NOT. OK.” chorus.
This is a guest post by Patricia Dean-Escoto, a nutrition coach and consultant who learned, in her own cancer journey, the impact of food on cancer prevention – she’s got a new Android app, My Breast Cancer Advocate, that’s available in the Google Play store.
The other day I was visiting with a good friend of the family. She had just flown in from Nigeria for a three-week stay and had come to Delaware to stay for a while. We got on the topic of the poor in countries like Africa, the commercials you see for helping to feed them, and reality of what donated money really supplies in the way of actual meals.
My sister asked her what a dollar a day would actually do. The answer was just what you see on the TV. A dollar would feed them a bowl of rice, maybe three times a day. This bowl of rice would not contain any vegetables, nor would it have any source of protein like beef or chicken. For that, you would need to be in the range of $3 per meal.
We see these images of starving children, eating just that, a simple bowl of rice. Unfortunately, these types of ads give you the impression that the bowl of rice you see that small child eating can save their lives. It gives them not only nourishment, but hope.
Fast-forward to an article I came across in the New York Times while traveling to my conference in Tucson a couple of days later. The article was about, wouldn’t you know it, rice! But, it wasn’t one of hope, nor of nourishment. In fact, it was just the opposite.
According to recent studies, rice, in addition to being a simple carbohydrate that easily breaks down to glucose in the bloodstream, which can have an impact on your blood sugar levels, rice seems to also be a magnet for heavy metals. It has that special gift, courtesy of the way it’s grown, to attract things like cadmium, mercury, and specifically arsenic to it. We’re talking about rice – one of the most widely consumed foods in the world (and, oh, by the way, one of my husband’s favorite things to eat).
Yet, according to new research from Consumer Reports, consuming rice, even once a day, can increase arsenic levels in the body by up to 44 percent.
Where Rice can be Found
Today, rice can be found in everything from cereal to energy bars, and even baby food. In fact, because of the recent concern about gluten and gluten intolerance, rice is also becoming one of the main substitutions in a gluten-free diet for baking your favorite waffles, cookies, and cakes.
And, for all of you who say, ‘I’ll just switch to brown rice.’ It doesn’t get any better. Surprisingly, brown rice is even worse because the metals accumulate in the bran or husk and is not washed away during the bleaching process that normally accompanies the production of white rice.
In fact, according to the New York Times article, the Department of Agriculture estimates the levels of arsenic in brown rice to be 10 times higher than what is found in white rice.
Exposure to arsenic can cause a host of aliments that include: Stomach ache, nausea and vomiting, diarrhea, muscle weakness and cramping, and skin rashes. In addition, cadmium, and its associated effects on bones, have been well documented going as far back as the late 60’s.
Naturally, all of this made me think back to my conversation with my friend and what all this rice consumption was doing to the health of so many children who everyday receive only a bowl of rice for their nourishment. Rethinking how and what would feed the world could mean limiting our exposure to these toxic metals and limiting our exposure to rice.
Many other grains can be consumed that are more nutrient dense and cause a lower impact on our blood sugar levels. These include quinoa, barley, millet and couscous, all of which are readily sold in supermarkets.
To Your Health,
Patricia Dean-Escoto is a certified nutrition consultant and breast cancer survivor. She holds a master’s degree in education and has more than 20 years of experience working in both the field of education and healthcare. In 2006, after being diagnosed with stage 2 breast cancer, Patricia returned to school to study nutrition and completed studies at Bauman College for her certification as a nutrition consultant. Recently, she hosted a year-long radio show called Pathways to Healing on the Voice America network where she interviewed experts in the field of health and wellness. Patricia is author of ‘The Top Ten Superfoods for Preventing Breast Cancer’ and creator of the My Breast Cancer Advocate app which is designed to assist those who are newly diagnosed with or recovering from breast cancer. Her company, Pathways2healing, works exclusively with cancer patients in the area of nutrition and exercise. She lectures both locally and nationally on the topic of nutrition and cancer prevention. Connect with Patricia on Facebook, on LinkedIn, and on Twitter.
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 …
— Brave Bosom (@BraveBosom) December 19, 2013
… 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.