Archive for News
It’s the month of “pink” + I’m seeing red
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The month of October is awash in pink. Everyone from the NFL to Panera Bread is on the pink bandwagon in support of breast cancer “awareness” – is awareness an end in itself?
Gayle Sulik, who I’ve mentioned before here, does a masterful job of ripping the lid off the damage that pinkwashing has done. Her book, Pink Ribbon Blues, is linked in the image on the right.
I think awareness alone falls very short of the goal if ending the disease is the goal. Unfortunately, I think that Susan G. Komen – and I’m talking the Houston mothership here, not the local chapters – is now much more about the brand than it is about the cure.
When it comes to “pink”, I see red. And I’m not alone.
- In 2005, the estimated mortality rate for breast cancer was 15% of those diagnosed with the disease
- In 2007 (the year I was diagnosed), the estimated mortality rate was 17%
- In 2009, the estimated mortality rate was 16%
Where’s the win here? If mortality rates are essentially holding steady, where’s the progress on “the cure”?
In the pink avalanche that is now the month of October, where is the discussion of the fact that the very products being pink-washed carry toxic substances with a link to cancer?
That includes the Avon Army of Women campaign (most Avon cosmetics contain paraben preservatives, which are estrogen mimickers that have been linked to breast cancer).
It also includes the Promise Me fragrance – also an Avon product – that has toluene and galaxolide in it, both of which are toxins. Read about them here.
There are a host of other regrettable “pink” products flacked in October, including Kentucky Fried Chicken (really?) and dairy products with rBGH, the growth hormone pumped into dairy cows that has in turn driven the rise in breast cancer diagnoses. Which hormone is, BTW, made by Eli Lilly, who also produces a number of breast cancer drugs. Talk about milking cancer!
And don’t get me started on the pinkwashing of the NFL. The pink gloves/cleats/dancing-ribbons-at-halftime do NOT mean that the NFL is giving one thin dime to Komen. It’s “awareness” – where’s the ****ing money, dudes? Don’t tell me it’s coming from the pink products being flacked on NFL team sites. The league keeps the lion’s share of that money.
Komen is a brand, it’s no longer a cause. They’ve started “lawsuits for the cure” – you can read my buddy Alicia Staley’s take on that here, which includes a good drill-down into the numbers. There is also a follow-up here, and you’ve really got to read the comments on both, which include a “harrumph” from the Director of Communications at Komen, Andrea Rader.
If you want to support action to stop breast cancer – and other cancers – join the movement to cut down on environmental toxins, to end plastic food, to stop ingesting endless amounts of crap through our skin, our lungs, our mouths. It’s not just about cancer, it’s about the health of our entire community – the human community. On the whole dang planet.
I recommend Breast Cancer Action and the Breast Cancer Research Foundation if you’re passionate about ending breast cancer.
Stop buying makeup and skin care products with parabens and other toxins in them. You can get information on most products via SkinDeep, the Environmental Working Group‘s searchable cosmetics/skin care products database.
Stop eating food out of boxes, and introduce yourself to your stove. Cooking is easy, it’s fun, and it puts you more in touch with your family. Make time to cook together, you’ll be amazed at the conversations and communication that develop in the kitchen. Make trips to your local farmer’s markets a weekend excursion for the family.
And stop buying “pink”.
Is #occupyhealthcare a healthcare #arabspring?
Posted by: | CommentsI’ve been thinking about the top-down, inverted-pyramid nature of healthcare for a long time now. That inverted pyramid is poised atop the industry’s customers – us, people, patients – crushing us, and collapsing under its own weight.
All of us could benefit from a little revolution, don’t you think?
The quote at the right is Buckminster Fuller at his best – simple and revolutionary.
I think that trying to fight our current reality – the current healthcare delivery system – is a waste of time.
What’s needed is for people – the aforementioned patients – to act as if healthcare was there to serve us. Currently, the system is set up to serve no one, unless maybe the insurers at the top of that food pyramid are getting something out of this insanity.
Somehow, though, I think they’re as broken as the rest of the system.
I’ll repeat what I posted over on the MightyCasey.com blog on Monday:
Don’t settle for less-than-full disclosure from any of your healthcare providers – in other words, ask why your doctor is prescribing a name drug, if a generic is available.
Act as if your health is YOUR responsibility. Get off the couch, call a halt to drive-through nutrition, examine your habits and ditch what doesn’t serve you, and your health.
Engage with pharma companies who provide you or your family with drugs that work, and tell them so.
Rabble-rouse the FDA to stop standing on innovation, and to start freeing up both farm AND pharm to help us eat better, and help researchers bring new drugs that actually help to market.
Take to the the streets by visiting your local farmer’s market and buying/cooking local. Boycott processed cr*p disguised as food.
Firing that rocket drew the attention of my new friends over at OccupyHealthCare.net.
Recommended reading over there:
The Line Between Radicalism and Realism in Healthcare - speaks clearly about the need for a Bucky Fuller version of reinvention from the ground up
Fragmentation as a Never Event (“never events” are 28 healthcare outcomes listed as total failures by the US National Quality Forum) – the post focuses most on the importance of making mental health part of primary healthcare and the establishment of patient-centered medical homes.
Join me in an #arabspring for healthcare.
Our lives are in OUR hands.
Digital Patient Bill of Rights: check!
Posted by: | CommentsA group of about 20 passionate e-patients, including e-Patient Dave his own self and yours truly, gathered around a biiiiig table on Monday in Philadelphia to talk about what an e-patient Bill of Rights might look like. I have to give a shout-out to my buddies at WEGO Health, particularly Jack Barrette, Bob Brooks, and Natalia Forsyth
One conclusion: don’t call it the e-patient Bill of Rights. Since we’re talking digital healthcare, let’s call it the Digital Patients Bill of Rights. That conclusion was reached hours into the discussion, which ranged over topics from chronic conditions like diabetes, HIV/AIDS, multiple sclerosis, rheumatoid arthritis, lupus, multiple sclerosis, and fibromyalgia to acute illness like cancer.
We had about four hours to hammer out a first-principles statement, and Mark Bard of the Digital Health Coalition deserves the Cat-Herding Nobel Prize for keeping a group of vocal, passionate, diverse e-patients on task.
To lift directly from the Klick Pharma blog (Klick was one of the sponsors of the event, along with Pixels & Pills, Health Central, Care Coach, Kru Research, Radian 6, Red Nucleus, Think Brownstone, Verilogue, and a who’s who of health media sponsors):
“After an intense four hours, we were able to reach consensus on the following key messages as a foundation to a Digital Patient Bill of Rights:
- Shared access to my data
- Attitude of collaboration and overall respect
- The patient is the largest stakeholder
- Transparency and authenticity across all areas
- Voice of the patient is a legitimate (clinical) source
- The right to efficient communication with providers who utilize the technology that we need”
It’s a start. A damn good one. The Klick Pharma blog post also has a full list of all the e-patients who participated in the conversation. It was quitea day.
- Those dealing with chronic conditions have an even deeper need to be activist e-patients. They also have a greater level of knowledge, and can be true leaders in this on-going discussion.
- Each healthcare consumer – formerly known as “patient” – must take action and responsibility on his/her own behalf. And not shut up until they get what they need to achieve the best health possible.
- Having town-hall meetings across the country, inviting community members – healthy, chronic, whatever – to attend, to share, and to learn how to both be consumers of healthcare and advocates for the family members who depend on them, would be a great way to keep the ball rolling and drive wide awareness/support for empowered, engaged e-health.
- Those of us who’ve taken a trip through the medical care car wash have a duty to share our stories, to lead, to educate, to shake up the status quo, to effect change. We get the elected representatives, and the healthcare, we deserve.
Have any thoughts on what you’d like on your Digital Patient Bill of Rights? Tell me.
It’s your health, your healthcare, your life, your choice. Exercise it.
Dear Health IT geeks: LET PATIENTS IN. Please.
Posted by: | CommentsI read, with a combination of amusement and rage, a conversation-via-post about healthcare information technology (HIT) between John Halamka, the CIO of Beth Israel Deaconess Hospital in Boston, and Ken Terry, the editor of FierceHealthIT. Halamka thinks that the rise of electronic medical records is the key to empowering both patients and healthcare providers toward more effective, efficiently-delivered care. He also thinks that the cloud – delivering software services via the web, and hosting system data on servers at scattered sites across a city, region, country, or the globe – will be the biggest driver of health IT innovation and use.
Terry thinks that Halamka’s overly optimistic.
I was moved to make a comment on Terry’s post – that was driven not by amusement, but by a touch of rage – regarding the fact that nowhere in his post did he address the patient. Who is the entire purpose of the exercise in healthcare, even if many people involved in medicine have forgotten that fact.
Halamka actually talks about patients as more than data points. Both Halamka and Kelly are HIT thought leaders, but I give Halamka the win here because he sees patients as both the purpose of the exercise (healthcare) and as the central driver of HIT development and adoption.
As patients, we have to add our voices to the chorus. We must storm the HIT Bastille, demanding secure access to our data, control over who sees it, a say in who are providers are.
Only when patients are truly empowered – and we’ve got to take that power, not wait for someone to give us permission – will healthcare really be transformed into an industry that serves all the players involved in its process. Engaged, empowered patients are more likely to do what their healthcare providers recommend, because they’re truly communicating with each other.
Safety and cost controls will be meaningful because the patient and provider are directly connected as a team working toward the best possible outcome.
Where we are now? To this patient, it feels like the 7th, 8th, and 9th circles of Dante’s hell, all at once.
Please click this link for a bit of humor – infused with just the right touch of irony and rage – that illustrates my point (embedding isn’t working right now … GoDaddy got up and went?)
LET US IN, otherwise the system will remain broken.
Data = Informed decision-making. Act accordingly.
Posted by: | CommentsA USA Today analysis of new Medicare data shows that even hospitals that get high marks for patient care can fall short on the re-admission/mortality scale.
What does this mean for you, for me, for patients across the US?
It means that we need to look at all the data available to us before making a decision about treatment. Which in turn means weighing the risks and rewards of choosing one hospital over another. For example: are you being treated by a doctor who has privileges at more than one hospital? If so, take a look at all the options there. Make an informed decision.
I highly recommend taking a look at the study, and using the comparison tools as well as the survey results to determine which hospitals in your area are on your “no-fly” or “must-have” lists.
Being an e-patient requires that we both demand access to information and data about our medical care, and to actually use that data to make decisions that can help us move toward the best possible outcome.
Know your risks. Know your history. Ask questions. Work to understand the answers to those questions. Demand access to your data, and to the data that can help you make informed decisions. Do this for yourself, and for family members who can’t do it for themselves.
Healthcare reform, whatever your politics, must include active participation on the patient’s part. Which means: be an e-patient, or be a meat-puppet.
Your choice …
Pink Ribbon Blues + Why #teamplaid
Posted by: | CommentsI had the great good fortune to be listening to Washington DC’s NPR affiliate, WAMU, early last week (yep, still love the radio – and particularly love that there’s an app for that on my Droid ;>) and heard a promo for a guest on that day’s Kojo Nnamdi Show: Dr. Gayle Sulik, a sociologist and researcher whose latest book is …
Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health
(note: I would have inserted an image of the book cover here, but WP isn’t playing nice today. Meh.)
The topic of Gayle’s book identifies one of the core reasons I kicked off #teamplaid – “pink” has done a great job making early detection a viable, life-saving way to avoid dying from breast cancer that isn’t diagnosed in the early stages.
I’m living proof of the viability of mammograms as early detection.
However, the focus on a cure – which has driven Komen to all kinds of questionable business partnerships, like the one with Kentucky Fried Chicken (really??) and the pink-cleated NFL in October 2010 - has watered down Komen’s early detection message.
If awareness is the goal, Komen achieved that at least a decade ago. Now it seems to be all about Komen’s brand visibility (see my buddy Alicia Staley‘s terrific post Lawsuits for the Cure (part 1 is here, part 2 is here). Moving from advocating for breast health and early detection to flogging fried chicken, pro football, perfume, and paraben-laden skin care?
I’m out.
And in with #teamplaid – lending my voice to the chorus seeking early detection for ALL cancers. Including lung cancer, which is now killing more women than breast cancer – the majority of which diagnoses and deaths are not smoking-related.
So: out with pink. Build your own plaid ribbon, and join the chorus.
One $5 pill cures cancer – click here!
Posted by: | CommentsDid that headline make you look twice? Did you want to click on it?
Yeah, snake oil sales language of the 1st water. It’s identical to the current “belly fat” online ad campaign that seems to be everywhere from CIO Magazine to TMZ … and about as likely to be (a) real or (b) effective.
Here’s the rule on health care information – on the web, on the phone (with friends and/or family), on the street – if it doesn’t come from a recognized expert, it’s likely a load of hooey.
Who’s a recognized expert?
- a scientist doing research on the disease/condition
- a doctor who treats people with the disease/condition
- a nurse or nurse-practitioner ditto
- a patient who has or has had the disease/condition
- a caregiver who has cared for someone with the disease/condition
Even if the person you’re talking to is in that group, apply both due diligence (fact check!) and caveat emptor (only guarantee in health care is that there are no guarantees in health care).
Or maybe it should be click-at emptor?
Whichever, wherever, consider the source. Check facts. Make a choice, and surrender to the process. Don’t be a meat puppet, but also don’t fall prey to Shiny Object Syndrome…
