Archive for Cancer
Is it warm in here?
Posted by: | CommentsI’ve been quiet for a while. Been doing my one-armed paper-hanger imitation – in a good way – which has taken up too much of my time and attention.
She’s baaaaaaaaack!
And she’s almost 4 months overdue for her annual mammogram. Yep, a breast cancer survivor is late for her mammo – but it isn’t due to lack of effort on her part.
Here’s the challenge: I have the money in hand for a diagnostic mammogram. However, there is *not* enough money in hand for a specialist visit to order said mammogram. And since your (not so) faithful correspondent here has no health insurance – thank you, cancer, you rat bastard – that’s a wrap.
My frustration is magnified by my certain knowledge that the reason the mammogram has to be *ordered* is that said order means that the insurance company will pay for it when it’s billed.
Of course, since I have no insurance, that’s why *I’m* paying for the mammogram. But I can’t get a mammogram, since there’s no order for said mammogram to ensure insurance payment for same.
Crazy yet? Yep, me too. I’m also totally steamed … which is why it’s warm in here.
We have created a healthcare payment system in the US that flies in the face of logic. I’m not the only one who thinks so, either. My buddy e-Patient Dave is banging away at some of the same issues as he tries to be a responsible healthcare customer. I’m on record with what I think are some valid health payment reform suggestions over on Disruptive Women in Health Care.
And then there’s the ever-epic Jonathan Rauch article in National Journal that became an also-epic YouTube video exploring the issue “If Air Travel Worked Like Health Care”. All I have to say is … GAH!
On both the get-a-mammogram issue, and on healthcare in general. As the Supremes hear oral arguments on what’s called either Obamacare or the Patient Protection and Affordable Care Act (depending on whether you think health insurance is something we all *should* buy for ourselves), it might be time for all of us to face some hard facts.
The most basic of which is: until we start acting like customers instead of meat puppets, the healthcare delivery system in this country will be stacked against access and transparency.
With me? Think I’m nuts? Spill your guts in a comment!
Pink-icide: The Musical!
Posted by: | CommentsOK, the post title is total hyperbole.
But don’t you think that the non-profit fist-fight that Komen has become deserves at least a song or two, if not a full treatment by the “The Book of Mormon” boys Matt Stone and Trey Parker?
Maybe a musical episode on South Park? (Seriously, I can’t wait to see what Nancy Brinker looks like standing next to Cartman.)
Now that the furor has subsided, I have to say two things:
(c) bellesouthblogs.com
#1: Komen is not about ending breast cancer, it’s about continuing Pink Ribbon Culture.
I wrote about the dust-up from a branding perspective on brandchannel.com, and most of what I have to say is included there. Komen shifted from grassroots to corporate entity when it became successful enough to feel like it needed to unleash the legal hounds to protect “pink” and “for the cure” from use by other non-profits and causes. #fail.
#2: Sorry, kids, but we told you so a while ago.
Gayle Sulik in “Pink Ribbon Blues”, KomenWatch, Lawsuits for the Cure – many of us have been asking “WTF, Komen?” for a while now. We have something like an answer after the Komen/Karen Handel fiasco: they’re not interested in the mission any more, they’re all about the Komen brand.
If you’re looking to spend some money on a good cause, forget buying pink gear. Write a check to the Canary Foundation or the Cancer Research Institute. Your dollars have a higher degree of likelihood to go to research, not legal expenses.
Calling all cancer warriors!
Posted by: | CommentsThere’s a wave building far out in the virtual sea. One that will drown out all other voices but those of 1 million cancer warriors marching on the National Mall in Washington DC on Sunday, June 3, 2012.
It’s an election year, kids. Let’s make enough noise to drown out what Calvin Trillin calls “the Sabbath Gasbags”, and get attention for our cause – one that touches every single American life in one way or another: cancer.
Let’s end it. Let’s put an end to death by cancer.
Here’s how to get on board the bus:
- Contact me
- Tell me how many warriors are in your group
- Plan on being in Richmond by Saturday, June 2 so you can ride to DC with us on the Team Plaid Warrior Express, or
- Meet us in DC on Sunday morning at our Early Detection Rally Roundup and join us as we storm the National Mall
The warriors who have kicked off this effort are:
Donna Guinn Kaufman, head weapon-wielder at Kill the Beast who became a cancer warrior when diagnosed with breast cancer, while pregnant, a little over five years ago
Jennifer Salmon Melton, author of Pink Sky at Night, a remembrance of her father’s battle with lung cancer
and also on board to help make the Warrior Wave bigger than anything Washington has ever seen is Jennifer Stauss Windrum, the leading light of WTF Lung Cancer, who you’ve heard me sing out about here before.
You on the bus? You better be!
COME ON!!!
It’s the month of “pink” + I’m seeing red
Posted by: | Comments
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”.
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.














