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FRIDAY, OCTOBER 28, 2011
There's nothing more energizing than being around creative people. They do what they do because it's part of their DNA. My friend Claire M (her name has been changed) is one of them. Some of her words to live by are on the left.
Right now though, Claire has more on her mind than the next beautiful thing she'll create. Her family health history includes an extensive amount of breast cancer (her mother was diagnosed at 28) and she is a colon cancer survivor. Now, at 37, she's found a palpable breast lump.
Right now though, Claire has more on her mind than the next beautiful thing she'll create. Her family health history includes an extensive amount of breast cancer (her mother was diagnosed at 28) and she is a colon cancer survivor. Now, at 37, she's found a palpable breast lump.
There's one more thing: Claire doesn't have any health insurance.
She lives in Harris County, Texas, home of the massive Texas Medical Center, one of the richest, most medically intensive areas in the world. Some 40 institutions make up this city within a city.
Yet according to Shern Min-Chow, co-anchor of CBS-affiliate KHOU-TV in Houston, some 30 percent of Harris County's own residents are uninsured, far from easy access to the Medical Center campuses. That's about 1.2 million people, based on current census data. The national average is 16 percent, Min-Chow told the audience at last week's Seventh Annual Breast Health Summit, presented by the Breast Health Collaborative of Texas.
Women like Claire, with medical issues that are not emergent but ARE pressing, spend days, weeks, even months trying to have one health issue thoroughly addressed. So far it's taken two months to have an appointment at The Rose, Houston's leading facility for breast health services for under-and uninsured women.
First, Claire told me, she needed to have a referral to The Rose from a private physician to have a mammogram. She doesn't have a primary care practitioner, or PCP. So The Rose provided a referral so Claire could be referred back. Then another few weeks elapsed until she could see the doctor for the referral. This physician, in turn, was alarmed to the extent that she recommended and scheduled a stereotactic biopsy for Claire at The Rose. In turn Claire made arrangements to a friend travel to Houston so she could accompany her for the procedure.
That's where our last conversation had ended. Yesterday morning I thought about Claire while I was looking through my notes from the conference, so I dropped her an email. Ironically enough, the panel that Shern Min-Chow moderated was called, "Breast Cancer & Access to Care: The Texas State of Affairs." No one really has a clue. The private insurer pointed to the legislature; the public health official discussed the burgeoning workload; the think tank policy person ...just talked. If you asked anyone in the audience what was said the answer very well might have been, "it's a mess." Access to health care for the uninsured in Texas is a rudderless conversation.
What they needed on the panel was someone like Claire.
She arrived at the The Rose to find the test wasn't free, but cost $65.00. She was told that without the $65.00 she couldn't have the test. And instead of a sterotactic biopsy, where a small bit of tissue could be extracted for pathology analysis, the physician on duty that day said it wasn't on the schedule. After a mammogram, and an ultrasound, he said he couldn't see anything but that her breast were "very dense," a diagnostic problem in many younger women. He did add, as he was walking out the door, that she should probably get some "genetic testing."
And that's where it had all stopped when I talked with her yesterday. Nothing else has happened. She applied for Medicaid to find that she made $100 too much per month to qualify. She followed the instructions to apply for a Harris County "Gold Card," following the procedure online, only to find out half-way through that instructions have to be filled out and mailed in or delivered.
In the meantime, she says, the lump is still there.
And yes, I know it's October. We didn't have time to talk pink. We didn't have time.
###
She lives in Harris County, Texas, home of the massive Texas Medical Center, one of the richest, most medically intensive areas in the world. Some 40 institutions make up this city within a city.
Yet according to Shern Min-Chow, co-anchor of CBS-affiliate KHOU-TV in Houston, some 30 percent of Harris County's own residents are uninsured, far from easy access to the Medical Center campuses. That's about 1.2 million people, based on current census data. The national average is 16 percent, Min-Chow told the audience at last week's Seventh Annual Breast Health Summit, presented by the Breast Health Collaborative of Texas.
Women like Claire, with medical issues that are not emergent but ARE pressing, spend days, weeks, even months trying to have one health issue thoroughly addressed. So far it's taken two months to have an appointment at The Rose, Houston's leading facility for breast health services for under-and uninsured women.
First, Claire told me, she needed to have a referral to The Rose from a private physician to have a mammogram. She doesn't have a primary care practitioner, or PCP. So The Rose provided a referral so Claire could be referred back. Then another few weeks elapsed until she could see the doctor for the referral. This physician, in turn, was alarmed to the extent that she recommended and scheduled a stereotactic biopsy for Claire at The Rose. In turn Claire made arrangements to a friend travel to Houston so she could accompany her for the procedure.
That's where our last conversation had ended. Yesterday morning I thought about Claire while I was looking through my notes from the conference, so I dropped her an email. Ironically enough, the panel that Shern Min-Chow moderated was called, "Breast Cancer & Access to Care: The Texas State of Affairs." No one really has a clue. The private insurer pointed to the legislature; the public health official discussed the burgeoning workload; the think tank policy person ...just talked. If you asked anyone in the audience what was said the answer very well might have been, "it's a mess." Access to health care for the uninsured in Texas is a rudderless conversation.
What they needed on the panel was someone like Claire.
She arrived at the The Rose to find the test wasn't free, but cost $65.00. She was told that without the $65.00 she couldn't have the test. And instead of a sterotactic biopsy, where a small bit of tissue could be extracted for pathology analysis, the physician on duty that day said it wasn't on the schedule. After a mammogram, and an ultrasound, he said he couldn't see anything but that her breast were "very dense," a diagnostic problem in many younger women. He did add, as he was walking out the door, that she should probably get some "genetic testing."
And that's where it had all stopped when I talked with her yesterday. Nothing else has happened. She applied for Medicaid to find that she made $100 too much per month to qualify. She followed the instructions to apply for a Harris County "Gold Card," following the procedure online, only to find out half-way through that instructions have to be filled out and mailed in or delivered.
In the meantime, she says, the lump is still there.
And yes, I know it's October. We didn't have time to talk pink. We didn't have time.
###
FRIDAY, SEPTEMBER 30, 2011
"Having breast cancer is massive amounts of no fun." -- Molly Ivins
It's time to upend the ribbon and turn the pink upside down.
October has made me uneasy for a long time.
If you put four women with breast cancer in a circle more likely than not one of them will develop and die of incurable, metastatic disease. Or from the attempt to wrestle devilish cancer cells into a chronic condition, like diabetes or heart disease. But cancer is not like diabetes or heart disease for one obvious reason: chemotherapy, as a way of life, ultimately is not sustainable.
For the other three of us from the circle, the treatment that brought about remission (does anyone say cure?) can leave side-effects that are physical and psychic, not to mention financial. In the past thirteen years I have learned to deal with all but one. The repeated distress of losing that one woman from our circle, the one whose cancer cells were simply uncontrollable, is like losing a limb. Over and over again.
In the meantime, medical sociologists like Gayle Sulik, PhD, in her book Pink Ribbon Blues and sharply observant bloggers like Rachel of The Cancer Culture Chronicles keep raising the curtain on 'pink profiteers' and the 'pinkification' of a difficult disease into something far from the reality most women experience. Money that could be used to fund meaningful research or even funds to directly help affected women is instead diverted into piles of pink "stuff" with the pennies (if that) from those purchases ending up God knows where.
"Breast cancer has made a lot of people very wealthy," Lea Goldman writes in her excellent article,"The Big Business of Breast Cancer." in Marie Claire. Here's she's not razzing on the health industry but the undersided tactics of several large, national breast cancer charities that employ telemarketing services to solicit your funds. From those funds, these "philanthropists" pay themselves handsomely, and oops, sometimes "forget" to make those donations made to the cause they claim to help.
Read Goldman's article side by side with USA Today writer Liz Szabo's "Pink ribbon marketing brings mixed emotions poll finds.," developed from questions added on to an exclusive USAToday/Gallup Poll about President Obama. What stuck out like a sore thumb: more than 80% of the sample said that they had purchased a pink ribbon product.
So is this what breast cancer - or any kind of cancer - awareness means to the majority of Americans now? Purchasing a product? What happened to modifying risk factors that can be addressed or helping assure that underserved populations have the same care that those with insurance do? Isn't that part of awareness, too? Without additional surveys and questions directed specifically at the link between the two (and other factors) we can't know for sure. But I'm not sure that would be far off the mark.
October has made me uneasy for a long time.
If you put four women with breast cancer in a circle more likely than not one of them will develop and die of incurable, metastatic disease. Or from the attempt to wrestle devilish cancer cells into a chronic condition, like diabetes or heart disease. But cancer is not like diabetes or heart disease for one obvious reason: chemotherapy, as a way of life, ultimately is not sustainable.
For the other three of us from the circle, the treatment that brought about remission (does anyone say cure?) can leave side-effects that are physical and psychic, not to mention financial. In the past thirteen years I have learned to deal with all but one. The repeated distress of losing that one woman from our circle, the one whose cancer cells were simply uncontrollable, is like losing a limb. Over and over again.
In the meantime, medical sociologists like Gayle Sulik, PhD, in her book Pink Ribbon Blues and sharply observant bloggers like Rachel of The Cancer Culture Chronicles keep raising the curtain on 'pink profiteers' and the 'pinkification' of a difficult disease into something far from the reality most women experience. Money that could be used to fund meaningful research or even funds to directly help affected women is instead diverted into piles of pink "stuff" with the pennies (if that) from those purchases ending up God knows where.
"Breast cancer has made a lot of people very wealthy," Lea Goldman writes in her excellent article,"The Big Business of Breast Cancer." in Marie Claire. Here's she's not razzing on the health industry but the undersided tactics of several large, national breast cancer charities that employ telemarketing services to solicit your funds. From those funds, these "philanthropists" pay themselves handsomely, and oops, sometimes "forget" to make those donations made to the cause they claim to help.
Read Goldman's article side by side with USA Today writer Liz Szabo's "Pink ribbon marketing brings mixed emotions poll finds.," developed from questions added on to an exclusive USAToday/Gallup Poll about President Obama. What stuck out like a sore thumb: more than 80% of the sample said that they had purchased a pink ribbon product.
So is this what breast cancer - or any kind of cancer - awareness means to the majority of Americans now? Purchasing a product? What happened to modifying risk factors that can be addressed or helping assure that underserved populations have the same care that those with insurance do? Isn't that part of awareness, too? Without additional surveys and questions directed specifically at the link between the two (and other factors) we can't know for sure. But I'm not sure that would be far off the mark.
# # #
Starting Monday "UPENDING PINK" October on #BCSM with Gayle Sulik, PhD, at 9 PM ET. Please join the conversation.
MONDAY, SEPTEMBER 26, 2011
Many of you know about the recent loss of a lovely friend and family member to metastatic breast cancer. She was 55. Her first grandchild is due this January.
The cruelty of cancer is relentless.
My friend had access to great care and the mind-bogglingly expensive 'designer drugs' that did little to stem the tide of her cancer. They didn't improve her quality of life, either. In fact, treatment further weakened an already impaired immune system and ultimately she died of pneumonia after three weeks in the hospital.
At her memorial service this past Friday the Seattle sky was cloudless. Many of us were too warm in fall clothes but there was a lovely patio adjoining the reception area so we stood out there, remembering, laughing, letting tears flow, talking about our dogs and the weather.
There was a box with programs and next to that, another one with pink ribbons and pins.
I hesitated.
The hesitation, in and of itself, infuriated me. I didn't want the politics of cancer to intrude on this quiet, private evening. But that is what a pink ribbon has become: a mixed signal. Where it may have once stood for hope and advancement, it now also represents commercialization and 'branding' (a term I've come to dislike) that has absolutely nothing to do with or for cancer. That simple ribbon, which I wore proudly when diagnosed in 1998, is now seen to mask the darker realities of cancer: treatments that don't work, the sorrow of lives cut short.
But the people who put the ribbons out had no idea about mixed messages or health culture. So I put one on my collar. And as soon as the service was over I left it behind.
Monday, September 26, 2011
The cruelty of cancer is relentless.
My friend had access to great care and the mind-bogglingly expensive 'designer drugs' that did little to stem the tide of her cancer. They didn't improve her quality of life, either. In fact, treatment further weakened an already impaired immune system and ultimately she died of pneumonia after three weeks in the hospital.
At her memorial service this past Friday the Seattle sky was cloudless. Many of us were too warm in fall clothes but there was a lovely patio adjoining the reception area so we stood out there, remembering, laughing, letting tears flow, talking about our dogs and the weather.
There was a box with programs and next to that, another one with pink ribbons and pins.
I hesitated.
The hesitation, in and of itself, infuriated me. I didn't want the politics of cancer to intrude on this quiet, private evening. But that is what a pink ribbon has become: a mixed signal. Where it may have once stood for hope and advancement, it now also represents commercialization and 'branding' (a term I've come to dislike) that has absolutely nothing to do with or for cancer. That simple ribbon, which I wore proudly when diagnosed in 1998, is now seen to mask the darker realities of cancer: treatments that don't work, the sorrow of lives cut short.
But the people who put the ribbons out had no idea about mixed messages or health culture. So I put one on my collar. And as soon as the service was over I left it behind.
Monday, September 26, 2011
SUNDAY, SEPTEMBER 11, 2011
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