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Articles of Interest for Breast Cancer Patient Advocates
Curated by Susan Zager
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Pink + - The IBC Network Foundation

Pink + - The IBC Network Foundation | Breast Cancer Advocacy | Scoop.it

"In the aftermath of breast cancer awareness month in the US it is a good time to reflect on where we are in terms of progress in the fight again this disease. I would like to give my personal view here.

In the plus column, I believe, belong some of the achievements of the pink movement, which include raising awareness to a tremendous level for the most common kinds of breast cancer in women, removing much of the stigma of having such cancers for those women, and mobilization of resources for research. I don’t wish to go into the excesses of the pink movement here – others have done so much more thoroughly and eloquently than I could, for example Peggy Orenstein in her powerful piece “Our Feel-Good War on Breast Cancer” earlier this year

I do want to dig a little deeper on the issue of research funding. When you look at what the US National Cancer Institute spends on research in different cancers vs the number of cases in the US, you can argue (as I have on my blog) that breast gets about $200M more than would be expected purely on incidence. I hazard that this comes from the expansion of the number of scientists interested in breast cancer research who then submit and win more grants, and that this is in turn due to additional funding from foundations. If you are a budding new cancer researcher, breast cancer is a good field to enter as funds are relatively abundant. In addition to this direct effect of the breast cancer NGOs, their effectice advocacy has no doubt also positively influenced government spending. I believe significant credit goes to those responsible.

In the minus column, again for me, comes the fact that the loud and proud pink in the media makes it very hard to discuss some of the less recognized and less pleasant aspects of breast cancer. It obscures that important awareness work remains to be done, and that research funds need to be deployed more broadly and more inclusively."

Susan Zager's insight:

In this post Dr. Oliver Bogler takes an important look at breast cancer advocacy today. The pink movement needs to step up efforts so that research funds and advocacay is more proportionate to the important issues, types and incidences of breast cancer. He explains why there should be more funding and awareness for Metastatic Breast Cancer, Inflamatory Breast Cancer, Male Breast Cancer and Triple Negative Breast Cancer.  

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Susan Zager's curator insight, December 3, 2013 6:46 PM

In this post Dr. Oliver Bogler takes an important look at breast cancer advocacy today. The pink movement needs to step up efforts so that research funds and advocacay is more proportionate to the important issues, types and incidences of breast cancer. He explains why there should be more funding and awareness for Metastatic Breast Cancer, Inflamatory Breast Cancer, Male Breast Cancer and Triple Negative Breast Cancer.  

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CureToday.com: Article - "Non-Traditional Methods to Pay for Cancer Care Pays Off"

CureToday.com: Article - "Non-Traditional Methods to Pay for Cancer Care Pays Off" | Breast Cancer Advocacy | Scoop.it

"Part of the fight against cancer is finding a way to cover the enormous cost of treatment. Many people immediately think of direct costs, such as insurance deductibles and medications. However, indirect costs, such as those for travel and lodging, additional child care, modifications to the home or workplace, and other daily living expenses, are often substantial—and may present challenges for patients and families who are already under tremendous financial pressure.

Unfortunately, these expenses often pile up over an extended period of time due to the long-term nature of most cancer treatment, and they usually doesn’t subside once treatment is over. There are alternative ways to access established avenues of financial support, as well as fresh funding strategies made possible by social media and innovative fundraising websites.

“I think one of the most important things is, don’t ignore the bills that are coming in. Be proactive and reach out, you may be surprised at what might be offered to you,” says Erin Moaratty, chief of mission delivery at the Patient Advocate Foundation (PAF), a nonprofit that helps patients navigate the paths to financial assistance."

Susan Zager's insight:

For more information about PAF go to: http://www.patientadvocate.org/


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(Im)patient Science » Partnering For Cures

(Im)patient Science » Partnering For Cures | Breast Cancer Advocacy | Scoop.it

"The breast cancer advocacy movement has been very successful in increasing awareness and raising funds; however, this has also led to fragmentation, competition, and dilution of the overall effort. Two leaders who have dedicated their professional lives to the eradication of breast cancer have crossed the political divide to lead a collaboration focusing on documenting the collateral damage of treatment or the unspoken "cost of the cure." Both having experienced cancer, Susan and Nancy will share the impatience that drove them to join forces in a project to include all in the breast cancer advocacy community and reinvigorate the movement toward a future without breast cancer."

Susan Zager's insight:

This is the video of Nancy Brinker and Dr. Susan Love at Partnering for Cures discussing their great collaboration focusing on the "Collateral Damage" of breast cancer treatment.

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Heather Swift's curator insight, December 2, 2013 4:03 PM

This is the video of Nancy Brinker and Dr. Susan Love at Partnering for Cures discussing their great collaboration focusing on the "Collateral Damage" of breast cancer treatment.

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The Chemical Safety Improvement Act Falls Short: Open Letter to Congress

The Chemical Safety Improvement Act Falls Short: Open Letter to Congress | Breast Cancer Advocacy | Scoop.it

"I am writing to express serious concerns about the Chemical Safety Improvement Act, in advance of tomorrow's hearing, S. 1009 Chemical Safety Improvement Act.

Breast Cancer Action is a national, feminist grassroots education and advocacy organization that works to address and end the breast cancer epidemic. Breast Cancer Action is committed to reducing involuntary exposures to toxins that are linked to increased risk for breast cancer.

Breast Cancer Action recognizes that the current congressional interest in the Toxic Substances Control Act (TSCA) represents an important opportunity to pass landmark cancer prevention legislation. After years of work, along with our partners, for strong regulation of toxic chemicals we are heartened to see widespread agreement that TSCA is a top priority for the current Congress.

However, we recognize that some proposed changes to current law do not adequately protect public health. We believe that the Chemical Safety Improvement Act (CSIA) as it is currently written falls short of the reforms that are needed to stop breast cancer before it starts. This bill in its current form not only lacks key requirements to protect people and our planet from toxic chemicals, but if implemented, could actually weaken the few strong toxic chemical regulations that currently exist."


Susan Zager's insight:

According to Breast Cancer Action key areas of concern in refernce to the Chemical Safety Improvement Act include:


    • Burden of Proof: the CSIA places the burden of proof for chemical safety on government regulators by tasking the Environmental Protection Agency (EPA) with proving that a chemical is toxic, instead of tasking industry with proving a chemical is safe. This maintains a system that does NOT work for our health. A strong chemical regulation bill will require that chemical manufactures bear the responsibility to sufficiently prove chemical safety.


    • Precautionary Principle: the CSIA ensures that the status quo of assuming chemicals are innocent until proven guilty is maintained. A strong chemical safety bill should require that products are proven safe before they enter the marketplace - not after they are already in our homes and our bodies.



    • Protection for Heavily Impacted Communities: the CSIA does not specifically address the needs of communities heavily impacted by chemical exposures. We need provisions to reduce toxic chemicals in "hot spot" communities and this should be central to any proposed chemical regulation.
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Heather Swift's curator insight, December 2, 2013 4:04 PM

According to Breast Cancer Action key areas of concern in refernce to the Chemical Safety Improvement Act include:

 

Burden of Proof: the CSIA places the burden of proof for chemical safety on government regulators by tasking the Environmental Protection Agency (EPA) with proving that a chemical is toxic, instead of tasking industry with proving a chemical is safe. This maintains a system that does NOT work for our health. A strong chemical regulation bill will require that chemical manufactures bear the responsibility to sufficiently prove chemical safety.

 

Precautionary Principle: the CSIA ensures that the status quo of assuming chemicals are innocent until proven guilty is maintained. A strong chemical safety bill should require that products are proven safe before they enter the marketplace - not after they are already in our homes and our bodies.

 

 

Protection for Heavily Impacted Communities: the CSIA does not specifically address the needs of communities heavily impacted by chemical exposures. We need provisions to reduce toxic chemicals in "hot spot" communities and this should be central to any proposed chemical regulation.
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Wellpoint Drops Coverage For Some Women With Breast Cancer

Wellpoint Drops Coverage For Some Women With Breast Cancer | Breast Cancer Advocacy | Scoop.it

"Yesterday, an investigation by Reuters revealed that Wellpoint routinely drops coverage of women with breast cancer.  According to the report, Wellpoint used a computer algorithm that automatically targeted every policy holder recently diagnosed with breast cancer. The software triggered a fraud investigation and the company would then search for any pretext—say a late payment or a reportedly missing form—to drop them.

Unfortunately this type of behavior on the part of an insurer isn’t unusual. Each year tens of thousands of Americans lose their health insurance after being diagnosed with an expensive or life-threatening illness. The practice, known as “recission,” has been well documented by government regulators for years. Last year, a congressional committee said that Wellpoint was one of the worst offenders.

But what’s particularly troubling in this case is that Wellpoint is run by woman. Angela Braly has been its chief executive for the last five years and had to have known that this was going on under her watch. And it is puzzling that the company would target breast cancer patients when Braly has championed women’s health issues and has received accolades for improving the care and treatment of women with breast cancer."

Susan Zager's insight:

Women losing their health insurance in the US as shown in this article by Wellpoint as a result of breast cancer is awful, especially in treatment. The fact that this investigation shows that women with breast cancer were targeted to find late payments or any reason to throw them off is very upsetting. 

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Tambre Leighn's curator insight, November 12, 2013 4:47 PM

Disappointing...to say the least. 

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Does The Komen Foundation’s Pink Ribbon Campaign Actually Help Fight Breast Cancer?

Does The Komen Foundation’s Pink Ribbon Campaign Actually Help Fight Breast Cancer? | Breast Cancer Advocacy | Scoop.it

Last year, the fast-food chain KFC joined a national campaign to raise money and awareness by selling pink-branded buckets of fried chicken. This year, the White House was turned pink for breast cancer awareness month. The symbolic pink ribbon for breast cancer awareness can be seen everywhere, slapped onto products like lipstick or the butt of a Smith & Wesson gun. The marketing of the pink ribbon is hugely successful — but has it actually decreased breast cancer rates?

According to American Cancer Society, one in eight women will be diagnosed with the disease in her lifetime, and 232,340 new cases of invasive breast cancer will be diagnosed in women this year. Despite the ever-pervasive pink message and donations supporting breast cancer research, medical experts are pushing for a change, raising the issue of whether carcinogens in some household products should have a public warning — like cigarettes.

Earlier this year, Sen. Kirsten Gillibrand (D-N.Y.) led a charge to address the hidden carcinogens in products. Armed with research for the National Institute of Environmental Health Sciences (NIEHS), she tried to “beef up” the 2008 Breast Cancer and Environmental Research Act with new reforms to the Safe Chemicals Act.

Susan Zager's insight:

This article highlights the problem that there are many pink ribbon products being sold for "breast cancer awareness" that actually have carcinogens in them that are known to cause breast cancer. 

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Susan Zager's curator insight, November 2, 2013 3:06 PM

This article highlights the problem that there are many pink ribbon products being sold for "breast cancer awareness" that actually have carcinogens in them that are known to cause breast cancer. 

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Recent Initiatives to Improve the Patient-Centeredness of Quality Assessment

Recent Initiatives to Improve the Patient-Centeredness of Quality Assessment | Breast Cancer Advocacy | Scoop.it

"Since passage of the Patient Protection and Affordable Care Act in 2010, there has been an increased drive in the United States to increase the patient-centeredness of care delivery and clinical research.1-3 In practical terms, this means including direct patient input in the design of studies, clinical practice guidelines, and implementation programs, as well as assuring that research results and emerging clinical care models focus on outcomes that matter to patients and play a role in their decision-making.4

In oncology, there is a long tradition of including patient input. For example, it is standard for patients to serve as members of National Cancer Institute study sections, as members of ASCO guideline panels, and as participants on cooperative group committees. Our field has been particularly progressive in this regard.

One area, however, where patient input has been scant is in the measurement of quality of care. Patients are typically not involved in determining how to measure or report quality. It is rare for patient questionnaires to be used in quality assessment programs to measure the effects of treatments on how patients feel or function. 

Although patients are sometimes asked to report on their satisfaction or experiences with care as related to efficiency or communication (for example, through questions in the Consumer Assessment of Healthcare Providers and Systems or “CAHPS” surveys), the ability to improve patients’ symptoms, quality of life, or functional status is seldom assessed. We do not measure whether patients’ pain, nausea, or diarrhea is being managed adequately. This is surprising given the importance of symptom management and quality of life in cancer care and in cancer treatment decision-making."

Susan Zager's insight:

The article states:

"One area, however, where patient input has been scant is in the measurement of quality of care. Patients are typically not involved in determining how to measure or report quality. It is rare for patient questionnaires to be used in quality assessment programs to measure the effects of treatments on how patients feel or function. 

Although patients are sometimes asked to report on their satisfaction or experiences with care as related to efficiency or communication (for example, through questions in the Consumer Assessment of Healthcare Providers and Systems or “CAHPS” surveys), the ability to improve patients’ symptoms, quality of life, or functional status is seldom assessed. We do not measure whether patients’ pain, nausea, or diarrhea is being managed adequately. This is surprising given the importance of symptom management and quality of life in cancer care and in cancer treatment decision-making."

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Patient Quality of Life

Patient Quality of Life | Breast Cancer Advocacy | Scoop.it
Palliative Care: The Cancer Patient's PerspectiveThe American Cancer Society (ACS Can) is launching a new campaign to improve the quality of life for cancer patients. Watch their short video and then TAKE ACTION by asking your Members of Congress to support this legislation.
Susan Zager's insight:

You can take action in the US by following this link and filling this easy form out to write to your representatives in Congress. Go to: https://secure3.convio.net/acscan/site/Advocacy?cmd=display&page=UserAction&id=9936


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We Can't Waste Another October: End Pinkwashing and Stop Cancer Before It Starts

We Can't Waste Another October: End Pinkwashing and Stop Cancer Before It Starts | Breast Cancer Advocacy | Scoop.it

"We are more than halfway through October and pink ribbon products abound. Even the bottle cap for a non-breast cancer prescription from Walgreens comes with a pink ribbon on it. Each year, my outrage grows over companies that put pink ribbons on absolutely anything in the name of breast cancer, and this year here they are again: cleaning agents, groceries, toilet paper, office supplies, beauty products, apparel, alcohol. You name it; odds are you can find a pink ribbon option.

Few people realize that Breast Cancer Awareness Month (BCAM) was launched by Astra Zeneca, a pharmaceutical company that sells cancer treatments on the one hand and carcinogenic pesticides on the other. So BCAM has all along been one big marketing campaign -- arguably the most successful marketing campaign of the 20th century. This is why at Breast Cancer Action, we call October "Breast Cancer Industry Month," the month when corporations make money professing how much they care about breast cancer by selling pink ribbon products.

Let's be very clear: corporate giving benefits the corporate bottom line. Research by Cone Communications, a Boston consulting firm and pioneer of cause marketing, showed 79% of consumers would likely switch to a brand that supports a good cause, all things being equal."

Susan Zager's insight:

This article takes an important look at how marketing of Breast Cancer Awareness Month (BCAM) is big business.for corporations, products and the drug companies. Many of these products have known toxic chemicals in them, yet they are sold with pink ribbon marketing. If you are outraged you can sign Breast cancer Action's petition calling an end to pinkwashing once and for all at: http://org2.salsalabs.com/o/6098/p/dia/action3/common/public/?action_KEY=15464


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Breast Cancer Fund: Dare Revlon to Go Beyond the Pink

Breast Cancer Fund: Dare Revlon to Go Beyond the Pink | Breast Cancer Advocacy | Scoop.it
ACTION ALERT: Tell Revlon to take cancer-causing chemicals out of our products now!
Susan Zager's insight:

This is worth signing telling Revlon to take cancer causing agents out of their products. It's pre-written and all you have to do is out your name and address in.

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Cost of breast cancer: Treatment is costly, regardless of insurance status

Cost of breast cancer: Treatment is costly, regardless of insurance status | Breast Cancer Advocacy | Scoop.it

REEPORT — Beth McWhirter, a social worker at the FHN Leonard C. Ferguson Cancer Center in Freeport, knows how scary a cancer diagnosis can be and the financial stress associated with it, regardless of insurance status.

Help is most often available for people who are uninsured, but people with limited insurance coverage are typically hit the hardest with out-of-pocket expenses.
“The team of people here — the doctors, nurses and social workers — really get to know patients. If (patients) have a problem with finances, they refer them to me, but some people self-refer because they’re just afraid the word ‘cancer’ means bankruptcy,” said McWhirter.
Kim Franklin thought she knew about cancer until doctors told her she had the disease and costly bills associated with treatment started piling up.
Franklin, now 43, received a breast cancer diagnosis in 2005 after finding a lump in her right breast. The Rockford resident had just given birth to a daughter a few weeks earlier.
In addition to the mammogram, the biopsy and the doctor visits, Franklin had a lumpectomy, eight rounds of chemotherapy and 30 courses of radiation to rid her body of cancer. She was insured through her husband’s job, but the health insurance didn’t cover 100 percent of the costs.


Susan Zager's insight:

This article is referring to costs in the US. We will quote some of the figures in the article and recommend reading the whole article for ways to get help with expenses.

"Specific information about treatment costs is limited, medical experts say, because the charges vary based on how early the cancer is found, what course of treatment is chosen and insurance coverage. Charges can vary widely within the same city.

For example, the median charges — list charges from the hospital, not necessarily what a patient would pay out of pocket — for a lumpectomy from Oct. 1, 2011, to Sept. 30, 2012, were $15,977 at SwedishAmerican Hospital, $12,779 at FHN Memorial Hospital, $10,170 at OSF Saint Anthony Medical Center and $7,128 at Rockford Memorial Hospital, according to the Illinois Department of Public Health. The median charge for the state was $12,782."

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Susan Zager's curator insight, October 21, 2013 1:28 PM

This article is referring to costs in the US. We will quote some of the figures in the article and recommend reading the whole article for ways to get help with expenses.

"Specific information about treatment costs is limited, medical experts say, because the charges vary based on how early the cancer is found, what course of treatment is chosen and insurance coverage. Charges can vary widely within the same city.

For example, the median charges — list charges from the hospital, not necessarily what a patient would pay out of pocket — for a lumpectomy from Oct. 1, 2011, to Sept. 30, 2012, were $15,977 at SwedishAmerican Hospital, $12,779 at FHN Memorial Hospital, $10,170 at OSF Saint Anthony Medical Center and $7,128 at Rockford Memorial Hospital, according to the Illinois Department of Public Health. The median charge for the state was $12,782."



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AACR's 2013 Cancer Progress Report Showcases Immunotherapy : Oncology Times

AACR's 2013 Cancer Progress Report Showcases Immunotherapy : Oncology Times | Breast Cancer Advocacy | Scoop.it

"WASHINGTON—At a news briefing at the National Press Club here featuring cancer researchers and cancer survivors, the American Association for Cancer Research released its most recent Cancer Progress Report. This third such report from the association highlights progress in immunotherapy, noting that the U.S. Food and Drug Administration has approved two immunotherapies, sipuleucel-T and ipilimumab, and that there are many others in clinical testing."

Susan Zager's insight:

"While hailing the approval of 11 new drugs from Sept. 1, 2012 to July 31, 2013 to treat a variety of cancers, along with three new uses for previously approved anti-cancer drugs and three new imaging technologies, AACR CEO Margaret Foti, PhD, sounded a note of alarm about whether the strong pace of progress can be maintained. The sobering reality, she said, is that the nation's ability to “continue making life-saving progress is in peril due to the most serious funding crisis in decades.”

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Write a letter to ensure progress on the reporting of clinical trials is not lost

Write a letter to ensure progress on the reporting of clinical trials is not lost | Breast Cancer Advocacy | Scoop.it

"If you live in an EU member state we need your help this week. Will you write to your country’s health minister to ask your Government to support the good progress towards clinical trial transparency in the draft Clinical Trial Regulation in debates in Europe next month.

Thanks to the letters you sent to MEPs last May some very good additions were made to the draft Regulation. These new parts of the law would mean that all clinical trials taking place in Europe would have to be registered and summary results published within a year of its ending. We need to make sure that these additions make it into the final law, and we don’t have much time as the next stage of the process starts in the first week of November.

The next stage is a series of ‘trilogue’ discussions between the European Parliament, Commission and Council. We understand that the European Council hasn’t decided its position yet. The Council is made up of representatives of all of the individual Governments of European countries so your Government’s position is very important. There’s no time to lose – please write to your health minister this week and urge them to support the good additions to the Clinical Trials Regulation.

Susan Zager's insight:

If you live in the EU +All Trials needs your help. There's a sample letter including details of the specific parts of the Regulation that they need Governments to support, and details of how to contact your health minister.

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The Good of the Many—An AMA House of Delegates Report

The Good of the Many—An AMA House of Delegates Report | Breast Cancer Advocacy | Scoop.it

"I just returned from participating in the American Medical Association (AMA) House of Delegates (HOD) as a representative of ASCO. I, along with Drs. Chris Nunnink and Barb McAneny and ASCO staff Ms. Jennifer Brunelle and Ms. Monica Tan, attended the interim session. This session has a similar format to the larger more expanded session usually held in June. Practice issues are discussed, resolutions are debated, and decisions are made that will shape AMA policy. This particular meeting was held in Washington, DC, in an attempt to also link AMA delegate visits with members of Congress.

As always, issues, reports, and resolutions were discussed covering a vast array of topics. That is always the case. The topics invariably have to do with legislation (regional or national), education (medical and public), organizational policy, and/or specialty specific concerns. This session tends to be a more abridged version of the annual HOD, but the problems faced are far from abridged.

In addition, we (ASCO) coordinate a Cancer Caucus. This is a forum that provides a time to address ongoing oncology centric concerns that are or should be discussed. All interested parties including surgery, palliative medicine, radiation therapy, and gyn oncology, among others, attend the forum, which has quickly developed its own momentum."

Susan Zager's insight:

According to Edward P. Balaban, DO, FACP, the writer of this article, "There was real sense of urgency to get this done now. The window is closing, particularly with the election year fast approaching. This meeting, like so many before, brought out many (and sometimes very vocal) varying opinions. Ultimately, and although far from perfect, the HOD realizes the “good of the many”—it is a good feeling."

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The Importance of Doctor Communication for the Metastatic Breast Cancer Patient

The Importance of Doctor Communication for the Metastatic Breast Cancer Patient | Breast Cancer Advocacy | Scoop.it

"Options International presents Advocacy in Action, bringing together the influential leaders of the cancer advocacy community to address core issues that impact metastatic breast cancer patients today.


Joining Selma Schimmel as co-moderators are Elyse Spatz Caplan, Director of Programs & Partnerships at Living Beyond Breast Cancer, Shirley Mertz, Board Member, Metastatic Breast Cancer Network, Maria Wetzel, a research advocate who works with the National Breast Cancer Coalition and Musa Mayer, an advanced breast cancer advocate who runs the website, AdvancedBC.org."
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Tambre Leighn's curator insight, November 27, 2013 5:50 PM

Selma Schimmel is a leader in the cancer community tackling the topic of the unique needs of patients with metastatic breast cancer.  Every doctor/patient communication experience is important but for those who must "co-exist," as described by Selma, with metastatic disease, requires a different approach.

 

Great video on the range of doctor/patient relationships patients may want and challenges such as geographical location, finances and more.

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There's another side to the Amy Robach breast cancer story

There's another side to the Amy Robach breast cancer story | Breast Cancer Advocacy | Scoop.it

"First, I sincerely wish ABC’s Amy Robach good health and good outcomes after she chose to have a mammogram on the air and, after it showed that she had cancer, further chose to have bilateral mastectomy surgery. These are difficult choices and difficult times for her.

But almost every single one of the hundreds of news stories and web articles about her case have been shallow and incomplete.

There are some problems with her announcement – both in terms of the inferences made to other women and in terms of journalism ethics.

First, the message to other women.

I haven’t seen any report of what her mammogram actually showed.  And what did the biopsy that followed the mammogram show?

Normally, I’d say that’s none of our business.

But when a network TV personality says the mammogram saved her life, that changes the discussion.  If you’re going to use that national television platform to announce your choices and to make claims about what a mammogram did for you and how it might inspire other women, then we should at least know more about the pathology of your cancer – something, as I already said, I normally would say is none of our business."

Susan Zager's insight:

Gary Shwitzer says in the article, "The national television platform is still influential – and is used, in my opinion, unethically when it delivers an advocacy, opinion-based message on what should be a highly-individualized, evidence-based, shared decision-making discussion between patient and doctor.

Please don’t write to me accusing me of being anti-screening.  That will only show that you didn’t read this piece.  This is not anti-screening.  This is about discussing the known tradeoffs between potential benefits and potential harms in mammography.  And it’s about journalists sticking to facts, not offering opinions, advice, or their own personal stories in ways that are meant to influence others’ decisions or even in ways that might potentially have that impact."

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Susan Zager's curator insight, November 13, 2013 4:59 PM

Gary Shwitzer says in the article, "The national television platform is still influential – and is used, in my opinion, unethically when it delivers an advocacy, opinion-based message on what should be a highly-individualized, evidence-based, shared decision-making discussion between patient and doctor.

Please don’t write to me accusing me of being anti-screening.  That will only show that you didn’t read this piece.  This is not anti-screening.  This is about discussing the known tradeoffs between potential benefits and potential harms in mammography.  And it’s about journalists sticking to facts, not offering opinions, advice, or their own personal stories in ways that are meant to influence others’ decisions or even in ways that might potentially have that impact."

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Home » Partnering For Cures

Home » Partnering For Cures | Breast Cancer Advocacy | Scoop.it
Partnering for Cures. Nov 3-5. NYC
Innovation. Collaboration. Solutions. Convening >800 leaders to focus on speeding up medical research & development.
Susan Zager's insight:

There is a meeting going on Nov 3 -5 in New York called "Partnering for Cures." Here you can see information about the conference which brings 800 leaders focusing on speeding up medical research. There is a tape showing the opening plenery of the conference for those that are interested in this important conference. 

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Tambre Leighn's curator insight, November 12, 2013 4:37 PM

Wonderful to see the call for cooperation the late Laura Ziskin, one of the founder's of Stand Up 2 Cancer gave early voice to.  Her vision for cooperation in research was inspired by the model of feature film production where experts and leaders in different crafts and departments work together to create the magic of movies. 

 

Streamlining the research process and focusing on solutions and cooperation is a truly inspired approach.

Heather Swift's curator insight, December 2, 2013 4:05 PM

Nov 3 -5 in New York called "Partnering for Cures." Here you can see information about the conference which brings 800 leaders focusing on speeding up medical research. There is a tape showing the opening plenery of the conference for those that are interested in this important conference.

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6 People Signed Up for Health Insurance on Day 1 of Federal Website: Memo

6 People Signed Up for Health Insurance on Day 1 of Federal Website: Memo | Breast Cancer Advocacy | Scoop.it

"FRIDAY, Nov. 1 (HealthDay News) -- Just six people enrolled for health insurance through the federal HealthCare.gov website the first day of operation on Oct. 1, just-released Obama administration documents show.

By the end of the second day, 248 people had enrolled in the controversial insurance program, which has been plagued by computer problems that virtually crippled the system in the first days of October, the documents show.

The "war room notes" were prepared by the Center for Consumer Information and Insurance Oversight, and reported by the Associated Press.

The informal memos were released this week by the Republican-chaired House Oversight Committee, which is investigating the problems surrounding the unveiling of the federal insurance exchange, ABC News reported."

Susan Zager's insight:

The federal HealthCare.Gov website continues to have problems for everyone trying to use it. Some people who have insurance have been told their plans have been cancelled and are not being "grandfathered" in because they say the plans violate "health reform law." The article mentions that they hope the problems with the web site will be fixed by the end of November. 

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ASCO Urges Obama Administration to Provide Guidance on Patient Access to Clinical Trials

ASCO Urges Obama Administration to Provide Guidance on Patient Access to Clinical Trials | Breast Cancer Advocacy | Scoop.it

"ASCO joined more than 50 organizations in urging the Obama administration to issue regulations or guidance before January 2014 to ensure health plans implement an important provision of the Affordable Care Act (ACA) that would remove a critical obstacle to patients interested in participating in research.

In a jointly signed letter to the U.S. Department of Health and Human Services (HHS) and Department of Labor (DOL), ASCO lent its voice to a call for clear federal guidance on coverage of routine medical costs for individuals participating in approved clinical trials, as required under section 2709 of the Public Health Service Act—a provision of the Patient Protection and ACA that goes into effect on January 1, 2014.

A recent HHS and DOL announcement effectively leaves the implementation details of this provision up to the states, which is likely to produce a patchwork of uneven coverage that will confuse patients and their health care providers and affect timely access to potentially life-extending research."

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Watch "IOM: Something Alarming Has Happened to Cancer Care" Video

Watch "IOM: Something Alarming Has Happened to Cancer Care" Video | Breast Cancer Advocacy | Scoop.it

"In this video, Peter B. Bach, MD, Center for Health Policy and Outcomes, Memorial Sloan-Kettering Cancer Center, discusses the findings of the recent Institute of Medicine (IOM) Report: Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis."

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Heather Swift's curator insight, December 2, 2013 4:06 PM

"In this video, Peter B. Bach, MD, Center for Health Policy and Outcomes, Memorial Sloan-Kettering Cancer Center, discusses the findings of the recent Institute of Medicine (IOM) Report: Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis."

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Breast Cancer: Awareness, Activism & 'Pinkwashing'

Breast Cancer: Awareness, Activism & 'Pinkwashing' | Breast Cancer Advocacy | Scoop.it

"Are you seeing pink? October is Breast Cancer Awareness Month which means pink ribbons and pink everything are showing up everywhere - NFL players sport pink accessories, there are pink cereal boxes on store shelves and pink newspapers in the mailbox. But is that pink can of soup really making a difference to eliminate breast cancer? Critics call it "pinkwashing" and say it's time to move past the superficial awareness campaigns for what is a complicated and devastating disease. They say that visibility and fundraising alone isn't the answer to ending breast cancer and that this sort of marketing oversimplifies the disease with detrimental effects. We'll explore the nexus of disease, marketing, awareness and research in what some call our "feel good war on breast cancer" and learn about some of the politics and controversies over prevention and treatments."

Susan Zager's insight:

This is really worth listening to and has some fantastic guests.

Guests

Dr. Marilyn Sarow - Professor of Mass Communication at Winthrop University and Co-Author of Cancer Activism: Gender, Media, and Public Policy
Dr. Richard White - Chief of the Division of Surgical Oncology at Carolinas HealthCare System’s Levine Cancer Institute
Dr. Gayle Sulik - Medical Sociologist, founder of the Breast Cancer Consortium, and author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health
Laura Nikolaides - Research & Quality Care Program Director, National Breast Cancer Coalition

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Natalie Palmer's curator insight, November 3, 2013 2:17 PM

This article explores the "feel good war on breast cancer" and more...

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Think Before You Pink: Toxic Time is Up!

Think Before You Pink: Toxic Time is Up! | Breast Cancer Advocacy | Scoop.it

Take a stand to protect all of us from toxic chemicals that are making us sick, because the manufacturers of pink ribbon products certainly won’t. Right now, landmark legislation that could significantly impact cancer prevention is within reach.

It’s time to turn our outrage over pinkwashing to action and ban the toxins that make us sick in the first place. Sign the petition below. Demand an end to toxic pinkwashing. Demand chemicals be proven safe before they enter the marketplace—and our bodies. We will deliver your signature directly to the Senators in charge of shepherding chemical reform legislation.

Susan Zager's insight:

Reminding you again this is worth signing to let your Senators know we need chemical reform legislation.

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A Shockingly Small Amount Of Money From Pink NFL Merchandise Sales Goes To Breast Cancer Research

A Shockingly Small Amount Of Money From Pink NFL Merchandise Sales Goes To Breast Cancer Research | Breast Cancer Advocacy | Scoop.it

"It's October and the NFL is once again covered head-to-toe in pink accessories and equipment as part of the league's Breast Cancer Awareness initiative.

While fans can also purchase pink clothing and accessories to support the cause, a shockingly small amount of the fans' money is actually going towards cancer research.

According to data obtained from the NFL by Darren Rovell of ESPN, the NFL "takes a 25% royalty from the wholesale price (1/2 retail), donates 90% of royalty to American Cancer Society."

In other words, for every $100 in pink merchandise sold, $12.50 goes to the NFL. Of that, $11.25 goes to the American Cancer Society (ACS) and the NFL keeps the rest. The remaining money is then divided up by the company that makes the merchandise (37.5%) and the company that sells the merchandise (50.0%), which is often the NFL and the individual teams.

Then consider that only 71.2% of money the ACS receives goes towards research and cancer programs."



Susan Zager's insight:

In the end, after everybody has taken their cut from the NFL pink merchandise, the amount going towards cancer research ends up being 8.01% If you want to donate money for breast cancer, donate directly to organiztions that show your money is going to get to where you want it designated. 

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Susan Zager's curator insight, October 18, 2013 5:37 PM

In the end, after everybody has taken their cut from the NFL pink merchandise, the amount going towards cancer research ends up being 8.01% . If you want to donate money for breast cancer, donate directly to organiztions that show your money is going to get to where you want it designated. 

Natalie Palmer's curator insight, November 3, 2013 2:20 PM

Enough with the pinkwashing already!

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The Cost of Living

The Cost of Living | Breast Cancer Advocacy | Scoop.it

"On August 3, 2012, the Food and Drug Administration approved a new cancer drug called Zaltrap as a safe and effective treatment for patients with advanced colon cancer. The approval was based on a large-scale clinical trial that showed that Zaltrap, given in combination with three previously approved drugs to patients who had failed initial therapy, extended median overall survival by 42 days.

No one knew the price of Zaltrap at that point, but Leonard Saltz, who heads the gastrointestinal oncology group at Memorial Sloan-Kettering Cancer Center, had a sense of what was coming. Zaltrap’s effectiveness, in his opinion, was almost identical to that of Avastin, an FDA-approved cancer drug that had also been targeted at that same patient population. Several weeks earlier, Saltz had traveled to Chicago to inflict a little premonitory sticker shock on his medical colleagues. He reviewed the recent clinical results of both Zaltrap and Avastin when used as a “second line” treatment, after initial treatment had failed. As Saltz reminded the other oncologists, Avastin was modestly effective as a second-line treatment—it extended median overall survival by 42 days, the same as Zaltrap—but it cost about $5,000 a month and, like Zaltrap, would have to be taken for many months to achieve that modest clinical benefit. The overall cost was so high that Saltz devoted the end of his talk to a back-of-the-envelope calculation, delivered via PowerPoint, that recast the question in terms of health-care costs: If you extended the 42 days survival to a year, “what is the cost of Avastin for one year of human life saved?”

The answer was astounding, even to doctors who have grown inured to the zero-gravity economics of cancer pharmaceuticals. As Saltz worked his way through slide 73 of 78, he arrived at the bottom line: $303,000.

Susan Zager's insight:

This artcle is very long but it's worth the read. The cost of drugs in the USA are getting so out of hand. It makes a lot of sense that there needs to be a an important conversation concerning the fact that there has to be a limit on how high the prices can go. At the same time when a doctor can save a cancer patients life with a drug that allows quality of life, cancer patients need these life saving drugs without the cost killing them. 

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Profiles in Oncology Social Media: Matthew S. Katz, MD, @subatomicdoc

Profiles in Oncology Social Media: Matthew S. Katz, MD, @subatomicdoc | Breast Cancer Advocacy | Scoop.it

"Matthew S. Katz, MD, a radiation oncologist in Lowell, Massachusetts, is a prolific user of social media to pursue a particular professional goal. By interacting with patients that he will never meet, he gains insights into how best to communicate with patients he encounters in his office.

A third-generation physician—his grandfather was a general practitioner and his father is a psychiatrist—he knows that most physicians are drawn to medicine because they want to help people. But he notes that because the practice of radiation oncology focuses so much on technology and biology, he believes patient communication sometimes takes a backseat to technical expertise—to the possible detriment of the patient that the physician is trying to help.

“The way that physicians and other health care providers frame diseases and health issues is extremely important in how people will understand both the illness the patient may have and the way in which they can cope with what are sometimes very difficult decisions,” he said.

So while some physicians use Twitter and other social media primarily to network with professional colleagues or stay current with new research findings, Katz says he is on the lookout for patient questions and comments that reveal what they are thinking and feeling and what information they need from their oncologists."

Susan Zager's insight:

Matthew Katz, MD,  a radiation oncologist in Lowell, Massachusetts, talks about the use of social media in oncology. He frequently joins the #BCSM Community Tweetchats on Twitter, held Monday nights at 9PM EST. While his patients come first, social media interaction enhances his work as a doctor because it helps him understand more about patients' experiences. It's so exciting that Drs are joining patients on social media, and they are all learning so much from listening to each other. 

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Susan Zager's curator insight, October 22, 2013 6:28 PM

Matthew Katz, MD,  a radiation oncologist in Lowell, Massachusetts, talks about the use of social media in oncology. He frequently joins the #BCSM Community Tweetchats on Twitter, held Monday nights at 9PM EST. While his patients come first, social media interaction enhances his work as a doctor because it helps him understand more about patients' experiences. It's so exciting that Drs are joining patients on social media, and they are all learning so much from listening to each other.