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Articles of Interest for Breast Cancer Patient Advocates
Curated by Susan Zager
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ASCO Urges Congress to Enact SGR Repeal Legislation

ASCO Urges Congress to Enact SGR Repeal Legislation | Breast Cancer Advocacy | Scoop.it

"ASCO this week urged congressional leaders to enact the SGR Repeal and Medicare Provider Payment Modernization Act of 2014 (S 2000/HR 4015), bicameral and bipartisan legislation introduced last week by leaders of the House Energy and Commerce, House Ways and Means, and Senate Finance Committees, before the current Medicare physician payment "bridge" expires on March 31.

ASCO has long-advocated for repeal of the flawed sustainable growth rate (SGR) formula used to set Medicare physician payments and adoption of a more rational, reliable payment system that reflects the reality and cost of today's medical practice environment. In a letter to congressional leadership, ASCO urges lawmakers to repeal the SGR and enact permanent reforms before the short-term payment "bridge" that replaced the scheduled 23.7 percent payment cut with a 0.5 percent update expires at the end of March.

"We ask that you consider this legislation and urge you not to pass another short-term patch, which will only exacerbate the instability in oncology practices around the country," said ASCO President Clifford A. Hudis, MD, FACP.

ASCO believes the SGR repeal legislation represents significant progress toward that goal. Bill highlights:

• Repeals the SGR
• Provides a 0.5 percent payment update for five years
• Emphasizes quality improvement
• Supports the use of clinical data registries
• Streamlines current federal incentive programs
• Encourages provider participation in alternative payment models, including patient-centered medical homes"

Susan Zager's insight:

ASCO encourages its members and everyone concerned about this to contact their lawmakers by going to http://capwiz.com/asco/home/

and ask them to support S. 2000/H.R. 4015

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New Breast Cancer Surgical Guidelines Can Reduce Unnecessary Procedures and Patient Costs

New Breast Cancer Surgical Guidelines Can Reduce Unnecessary Procedures and Patient Costs | Breast Cancer Advocacy | Scoop.it

"DALLAS--(BUSINESS WIRE)--New surgical guidelines announced today by the Society of Surgical Oncology (SSO) and the American Society for Radiation Oncology (ASTRO) have the potential to significantly reduce unnecessary breast surgeries, improve patient outcomes and empower women to make important decisions with their doctors about their breast cancer treatment. The new guidelines are the result of a Komen-funded comprehensive review of the value of removing large amounts of breast tissue beyond the “margins” or area around the edge of a cancerous breast tumor.

SSO and ASTRO noted that about 25 percent of breast cancer patients are asked to return to the operating room following a lumpectomy to obtain a wider margin by removing more normal tissue around the cancer, known as “re-excision” of the breast.

Whether this second procedure is beneficial in reducing the risk of local recurrence, and how much tissue should be removed, has been a topic of ongoing debate in the medical community. To answer this question, Komen provided funding to Dr. Monica Morrow of the SSO to convene leaders in surgical oncology, radiation oncology, medical oncology, pathology and patient advocacy, including representation from Komen’s Advocates in Science (AIS) member Peggy Johnson. The panel convened in 2013 to determine the optimal margin width in breast-conserving surgery for stage I and II invasive breast cancer.

The findings announced today show that evidence does not support the routine removal of larger amounts of healthy breast tissue beyond the edge of the tumor for any women, including those with aggressive triple negative breast cancer. SSO and ASTRO are releasing the guidelines to doctors and oncologists today in hopes of influencing clinical practice.

“One of our most important goals is ensuring that breast cancer patients get the right treatment for them, and can make informed choices about their care. We hope these guidelines can reduce anxiety, unnecessary re-excisions and even patient treatment costs. They should become an important part of the discussion between a woman and her medical team,” said Komen President and CEO Judith A. Salerno, M.D., M.S.     

Susan Zager's insight:

Peggy Johnson, a Komen patient advocate in science, commended the panel for its thoughtful review of the issue. “There are so many decisions that a patient has to make after a breast cancer diagnosis. Our goal as patient advocates is to ensure that patients are informed and consulted, and that they are making decisions based on the best evidence available. I was honored as a patient advocate to serve on this panel, and look forward to more collaborations for the benefit of women and men facing breast cancer.” To see the new guidelines go to: http://surgonc.org/margins-study


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'I wish I had breast cancer': Charity's slogan causes outrage

'I wish I had breast cancer': Charity's slogan causes outrage | Breast Cancer Advocacy | Scoop.it

"A campaign to raise awareness of pancreatic cancer has sparked outrage after the ads showed patients wishing they had more common types of the disease such as breast and testicular.

The 'envy' campaign was devised by the charity Pancreatic Cancer Action to highlight the poor survival rates of the disease.

The crux of the message is that the disease has a five-year survival rate of just three per cent - compared to 85 per cent of breast cancer patients and 97 per cent of men with testicular cancer. 

In the TV ad, genuine pancreatic cancer patients are seen saying 'I wish I had testicular cancer' and 'I wish I had breast cancer' as information about symptoms and survival rates appears on the screen.

But critics have slammed the controversial campaign as 'horribly insensitive' and 'repugnant'.



Susan Zager's insight:

This ad is extremely  offensive. No cancer is a good cancer and too many people are dying from breast cancer. Pancreatic Cancer Action needs to get their point about early detection across in a much different way. 

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Social Media and Breast Cancer: A Call for Greater Diversity

Social Media and Breast Cancer: A Call for Greater Diversity | Breast Cancer Advocacy | Scoop.it

"The embers are still glowing from the social media firestorm Emma and Bill Keller ignited over the past few weeks. The husband-and-wife journalists each wrote articles about Lisa Bonchek Adams, a young mom diagnosed with metastatic breast cancer in 2012.

Emma Keller, writing online for the Guardian, questioned Adams’ use of social media to publicly chronicle her cancer treatment. (The piece was subsequently withdrawn.)  Bill Keller’s NYT Op-Ed ran less than a week later and essentially portrayed Adams as a dying woman grasping at straws, suggesting her treatment equates to “endless ‘heroic measures’ that may or may not prolong life but assure the final days are clamorous, tense and painful.”

The Kellers obviously don’t understand metastatic breast cancer. The average metastatic breast cancer patient may receive eight or 10 different treatment regimens in sequence. Contrary to the Kellers’ representations, Adams isn’t on her deathbed. What Bill Keller describes as “heroic measures” are what the 155,000 of us with metastatic breast cancer would call “business as usual.”

The Keller/Adams controversy generated a lot of attention and traffic for all involved. But if it shows us the power of social media it also exposes some gaping deficiencies. A cursory look at those blogging, tweeting or otherwise commenting on this issue and metastatic breast breast cancer in general reveals a distinct absence of diversity."

Susan Zager's insight:

This is a very important problem that needs attention. Too many Americans are dying from breast cancer (108 women a day), and there is a higher number of black women dying from this awful disease. The black community is not represented enough in mainstram and social media as well as the metastatic breast cancer community. 


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ASCO Urges Congress to Move Forward on SGR Repeal Legislation

ASCO Urges Congress to Move Forward on SGR Repeal Legislation | Breast Cancer Advocacy | Scoop.it

"The American Society of Clinical Oncology (ASCO) is urging Congressional leadership to repeal  the sustainable growth rate (SGR) formula before the current extension to physician reimbursement rates expires at the end of March.

Three congressional committees with jurisdiction over Medicare have passed separate SGR repeal bills that have similar frameworks, but differ in key ways. In a letter to Senate Majority Leader Harry Reid, House Speaker John Boehner, Senate Minority Leader Mitch McConnell, and House Minority Leader Nancy Pelosi, ASCO expressed support for the provisions that would further enhance the quality of oncology care. The Society also specifically recommended that the final bill include the threshold framework for quality incentives, set positive annual payments updates for physician payments, and include The Cancer Protection Act (H.R. 1416) to address sequestration’s disproportionate effect on payment for chemotherapy treatments."

Susan Zager's insight:

To read the letter sent by ASCO to Senate Majority Leader Harry Reid, House Speaker John Boehner, Senate Minority Leader Mitch McConnell, and House Minority Leader Nancy Pelosi go to: http://www.asco.org/sites/www.asco.org/files/asco_sgr_letter_to_leadership_january_2014.pdf


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Lawmaker Fighting To Continue Breast Cancer Screening For Low Income Women - CBS Denver

Lawmaker Fighting To Continue Breast Cancer Screening For Low Income Women - CBS Denver | Breast Cancer Advocacy | Scoop.it

"DENVER (CBS4) – A Colorado lawmaker is fighting to continue breast cancer screening and treatment for low income women.

“On Sept. 21, 1988, I was diagnosed with breast cancer,” said Colorado Rep. Dianne Primavera.

The odds weren’t good, and it was a low point in her life.

“I was 38 at the time and I was told by every doctor I talked to I wouldn’t live past five years,” said Primavera.

However, she beat the odds and proved the doctors wrong.

“Today is my birthday. I’ve lived 20 years beyond what the doctors felt I had in terms of lifespan,” said Primavera.

She has survived a total of four cancers.

“I have had cervical cancer, breast cancer, basal cell and squamous cell cancer,” said Primavera.

Primavera wants to extend the Medicaid Breast and Cervical Cancer Prevention and Treatment Program. She wants five more years of coverage for low income women"

Susan Zager's insight:

For more Information about The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) go to: http://www.cdc.gov/cancer/nbccedp/about.htm


Also go to: http://www.acscan.org/content/how-does-your-state-do-up-when-it-comes-to-breast-cervical-screening-funding/


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ASCO in Action Brief: Value in Cancer Care

ASCO in Action Brief: Value in Cancer Care | Breast Cancer Advocacy | Scoop.it

"Warren Buffet, the famed investor, once said, “Price is what you pay. Value is what you get.”

The ongoing U.S. debate over health-care reform has made one thing clear: The rate at which health-care costs are growing will, if unchecked, limit our country’s growth and possibly bankrupt us. Projections from the federal government indicate that health-care spending will account for nearly one-fifth of the U.S. economy in 2021.[1] Cancer drugs, in particular, are a concern because they currently comprise eight out of the top ten most expensive drugs covered by Medicare. Although cancer is in total responsible for only five percent of current health-care expenditures, cancer care costs are expected to grow from $125 billion in 2010 to a projected $175 billion (using 2010 dollars) in 2020—a 40 percent increase. [2]

The rising cost of cancer care impacts many stakeholders involved in our complex health-care system, including providers, payers, manufacturers, and, most importantly, patients. If the economic costs of healthcare in general, and high-quality cancer care in particular, continue to rise unchecked, it will be less and less affordable for an increasing number of Americans.

At the same time that the costs of healthcare are being scrutinized, and perhaps even as a direct result of this scrutiny, there is a growing, widespread recognition that high-cost care does not necessarily translate into high-quality care or improved outcomes. A well-established fact is that per capita spending on healthcare in the United States far exceeds that in all other developed countries by a factor of two or more. This is juxtaposed against life expectancies for Americans as compared with citizens in developed nations, and suggests there is a great deal of wasted expense in the system.

As the demand to curb health-care costs increases, a broad societal 

Susan Zager's insight:

This article is well worth the read and refers to ASCO examining the high cost of healthcare, value, and how to approach the problems. The President of ASCO, Dr. Clifford Hudis said, "As the organization representing the nation’s cancer doctors, we have a responsibility to speak out on behalf of our patients against the unsustainable rising cost of cancer care—and to work with government agencies, insurance companies, pharmaceutical companies, patient groups and policymakers to help limit its future growth."

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Former New York Times Editor, Wife Publicly Tag-Team Criticism of Cancer Patient. Ugh.

Former New York Times Editor, Wife Publicly Tag-Team Criticism of Cancer Patient. Ugh. | Breast Cancer Advocacy | Scoop.it

"Back in 2011, I was researching a story about the under-appreciated toll of foodborne illness. Through social media, I met Lisa Bonchek Adams, a mom of three in Connecticut who had suffered an extended, bad bout with antibiotic-resistant Campylobacter. She was a great interview — thoughtful, funny, frank — and she had an extraordinary story: She was a survivor of breast cancer and aggressive treatment for it — double mastectomy, preventative removal of her ovaries and chemotherapy — but, she said candidly, foodborne illness had made her sicker than her cancer treatment ever did.

After confirming her story via physicians and factcheckers, I used it as the opening of a long investigative piece that was published in June 2012. After that, we stayed in touch on Facebook and Twitter, and I watched as her already substantial following expanded, responding to that same forthright voice that I had found so compelling. Within a few months, though, her fortunes changed — and subsequently, so did her online circle. In October 2012, Adams learned that her cancer had returned and metastasized elsewhere in her body. It was judged Stage IV, incurable. She wrote:

I am at the beginning of what treatments are available for me.

Don’t you count me out yet. Far from it.

Just because this disease can’t be cured doesn’t mean there isn’t a lot of life left in me; there is still so much for me to do.

In the 2 years since, I’ve watched in admiration as Adams has spoken directly and realistically about her treatments, family relationships, symptoms, hopes and fears. She is uniquely not a treat-at-all-costs cancer warrior, not a Pinktober booster, not a believer in miracle cures. 

Susan Zager's insight:

In this piece Maryn McKenna explains why Emma and Bill Keller got it wrong as well as the beautiful evolution of Lisa Adams blog that resonates with so many people. My favorite mantra from Lisa is when she says, "Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.” Lisa Adams has a tremendous amount of people following her blog and Tweets and it's great to see so many stories that reflect the great job Lisa is doing as she writes about her treatments, family relationships, symptoms, hope, fears and beautiful poetry.  

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Tambre Leighn's curator insight, January 15, 2014 12:33 AM

"Judge not, lest ye be judged."  A virtual shitstorm hit social media this week when The Guardian posted an article by Emma Keller (with a curious, subsequent article by her husband, Bill Keller, in the NY Times) who failed to realize the power of the cancer community tribe before deciding who should tweet how many times about what. 

 

The healing power of sharing our stories, as cancer survivors or caregivers, is experienced by the writer and the audience that CHOOSES to follow them.  The operative word is choice.  We understand the difference between journalism and sharing stories via social media and, in fact, it seems it is the Kellers who blurred the line of appropriate journalistic ethics and guidelines, not the cancer community, not Lisa Adams who deserves nothing, in my opinion (note, Kellers, I said "opinion"), but our deepest respect for her courage and inspiration.

 

Be warned, people...if you mess with our heroes and heroines, we will push back and you will know it.  Emma Keller's article is no longer available while The Guardian purports to be investigating the journalistic standards of the piece.  Now that a clear message has been sent, however, as a community we must also be mindful of not responding in a Keller-like fashion.  There are lessons to be learned here but that is best done through observation, not judgment...through curiousity and inquiry.  Finally, let's end with the name that truly deserves our time and energy...Lisa Boncheck Adams.

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Feds add breast cancer drug mandate | BenefitsPro

Feds add breast cancer drug mandate | BenefitsPro | Breast Cancer Advocacy | Scoop.it

"The U.S. Department of Health and Human Services is adding breast cancer prevention to the basic women’s health preventive services package.

The Patient Protection and Affordable Care Act requires non-grandfathered major medical carriers and group health plans to cover the package of services without imposing deductibles, co-payments, coinsurance amounts or other cost-sharing requirements on the patients.

The PPACA preventive services package mandate applies to self-insured group health plans as well as to traditional plans.

HHS Secretary Kathleen Sebelius said today in a blog entry that HHS had already posted breast cancer prevention drug guidance. At press time, the guidance hadn’t appeared.

The breast cancer prevention drug mandate will include coverage for tamoxifen or raloxifene for women who appear to be at high risk for developing breast cancer.

Sebelius added the mandate based on a recommendation from a panel at the U.S. Preventive Services Task Force.

In September, the task force published a recommendation giving use of the cancer prevention drugs a B for women at high-risk of developing cancer. For other women, the task force gave use of the drugs a grade of just D.

A grade of B means that “there is high certainty that the net benefit is moderate or there is moderate certainty that the net benefit is moderate to substantial.”

The task force says women at high risk are women who seem to have at least a 3 percent risk of developing breast cancer in the next five years."

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Tambre Leighn's curator insight, January 11, 2014 2:34 PM

Yes, yes, yes!  More steps toward prevention and removing barriers to preventative care - a proactive vs. reactive approach. Love it!

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Austin advocate Andrea Sloan dies | KXAN.com

Austin advocate Andrea Sloan dies | KXAN.com | Breast Cancer Advocacy | Scoop.it

"AUSTIN (KXAN) - After a seven-year battle with cancer, Andrea Sloan died Wednesday evening.

In a Facebook post to the Andi's Army page, Sloan's mother, Karen Sloan, said her daughter died after complications brought on by pneumonia.

Sloan was diagnosed with ovarian cancer seven years ago, at age 37. When her cancer returned in August, Sloan asked California-based drug manufacturer, BioMarin, to grant her compassionate use of their experimental drug, BMN 673, developed specifically to fight her type of genetic ovarian cancer, as well as genetic, or BRCA 1, breast cancer. 

But BioMarin repeatedly denied Sloan the drug, citing concerns about safety and effectiveness.

BMN 673 is one of nearly a dozen in a class of drugs called PARP inhibitors currently in clinical trials. Sloan's doctors at MD Anderson believe this class of drugs is her best hope, since all other traditional treatments have been exhausted.  But BioMarin would not grant Sloan compassionate use, even though their drug is headed in to Phase 3 trials and has been highly touted by company executives for its results in the first two phases of clinical trials".

Susan Zager's insight:

We are so sad that Andea died. She was a BRCA1 Activist. compassionate use reformer and died way too young. We must continue the fight for compassionate use. 

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Tambre Leighn's curator insight, January 3, 2014 11:00 AM

Self-advocacy is not selfish.  It can lead to creating a movement and change for millions of people.  Cancer Survivors, caregivers and the families and loved ones of survivors have an impact when they join together, as Andi's Army did, led by one amazing woman willing to fight for the opportunity to try every possible approach to stop cancer in its tracks. 

 

When we find something that isn't working as well as it could, we have the choice to complain about it, give up or we can turn it into a mission to transform the situation and create a solution.

 

May Andrea's family and her army find solace in the impact Andrea had on creating positive change for those needing treatment now and in the future.  RIP, Andrea Sloan.

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Funding Cuts Threaten Future Progress Against Cancer

Funding Cuts Threaten Future Progress Against Cancer | Breast Cancer Advocacy | Scoop.it

"ASCO’s recently issued report on Clinical Cancer Advances for 2013 highlights dozens of research breakthroughs reported this year that will improve the lives of people living with cancer and set the stage for the next generation of discoveries that will emerge in the coming years. But despite these advances, the sober reality is that 1.6 million Americans will be diagnosed with cancer this year and the number of new cancer cases will increase by nearly 40% by 2030, due largely to the aging of our population. One of every four deaths in the U. S. is caused by cancer, which this year will claim the lives of nearly 580,000 Americans, making it the second leading cause of death in the country. But the progress reported this year in Clinical Cancer Advancesis cause for hope and optimism that the hundreds of diseases we call cancer are coming under control.

Due largely to our nation’s investment in cancer research over the last four decades, people diagnosed with cancer are living longer and better than ever before and more are being cured. Cancer-related deaths continue to decline in the U.S., by 1.5% per year over the last decade, and a person diagnosed with cancer today has a better than two-thirds chance of being alive five years from now. Scientific breakthroughs in cancer are occurring at a breathtaking pace and are being translated into new drugs and devices that benefit patients more quickly than ever before. Yet this progress against cancer is in real jeopardy of being stalled just when the opportunities and need are greatest."


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Guidelines for Effective Advocacy - ASCO in Action

Guidelines for Effective Advocacy - ASCO in Action | Breast Cancer Advocacy | Scoop.it

"Get to know your legislators (and their staff!): It is helpful to have a good understanding of your members of Congress. Learn about the issues that are most important to them before attempting to reach out to them. Learn about their backgrounds and previous experiences, their current positions on issues that matter to you (as well as those issues that are most important to them), and their current committee assignments. Members of Congress have to juggle a multitude of issues every day, and often can’t keep up on the details of every piece of legislation. You can help educate them and their staff. Getting to know staff members that cover health care issues is important; they will influence the position your legislators will take on your issue.

Learn about the legislative process: Understanding how a bill becomes a law is crucial when advocating. Get to know the key Committees involved in health care issues, who the major players are, and the political climate surrounding your issues and where you issue is in the legislative process. Has legislation been introduced? Has there been a hearing? A vote? If so, know if and how your member of Congress was involved.

Become an expert on the Issue: Before making contact with your legislators, understand the arguments for and against it the issues you are planning to raise with them.  Make sure you consider anything that could influence support from your legislator for your position.  For instance, will it have a significant financial impact? How many people would it affect and how? Keep in mind that compelling data can be a very persuasive.

Tell your story: Why is the issue important to you? One personal story can be more influential than a large number of impersonal form letters/emails or phone calls. When contacting your legislators, in person, by phone or by letter/email – it’s crucial to include personal and relevant information on why the issue is important to you. If you are sending a form email (often provided by ASCO and other organizations), it is imperative to explain who you are and why the issue is important to YOU – not to anyone else. Remember, you are his or her constituent.

Always be polite and respectful: It’s important to recognize that Members of Congress and their staff are very busy, so when meeting with them, be cordial, concise, and be sure to say thank you (even if they don’t agree with your position). Always be honest about the issue – never provide false information about your issue or about the opposition. Always follow up with a thank you and an offer to be a resource on cancer issues in the future.

Collaborate: Seek out individuals and groups that could be or already are interested in your issue. Be creative, a broad range of interests that can be represented makes for a very strong coalition.

Susan Zager's insight:

This is great advice for patient advicates and a great organization to join so that you can take action. 

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Tambre Leighn's curator insight, December 22, 2013 10:53 AM

Often cancer survivorship clients I coach find a need to invest energy in something beyond their disease so as to not feel defined by it. Some find a project or interest completely unrelated to have a "cancer break."  Others dive deep into the world of cancer to make a difference.  Here are some great guidelines on advocacy and how to put your energy to effective use.

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Biomarkers of Vaccine Immunity Identified

Biomarkers of Vaccine Immunity Identified | Breast Cancer Advocacy | Scoop.it

"Testing the efficacy of vaccines in clinical trials takes years, even decades. Yet challenging infections like HIV, malaria and dengue are striking today. To speed up vaccine testing, scientists at the Emory Vaccine Center have established a goal of creating a “vaccine gene chip.”

 
This device could read the activity of all the genes in the genome in white blood cells within a few days of administration of a test vaccine. Reading such molecular signatures would rapidly help predict the ability of that vaccine to stimulate the immune system and protect against disease.
 
Now scientists led by Bali Pulendran, PhD have taken an important step toward making such a chip, by comparing the molecular signatures induced by five very different vaccines in the immune systems of human volunteers. The results are published online in Nature Immunology.
 
Pulendran, senior author of the paper, is Charles Howard Candler professor of pathology and laboratory medicine at Emory University School of Medicine and a researcher at Yerkes National Primate Research Center. Co-first authors of the paper are postdoctoral fellow Shuzhao Li, PhD, assistant professor of infectious diseases Nadine Rouphael, MD, and postdoc Sai Duraisingham, PhD.
 
Two of the vaccines they tested in the current study are aimed at stimulating immunity against Neisseria meningitidis, a bacterium that can cause life-threatening meningitis or sepsis."
 
Susan Zager's insight:

Because the National Breast Cancer Coalition is working on a Vaccine to prevent breast cancer, we felt that this article may be of interest to everyone interested in preventing the disease.

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ASCO Joins Think Tank to Chart Cancer Disparities

ASCO Joins Think Tank to Chart Cancer Disparities | Breast Cancer Advocacy | Scoop.it

"A new partnership of leading national cancer organizations met this week to discuss the current state of cancer health disparities research. The American Association for Cancer Research (AACR), the American Cancer Society (ACS), the American Society of Clinical Oncology (ASCO), and the National Cancer Institute (NCI) initiated this first-ever collaboration to guide future research that better addresses the disparities in healthcare access and outcomes that exist within many populations.

Some racial and ethnic minorities in the United States are more likely to develop cancer, less likely to access high-quality cancer care, and more likely to die from cancer when compared to others and to whites. The death rate for cancer among African American males, for example, is 33 percent higher than among white males, and for African American females, it is 16 percent higher than among white females.[i]

"We have made great progress in documenting disparities in cancer, however, we still face significant challenges in reducing their impact on outcomes," said ASCO President Clifford A. Hudis, MD, FACP. "We must move from describing the problems to more quickly identifying and implementing solutions to address the racial and economic-based disparities that continue to affect many cancer patients and families in the United States. ASCO is honored to participate in this unique partnership that will ultimately help bring higher quality cancer care to all individuals."

Disparities also affect individuals of low socioeconomic status, particularly uninsured individuals. Even with the expansion in coverage resulting from the Affordable Care Act, the Congressional Budget Office estimates that 30 million individuals will still be uninsured in 2019, making accessing quality cancer care difficult for many.[ii]"

Susan Zager's insight:

According to the article, "Cancer mortality rates are decreasing for most minorities, but absolute death rates continue to be higher," said NCI Deputy Director Doug Lowy, MD. "It is important to understand the sources of these disparities and to study ways to reduce them. We are enthusiastic about the new partnership with ACS, AACR and ASCO, and in pursuing its goals."

This groundbreaking initiative will build on current research findings and provide a model for cooperation among various research groups. The participating organizations hope to reach a diverse audience, including governmental and non-governmental funders and all members of the cancer community."

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Major Cancer Advances in 2013 Highlight Importance of Federal Funding

Major Cancer Advances in 2013 Highlight Importance of Federal Funding | Breast Cancer Advocacy | Scoop.it

"About one-third of the most important clinical advances in cancer last year were made possible at least in part through federal funding, according to ASCO’s annual report on progress in cancer, published in the Journal of Clinical Oncology.1

Significant Declines in Funding

The report, “Clinical Cancer Advances 2013,” describes 76 major advances in prevention, treatment, and survivorship chosen for their potential to improve patient care and quality of life. Of the 76 advances, 26 were studies directly supported by federal dollars. These include many genomic and molecular profiling studies, several large prevention and screening trials, and early trials of promising agents for aggressive or treatment-resistant cancers.

That so many of the advances were federally funded points to the urgency of restoring funds for publicly supported research, said Richard L. Schilsky, MD, Chief Medical Officer at ASCO. Declines in federal funding due to sequestration and other measures have already slowed current research and could have a severe impact on future studies, especially on those that are least likely to be undertaken by the private sector.

“Many important questions can be answered only through publicly supported research, which is in real jeopardy,” Dr. Schilsky said."

Susan Zager's insight:

Federally funded research in the US has had major cutbacks.. According to ASCO, "The ASCO report includes a policy section that discusses the impact of sequestration on National Institutes of Health (NIH)-funded studies and strongly recommends increased funding: It calls for $32 billion for NIH in next year’s budget, of which $5.2 billion would go to the National Cancer Institute (NCI)." With all the advances in research, clinical trials, genomic studies, prevention and treatment, with cutbacks in federal funding, if the money doesn't come from the private sector all of this work will be in jeopardy.

To see the ASCO report go to: http://www.cancerprogress.net/clinical-cancer-advances-2013. 

For the report on breast cancer go to: http://www.cancerprogress.net/clinical-cancer-advances-2013-breast-cancer


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Tambre Leighn's curator insight, February 16, 2014 6:09 PM

We need to continue to press for funding increases in research.  Organizations like http://www.acscan.org/ are a great way to get educated on how to support advocacy for more funding.

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Myths - World Cancer Day

Myths - World Cancer Day | Breast Cancer Advocacy | Scoop.it

"World Cancer Day 2014 (4 February 2014) focuses on Target 5 of the World Cancer Declaration: Reduce stigma and dispel myths about cancer, under the tagline “Debunk the myths”.

World Cancer Day is a chance to raise our collective voices in the name of improving general knowledge around cancer and dismissing misconceptions about the disease. From a global level, we are focusing our messaging on the four myths above. In addition to being in-line with our global advocacy goals, these overarching myths leave a lot of flexibility for members, partners and supporters to adapt and expand on for their own needs."

Susan Zager's insight:

Today is World Cancer Day 2014. For more information on what you can do follow the links. Also check out the full magazine at: http://uicc.faveeosites.com/world-cancer-day-news#/web?sort=date


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Cancer Genes, Promiscuity, and the National Debt

Cancer Genes, Promiscuity, and the National Debt | Breast Cancer Advocacy | Scoop.it

"There is no doubt that this is a halcyon period in oncology. The unraveling of the genome has been tremendously important, and finally has helped us to move treatment selection from an era of rational empiricism to one of refined, molecular prognostication.

In the care of breast cancer, the impact of our understanding of BRCA1 and BRCA2, and of the genes that predict response to agents targeting HER2/neu is unquestioned. Similarly, in colorectal cancer, application of our understanding of thymidylate synthase and dihydropyrimidine
dehydrogenase and their relationship to efficacy and toxicity of the fluoropyrimidines is clear.  There are innumerable examples of important genomic predictive and prognostic applications in the hematologic
malignancies, using well standardized techniques.

Two pharmaceutical companies approached the U.S. Food and Drug Administration (FDA) requesting a restriction of labeling of their anti–epidermal growth factor targeted therapies to those that had wild-type KRAS expression because of the lack of response among tumors with mutated genes. There is also exciting information about the relevance of ALK for a subset of lung cancers."

Susan Zager's insight:

This article brings out many important points that need to be addressed with gentic testing.  There is a need for rational thinking, speed, regulation, standardization, and making sure we don't repeat the same mistakes. Derek Raghaven, MD said, "I am very supportive of the importance of learning how to apply and implement routine genetic testing... I just hope that, as a community, we increase the level of rational thinking about how to do this well, and that the government involves real experts before setting up their system of oversight and regulation."

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ASCO Holds Leadership Summit to Address Value in Cancer Care, Cost of Cancer Drugs and Technologies

ASCO Holds Leadership Summit to Address Value in Cancer Care, Cost of Cancer Drugs and Technologies | Breast Cancer Advocacy | Scoop.it

"The American Society of Clinical Oncology (ASCO) yesterday convened a leadership summit with pharmaceutical representatives, insurance payers, patient advocates, and physicians to initiate a dialogue on the challenge of defining value in cancer care. This meeting was held amid growing concerns about the sustainability of continued increases in the costs of new drugs and technologies used in the diagnosis and treatment of cancer.

While costs are rising throughout the healthcare system, the trend is especially pronounced in cancer care:  annual costs are projected to rise from $125 billion in 2010 to $175 billion 2020 (in constant dollars), with the costs of many new cancer drugs and technologies a significant—but not the only—contributing factor.

ASCO held the “Summit on Optimizing High Value Cancer Care: Addressing the Cost of Drugs and Novel Technologies” to initiate a dialogue among key stakeholders with the ultimate goal of seeking potential solutions that will sustain and accelerate innovation, and promote increased patient access while reining in costs and enhancing value in cancer care.

The invitation-only, day-long event featured presentations that focused on increasing the affordability of cancer drugs and technologies—from patient, provider, payer, industry, and regulatory perspectives—and concluded with a robust discussion on innovative patient-centered approaches for ensuring high-quality, high-value  cancer care, and a plan for stakeholder groups to continue working collaboratively on this issue.

 

Susan Zager's insight:

According to the article:
"Building on a long-standing commitment to foster high-quality, evidence-based care, ASCO has launched a new strategic initiative to promote value in cancer care. Under the leadership of its Value in Cancer Care Task Force, ASCO is working to ensure that oncologists have the skills and tools needed to assess relative value of therapies and use these in discussing treatment options with their patients; that patients will have ready access to information that assists them in selecting high value treatment that meets their unique needs; and that providers have a clear method for defining and assessing value of cancer treatment options. (Read more about the ASCO Value Initiative.) ASCO is also an active participant in the American Board of Internal Medicine’s "Choosing Wisely" campaign, develops and promotes clinical practice guidelines, and conducts an extensive program in cancer care quality measurement and improvement. ASCO also published a patient booklet to help people with cancer talk with their healthcare providers about understanding and managing the costs of care, and connect them additional sources of support and assistance."

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Congress Approves Omnibus Spending Bill

Congress Approves Omnibus Spending Bill | Breast Cancer Advocacy | Scoop.it

"President Obama recently signed a bipartisan omnibus spending package, which eases across-the-board spending cuts known as sequestration in fiscal years (FY) 2014 and 2015 and provides some level of certainty to the federal budget for the next two years. The bill provides the National Institutes of Health (NIH) with a funding level of $29.9 billion in FY2014, a $1 billion (3.5 percent) increase over FY2013, post-sequester levels. However, the new funding level still falls more than $700 million short of restoring the $1.6 billion that was cut in March 2013 when sequestration took effect. Included in the NIH number is $4.923 billion for the National Cancer Institute (NCI), a $144 million (2.9 percent) increase over the FY2013 baseline.  

The omnibus bill reflects the realities of divided power in Washington and a desire by both Democrats and Republicans for an election-year respite after three years of budget wars. The spending deal funds federal agencies for the remainder of FY2014 and finalizes details of a framework crafted from the bipartisan budget deal struck in December when Congress agreed to partially repeal the sequester and restore funding to domestic agencies, which had already absorbed cuts from the sequester.  The December deal was negotiated by House Budget Chairman Rep. Paul Ryan (R-WI) and Senate Budget Committee Chairman Patty Murray (D-WA) and set maximum spending levels at $1.012 trillion for the FY2014—and $1.014 trillion in FY2015." 


Susan Zager's insight:

As the article says:

"Despite an increase in the FY2014 omnibus bill, the NIH budget remains in jeopardy, and the medical research advocacy community must continue to explain the value of research in saving and improving lives and the significant economic benefit it provides to our nation. With appropriators already having received their maximum spending number for FY2015 under the budget agreement, the next couple of months provide an important window of opportunity to press for additional funds for NIH."


To take action go to: http://capwiz.com/aacr/issues/alert/?alertid=61314206&PROCESS=Read+More

 

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Tambre Leighn's curator insight, January 25, 2014 5:07 PM

Another place where advocacy makes a difference...speak up and help us preserve and expand funding for cancer and survivorship research, studies, treatment and other services.

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Federally Funded Cancer Research | ASCO.org

Federally Funded Cancer Research | ASCO.org | Breast Cancer Advocacy | Scoop.it

"Federal funding for cancer research has remained flat for more than a decade, and when adjusted for inflation, funding has actually decreased. National Institutes of Health (NIH) Director Francis Collins, MD, recently called 2013 the “darkest ever” year for agency funding. ASCO is raising the alarm about continuing erosion of cancer research funding and urging the federal government to take bold new action to ensure the pace of progress is not stalled. Click on the headlines below to learn more.

Cancer Progress in Jeopardy: Stories From the Front Lines: In a new series, ASCO is exploring what’s happening on the front lines in the laboratory and the clinic due to the shrinking federal funding for cancer research and clinical trials. 

“What Brilliant Minds Are We Losing?”The budget sequestration in March 2013 forced many research programs to cut staff and narrow their research topics. Here’s how it impacted a breast cancer research project led by Dr. Robert Clarke, PhD, DSc, dean for research at Georgetown University Medical Center and co-director of the Breast Cancer Program at the Lombardi Comprehensive Cancer Center in Washington, DC.

Share Your Story! ASCO wants to hear your story about how the budget cuts at NIH are affecting your research. Email publicpolicy@asco.org.

Federally Funded Cancer Research Educational Series: As part of an extensive effort to educate and mobilize its membership to call for a renewed national investment in federally funded cancer research, ASCO has developed an educational series of articles that explores the decade-long decline in federal funding for cancer research – and why this decline must be reversed.

Source: One Voice Against Cancer

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Susan Zager's insight:

We are looking forward to the followup from ASCO on how the budget cuts at NIH are affecting research. This decline has to be reversed. 

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What does compassion sound like?

What does compassion sound like? | Breast Cancer Advocacy | Scoop.it

"Good to see you. I'm sorry. It sounds like you've had a tough, tough, week.”  Spoken by a doctor to a cancer patient, that statement is an example of compassionate behavior observed in a new study.

The researchers believe they are the first to systematically pinpoint and catalogue compassionate words and actions in doctor-patient conversations. By breaking down the dialogue and studying the context, scientists hope to create a behavioral taxonomy that will guide medical training and education.

“In health care, we believe in being compassionate but the reality is that many of us have a preference for technical and biomedical issues over establishing emotional ties,” said senior investigator Ronald Epstein, MD, of the University of Rochester Medical Center in New York. Epstein is a national and international keynote speaker and investigator on mindfulness and communication in medical education.

His team recruited 23 oncologists from a variety of private and hospital-based oncology clinics in the Rochester, New York area. The doctors and their stage III or stage IV cancer patients volunteered to be recorded during routine visits. Researchers then analyzed the 49 audio-recorded encounters that took place between November 2011 and June 2012, and looked for key observable markers of compassion. The study was published in Health Expectations (2013; doi:10.1111/hex.12160).

In contrast to empathy—another quality that Epstein and his colleagues have studied in the medical community—compassion involves a deeper and more active imagination of the patient's condition. An important part of this study, therefore, was to identify examples of the three main elements of compassion: recognition of suffering, emotional resonance, and movement toward addressing suffering."

Susan Zager's insight:

To see the study related to this article go to: http://onlinelibrary.wiley.com/doi/10.1111/hex.12160/abstract


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Six cancer centers to share $540 million research gift

Six cancer centers to share $540 million research gift | Breast Cancer Advocacy | Scoop.it

"In one of the largest-ever donations to cancer research, Ludwig Cancer Research of New York City announced today that it is contributing $540 million to try to resolve continuing mysteries about how cancer starts, spreads and can be thwarted.

The unrestricted money for six cancer research centers established by earlier Ludwig donations is intended as a final gift from the philanthropy founded by the late Daniel Ludwig, a shipping magnate and real estate owner, which has now contributed $2.5 billion globally to cancer research.

The six centers, launched in 2006 with initial grants from Ludwig, are each expected to invest their $90 million and spend the annual income from those investments – about $4 million to $5 million – to fund basic scientific research.

Each of the six centers will have a different research focus. At the Massachusetts Institute of Technology, scientists will address the problem of cancer's spread, known as metastasis.

"Metastasis is ultimately responsible for 90% of cancer-associated mortality," said cancer biologist Robert Weinberg, who directs the Ludwig Center for Molecular Oncology at MIT.

Despite the lethal power of metastasis, Weinberg said scientists still can't answer basic questions about it, such as: how do cancer cells get out of the primary tumor, how do they escape to form secondary tumors elsewhere in the body, "and finally, is it possible to attack cancer cells once they've launched metastases, or have they acquired a degree of resistance that will ultimately thwart all of our attempts to eliminate them?"

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Tambre Leighn's curator insight, January 7, 2014 5:04 PM

Metastatic disease getting a closer look thanks to a major donation.  The past year has seen a significant increase in awareness around the unique challenges of living with metastic cancer thanks, in part, to many of the health advocates out there like Jody Schoger, quoted in this article.  Great to see efforts translate into meaningful action.

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Compassionate use changes: 'A matter of life and death'

Compassionate use changes: 'A matter of life and death' | Breast Cancer Advocacy | Scoop.it

"WASHINGTON, D.C. (KXAN) - On a beautiful autumn Sunday, Andrea Sloan was exactly where she loves to be: on the ranch riding her horse.

"I just feel energized and loved and grateful and at peace," Sloan said. "It is impossible to have a bad day on a horse."

But deep in the background of that tranquil scene is the bitter battle Sloan is waging for her life. Seven years ago, she was diagnosed with ovarian cancer. For a while, it appeared that she had beaten the disease. Two months after, her cancer returned - her body was getting tired, but not her resolve.

"I'm not dying of ovarian cancer," she said. "I don't know how I know it.  I just know it the way you know things."

Sloan is not only battling cancer, she's also battling to change the way patients like her can gain access to  experimental drugs that might be able to save lives that would otherwise be lost.

Over the summer, Sloan learned that her approved medications were no longer effective for treating her advancing cancer. She also learned that drug manufacturer BioMarin has a drug her doctors say could provide the best chance for prolonging her life.

The drug, BMN 673, has shown to be effective in clinical trials but it hasn't been approved by the FDA. Sloan could receive it under the FDA's compassionate use rules. However, BioMarin has denied her request for access to the drug under the compassionate use exception that is allowed in cases like hers. Sloan was too late for BioMarin's clinical trial and the company cites concerns about her safety and the drug's effectiveness if she were allowed in at a later stage.

 

IN-DEPTH // The Patient Choice Act

Here are some key points of the HR 2090:

  • Treats provisional approval of a drug in the same manner as approval of a drug, except that provisional approval is subject to requirements related to informed consent and continued pursuit of safety and efficacy data for purposes of gaining approval for the drug.
  • Considers a drug safe if the risk of death caused directly by an adverse effect of the drug is unlikely to be greater than the combined direct and secondary risks of death or morbidity of the disease and existing therapies.
  • Considers a drug safe if the drug has had a valid marketing authorization for at least four years in specified countries and data adequate for the approval of such marketing authorization has been submitted to proper federal authorities.
  • Allows a drug to be administered only for treatments for which it was being tested for which the drug is demonstrated to be adequately safety.
  • Prescribes requirements for termination of provisional approval, withdrawal of such approval, and application of market exclusivity to fast- track approval products.

Source: Library of Congress/Bill Summary

    
Susan Zager's insight:

This story is about Andrea Sloan who has Ovarian Cancer. She needed access to a drug that was in clinical trials but not available to her. To find out more about Andrea's story and how she got access to the drug go to: http://www.kxan.com/news/andrea-sloanAndrea Sloan is also working to help see that other people who need access to medications that can save their lives through the Patient Choice Act (H.R. 2090). This bill is important to anyone with metastatic cancer that knows a medication is in trials and about to be approved by the FDA but they have to wait to get the drug and because these drugs are life-saving they won't be alive to get the drug unless this legislation is passed or they beg for their lives until they are able to capture attention to get the medication. For more information about H.R. 2090 go to: http://beta.congress.gov/bill/113th/house-bill/2090


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Tambre Leighn's curator insight, December 22, 2013 10:47 AM

Cancer survivors fighting for their lives do not need the added challenge of fighting for treatment.  If they are willing to take risks associated with drugs still in trial phase and there is a possibility it will help extend their lives, they deserve easy access.  Surely, pharmas could also find the data helpful in advancing the research.  There must be a way to create a win/win and save the survivor's energy for things they love to do and going through the cancer experience.

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ASCO Ramps Up Advocacy Efforts in Response to “Darkest Ever” Year

ASCO Ramps Up Advocacy Efforts in Response to “Darkest Ever” Year | Breast Cancer Advocacy | Scoop.it

"Federally funded cancer research continues to face unprecedented declines

In 2013, ASCO ramped up its advocacy efforts in calling for increased federal funding to support cancer research and clinical trials. As part of an extensive effort to educate and mobilize the membership to call for a renewed national investment in federally funded cancer research, ASCO developed a series of articles exploring the decade-long decline in federal funding for cancer research and why this decline must be reversed.

The U.S. clinical cancer research infrastructure is under threat more than ever before. Federal funding for clinical cancer research has remained flat for more than a decade, and when adjusted for inflation, funding has actually decreased.

Susan Zager's insight:

The NIH Funding Educational Series is available at: asco.org/advocacy/nihfunding.

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Susan Zager's curator insight, December 20, 2013 2:48 PM

The NIH Funding Educational Series is available at: asco.org/advocacy/nihfunding.

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ASCO Encouraged by Budget Conference Agreement; Concerned with Medicare Cuts

ASCO Encouraged by Budget Conference Agreement; Concerned with Medicare Cuts | Breast Cancer Advocacy | Scoop.it

"The Congressional Budget Conference Committee has released its much-anticipated agreement for fiscal years 2014 and 2015 yesterday evening. ASCO is encouraged by this bipartisan, bicameral agreement that will avert a January government shutdown if passed and signed into law.

The agreement sets top line spending numbers for the next two years and provides relief from sequestration for defense and non-defense discretionary spending, including funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). However, the deal extends sequestration for mandatory spending, including cuts to Medicare. For cancer care and research, this means that the pool of monies from which NIH and FDA are funded will receive a two-year break from sequester, but Medicare cuts will remain in effect and have been extended until 2023.

Oncologists are doing everything possible to continue providing care for Medicare patients, but this reduction has forced many in private practice to send patients to hospitals for chemotherapy because they cannot afford to administer these drugs in their office," said ASCO President Clifford A. Hudis, MD, FACP. "In many areas of the country, this means that patients and families must travel long distances for chemotherapy. The extra travel adds burdens, such as lost days from work, when they are already struggling with activities of daily living and side effects of treatment." 

Susan Zager's insight:

To contact your members of congress click here: http://capwiz.com/asco/issues/alert/?alertid=62595196


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