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Breast Cancer Advocacy
Articles of Interest for Breast Cancer Patient Advocates
Curated by Susan Zager
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She Has A Very Good Reason For Hating The Government Shutdown

She Has A Very Good Reason For Hating The Government Shutdown | Breast Cancer Advocacy | Scoop.it

"A Michigan woman struggling with ovarian cancer took an attention-grabbing approach to voicing her displeasure with the government shutdown. On Tuesday afternoon, she camped out at a congressman's office with a sign that read, "Congressman Huizenga closed my cancer trial."

WOOD TV 8 reports Cheryl Klein sat with her sign in view of traffic in Grandville, Mich., on Tuesday afternoon.

"I'm here because I'm having a hard time understanding what's happening in this country," Klein told the news station.

Klein did not literally have her cancer trial closed. She was not scheduled for treatment, but told West Michigan news station WZZM 13 that she had planned to sign up for a clinical trial. The application is process is currently closed.

The partial government shutdown began last week after Congress failed to pass funding legislation as House Republicans demanded changes to Obamacare, which Senate Democrats refused. While the National Institutes of Health's Clinical Center will be continuing to provide treatment to existing patients, according to the Washington Post, they aren't accepting new patients or "initiating new clinical protocols." An estimated 200 patients that would normally be admitted to clinical trials weekly will be turned away as a result of the shutdown.

The Clinical Center is "a national resource that makes it possible to rapidly translate scientific observations and laboratory discoveries into new approaches for diagnosing, treating, and preventing disease," according to their website."


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Susan Zager's curator insight, October 10, 2013 2:55 PM

While the trials already going on by the NIH will continue, as a result of the shutdown cancer patients that were going to start clinical trials will be turned away. They estimate 200+ patients every week. Meanwhile NIH funding is at stake. 

Heather Swift's curator insight, October 10, 2013 7:14 PM

While the trials already going on by the NIH will continue, as a result of the shutdown cancer patients that were going to start clinical trials will be turned away. They estimate 200+ patients every week. Meanwhile NIH funding is at stake.

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Texas Woman Wins Big Victory In Quest For Cancer Drug

Texas Woman Wins Big Victory In Quest For Cancer Drug | Breast Cancer Advocacy | Scoop.it

"WASHINGTON -- Andrea Sloan, 45, had been down to one good lung. Fluid had started to build up in the other, the right one, and it had to be drained once a week. "I literally can't breathe," she told The Huffington Post last week.

Sloan, an Austin, Texas, attorney who heads the Texas Advocacy Project, a group that provides free legal work and advocacy for victims of domestic violence, is seven years into a nasty battle with ovarian cancer. She has survived surgeries, chemotherapy and radiation. She endured a stem-cell transplant. Now, the cancer has roared back, and she faces limited options. She and her doctor sought an experimental drug being developed by BioMarin Pharmaceutical, a Northern California-based biotechnology company, that they believe may prolong her life.

The drug, now being tested on cancer patients, is not yet approved by the Food and Drug Administration for sale. Nevertheless, Sloan asked BioMarin to allow her access to the drug under the FDA's compassionate use exemption. BioMarin refused.

An extensive online campaign that included a Change.org petition with more than 190,000 signatures and the support of former House Speaker Newt Gingrich (R-Ga.) and various Texas politicians didn't change BioMarin's position."


Susan Zager's insight:

For those that may have missed this Andrea Sloan is getting access to the PARP Inhibitor that may save her life from another drug company that's name was not disclosed at their request. Thank you to everyone who signed her petition at change.org.

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Tambre Leighn's curator insight, October 7, 2013 1:52 PM

More evidence that advocacy works and individuals can make a difference inside large systems and organizations.  Creating change often means taking a stand and being unstoppable.

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Take Action | Fix Medicare Now

Take Action | Fix Medicare Now | Breast Cancer Advocacy | Scoop.it

"The current Medicare system is broken. The crumbling foundation of Medicare’s sustainable growth rate (SGR) formula is hurting physicians and patients by annually threatening payment cuts which will impact a patients’ choice of physician and access to the care that they need.

 
Members of Congress have taken steps towards repealing Medicare’s flawed SGR formula and real reform that will transform the program into an effective, 21st century model of care is achievable this year. 
 
Urge lawmakers to continue working in a bipartisan manner and protect Medicare and seniors’ choice of physician by repealing the flawed Medicare SGR formula in 2013. Tell them to fix Medicare now ! Use the form below to email your representative and senators today. You can also call them using the toll-free grassroots hotline at (888) 434-6200. For more information on repealing the SGR and fixing Medicare this year and for the future visitwww.FixMedicareNow.org."
Susan Zager's insight:

According to the AMA, "Physicians treating Medicare patients are facing a 24.7% reimbursement cut due to the flawed sustainable growth rate formula. Now is the time to reform Medicare and move toward a more patient-centered system focused on high-quality, cost-effective care." Let’s Fix Medicare Now.


Take action by writing Congress with this easy pre-written letter. All you need to do is put you address or zip code in. 

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Senate, House Health Policy Leaders Announce Bipartisan, Bicameral Legislation to Address High-Risk Drug Compounding Practices and Secure the Pharmaceutical Supply Chain | Energy & Commerce Committee

Senate, House Health Policy Leaders Announce Bipartisan, Bicameral Legislation to Address High-Risk Drug Compounding Practices and Secure the Pharmaceutical Supply Chain | Energy & Commerce Committee | Breast Cancer Advocacy | Scoop.it

"WASHINGTON, DC – Leaders from the Senate and House committees overseeing health policy today announced that they have reached an agreement on legislation to help ensure the safety of compounded drugs and our nation’s pharmaceutical supply chain. This legislation, the Drug Quality and Security Act, reflects a bipartisan, bicameral effort to improve drug safety and help prevent a future public health crisis like the 2012 meningitis outbreak tied to the New England Compounding Center.

“Today we are taking a notable step toward completing the important work of improving the security of our pharmaceutical supply chain and clarifying the regulation of drug compounding.  This step will help us protect the health and safety of the American people,” said Energy and Commerce Committee Chairman Fred Upton (R-MI). “The leadership of Rep. Morgan Griffith, Rep. Bob Latta, Health Subcommittee Chairman Joe Pitts, and Oversight and Investigations Subcommittee Chairman Tim Murphy has been fundamental in achieving this bipartisan agreement. It has been nearly one year since the tragic, deadly fungal meningitis outbreak and I am pleased to be working with my colleagues in the Senate to send a bill to the president’s desk, bringing this investigative and legislative effort to a successful conclusion soon. In light of the missed opportunities to prevent the outbreak, with this bill we say, ‘never again.’” 

“This legislation is a major stride toward the goal of ensuring the quality and safety of the medicines Americans rely upon every day," said Energy and Commerce Committee Ranking Member Henry A. Waxman (D-CA).  "The bill will correct the constitutional defect in FDA’s drug compounding statute that has wreaked havoc on the Agency’s ability to effectively enforce the law for years.  It will also give FDA the opportunity to have broad oversight of a new category of large compounding pharmacies.  This is undoubtedly a step forward for public health.  Further, we have developed a uniform system for tracking and tracing drugs to prevent counterfeits from entering the supply chain that maintains the strengths of the groundbreaking California system. I want to acknowledge the contributions of Reps. Frank Pallone, John Dingell, Diana DeGette, Gene Green, Jim Matheson, and former Rep., now Senator, Ed Markey to this bipartisan effort."


Via Heather Swift
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Marie Ennis O'Connor - the Rise of the ePatient

"Marie Ennis O'Connor, patient advocate and communications specialist, speaks to delegates of the Universitas 21 Health Sciences Group meeting about the rise of the e-patient."

Susan Zager's insight:

Marie Ennis O'Connor gives an excellent presentation and expanation of today's ePatient and how importnat it has become to engage  doctors and patients together to help them determine the best treatment plans related to the patients needs. It's wonderful that doctors are listening and recognizing that their patients are very engaged in their personal cases, When it comes to a cancer diagnosis, it's so importnat for patients to have access to information so they can be involved with their cases and understand the treatment options that are available to their particular case.

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Tambre Leighn's curator insight, October 1, 2013 3:00 PM

More and more, we need advocacy to lead in healthcare...here's another great role model leading the way.

Tambre Leighn's curator insight, October 7, 2013 1:55 PM

Effective advocacy for oneself or a loved one is a proactive step the individual can make toward quality of care.  More and more, the power lies with the patient as readmissions and patient satisfaction scores start to impact bottom lines.

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ACS CAN'S Leadership Summit and Lobby Day Infographic

ACS CAN'S Leadership Summit and Lobby Day Infographic | Breast Cancer Advocacy | Scoop.it
These numbers are incredible! Check out this infographic to see how ACS CAN’s #cancerlobbyday added up this year!
Susan Zager's insight:

ACS CAN did an excellent job on cancer lobby day!

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Tambre Leighn's curator insight, October 1, 2013 3:01 PM

Yes, but...what kind of stand is ACS taking with regard to moves by government to redefine "cancer" and the impact it will have on prevention, education and treatment choices for patients?

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ASCO Survey Underscores “Devastating” Impact of Stagnant Funding on Cancer Research

ASCO Survey Underscores “Devastating” Impact of Stagnant Funding on Cancer Research | Breast Cancer Advocacy | Scoop.it

"Budget Cuts Triggering Exodus of Future Cancer Investigators

Alexandria, Va. – A new survey of cancer researchers by the American Society of Clinical Oncology shows that the multiyear stagnation in federal cancer research funding, on top of this year’s automatic budget cuts required under sequestration, is having a profound impact on the U.S. cancer research enterprise.

A large majority, 75 percent, of survey respondents reported that the current federal funding situation is having a direct impact on their ability to conduct cancer research, in many cases triggering “devastating” changes. Delayed clinical trials, the elimination of research staff positions, and the halting or slowing of promising research that could lead to new therapies for cancer were cited as specific results of stagnant funding.

The survey findings also revealed the disturbing finding that many young investigators are leaving the field due to lack of funding. With more than 35 percent of survey participants reporting having to lay off skilled staff, many appear to be questioning the viability of a career in research and raising serious concerns about the ultimate impact of budget cuts on patient care and outcomes.

“This trend could potentially devastate future cancer research, just when we are on the verge of achieving major progress against cancer and identifying the next generation of effective cancer therapies,” said ASCO Chief Medical Officer Richard L. Schilsky, MD.

In a Journal of Clinical Oncology commentary published this week, Dr. Schilsky noted that declining federal funding for clinical trials, coupled with the rising costs of increasingly complex studies, could severely harm the nation’s clinical research enterprise by limiting the opportunities for innovation and demoralizing young clinical investigators. “If opportunities to develop and lead trials diminish, as current trends suggest, and institutional pressures to generate research funding and clinical revenue continue to grow, the risk exists that young investigators will walk away” from the federally-funded cancer clinical trials system, Dr. Schilsky wrote."

Susan Zager's insight:

Highlights from the article:

Research Survey Highlights
Of the 345 ASCO members in academic research who responded to the survey:

  • 75 percent said their research budgets were cut.
  • 44 percent have had to look for non-federal sources of funding to replace the sequestered funds.
  • 38 percent have reduced their time spent on research.
  • 35 percent have had to lay off staff.
  • 37 percent had to restrict the research questions or clinical trial endpoints to reduce study costs.
  • 28 percent have decided to participate in fewer federally-funded clinical trials.
  • 27 percent have postponed the launch of a clinical trial.
  • 23 percent have had to limit patient enrollment on a clinical trial.
  • 18 percent experienced a salary reduction or loss of programmatic support

We must act now to support Medical Research. Go to: http://capwiz.com/aacr/issues/alert/?alertid=62923891&PROCESS=Take+Action


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Tambre Leighn's curator insight, October 1, 2013 3:04 PM

Failure to fund will ultimately result in higher costs of chronic illness and shortened life expectancy.  When members of our community are not well, our community pays a price - in so many ways.  We cannot cut research funding and research around moving people to take action with regard to prevention (well-researched) is greatly needed.  Information and education is not enough.  What interventions can we effectively use to create sustainable healthy lifestyle behaviors?  Let's start to take a serious look at what steps can be taken to support healthy lifestyle choices.

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Act Now to Make Medical Research a National Priority

Act Now to Make Medical Research a National Priority | Breast Cancer Advocacy | Scoop.it

"Act Now to Make Medical Research a National Priority."

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Susan Zager's curator insight, September 16, 2013 12:40 PM

Here you can write to your representatives and make a difference. All you have to do is put in your zip code and the letter is pre-written.

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Life expectancy gap growing between rich/poor world women: WHO

Life expectancy gap growing between rich/poor world women: WHO | Breast Cancer Advocacy | Scoop.it

" Life expectancy for women at 50 has improved, but the gap between poor and rich countries is growing and could worsen without better detection and treatment of cardiovascular disease and cancers, the World Health Organization (WHO) said on Monday.

A WHO study, one of the first to analyze the causes of death of older women, found that in wealthier countries deaths from noncommunicable diseases has fallen dramatically in recent decades, especially from cancers of the stomach, colon, breast and cervix.

Women over 50 in low and middle-income countries are also living longer, but chronic ailments, including diabetes, kill them at an earlier age than their counterparts, it said.

"The gap in life expectancy between such women in rich and poor countries is growing," said the WHO study, part of an issue of the WHO's monthly bulletin devoted to women's health."

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ASCO Marks Progress toward Modernizing Clinical Cancer Research

ASCO Marks Progress toward Modernizing Clinical Cancer Research | Breast Cancer Advocacy | Scoop.it

"Funding cuts continue to be a threat

ASCO marked significant progress toward modernizing clinical cancer research as outlined during the Opening Press Briefing of the Society’s 49th Annual Meeting this past June, in Chicago, but warned that advances against cancer could stagnate as a result of recent cuts to U.S. biomedical research funding.

At ASCO’s 2013 Annual Meeting, the Society released “Progress Report: Implementation of ASCO’s Blueprint for Transforming Clinical and Translational Cancer Research,” which looks at the gains made toward achieving goals set forth in its landmark 2011 report, “Blueprint for Transforming Clinical and Translational Cancer Research.” The Progress Report and Blueprint are available online.

“Our federally funded clinical trials system has achieved remarkable advances that have improved survival and quality of life for millions of people with cancer, but this progress is occurring under the cloud of federal budget slashing,” said ASCO Immediate Past President Sandra M. Swain, MD, FACP. “Draconian cuts to biomedical research will slow our progress at the moment of greatest scientific potential and increasing worldwide need.”

Funding for the U.S. National Institutes of Health (NIH) is at its lowest level since 2001 (adjusted for inflation), a drastic reduction in the nation’s historical commitment to biomedical research. ASCO called on Congress to maintain a strong commitment to federally funded research with a recommended NIH budget of $32 billion for fiscal year 2014."

Susan Zager's insight:

According to the article:


“Even before the funding cuts brought on by sequestration, funding deficits have significantly limited our ability to conduct potentially transformative clinical research,” Dr. Bertagnolli said. Data for Cancer and Leukemia Group B demonstrate that as the group’s NCI funding fell by 12% from 2003 to 2011, so did publications and the number of new clinical trials and patients enrolled.

The cooperative groups have undergone a much-needed restructuring and are poised to make best use of public funds, Dr. Bertagnolli said. The speed of trial activation has dramatically increased, and NCI has committed to increase payments to study sites. Sustained funding will be critical to the success of the new National Clinical Trials Network, she added."

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AACR Hosts Congressional Briefing on Cancer Health Disparities

AACR Hosts Congressional Briefing on Cancer Health Disparities | Breast Cancer Advocacy | Scoop.it

"The AACR recently hosted a congressional briefing titled “Reducing Cancer Health Disparities Through Research” which highlighted the important role of federally funded biomedical research in understanding cancer health disparities and developing targeted interventions to eradicate them. The speakers who participated in the briefing shared a broad range of perspectives on the role of research—from patients, government administrators, and researchers—and  they underscored the need for Congress to provide sustained funding to the National Institutes of Health (NIH) and the National Cancer Institute (NCI). Representatives Elijah Cummings (D-MD), Rodney Davis (R-IL), Raúl M. Grijalva (D-AZ), and Barbara Lee (D-CA) served as honorary hosts of the event.  All of these members of Congress have expressed their commitment to addressing health disparities.

Despite the remarkable progress in cancer research over the past several decades, some populations continue to suffer disproportionately from cancer incidence and mortality. “Even though cancer research has enabled tremendous advances against cancer, more than 1.6 million Americans will be diagnosed with this terrible disease this year, and a disproportionate amount of the suffering and deaths due to cancer will fall on racial and ethnic minorities, the poor and the medically underserved.” stated Margaret Foti, Ph.D., M.D. (h.c.), chief executive officer of the AACR. Foti affirmed the AACR’s long-standing commitment to the eradication of cancer health disparities by thorough research into their underlying causes. “The AACR is committed to working with the cancer research and policy communities, and with our distinguished lawmakers, to unravel these complexities and make cancer research count for all patients, regardless of their race, ethnicity, age, gender, socioeconomic status, or the communities in which they live.”

Susan Zager's insight:

It is so clear that we need to address cancer control and prevention and clinical trials especially with communities that have significant minority populations. With an emphasis on continued investment in biomedical research we still need to address underserved minority populations.


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America’s 50 Worst Charities Exposed

America’s 50 Worst Charities Exposed | Breast Cancer Advocacy | Scoop.it

"To identify America's 50 worst charities, the Times and CIR examined tens of thousands of pages of public government records from 36 states. They were looking for a specific kind of charity—those writing fat checks to for-profit corporations to raise the vast majority of their donations, year in and year out. Of course, the more money that’s given to solicitors, the less that is used for direct aid.

Several watchdog organizations say charities should spend no more than 35 percent of the money they raise on fund-raising expenses. However, the investigation identified hundreds of charities giving their hired solicitors more than twice that much—often more than two-thirds of the take. Investigators found these organizations to be rampant with fraud, waste and mismanagement.

Data from this investigation show the worst charities devote less than four percent to direct cash aid. Some gave even less, and five on the list gave zero percent."

Susan Zager's insight:

Among the top 10 worst charties for cancer are:


Cancer Fund of America

American Breast Cancer Foundation

Breast Cancer Relief Foundation

Children’s Cancer Fund of America


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Tambre Leighn's curator insight, September 7, 2013 3:31 PM

There are so many worthy non-profits deserving of your funds...know where the $$ goes!

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BreastCancerDeadline2020_Sue_Love.mp4

Sue Love, author of the Breast Book, supports the Breast Cancer Deadline 2020
Susan Zager's insight:

"Because I think that until we shift our focus to really ending the disease, not just making slightly better treatments or a slightly better surgery or slightly better radiation, but ending the disease once and for all, we’re not going to do it.” –Dr. Susan Love
‪#‎EndBreastCancer‬ ‪#‎BCD2020‬

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Budget Cuts Prompt Investigators to Walk Away From Research

Budget Cuts Prompt Investigators to Walk Away From Research | Breast Cancer Advocacy | Scoop.it

"Cuts in federal spending for scientific research, combined with the automatic federal budget cuts resulting from sequestration, are having a severe impact on cancer research, according to a survey conducted by the American Society of Clinical Oncology (ASCO).

A total of 345 researchers responded to the survey, most of whom work at academic institutions or National Cancer Institute (NCI) Designated Cancer Centers.

The majority of survey respondents—75%—said that their research budgets had been cut, causing staff reductions, delayed clinical trials, and ending or slowing the rate of clinical research.

Other key findings of the study are as follows:

  • 44% of respondents said they sought out non-federal sources of funding to replace federal funds
  • 38% have reduced the amount of time they spend on research
  • 35% have laid off staff
  • 37% have had to revise study protocols to reduce study costs
  • 23% have had to limit patient enrollment in a clinical trial

Many young investigators are leaving the field of cancer research for lack of opportunities, according to the survey results. “The cuts have been devastating and have compromised research careers, especially of junior faculty,” one survey respondent wrote.

Susan Zager's insight:

This sitruation is just awful. People are missing out of clinical trials. Research budgets are cut and with lack of funds vital research won't take place. The rate of clinical research is slowing or ending. There are cuts in staff. This takes away from vital cancer research. This is about people's lives. 

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In cancer drug battle, both sides appeal to ethics

In cancer drug battle, both sides appeal to ethics | Breast Cancer Advocacy | Scoop.it

"(CNN) -- Andrea Sloan is dying of ovarian cancer. Having exhausted all standard treatment options, her doctors say her best hope now is a new class of cancer drugs called PARP inhibitors.

The California pharmaceutical company BioMarin makes one version of these drugs called BMN 673. Earlier this year, the company presented very early data on this experimental drug at a large cancer conference. Initial results in women with breast and ovarian cancer were encouraging.

Sloan says there are doses of BMN 673 sitting on shelves in the same hospital where she's seeking treatment: M.D. Anderson Cancer Center."

Susan Zager's insight:

To sign her petition asking the pharmaceutical company Biomartin to do the right thing go to: http://www.change.org/petitions/biomarin-pharmaceutical-give-andrea-sloan-andi-sloan-access-to-the-cancer-drug-that-could-save-her-life 

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New Breast Cancer Imaging Technique Could Cut Down On False Positives

New Breast Cancer Imaging Technique Could Cut Down On False Positives | Breast Cancer Advocacy | Scoop.it

"A joint BYU-Utah research team is developing a new breast cancer screening technique that has the potential to reduce false positives, and, possibly, minimize the need for invasive biopsies.

Led by BYU electrical engineer Neal Bangerter and University of Utah collaborators Rock Hadley and Joshua Kaggie, the group has created an MRI device that could improve both the process and accuracy of breast cancer screening by scanning for sodium levels in the breast.

“The images we’re obtaining show a substantial improvement over anything that we’ve seen using this particular MRI technique for breast cancer imaging,” said Bangerter, senior author on a study detailing the method in academic journal Magnetic Resonance in Medicine.

Specifically, the device is producing as much as five-times more accurate images than previous efforts with an emerging methodology called sodium MRI.

Currently, there are two clinical imaging methods widely used for screening breast cancer: mammograms and proton MRI scans."

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Friday Sept 27, 2013 by Stanford Medicine X


What is Medicine X?


Medicine X is a catalyst for new ideas about the future of medicine and health care. The initiative explores how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The “X” is meant to encourage thinking beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health. Under the direction of Dr. Larry Chu, Associate Professor of Anesthesia, Medicine X is a project of the Stanford AIM Lab.

How is Medicine X Different than other Technology Conferences?

Where other technology conferences may focus on consumer trends or business-to-business needs, Medicine X will bring a broad, academic approach to understanding emerging technologies with the potential to improve health and advance the practice of medicine. Drawing on the best traditions of Stanford—an incubator of Silicon Valley—the conference aims to ignite interdisciplinary thinking and collaboration while encouraging a rigorous, quantitatively driven approach to understanding emerging technologies. In other words, the conference hopes to encourage “moon shot” thinking while actually offering the intellectual tools to make those ideas reality.

Susan Zager's insight:

Here you can watch the livestream of the Conference. For more information go to: http://medicinex.stanford.edu/about/

For Friday livestram archive go to: http://new.livestream.com/stanfordmedicinex/friday

For Saturday livestream go to: http://new.livestream.com/stanfordmedicinex/events/2429959

For Sunday livestram archive go to:

http://new.livestream.com/stanfordmedicinex/events/2429953



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Susan Zager's curator insight, September 30, 2013 11:53 AM

Here you can watch the livestream of the Conference. For more information go to: http://medicinex.stanford.edu/about/

For Friday livestram archive go to: http://new.livestream.com/stanfordmedicinex/friday

For Saturday livestream go to: http://new.livestream.com/stanfordmedicinex/events/2429959

For Sunday livestram archive go to:

http://new.livestream.com/stanfordmedicinex/events/2429953

Tambre Leighn's curator insight, October 7, 2013 1:54 PM

I have the honor of knowing several health advocates who attended.  Advocacy is making a difference and giving a voice to the patient, survivor and the caregiver.

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American Association for Cancer Research Cancer Progress Report 2013: Continued Advances Made Against Cancer, Sustained Research Funding Needed

American Association for Cancer Research Cancer Progress Report 2013: Continued Advances Made Against Cancer, Sustained Research Funding Needed | Breast Cancer Advocacy | Scoop.it
Women in the Middle East often suffer with more aggressive forms of breast cancer than Western women, researchers at Weill Cornell Medical College in Qatar have discovered.
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Susan Zager's curator insight, September 21, 2013 7:37 PM

This comprehensive report makes it clear that we need to keep making sure medical research, especially in relation to cancer, needs to be a national priority in the US.

"The report highlights the need for efforts to develop new tools, new analytics, new ways of thinking, and new ways of working together to help all stakeholders in the biomedical research enterprise forge ahead to the finish line — to the day when cancer is removed as a major threat to our nation’s citizens and to future generations. Realizing this bright future requires that Congress, the administration, and the general public stand firm in their commitment to the conquest of cancer."


 

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Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis

Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis | Breast Cancer Advocacy | Scoop.it
The IOM examined the quality of cancer care in the United States and concluded that the cancer care delivery system is in crisis due to a growing demand for cancer care, increasing complexity of treatment, a shrinking workforce, and rising costs.
Susan Zager's insight:

According to the report:
"The committee concluded that the cancer care delivery system is in crisis due to a growing demand for cancer care, increasing complexity of treatment, a shrinking workforce, and rising costs. Changes across the board are urgently needed to improve the quality of cancer care. All stakeholders – including cancer care teams, patients and their families, researchers, quality metrics developers, and payers, as well as HHS, other federal agencies, and industries – must reevaluate their current roles and responsibilities in cancer care and work together to develop a higher quality cancer care delivery system. Working toward the recommendations outlined in this report, the cancer care community can improve the quality of life and outcomes for people facing a cancer diagnosis. "


To read the full report go to: http://books.nap.edu/openbook.php?record_id=18359&page=R1


 

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Campaign for Safe Cosmetics : Walmart Will No Longer Sell Cosmetics, Cleaners, Made with Targeted List of Toxic Chemicals

Campaign for Safe Cosmetics : Walmart Will No Longer Sell Cosmetics, Cleaners, Made with Targeted List of Toxic Chemicals | Breast Cancer Advocacy | Scoop.it

"In a move likely to send shock waves through the marketplace, retail giant Walmart has committed to targeting as many as 10 toxic chemicals for removal from products sold in its stores, including national and store-brand cosmetics, personal and beauty products, and household cleaners.

“Walmart’s decision to banish cosmetics and cleaners made with toxic chemicals will revolutionize the marketplace and help all of us live better by making safer products the new normal,” said Janet Nudelman, Director of Program and Policy for the Breast Cancer Fund and co-founder of the Campaign for Safe Cosmetics."

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Susan Zager's curator insight, September 16, 2013 5:26 PM

This is very encouraging knowing that Walmart "has committed to targeting as many as 10 toxic chemicals for removal of prodiucts that they sell in their stores." This is all due to the Breast Cancer Funds  "Campaign for Safe Cosmetics." Advocates for Breast Cancer supports the Campaign for Safe cosmetics. " For more information go to: http://safecosmetics.org/


Tambre Leighn's curator insight, October 1, 2013 3:05 PM

One step toward prevention...will other retailers follow?  They will if you vote with your consumer dollars and support organizations that focus on reducing the toxin load.

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Take Action to Increase Funding for the NIH and NCI!

Take Action to Increase Funding for the NIH and NCI! | Breast Cancer Advocacy | Scoop.it

"Take Action to Increase Funding for the NIH and NCI. Congress returned to work this week with a number of pressing issues to tackle. One of the most important is passing a federal budget before the existing one expires at the end of the month. Funding for the National Institutes of Health (NIH) has been cut by 5.5 percent, or $1.6 billion due to sequestration and sequestration will likely lead to further decreases without a significant funding increase for the NIH in the upcoming budget." 

Susan Zager's insight:

Here is the link to a page where you can write your Representative and Senators and let them know that this budget MUST include the most robust number possible for the NIH and NCI. There's a prewritten letter that you can change the wording to reflect that you are a cancer patient if you are not an oncologist.

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Making Our Voices Heard “Above the Clamor of Vested Interest” | Breast Cancer Action

Making Our Voices Heard “Above the Clamor of Vested Interest” | Breast Cancer Action | Breast Cancer Advocacy | Scoop.it
"Breast Cancer Action has a long history of protesting toxic industries and practices that increase our risk of breast cancer, so Russell-Jones’ analysis of how the public, politicians, and industry behave in a debate about regulating toxic practices sounds very familiar. The task for advocates is to learn from our history and “make our voices heard above the clamor of vested interest.”
Susan Zager's insight:
Follow the links on the page to send a pre-written letter to the President and your representatives. 
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Natalie Palmer's curator insight, September 4, 2013 9:19 AM

You can take action right now to help stop breast cancer before it starts:

Ask your Senators to support the strongest possible regulation of toxic chemicals in our everyday products. Tell President Obama to reject a proposal that would allow private companies to drill and frack for oil and gas on public lands.  Follow the links on the page to send a pre-written letter to the President and your representatives. 
Tambre Leighn's curator insight, September 7, 2013 2:49 PM

Advocacy becomes a path for many whose lives are affected by cancer.  Investing your energy in creating healthy change through advocacy can be a great way to channel the anger and frustration survivors and caregivers sometimes feel about a diagnosis or how treatment and survivorship is impacting their lives.

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Costs of Care is a 501c3 nonprofit that is transforming American healthcare

Costs of Care is a 501c3 nonprofit that is transforming American healthcare | Breast Cancer Advocacy | Scoop.it

"Costs of Care is a 501c3 nonprofit that is transforming American healthcare delivery by empowering patients and their caregivers to deflate medical bills.


 

Currently medical bills are a leading cause of personal bankruptcy in the United States, even among the insured. Meanwhile, more than $750 billion dollars are spent each year on tests and treatments that needlessly inflate medical bills without helping patients get better. That is the same amount of money that the Department of Defense estimates we spent on the entire Iraq War.

 

We believe that Americans can get their money back by trimming the fat out of medical bills – replacing or rejecting services that eat into our wallets without making us healthier."

 

Susan Zager's insight:
Costs of Care's Mission has three parts:

1. ADVOCATE: creating a culture where caregivers are responsible for the cost and value of their decisions, take action to avoid waste, and help build the will for change

2. EDUCATE: giving caregivers the knowledge and skills they need to make cost-conscious, high-value decisions with their patients

 

3. SUPPORT: helping caregivers to deflate medical bills by using information technology and decision-support tools to put cost and quality information at their fingertips at the critical moment when medical decisions are made


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Tambre Leighn's curator insight, September 7, 2013 3:11 PM

It's time to get a handle on the impact medical debt is having on individuals and this country.  Recently during a routine annual physical, I refused a basic test as it had just been done three months prior with normal results and I wasn't having any health issues.  We have the right to say no to unnecessary costs.

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President Obama Signs Short-Term Funding Bill

President Obama Signs Short-Term Funding Bill | Breast Cancer Advocacy | Scoop.it

"President Obama recently signed a stopgap spending bill to avert a government shutdown on March 27 and keep federal agencies funded through September 30. The short-term spending resolution, also known as a continuing resolution (CR), locks in the $85 billion across-the-board spending cuts known as sequestration (see article below) through the remainder of the fiscal year. 

Final passage of The Consolidated and Further Continuing Appropriations Act of 2013 (HR 933) came without much partisan contention, as House Republicans agreed to significant changes approved by the Senate days earlier rather than risk further delay. The passage of the CR ends a relatively smooth and drama-free process for a Congress that has repeatedly been deadlocked on key spending issues."

Susan Zager's insight:

The article further explains that since sequestration went into effect on March 1, the spending bill does nothing to address it.

 "Through the CR, Congress restored $71 million in funding to the National Institutes of Health (NIH). The Food and Drug Administration (FDA) also saw some funding restored to cover increased staff costs. Under the previous CR, funding for the NIH remained at the FY2012 funding level of $30.6 billion, but with the recent enactment of sequestration, all of the spending levels in the CR are subject to being slashed by 5 percent and an additional across-the-board cut of less than 1 percent."

While cobsidering this continuing resolution (CR) Senate Appropriations Leader HHS Subcommittee Chairman Tom Harkin (D-IA) "offered an amendment that would have boosted NIH funding above post-sequestration levels by $211 million, including about a $35 million increase for the National Cancer Institute (NCI). Despite strong support from the AACR and the rest of the NIH advocacy community, the Harkin amendment failed to receive the required 60 votes for passage.

While the additional $71 million for the NIH does little to make up for the $1.5 billion cut to the agency imposed by sequestration, the increase remains a positive sign in an otherwise dismal budget situation. Now, both parties will warily look to the next fiscal showdown: ongoing negotiations over their separate - and vastly distinct - full-year budget proposals, as well as negotiations over raising the debt ceiling, which will require action this spring."


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Breast Cancer Action-Tell Your Senator - Support Strong Rules for Toxic Chemicals

Breast Cancer Action-Tell Your Senator - Support Strong Rules for Toxic Chemicals | Breast Cancer Advocacy | Scoop.it

"The U.S. Senate is currently considering the future of toxic chemical regulation. We must work together to ensure that we get the strongest possible regulations of toxic chemicals linked to breast cancer and other diseases. Take action to ensure that any new chemical regulation is as strong as it can possibly be."


Susan Zager's insight:

Click on this page to write your senators. There's a pre-written letter (or you can make it your own) and all you have to dio is put in your zip code and info and you can help make a difference.

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