Archive for April, 2008

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Honoring Eight Members of Congress Who Fought For NBCC This Year

Wednesday, April 30th, 2008

A separate, but equally important part of NBCC’s Annual Advocacy Training Conference is Lobby Day, which always takes place the day after the Conference ends. On that day our 600 advocates take Capitol Hill by storm, as they hold hundreds of meetings with their elected representatives and their key staff members, discussing NBCC’s policy and legislative priorities and enlisting their support. The day is an exhilarating and productive experience for everyone who participates.

In the afternoon, NBCC holds its Annual Congressional Awards reception, to honor those Members of Congress whose efforts were especially beneficial this year. This year’s reception took place on Tuesday, April 29th at 4:30 in the Caucus Room of the Russell Senate Office Building (Room 325.) We proudly honored these eight outstanding lawmakers:

Sen. Sherrod BrownSenate Majority Leader Harry Reid (D-NV)
Senator Orin Hatch (R-UT)
Senator Sherrod Brown (D-OH)
Senator Bernie Sanders (I-VT)
Senator Arlen Specter (R-PA)
Representative Tom Davis (R-VA)
Representative Judy Biggert (R-IL)
Representative Henry Waxman (D-CA)

In addition, the following nine lawmakers are in NBCC’s “Hall of Fame” in recognition of their steadfast leadership in the fight against breast cancer. (Years of induction are noted.)

Senator Tom Harkin (D-IA) - 1999
Senator Edward Kennedy (D-MA) - 1999
Senator Patrick Leahy (D-VT) - 1999
Representative Nita Lowey (D-NY) - 1999
Senator Olympia Snowe (R-ME) - 2001
Representative Anna Eshoo (D-CA) - 2001
Senator Hillary Clinton (D-NY) - 2005
Representative Sue Myrick (R-NC) - 2005
Representative Lois Capps (D-CA)- 2007

Rep. Lois CappsAll these leaders work to ensure that the federal government makes breast cancer a priority and they support substantive polices that will lead to the end of this disease. We are grateful to our honorees for their commitment and vision.

Fran Visco
President
National Breast Cancer Coalition

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NBCC LOBBY DAY…EXHAUSTING BUT AWESOME

Wednesday, April 30th, 2008

From the moment we NBCC advocates departed the bus at Peace Circle only to look up at one incredible view of the U.S. Capitol, you knew it was going to be an amazing day. Arriving by the busloads, hundreds of us moved up the hill in waves, some going directly to early appointments scheduled with Members and/or staff in Senate and House Buildings. Others headed to the ROA Building, our base of operations, to meet additional members of the state delegations and put final touches on the day’s gameplan for forwarding the NBCC agenda with our Senators and Representatives at the scheduled appointments.

NBCC Storms the Hill

You can’t imagine how empowering a sight it is just to see the hundreds of women and men wearing their NBCC Lobby Day 2008 badge, walking the halls of Congress and holding more than 420 meetings with Senators, Representatives and/or their staff to press for a thoughtful breast cancer agenda! It’s incredibly moving to see and hear the enthusiasm of advocates returning to the ROA Building and reporting their successes and accomplishments from their meetings. Being a part of it is ABSOLUTELY AMAZING!

Yes it is an exhausting day. But also, it is a day like no other. You have to experience it to know how truly inspiring it is!

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Voices from the Conference - Day Three

Tuesday, April 29th, 2008

At the Interactive Cafe in the Exhibit Hall of the NBCCF Advocacy Training Conference, attendees were asked to share their conference thoughts and highlights as Blog Reporters. In addition, some of them recorded Conference Video Diaries. As the Exhibit Hall approached “closing time” on the third and final day of the NBCCF Advocacy Training Conference, many advocates took advantage of their last chance to participate in the Interactive Cafe and shared their insights. Here are just a few “voices from the conference”. We’ll be posting more in the days and weeks ahead.

As a first time attendee I have been very pleased with the NBCC conference. On day one I was inspired by listening to Dr. Susan Love discuss what’s new in breast cancer. Yes, THE Dr. Susan Love! Tomorrow, I am looking forward to participating in congressional visits with the Connecticut delegation at Lobby Day on Capitol Hill. Most meaningful about this conference is that exactly 5 years ago, I was a newly diagnosed very scared breast cancer patient. Today, I am healthy and feeling empowered to do my part to help eradicate breast cancer. — Rose Gerber, East Lyme, CT

The plenary sessions have been quite informative and have raised my personal awareness regarding current issues on breast cancer. The presidential candidates’ representatives for health care presented some diverse views on each candidate’s present position on health care for all Americans. Just hope that who ever is elected, that NBCCF will be involved in the development of any health care reform legislation that is presented to Congress. — Women of Color Breast Cancer Survivors’ Support Project member from Los Angeles, CA

What an incredible opportunity to be given the tools to be able to make a difference not only in my own community, but across the country. This is my 7th year attending the conference and it has come to be one of those annual things (like my mammogram) that I make sure I do. I have to admit, though, even though they are both important and beneficial to my life, this is much more fun! — Ellen Vander Heyden, Germantown, WI (Wisconsin Breast Cancer Coalition)

And, then, watch this video from longtime NBCC advocate Wish Martin!

[youtube=http://www.youtube.com/v/syIX6Lh7sPY]

Keep visiting the blog throughout the month of May as we post more Voices from the Conference!

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Eleanor Clift’s Wry Words of Wisdom

Tuesday, April 29th, 2008

As NBCC advocates know, breast cancer is a political issue. Monday morning at the conference was all about policy and politics. Following the unveiling of NBCC’s new Framework for a Health Care System Guaranteeing Access to Quality Health Care for All and a discussion about the health care plans of the presidential candidates, we were ready for lunch and a talk from Eleanor Clift, a Newsweek reporter and a regular guest on The McLaughlin Group.

If you’re not a regular viewer of The McLaughlin Group, you need to know that it is a weekly TV political discussion show. Nobody can get more than six words out before getting interrupted. Eleanor is usually the only woman on the show, and she told the audience that when she began appearing on the program twenty years ago, the “boys” did not know how to handle her and first acted – shock, shock – polite! Eleanor said she knew she had arrived when Robert Novak, also known as the “Prince of Darkness,” tossed a put-down her way.

Eleanor likened her difficulties breaking the glass ceiling of The McLaughlin Group to those of women members of Congress and of women everywhere. She talked about the challenges women candidates faced getting elected – and then, once arriving in Congress, becoming effective. This year’s presidential campaign, with a woman as a serious candidate, is also history in the making, and the rules on how a woman candidate should act and be covered are being rewritten every day.

In addition to being a journalist, Eleanor is the author of several books, the most recent an account of sharing the final two weeks of her husband’s life as he lay dying at home (under hospice care) of metastatic kidney cancer. She said that the experience has given her a new perspective on what needs to be fixed in the health care system. She applauded NBCC advocates for their efforts and told them to go to Capitol Hill tomorrow and be fearless.

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Presidential Politics and Health Care

Tuesday, April 29th, 2008

Last Wednesday, our New Hampshire Field Coordinator, Nancy Ryan, told you about NBCC’s 2008 presidential campaign project, Breast Cancer Caucus. Today, April 28, we had an exciting political plenary featuring representatives from the three remaining presidential campaigns (Catherine Brown for Sen. Hillary Clinton (D); Dianne Kube for Sen. John McCain (R), and Kavita Patel for Sen. Barack Obama (D)). They answered questions about their candidates’ plans for health care reform and they reacted to NBCC’s just released “Framework for a Health Care System Guaranteeing Access to Quality Health Care for All“.

Moderator Susan Dentzer started the session by saluting NBCC for “recognizing something that makes you unique among patient advocacy groups – that breast cancer is not an island unto itself. It exists in a sea of critical issues: access to health care; evidence-based medicine; and shared responsibility. It is critical that the next president takes these issues as seriously as you do.”

Susan asked the campaign representatives if their candidate believes, as NBCC does, that health care is a right. Dianne, speaking for Senator McCain, responded, “He believes everyone needs to have access to health care.” On behalf of Senator Obama, Kavita said, “He agrees that health care is a right.” Catherine said, “Senator Clinton agrees it is a right and she would require everyone to get health insurance and she would make it affordable.”

There was a discussion about the necessity for an individual mandate to purchase health insurance. Senator Clinton absolutely believes it is necessary to make health care affordable, yet she recognizes it may be politically unpopular. Senator Obama is not opposed to an individual mandate, Kavita said, adding that if it is the will of the nation he will pursue it but it is not part of his plan now. Senator McCain believes Americans should have freedom of choice. Dianne said he would be releasing more details about this aspect of his plan on April 29, including a separate program for those with low income.

The plenary closed after Ms. Dentzer asked the representatives to make predictions for a year from today: “Assume your candidate is elected president, and has been in office for 98 days. What will he or she have accomplished?” Catherine said Mrs. Clinton would have doubled the budget for the National Institutes of Health and other breast cancer research programs. She will have introduced legislation – the American Health Choices Plan. The Breast and Cervical Cancer screening and treatment programs will be fully funded to cover all those eligible, and a “best practices institute” will be up and running. Dianne said Mr. McCain would have put together a series of panels including consumers, insurers, providers, business and other stakeholders with a goal of determining how we can attain access to health care for all. Kavita said Mr. Obama will have introduced a bill which will have been approved by the appropriate Congressional committees and ready for floor debate. He will have put in place a cabinet and administrative heads to provide the leadership necessary to carry out any law that is enacted.

A record number of people have participated in the primaries and caucuses this year and NBCC encourages all of those people who care about breast cancer issues to become even more involved in this year’s elections. Another important way to participate is to sign the NBCC Breast Cancer Caucus voter pledge: “In the 2008 primary, caucus, and general elections, I pledge to vote to eradicate breast cancer.” And don’t forget to stay tuned to www.BreastCancerCaucus.org for updates on things you can do to make sure that your vote is a vote towards ending breast cancer.

To sign the pledge, click here. And be sure to forward it on to your friends!

Posted in 2008 Conference, Breast Cancer Caucus, Framework for Health Care Reform, Plenary Sessions | No Comments »

NBCC’s Framework for a Health Care System Guaranteeing Access to Quality Health Care for All

Monday, April 28th, 2008

Today was a big day in the history of NBCC! Since our inception in 1991 we’ve advocated for guaranteed access to quality health care for all. As survivors, as women who have faced the challenges of an illness as devastating as breast cancer, ensuring access to quality health care for all is a very real priority. It is also NBCC’s top public policy goal. This morning I revealed our blueprint for achieving this ambitious reform of our health care system.

NBCC has always trained consumers to be involved in systems change, through our Project LEAD and other programs. That foundation will be very important now, as we push forward to change the system of health care coverage in this country. NBCC/F’s Board of Directors worked long and hard to craft our Framework. It is a guide to the type of legislation NBCC would push to achieve universal health coverage.

This timing is perfect, since health care has surfaced as a top domestic issue in the presidential elections. All the pundits are predicting that the stars are aligning to create the opportunity for comprehensive health reform. I invite you to participate with us as we embark on the biggest challenge we have ever taken on - reforming our system of health coverage so that no one is left behind.

Key Points of NBCC’s
Framework for a Health Care System Guaranteeing Access to Quality Health Care for All

  • The Framework is premised on the fundamental belief that health care is a right and that all people present in the United States should have access to quality health care regardless of their immigration, residency status, or ability to pay.
  • The Framework is an outline for legislation that will support a system of evidence-based health care coverage for everyone.
  • The Framework provides that the basic benefits covered are comprehensive and evidence-based.
  • The system resulting from the Framework will include mechanisms to:
    • Support development of new evidence through clinical research
    • Continually refine benefits through comparative effectiveness and cost effectiveness analyses
    • Reduce over and under use of care
    • Include educated consumers in all decision making
  • The system will be financed in part through cost savings and shared responsibility:
    • Everyone – individuals, employers, and government – share responsibility to support the system.
    • Individuals will be required to financially contribute to the system based on their ability to pay.
  • All employers will be required to contribute to the system. The Framework would phase out employer-sponsored health insurance. Subsidies or a sliding scale should be implemented to ensure that small businesses are not disproportionately affected by these payments.

Click here to read the full Framework.

Fran Visco
President
National Breast Cancer Coalition

Posted in 2008 Conference, Framework for Health Care Reform, Fran Visco, Plenary Sessions, Uncategorized | No Comments »

Voices from the Conference - Day Two

Monday, April 28th, 2008

At the Interactive Cafe in the Exhibit Hall of the NBCCF Advocacy Training Conference, attendees are being asked to share their conference thoughts and highlights as Blog Reporters. In addition, some of them are recording Conference Video Diaries. With the conference moving into its second day, many more advocates stopped by to share their insights. Here are just a few “voices from the conference”. We’ll be posting more in the days and weeks ahead.

The NBCC conference is the most comprehensive, informative, innovative HONEST conference related to breast cancer, I have ever attended. Not only do the presenters talk about the most up to date information regarding breast cancer, but the conference inspires revolution. We need to revolt to find out why we do not have more evidence based screening and treatment regarding breast cancer. Whenever I come to these conferences I feel like I am getting a “shot in the arm” of adrenaline to bring me to my knees again. We must eradicate this disease, not later, but NOW! I am angry , I am furious and I am an activist who will not wait for answers any longer. NBCC gives me the hope that when my granddaughter asks me if, she too, will get breast cancer, that I can one day say to her, “NO, you will not because we have a way to detect breast cancer long before it starts.”  AMEN — Sherry Goldman, Manhattan Beach, CA (UCLA Breast Center)

I came to this conference, for the first time this year, out of a sense of adventure to find out what the fuss is all about. By today (Sunday), the second day, I anticipate registering for LEAD training so that I can ultimately focus on the issues surrounding breast cancer and the environment. Of course this means that I will closely follow the progress of the Breast Cancer and Environmental Research Act and very much look forward to advocating on its behalf on Tuesday. — Anne Da-Silva Tella, Fairport, NY (Breast Cancer Coalition of Rochester, New York)

I am an international attendee from Venezuela and a Madrid Project LEAD graduate. This is my third time attending this conference and it is my inspiration and my charging of batteries to work as an advocte in my country. Our reality is so different from the USA, but the mission of NBCC and its comminment is a model to follow. Every time I am at home struggling with the lack of quality care, poor public health system, lack of education and resources I just close my eyes and remember the energy of the plenary and keep working… Thanks for the opportunity of the scholarship to be here. – Bolivia Bocaranda, Caracas, Venezuela (SenosAyuda)

And, watch the Conference Video Diaries of Jessica Henderson & Sandra Davis, Veronica Suber, and Ivis Febus-Sampayo.

[youtube=http://www.youtube.com/watch?v=Ce2uBPVwtuQ]

[youtube=http://www.youtube.com/watch?v=V8ZRSmSqfFw]

[youtube=http://www.youtube.com/v/u3HN8DSwEJw]

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NBCCF’s Best Practices in Breast Cancer Advocacy Awards - Poster Session Presenter in Action!

Sunday, April 27th, 2008

Last year, the National Breast Cancer Coalition Fund (NBCCF) selected Nueva Vida as one of four winners of the 2007 Best Practices in Breast Cancer Advocacy Awards. Nueva Vida was recognized with a $50,000 award for its strategic, high-impact work in research about Latinas with breast cancer.

During the Annual Conference this evening, the four winners had the opportunity to give poster session presentations. It was a great honor for Nueva Vida not only to receive this award, but also to share what we have learned through our research programs. As a community based organization, Nueva Vida has been able to increase the quantity and the quality of research about Latinas with breast cancer, and this is in good measure due to the visionary education and advocacy training programs developed by NBCCF. We are confident that through our collaborations with the scientific community our best practices can be adopted by others nationally and internationally.

The mission of Nueva Vida is to inform, support and empower Latinas whose lives are affected by cancer, and to advocate for and facilitate the timely access to state of the art cancer care, including screening, diagnosis, treatment and care for all Latinas.

- Larisa Caicedo, Executive Director, Nueva Vida

On-Line Applications for The 2008 Best Practices in Breast Cancer Advocacy Awards will open Monday, May 5, 2008. Visit www.StopBreastCancer.org for more information.

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Quality Health Care: Delivering on the Promise

Sunday, April 27th, 2008

In a lively plenary session on Sunday afternoon, Alice Yaker, Executive Director of SHARE, moderated and offered the patient advocate perspective to a diverse panel of leaders in the quality care world. Yaker stressed the NBCCF core values as they apply to quality of care, and described a number of NBCCF’s accomplishments and initiatives in this regard. For example, the value of accountability needs to apply to the role of the FDA before as well as after approval of drugs, and to physicians, who must better explain risks and benefits of treatments to patients.

Carolyn Clancy, MD, Director of the Agency for Health Care Research and Quality, discussed AHRQ’s initiatives in comparative effectiveness research, which allows direct comparison of similar interventions to one another; she emphasized that this process must be transparent at every stage. Comparative effectiveness, she said later, is controversial; in response to audience questions, she answered that although industry fears thumbs up/thumbs down results of comparative effectiveness reports, health care is rarely so simple.

Paul Levy, CEO of the Beth Israel Deaconess Medical Center (BIDMC), pointed out that variation in care is important to monitor, in cases where it is not an aspect of the art of medicine but really reflects a variation in quality. Levy has an influential blog, http://runningahospital.blogspot.com, in which he promotes complete transparency in running his hospital, in some cases forcing the improvement of quality. For example, he has published central-line infection rates, and challenged other hospital executives in the Boston area to do the same. In response to accusations from the other execs that this was an attempt to put BIDMC at a competitive advantage, he countered that publicizing how many people they were killing was hardly a viable marketing strategy! However, Levy said, he believes that his efforts at transparency have succeeded in changing the public discussion in the Boston health care community.

Shannon Brownlee, author of “Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer,” began with the example of high-dose chemotherapy and bone-marrow transplantation. She noted the press’ role in enticing people to demand this treatment and that advocacy groups – except for NBCC – pushed for coverage because it was unfair not to. In the end, clinical trials showed that it really was no better than conventional therapy – arguably more harmful - and much more expensive. She said that geography is destiny in medicine – where you live determines what kind of care you get. A heart attack in Salt Lake City, on average, will cost Medicare half what it costs in Los Angeles, yet in LA the outcome is, on average, worse.

As earlier, the advocates attending the session came up with a wide range of great questions. One was how efforts at health care reform can address political buzzwords that get in the way, such as socialized medicine, managed care, undocumented immigrants, and rationing. Brownlee responded that if “rationing” means that you restrict care that we know will not be helpful, that’s a good thing. Clancy noted that impulses along the lines of “Don’t just stand there, do something,” drive costs, and that the Veterans’ Administration is an example of socialized medicine in the US. Levy then described the two-tier system in the UK, where services that are not covered by the national health system can be purchased privately.

What about universal coverage? Brownlee said yes – but we must, at the same time, contain costs, or else they’ll become unmanageable. Levy agreed that the ongoing Massachusetts experience is much more expensive than anticipated as previously uncovered residents catch up on services. Levy also cautioned, however, that there is not a political consensus behind universal coverage; he advocated an incremental approach in the form of confidence-building measures.

Posted in 2008 Conference, Plenary Sessions | No Comments »

Rating the Media: How Well is Breast Cancer Reported?

Sunday, April 27th, 2008

Two years ago at this conference I introduced our new website, HealthNewsReview.org, to evaluate and grade health news stories that include claims of efficacy or safety in treatments, tests, products or procedures.

Today I led a follow-up workshop – along with terrific journalist Shannon Brownlee and NBCC Board Member and advocate Sandy Walsh.

HealthNewsReview.org has now reviewed 544 stories. About 65 of them were related to breast cancer. I gave several examples of how stories by leading news organizations in this country failed to give adequate context, analysis or perspective on vital breast cancer issues.

Please visit our website – and look for a brand new “Join the Discussion” forum on the right rail of the home page. It’s our hope that we can open a dialogue among journalists, news consumers, health care consumers and others about what can be done to improve the flow and quality of health care news and information.

Gary Schwitzer
Publisher, HealthNewsReview.org
Associate Professor
Director, health journalism M.A. program
University of Minnesota School of Journalism & Mass Communication
e-mail: schwitz@umn.edu

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