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ERIC ROSENTHAL REPORTS: ASCO Venue Provides Forums for Various Advocacy Discussions…and Sound Bites

Rosenthal, Eric T.

doi: 10.1097/01.COT.0000386603.57474.a8

CHICAGO—During last month's American Society of Clinical Oncology Annual Meeting here, I attended two separate off-site events that dealt with various cancer-related issues discussed by leaders from the advocacy community.

There were a few common denominators, and some stark differences.

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‘Striking the Balance: Expanding Cancer Care from Prevention though Survivorship’

The first, “Striking the Balance: Expanding Cancer Care from Prevention though Survivorship,” was sponsored by Amgen Oncology and enthusiastically pitched to the media attending ASCO by its PR agency. Although the handout presented outside the ASCO pressroom did not specifically mention the ASCO meeting, an Amgen press release distributed after the presentation led with that “eminent leaders and thinkers in the cancer community came together yesterday at the 2010 ASCO annual meeting for a first-of-its-kind roundtable event.”

The release also stated that the forum was designed “to inspire action by establishing several calls-to-action for the cancer community and health policymakers.”

The Amgen event was part of its Breakaway from Cancer initiative to raise awareness of the important resources spanning prevention through survivorship available to people affected by cancer, according to the promotional material, which listed its advocacy group partners as the Prevent Cancer Foundation (PCF), the Cancer Support Community (CSC), the Patient Advocate Foundation (PAF), and the National Coalition for Cancer Survivorship (NCCS).

Moderated by Susan Dentzer, Editor-in-Chief of Health Affairs and contributor to the PBS NewsHour, Striking the Balance was billed as “a discussion with cancer community leaders designed to spur dialogue and inspire action,” in an interactive forum that would encourage all attendees to contribute to the discussion. There was repeated referral to these advocates as thought and passion leaders.

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‘Advocacy in Action’

The second forum, “Advocacy in Action,” was produced by Vital Options International, which has switched its format from radio broadcast to video. (Disclosure note: I had formerly served as senior correspondent and news features editor for Vital Options.)

The event was co-moderated by Selma Schimmel, President and CEO of the cancer communications nonprofit and host of The Group Room, and Diane Blum, MSW, Editor-in-Chief of ASCO's, CEO of the Lymphoma Research Foundation, and former Executive Director of CancerCare (see OT, 1/25/10), and received support from Genentech BioOncology, Lilly Oncology, and Novartis Oncology.

Advocacy in Action stated that its goal was not to problem-solve, but to document and put into context the issues of value vs cost; the transformation of health care and cancer; decision-making without patient input; the future of cancer research; and new media and technology's influence on clinical practice and consumer and patient education.

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Both Featured NCCS's Thomas Sellers

Both events prominently featured Thomas P. Sellers, MPA, the relatively new President and CEO of the NCCS (see OT, 11/25/09), and both had some of the same attendees.

Mr. Sellers presented opening remarks about the paradigm shift from treatment to survivorship for Advocacy in Action, and served as a panelist at the Breakaway event with Carolyn “Bo” Aldige, PAF President; Kim Thiboldeaux, CSC President and CEO; Nancy Davenport-Ennis, PAF founder and CEO; as well as John Marshall, MD, of Lombardi Comprehensive Cancer Center; and Lee Schwartzberg, MD, of the West Clinic in Memphis.

Actor Patrick Dempsey, who portrays a neurosurgeon on ABC's “Grey's Anatomy,” and who founded the Patrick Dempsey Center for Cancer Hope and Healing in Maine, also participated remotely via videoconference.

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‘Most Striking Difference…’

The most striking difference between the two forums was the realization of an interactive dialogue among the 30+ attendees at Advocates in Action, including some representing smaller, lesser-known organizations, contrasted with the seemingly scripted presentations at Breakaway.

Moderator Dentzler was well informed about the issues, but made only a single request for audience participation, the result of which was what sometimes sounded like a series of soapbox speeches from several of the panelists preaching to the choir.

In addition, one panelist who also attended Advocacy in Action made nearly verbatim comments at both events.

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‘Same Old Diatribes'?

The most striking similarity between the forums was the déjà vu effect of hearing some of the same old diatribes that have dominated advocacy dialogues and monologues for decades.

These included changing the name of clinical trials to something less frightening, calling patients and survivors something else such as medical consumers, complaints about nothing much having happened in advancing cancer care, lack of federal funding, and Dr. Marshall's urging that the War on Cancer be reenergized.

To the less informed, it would have seemed as if very little had been accomplished in cancer research and care since 1971, which prompted one observer to remind those attending Advocacy in Action that many of their organizations are being overwhelmed by the swelling ranks of cancer survivors who have benefited from advances in turning some cancers into chronic conditions and in living a much more enhanced quality of life.

Ms. Blum and Ms. Schimmel told the Advocacy in Action audience that the topics addressed were the result of discussions that sought to find some commonalities among the advocacy groups, and that it was important to develop common language to move forward.

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More Options

Mr. Sellers said that patient care and advocacy were at a crossroads, but that there seemed to be more options today with health care reform and other initiatives such as comparative research and an increasing focus on patient centered care and survivorship.

“We have to create a new business model for cancer care and build a system with empowered patients who are informed and providers of care who are open to ongoing communication, and the medical and psychosocial needs and high technology that makes it easier to deliver,” he said.

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More Accountability

Ms. Blum discussed how cost affects those getting quality cancer care, and said that more accountability should come with evidence-based care and comparative effectiveness.

Ms. Thiboldeaux of CSC noted at the Vital Options session that some published studies showed that patients receiving cancer care can face the same distress levels as those who lived through Hurricane Katrina or 911.

“Some people are looking for a silver bullet that doesn't exist. They need to look at clinical trials as another treatment option, not as a last resort,” she said, adding that there needed to be a framework to enter the system.

Michael S. Katz, representing the International Myeloma Foundation, said that there were quirks in the system such as not covering oral medications that may be more effective than those given intravenously.

“This can do things that are bad for the patient and be more expensive,” he said. “The system is also unkind to people who don't have [insurance] coverage since they are often charged the most…and these are some of the things that need to be cleaned up.”

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‘Sometimes Less Is More and More is Not Necessarily Better’

Courtney Bugler, Atlanta Executive Director for the Young Survival Coalition, said that sometimes “less is more and more is not necessarily better” when it came to cancer treatment.

And another participant said that the elephant in the room was the fact that cancer care is so expensive since many treatments are ineffective due to resistance and said the focus needs to be on establishing research collaborations that are a little bit more aggressive and not just accepting of incremental changes.

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Patrick Dempsey

Patrick Dempsey's participation at Breakaway was due to an ongoing relationship with the initiative and his having established a foundation in response to his mother's experience as an ovarian cancer patient diagnosed in 1997.

An Amgen spokesperson told OT that the actor had formerly been a paid spokesperson for the company in 2005, and that his foundation continues to receive financial support.

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‘Architects of Own Health’

The prevention message at Breakaway was presented by Ms. Aldige, who said that mounting a successful fight against cancer included focusing on people who haven't become patients yet.

She said everyone should understand that “to a large extent, they are the architects of their own health,” and that screening and early detection can increase the likelihood of successful treatment.

She was also critical of media coverage of debates over screening recommendations, saying that she believed that the science is often lost on the messages to the public, with the result that people sometimes end up doing nothing.

PAF's Nancy Davenport-Ennis said that “doing research at the bench only brings value to society if it can be brought to the bedside and touch the lives of patients, improving their health and wellness.”

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Eliminating Restrictions on Preexisting Conditions

She also said she hoped the new health care reform law will eliminate restrictions on preexisting conditions and lifetime coverage caps, and emphasized the importance of accessible multidisciplinary comprehensive care, as well as the use of patient advocates or navigators to help explain treatment options and what follows.

Ms. Thiboldeaux pointed to the Institute of Medicine's 2007 report on Psychosocial Services to Cancer Patients and Families in a Community Setting as helping to establish the importance of providing psychosocial services as well as medical care. She mentioned the very negative connotation of clinical trials to the public, and said that patients should be able to contribute to clinical research without necessarily being part of a clinical trial.

“We are all dedicated to creating seamless, integrated care and overcoming the silos and fragmentation to make the cancer experience a little easier for families and patients,” she said.

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Patient Treatment Plans Key

Mr. Sellers spoke about the need to present every cancer patient with a treatment plan that includes a list of potential side effects, a treatment summary, and a survivorship care plan. It is important to empower patients so they can demand well-coordinated care, he said, adding that prevention is part of longer-care survivorship.

Dr. Schwartzberg emphasized political action. He was also concerned about public expectations and said he thought the message should be changed so people would know that tests are not perfect and can be better.

“Physicians don't think about population-based science, and the business model for oncology care has changed over the years.”

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‘Quality Movement Being Driven by Payers'

He also said the quality movement is being driven by payers and that metrics are needed to determine what constitutes quality in oncology care with data to compare outcomes, concluding that “oncologists want to be held accountable.”

“We are rationing health care and don't want to talk about it. Maybe health care reform will take us away from that.”

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HIPPA ‘Terrible’

In addition to his call for a renewed war on cancer, Dr. Marshall called HIPPA “a terrible law” citing that specimens and clinical records can't be connected; a sentiment echoed by Ms. Aldige who added “HIPPA is a terrible impediment to science.”

Dr. Marshall also said many people had lost their sense of personal responsibility and needed to shift back to taking responsibility.

“Screening is science versus economics,” he said, asking “where did they come up with a one-year interval for mammography?”

As for reimbursement for oncology care, he told the audience that listened but did not interact throughout the evening, “It's unbelievably crazy how we are paid.”

© 2010 Lippincott Williams & Wilkins, Inc.
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