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Mayo Clinic Cancer Center and Yale Cancer Center/Smilow Cancer Hospital Named Newest NCCN Member Institutions

NCCN announced today the addition of 2 new NCCN Member Institutions: Mayo Clinic Cancer Center in Phoenix/Scottsdale, Arizona; Jacksonville, Florida; and Rochester, Minnesota, and Yale Cancer Center/Smilow Cancer Hospital, New Haven, Connecticut.

“The election of Mayo Clinic Cancer Center and Yale Cancer Center into institutional membership is a true testament to the growth and impact of NCCN,” said Robert W. Carlson, MD, Chief Executive Officer, NCCN. “The expertise of these academic cancer centers’ faculty enhances the collaboration of NCCN Member Institutions as we further the mission of NCCN to improve the lives of patients with cancer in the United States and worldwide.”

“I look forward to working with Mayo Clinic Cancer Center and Yale Cancer Center as members of NCCN,” said Samuel M. Silver, MD, PhD, University of Michigan Comprehensive Cancer Center, Chair, NCCN Board of Directors. “These institutions exemplify the best in cancer care and cancer research. Each has unique attributes that will strengthen our network and improve care for patients with cancer.”

The Mayo Clinic Cancer Center is an NCI-designated comprehensive cancer center with a multisite presence. Its 3 campuses in Phoenix/Scottsdale, Arizona; Jacksonville, Florida; and Rochester, Minnesota, give the Mayo Clinic Cancer Center a broad geographic reach, enabling it to serve diverse patient populations around the world. The campuses are also home to outstanding, internationally recognized physicians and scientists who collaborate across the full spectrum of cancer research, from basic biology to treatment, as they seek ways to reduce the burden of cancer.

“NCCN and the Mayo Clinic Cancer Center share a mission to better the lives of cancer patients,” said Robert Diasio, MD, Director, Mayo Clinic Cancer Center. “We are excited to work with other NCCN Member Institutions to save lives and improve quality of life for cancer patients across the nation.”

Yale Cancer Center/Smilow Cancer Hospital is one of a select network of 41 comprehensive cancer centers in the United States designated by the NCI. Bringing together the resources of Smilow Cancer Hospital at Yale-New Haven and Yale School of Medicine, its mission encompasses patient care, research, cancer prevention and control, community outreach, and education.

“We are honored to be elected to NCCN institutional membership,” said Thomas J. Lynch Jr, MD, Director, Yale Cancer Center; Physician-in-Chief, Smilow Cancer Hospital at Yale-New Haven. “The collaboration of over 450 scientists and physicians focused on cancer research and care at Yale provides a strong foundation for breakthroughs in cancer prevention, diagnosis, and treatment.”

NCCN 19th Annual Conference Opening Roundtable: Communication is Key for Children of Parents With Cancer

On March 13, 2014, NCCN opened its 19th Annual Conference: Advancing the Standard of Cancer Care with a roundtable discussion, titled, “The Child’s Experience When a Parent has Cancer.” The panel, moderated by Lillie D. Shockney, RN, BS, MAS, The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, explored recommended communication strategies for parents and clinicians to ensure that a child is appropriately prepared when a parent is diagnosed with cancer.

The panelists for this year’s opening roundtable were Martha Aschenbrenner, MA, The University of Texas MD Anderson Cancer Center; Bruce Ham, Single Fathers Due to Cancer Support Group, UNC Lineberger Comprehensive Cancer Center, and author, Laughter, Braids and Tears; Paula K. Rauch, MD, Massachusetts General Hospital; Zoraida Sambolin, Emmy Award-winning journalist and former co-anchor for CNN’s “Early Start”; and Maya Silver, co-author, My Parent Has Cancer and It Really Sucks.

Ms. Shockney, Administrative Director of the Johns Hopkins Breast Center, Director of the Johns Hopkins Cancer Survivorship Program, and 2-time breast cancer survivor, described her experience of being diagnosed with cancer as a parent of a young child. Ms. Shockney described how cancer has been a routine part of life for her daughter, Laura, who was 12 years old at the time of her mother’s initial diagnosis and 15 years at the second. Ms. Shockney told the audience of a time when she had the opportunity to hear her daughter interviewed on the radio about her mother’s cancer, describing how, as a teenager, she was scared of the disease—but ultimately finding strength in her experiences.

Open, honest communication is key as a parent with cancer, agreed the panel. They expressed that parents must be honest with their children about diagnoses and, at the same time, welcoming of their thoughts, feelings, questions, and fears.

Ms. Aschenbrenner, a palliative care and rehabilitative medicine counselor specializing in raising emotionally healthy children, and cancer survivor, described the complexities of age-appropriate concepts and descriptions of cancer, its treatment, and prognoses.

“When children are forewarned, it does not raise their anxiety,” she explained. “As parents, we want to protect our children, but we also know that honesty and honest information is the best predictor of how children will cope when a parent is helps them to trust the people who are caring for them.”

When talking about cancer—and death—Dr. Rauch described how, within the Parenting at a Challenging Time (PACT) program at Massachusetts General Hospital, a child’s development level is paired with their temperament to determine the best approach to communicate with that child. From that point, staff works with the parents to identify other support systems within the family and community.

“How kids have coped with previous challenges that are much smaller actually will inform the way you can create a support system for them and how they will experience this particular challenge,” she said.

“You need to know your own kid,” said Ms. Sambolin, as she described her children’s reactions to the news of her diagnosis with breast cancer. At that time, Ms. Sambolin’s son, 14 years old, quickly created his own support system within his network of friends and proactively educated himself about the disease. He became her advocate and caretaker, she said, whereas her daughter, who was only 9 years old at the time, asked very few questions. “My son chose to walk the journey with me,” she said. “It taught me that kids are resilient—that kids can handle a lot more than we think they can handle— and it also taught me that when he faces adversity, he is going to step up and he is going to be able to handle it.”

The emphasis on communication stemmed far beyond her home, explained Ms. Sambolin, as she ultimately chose her care team based on their ability to communicate openly with her and her children. “They were both great teams. They both had all the credentials,” she said. But, Ms. Sambolin explained that, her treatment team included her son, and, ultimately, she chose treatment with the oncologists, nurses, and radiologists with whom they both could communicate best: “I knew that if I had difficult conversations that needed to happen, they would happen in a setting in which I would feel more comfortable.”

Mr. Ham added to the discussion of the need for more communication from the clinician side of the cancer equation. A single father after his wife’s death from metastatic colon cancer, Mr. Ham has found community in his local support group— Single Fathers Due to Cancer. He noted, however, that family preparation and communication from his wife’s treatment team after her death would have been helpful for him and his 3 daughters.

“You, more than anyone, are in the position to prepare families for what could come to be,” said Mr. Ham, calling upon attending clinicians to guide and prepare families facing cancer, its treatment, survivorship, and, in some cases, death.

“How has your experience with your mother’s cancer prepared you for a life crisis?” Ms. Shockney asked Ms. Silver.

Ms. Silver, 15 years old at the time of her mother’s cancer diagnosis, described how, as an adult, she is able to identify “big” problems versus “small” problems, as well as understand, identify, and implement her personal coping mechanisms. “It’s taught me a lot about what not to do,” she said. “I’ve now learned how helpful organized communication strategies would have been.”

Ms. Shockney described how honest communication with patients does not take away hope: “We know from research that we do not take away hope by being honest with our patients—they are going to go through transitions of hope,” said Ms. Shockney.

“Even up to the point that we take our last breath—and that’s been neurologically studied—we still have hope,” she said. “[Patients] are hoping that their children do well. They are hoping that their values have been instilled in their children after they’re gone. They are hoping that their spouse is going to manage well and still be able to have a good life.”

NCCN Roundtable Considers the Effect of Health Care Reform on Oncology Practice: Confronting Risk

On Friday, March 14, 2014, NCCN hosted its second roundtable of the NCCN 19th Annual Conference: Advancing the Standard of Cancer Care, titled, “The Affordable Care Act: Where are We Now?” Clifford Goodman, PhD, The Lewin Group, moderated the discussion, which explored the Affordable Care Act (ACA) and health care reform in the United States, its effect on the oncology landscape, and assessment of risk for providers, payers, and patients.

Dr. Goodman was joined by Christian G. Downs, JD, MHA, Association of Community Cancer Centers; Liz Fowler, PhD, JD, Johnson & Johnson; Michael Kolodziej, MD, Aetna; Lee H. Newcomer, MD, MHA, UnitedHealthcare; John C. Winkelmann, MD, Oncology Hematology Care, Inc., and Councillor, American Society of Hematology; Mohammed S. Ogaily, MD, Henry Ford Health System; and W. Thomas Purcell, MD, MBA, University of Colorado Cancer Center.

Dr. Goodman opened Friday’s roundtable discussion by asking Dr. Purcell how, since the implementation of the ACA, patients have been presenting differently than in previous years.

Dr. Purcell described how, at University of Colorado Cancer Center, 2 distinct groups have presented since the ACA: medically indigent adults and newly underinsured patients who, for the first time, are within a narrow network and do not have the same access to comprehensive care that was previously available through employer-sponsored programs. These groups, he said, now qualify for Medicaid or have purchased Bronze Packages; however, both are accompanied by large copays.

Because of the well-run state exchange and Medicaid expansion in Kentucky, said Dr. Winkelmann, adult patients are, for the first time in years, seeing their primary care physicians. In turn, he said, oncologists are experiencing an influx of newly insured patients because they have undergone overdue routine cancer screening.

Patients who recently acquired health care coverage and have been putting off treatment are presenting with complex cases that require an immediate need, added Dr. Ogaily.

Dr. Fowler and Mr. Downs explained that this poses risk in oncology because, when the ACA was first implemented, young, healthy patients (<35 years old) were expected to sign up in multitudes. To the contrary, Mr. Downs added, a risk pool has emerged as most new enrollees are around the age of 55 years, and this demographic is more likely to have cancer, require expensive treatment, and have other comorbidities.

Dr. Goodman asked Dr. Kolodziej and Dr. Newcomer how, as payers, they are assessing their risk with more patients requiring more expensive care.

Drs. Kolodziej and Newcomer agreed that, given the fact that the market has been open for less than 90 days, the necessary claims data are not available to adjust premiums.

“We are trying to understand how the process works,” said Dr. Newcomer. “And then we are ready to get fully committed and expand as soon as we understand how it’s going to work.”

“Given the uncertainty, you manage what you can manage,” said Dr. Kolodziej. “Many of the strategies to manage the risk of this unknown pool are the same strategies we use to manage the risk in the pool that we do know about.”

“If the risk pool stays risky, does it all fall apart?” Dr. Goodman asked Dr. Fowler.

“Congress and the public need to think about what adjustments they need to make,” said Dr. Fowler, who, prior to her employment at Johnson & Johnson, worked with the U.S. Senate and at the White House on the authoring and implementation of the legislature. Dr. Fowler explained that there are 3 mechanisms for self-correction— referred to as the premium stabilization programs—built into the law to make amends for enrolling sick people up front: the temporary reinsurance program, the temporary risk corridor program, and permanent risk adjustment.

According to the panel, risk is eminent not only for payers and providers but also for patients. Quality of care is a major concern for patients with rare diseases, explained Dr. Purcell. Because patients with rare cancers require state-of-the-art treatment that is not always available in the community setting, they seek care at larger, academic centers that are not covered within their narrow markets, and these patients are forced to pay for their care out-of-pocket.

And, with increasingly more community oncology practices being purchased by larger hospitals, financial risk is eminent for patients, said Dr. Ogaily. Trying to work through a hospital is more difficult and time-consuming, therefore raising administrative costs, he said, adding that those costs are transitioned to the patients.

Furthermore, if a community practice is purchased by a hospital, said Dr. Newcomer, payers are seeing as much as a 10-fold rise in drug costs. Patients, then, make up for the increase in cost through copays and deductibles, and the provider pays the difference, he explained.

“We can all agree that there is a lack of transparency and this discussion degenerates into a qualitative versus a quantitative argument,” said Dr. Kolodziej. “The solution is shifting risk.”

“What we need to do, collaboratively, is work on reducing administrative expenses,” said Dr. Newcomer. “It’s going to take discussions, it’s going to take experiments, and it’s going to take a blank piece of paper.”

In closing, Dr. Goodman asked the panel to discuss what they believe the keys for successful implementation of the law will be. The answers: integrated care, payment reform, and an increased focus on value and quality.

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