Eric Rosenthal Reports
Thoughts and observations about issues, trends, and controversies in the cancer community.
Wednesday, February 19, 2014
The American Association for Cancer Research, American Cancer Society, American Society of Clinical Oncology, and the National Cancer Institute have had various ventures with one or more of each other in the past, but never before have the four leading cancer organizations come together formally for a specific initiative.
So it was significant when last week the four organizations met over three days in Alexandria, Va., where ASCO convened a think tank to discuss the current state of cancer health disparities research.
Experts in clinical cancer research, epidemiology, public health, and health care policy joined with patient advocates and others to discuss the state of the science and the needs and priorities in cancer disparities research to reach a consensus on recommendations that will be incorporated into a statement by all four organizations. The aim is to describe the state of cancer disparities research and identify research needs and funding priorities.
A joint news release noted that in the United States some racial and ethnic minorities “are more likely to develop cancer, less likely to access high-quality cancer care, and more likely to die from cancer when compared with others and with whites.” In addition, the information noted that African-American males have a death rate one-third higher than white males, while the death rate for African-American females is 16 percent higher than for white females.
In addition, the release states that the poor are affected by disparities, particularly those who are uninsured, and that even with the expansion of health insurance coverage from the Affordable Care Act, the Congressional Budget Office estimates that in 2019, some 30 million individuals will still be uninsured, continuing to make access to quality cancer care difficult for many people.
The think tank was the first step in identifying and determining what could be done to address health disparities.
In a telephone interview, ACS Chief Medical Officer Otis W. Brawley, MD, said he would like to see the resulting paper published in the official journals of all the partner organizations. He also noted that before the term “health disparities” was first used in the 1990s by former Surgeon General David Satcher, MD, PhD, the field had been referred to as “special populations” and “minority health.”
The idea for a white paper on the subject by ASCO first arose several years ago, he said, when he and Derek Raghavan, MD, PhD, were Co-chairs of the society’s Health Disparities Advisory Group (which eventually became the Health Disparities Committee). The idea was not developed any further at the time, but eventually others revised the idea and brought in other groups, Brawley said.
Worta McCaskill-Stevens, MD, MS, Chief of NCI’s Community Oncology and Prevention Trials Research Group, and a former ASCO Health Disparities Co-chair, noted that NCI had hosted two conferences with ASCO in 2011 and 2012, “A Collaborative Approach to Reduce Cancer Disparities: Research Priorities,” which also included participants from ACS and AACR.
“This collaboration emanated from these two meetings and morphed from there,” she said, adding that during the 2012 conference the idea of ASCO’s white paper reemerged, with the organizations agreeing that what was needed was research across a spectrum of disciplines.
This is a new area in cancer disparities research, she said. She added that she would like to see the group publish one or two papers in a prominent journal that would also reach researchers outside of cancer, since helping to reduce health disparities requires multidisciplinary expertise, and collaborative funding is especially important during the current fiscally challenged times.
“We want to move fast and have something submitted within a couple of month -- perhaps this spring or summer,” she said.
Blase Polite, MD, MPP, Director of the Center for Interdisciplinary Health Disparities at the University of Chicago School of Medicine, said that McCaskill-Stevens had contacted him last spring when he was still ASCO Health Disparities Chair about a possible NCI-ASCO collaboration on a paper about comorbidities related to health disparities.
That also helped resurrect the idea of ASCO’s white paper, which along the way lost the somewhat ironic designation as a “white” paper and became a “statement.” ACS then eventually came aboard with Polite’s colleague and mentor at Chicago, Olufunmilayo (Funmi) Olopade, MD, helping to get AACR formally involved.
AACR CEO Margaret Foti, PhD, said that all four groups were sharing the funding of the project and would be providing their respective expertise, and that overall coordination would be handled through ASCO.
Later this year, AACR will host its seventh conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved (the most recent one was held in December in Atlanta).
Polite, a medical oncologist specializing in gastrointestinal malignancies, said that health disparities research is “mature but not very well coordinated,” and that the new initiative was an effort to help standardize the field.
The main areas that were discussed for possible inclusion in the future paper, he said, were the following:
- Integrating basic science with social determinations of health;
- Maturing community-based research;
- Recruiting the next generation of researchers; and
- Deciding how research should be conducted -- e.g., should clinical trials be set up with racial and ethnic targets?
“The next step will be for us to look at these major recommendations and decide which should go into a document,” he said, adding that his preference would be that the initial paper be an executive summary-type overview published simultaneously in several of the groups’ journals followed by a series of more focused reports that could appear in various specialized journals.
Sunday, February 16, 2014
It may sound like a Showtime program or a throwback to a former era’s euphemistic name for what had then been a much-stigmatized disease, but the Livestrong Foundation’s next big thing – “The Big C Competition” -- is something more closely resembling ABC’s “Shark Tank.”
Livestrong terms the venture, launched earlier this month on World Cancer Day, a “global social innovation competition designed to improve the lives of people affected by cancer.”
What that translates to is a contest open to individuals or teams with ideas they’d like to carry to fruition that would improve the quality of life of cancer patients, survivors, and everyone one else touched by cancer, and benefit from seed funding and mentoring.
Livestrong President and CEO Doug Ulman wasn’t available for an interview since he was on a fundraising expedition climbing Mr. Kilimanjaro, so spokesperson Rae Bazzarre explained that the name for the competition was chosen during staff brainstorming sessions that sought to capture people’s attention through a term that had been used when talking about a taboo.
“We wanted to say we are talking about cancer -- socially, publicly, and in a big bold way,” she said, noting that the initiative was new for Livestrong but in line with what the organization considers a history of taking nontraditional approaches to fighting cancer.
Similar types of challenges have been held recently by the Office of the National Coordinator for Health IT -- “Crowds Care for Cancer Challenge: Supporting Survivors”; the Knight Foundation -- Knight News Challenge; the New York City Economic Development Corporation and New York City Department of Information Technology & Telecommunications -- NYC BigApps Competition; and Dell and the University of Texas at Austin -- Dell Social Innovation Challenge.
The Livestrong competition is produced in partnership with Verb Inc., a new company specifically focused on such social entrepreneurship competitions, with the aim of solving pressing social and environmental problems. Verb had formerly been an incubator entity that worked exclusively with the University of Texas and Dell, and this is its first outside project.
Livestrong found in a 2010 survey that there was a need to help cancer patients and survivors deal with the daily struggles accompanying treatment and survivorship.
Entries will be accepted through May 15, with 20 of the top 150 applicants moving on to a “venture accelerator phase” from July 14 through September 15 where they will team up with cancer survivors and business mentors to help implement the ideas. The plan is to announce the five finalists on September 29, who then travel to Austin in mid-October during the Team Livestrong Challenge Austin to make their presentations. The grand prize winner will receive $25,000, and an additional $115,000 will be disbursed in varying amounts to another 59 ventures.
The overall competition will include approximately 400 judges representing the social innovation industry; entrepreneurs; venture capitalists who could be potential investors; and the cancer community including cancer survivors.
There are five overall categories/tracks:
- Rebuilding Financial Health -- A Cancer Diagnosis Shouldn't Equal Financial Catastrophe;
- Regaining Emotional Well-Being -- Finding a Sense of Security After Cancer;
- Caring for Caregivers -- Families, Friends, and Caregivers Are Fighting Cancer Too;
- Improving Access to Quality Care -- Helping Cancer Patients Get the Care They Need; and
- Filling the Knowledge Gap -- Empowering Patients' Informed Decisions Through Education.
Further information is available at bigc.livestrong.org, and submitted applications can be viewed there as they are posted.
Friday, February 07, 2014
BY ERIC T. ROSENTHAL
The cross-pollination of cancer research collaborations continued at Stand Up To Cancer’s (SU2C) fourth annual scientific summit held in January in Pasadena, Calif., close to the Hollywood home of the initiative’s cofounders.
The four-day meeting of a diverse group that included members of the organization’s Scientific Advisory Committee; Executive Management Committee; Council of Founders and Advisors; Dream Teams; Innovative Research Grantees; scientific partner, the American Association for Cancer Research; advocacy partners; donors; pharmaceutical industry representatives; and others, included scientific presentations, generation of new ideas, recognition and awards, and the announcement of a new collaboration with the American Cancer Society to fund a three-year, $20 million lung cancer Dream Team.
Both ACS and SU2C will provide $10 million each, with $5 million of Stand Up’s funding contributed by Bristol-Myers Squibb.
There are currently 11 active Dream Teams. Philip A. Sharp, PhD, Chair of the the Scientific Advisory Committee and Institute Professor at MIT’s Koch Institute for Integrative Cancer Research, said in a telephone interview that presentations by the original five Dream Teams were showing great promise.
He pointed to the keynote speech at the meeting by Food and Drug Administration Commissioner Margaret A. Hamburg, MD, which mentioned how FDA is addressing the Breakthrough Designation to bring new treatments to patients as quickly as possible by balancing risk with faster development. The FDA is just beginning to see some of the complexities of immunotherapy, Sharp said. “The number of therapies advancing now for cancer is astounding and there are some really promising new therapies.”
It is significant that the agency is keeping abreast of them and considers them important, and that Hamburg came to the summit to listen and learn more about SU2C’s efforts, he added.
Sharp was also critical, though, of the National Cancer Institute, saying that there is a lack of research programs dealing with immunotherapy. “NCI is sitting on its duff, and should be expanding its research and coordination in immune therapy in a number of cancers,” he said, intimating that he would be active in moving this initiative ahead.
Sharp praised the work of the original five Dream Teams:
- Bringing Epigenetic Therapy to the Forefront of Cancer Management;
- Targeting the PI3K Pathway in Women’s Cancers;
- An Integrated Approach to Targeting Breast Cancer Molecular Subtypes and Their “Resistance” Phenotypes;
- Bioengineering and Clinical Applications of Circulating Tumor Cell Chip; and
- Cutting Off the Fuel Supply: A New Approach to the Treatment of Pancreatic Cancer.
He acknowledged that they all have brought some new science to patients within the three years allotted by the cofounders, and said that among all Dream Teams, there are currently more than 100 clinical trials completed, under way, or planned.
On a personal note he said he was following the innovative approaches to pancreatic cancer a little more closely because three people he knew, including former MIT President Charles M. Vest, PhD, had been diagnosed or died of the disease during the past year.
The summit also included the introduction of the SU2C Philip A. Sharp Innovation in Collaboration Award, which invited Dream Teams members and Innovative Research grantees attending to discuss developing collaborations and complete proposals over the following two weeks to compete for four $250,000 research grants.
The second Laura Ziskin Prize in Translational Cancer Research was awarded to Gordon Mills, MD, PhD, Chair of Systems Biology and Co-director of the Institute for Personalized Cancer Therapy at the University of Texas MD Anderson Cancer Center and Co-leader of the SU2C PI3K Dream Team; and Taru Eliisa Muranen, PhD, Instructor and Post-doctoral student in Harvard Medical School’s Department of Cell Biology to explore how tumor cells in estrogen receptor positive breast cancer adapt to and resist treatment.
John A. Glaspy, MD, Chair of Stand Up’s Executive Management Committee and the Estelle, Abe and Marjorie Sanders Endowed Chair in Cancer Research at UCLA’s Jonsson Comprehensive Cancer Center, said during a telephone interview that he had made the recommendation of Mills and Muranen for the award based on a paper he had read by them and others in Cancer Cell: “Inhibition of PI3K/mTOR Leads to Adaptive Resistance in Matrix-Attached Cancer Cells” (2012;21:227-239).
Glaspy, who treated Laura Ziskin for metastatic breast cancer that was estrogen receptor positive, said that the selection committee wanted to keep in mind her vision for cancer research: high risk and translating to patient care, emphasizing collaboration, and thinking out of the box.
“We’d look around the landscape of cancer research for collaborations that would strike us as really good and wanted to find something that might not happen unless we got involved,” and the collaboration of a senior researcher with a more junior one made the pairing even better, he said.
The work by Mills and Muranen, Glaspy said, builds on the epigenetics research of Stephen B. Baylin, MD, Deputy Director of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital, and his wife, Feyruz V. Rassool, PhD, Associate Professor of Radiation Oncology at the University of Maryland School of Medicine, who were the co-recipients of the first Ziskin Prize, which was awarded in 2012.
“What Steve and Feyruz did was take the research to the 20-yard line, and now Gordon and Taru can take it into the end zone,” Glaspy said.
‘Hollywood Stands Up To Cancer’
Another feature of the summit was “Hollywood Stands Up To Cancer,” presented by the Entertainment Industry Foundation (EIF), which established Stand Up in 2008. Chairs of that event were Jim Toth and Reese Witherspoon, and there were musical performances by Christina Aguilera, Jamie Foxx, and John Mayer.
Conan O’Brien was emcee for the Culver City, Calif., event that allowed Hollywood to honor the scientists involved in Stand Up’s research efforts. Toth, who is married to Reese Witherspoon, also announced the “Jim Toth Sr. Breakthrough Lung Cancer Research Award,” in honor of his father, who died from lung cancer.
EIF President and CEO Lisa Paulsen, who is one of Stand Up’s cofounders, said during a telephone interview that having the summit near Los Angeles also made it possible to show the Hollywood community how its investment in the research and awareness effort has kept growing.
She said the collaborative research Stand Up model has demonstrated new ways to work with partners in academia and industry, and that the fact that science is moving forward so quickly has increased the challenge for those “of us involved in fundraising and getting ready for the next telecast.”
Sherry Lansing, EIF Chair and a SU2C cofounder, added that she thought the summit was the best ever and that it was thrilling that the work of the Dream Teams was actually getting to patients in so short a time. “It was significant that we were able to get Hollywood together to honor the scientists, and mix these two cultures that share a great deal in common, including passion and never giving up.
“A lot of people in that room had been touched by cancer and because of the Dream Teams, lives have been saved and people are living longer. But our real dream is to be out of business, and we will not be satisfied and will keep fighting until cancer is no more.”
Tuesday, February 04, 2014
The American Association for Cancer Research used the occasion of World Cancer Day today to announce plans to open an office in China – “to better support and promote collaboration among cancer researchers around the world,” according to a news release.
Further details, the release notes, will be discussed by AACR President Charles L. Sawyers in his Presidential Address at the Annual Meeting (April 5-9 in San Diego).
AACR CEO Margaret Foti, PhD, said the goal is to stimulate innovative international collaborations between laboratory and clinical researchers in China, across the Asia Pacific region, and other sites around the world.
Nearly one-third of AACR's 34,000 members are now from outside the U.S, with 12 percent of all members from Asia, according to information from the association, and there are plans to further expand the international presence to other countries -- efforts that will be led by AACR Past President Frank McCormick, PhD, FRS, Chair of the International Affairs Committee and Director of the UCSF Helen Diller Family Comprehensive Cancer Center.
Sunday, December 15, 2013
SAN ANTONIO – I’ve met many cancer survivors and advocates over the years, representing a multitude of singular nonprofit cancer organizations.
I was surprised, though, at the San Antonio Breast Cancer Symposium when I came upon Sandy Castillo, an advocate who is a spokesperson for several breast cancer groups, some of which are even somewhat competitive with others.
Her nametag identified her as with the Alamo Breast Cancer Foundation when she handed me a flyer for an event co-sponsored by Alamo. Then, during what began as a brief conversation, she mentioned several other national and regional advocacy organizations with which she was affiliated -- including Susan G. Komen, the National Breast Cancer Coalition, the Young Survival Coalition, the Research Advocacy Network, the Pink Ribbons Project, and CanCare.
About five years ago, she said, she was diagnosed with breast cancer a few weeks before her 40th birthday after moving back to Houston from Switzerland and while going through a difficult divorce.
By happenstance she discovered a small cyst and immediately went for a mammogram, which was inconclusive. Then, without a job and with limited short-term health insurance, she had a biopsy, which indicated cancer. Within days she had an appointment with a medical oncologist and following a lumpectomy of the stage 3 estrogen-positive DCIS she began chemotherapy.
But a gap before starting a new job and getting insurance meant waiting for radiation therapy. And she decided not to get the suggested BRCA test because she would have to pay out of pocket and already knew she had cancer -- although later testing proved negative. At times her treatment options seemed to be based more on insurance coverage than best medical practice.
A few months into her treatment, a Houston-based nonprofit health services organization selected her as one of 30 faces of breast cancer for a local news broadcast during Breast Cancer Awareness Month.
That interview led to other television appearances, and Komen’s Houston chapter asked her to become a spokesperson, which led to media training to help her deliver the message: “I thought breast cancer would never happen to me. If I can do it, you can do it. It’s not the end of the world, it’s not a death sentence, and you’re not alone.”
One day Castillo took a day off from her new job to hear Nancy Brinker speak during the Komen founder’s book tour for Promise Me: How a Sister’s Love Launched the Global Movement to End Breast Cancer. “Nancy inspired me to realize what I could be as an advocate. I was amazed at what she had done to pursue her mission and her promise to her sister Susan,” Castillo said, admitting she was speechless when meeting Brinker.
One thing led to another and Castillo, who kept a journal and blogged regularly about her cancer experience, was invited to join a panel discussion about support groups at a summit of collaborative Texas nonprofit breast cancer organizations.
She said she saw herself as a bridge builder helping to create movements, which she attributed partially to her undergraduate training in architecture. When her divorce was finalized and she received some settlement money, she decided to take a year off and dedicate herself full-time as an advocacy volunteer.
She joined CanCare, a nonprofit support network for survivors in Houston, which assigned her to work in an infusion center. She got involved with the Pink Ribbons Project; the Young Survival Coalition, where she served as a state leader in Texas; the National Breast Cancer Coalition (NBCC), attending Project LEAD; Alamo, for which she started the Houston chapter; and as a volunteer Girl Scout alumna, got involved in a fundraising event for breast cancer awareness with Houston’s (now-defunct) American Hockey League team, the Aeros.
She said that although this cross-pollinating among various organizations proved personally and professionally enriching, at times her attending events sponsored by certain groups raised eyebrows among the members of other organizations.
This year was an advocacy-packed year – she received 13 separate scholarships to attend conferences for young women involved with various breast cancer organizations. At the San Antonio symposium, she even managed, when she met AACR CEO Margaret Foti, PhD, to secure an invitation to the upcoming 16th Annual Scientist↔Survivor Program at the association’s Annual Meeting this spring in San Diego.
Armed with a business management certificate from San Jose State University, Castillo added another certificate in May from Rice University from the Leadership Institute for Nonprofit Executives, and is currently applying for what she calls PhD programs in “political health.”
She has served as a consumer reviewer for the Department of Defense’s Breast Cancer Research Program for Molecular Biology and Genetics Post Doctoral Fellowship Applications panel; as a Komen advocate in science; and has attended various summits and leadership conferences this year, spending time with James and Jimmie Holland, Sandra Swain, and Funmi Olopade, among other prominent researchers and clinicians.
Castillo noted that she had met both Texas Republican Senator Ted Cruz and House Democratic Minority Leader Nancy Pelosi to discuss NBCC’s proposed Accelerating the End of Breast Cancer Act of 2013; and at the ASCO Annual Meeting this spring, Julie Gralow asked her to speak at a Women’s Empowerment Cancer Advocacy Network (WECAN) event in Uganda in September about issues related to breast and cervical cancers.
Castillo also started lobbying with Alamo for Texas House Bill 149 in support of reorganizing the Cancer Prevention Research Institute of Texas (CPRIT). She said that after testifying before the Texas House Committee on Public Health about changing the bill’s wording to include having educated patient advocates on all CPRIT committees, she was told by a legislative aide that finding someone who was educated, a patient, and an advocate would be the “trifecta.”
“The six of us from Alamo were one of the only groups not asking the legislator for money -- we only wanted the wording to be inclusive” -- I told the aide there were six ‘trifectas’ standing right in front of him.”
Ultimately the wording was changed to include “educated patient advocates,” but when committee selections were made they consisted of mostly business people and physicians and not a single patient advocate, educated or not.
Castillo said she intends to continue enhancing her education as an advocate spokesperson, and hopes that one day all the volunteering leads to a full-time job.