A little more than four years ago, longtime friends Tom and Carman Duvall, and Kiers and Steve Rowley reminisced at dinner about their lives in the 1980s, long before their schedules had grown complicated and filled with endless trips driving children to various activities.
Tom, a child of 1980s rock and roll, wondered aloud whether Def Leppard might perform for them on his next birthday. Conversation meandered during the evening, and when the check arrived, Tom and Steve advised Kiers and Carman that a date had been set for a rock concert on the Duvall property in Independence, Missouri, and that it would be a fundraising event to support patients suffering with cancer. Kiers, who’d struggled with lung cancer for the past five years, and Carman announced “We’re in.” So began an all-day-long summer music festival and tradition resembling Woodstock, that the four friends named Tomstock. Continue reading…
In 2014, a dedicated team of Deloitte colleagues joined forces to help cancer patients find the best treatment options for optimal outcomes. They made their first gifts to Cancer Commons in memory of Jackie Tran. Ms. Tran was a Deloitte partner who received support from Cancer Commons’ ASK service while navigating her treatment options for ovarian cancer.
Since then, over $300,000 has been raised from more than 200 generous participants. These vital financial contributions flowed through the Deloitte Shine Project and grew with additional support from the Deloitte 114+ Community and Deloitte WIN. Leadership was provided by many key Deloitte angels, including Houston’s Patti Wilke, Dallas’ Pam Downs, Los Angeles’ Gina McLeod, and especially San Jose’s Heather Rangel, who accepted an invitation to join the Cancer Commons Board of Directors last year.
This year, in addition to many other contributions, we want to acknowledge a special donation made in memory of Deloitte staff member Christine Ito. This gift in Ms. Ito’s memory came to Cancer Commons as the result of a Health and Wellness Charity Challenge sponsored by Chicago’s Sarah Cuthill at Deloitte University in January 2017 with support from the Global Employer Services Senior program. Continue reading…
Cancer Commons provides expert, personalized guidance to patients and caregivers around the world through our ASK Cancer Commons service. Recently, we plotted the distribution of our ASK users on a world map to see where they live. We found that about 2,000 people in more than 44 countries have sought help from Cancer Commons.
“Cancer Commons is catering to an international audience and therefore has great potential even beyond the U.S., where the majority of under-served cancer patients may be present,” says summer intern Usman Raza, a graduate student at U.C. Berkeley School of Information, who prepared the map.
Further analysis revealed more about who uses the ASK service. We found that about 60% of ASK users are female, and one third of ASK users contacted us regarding their (or a loved one’s) lung cancer treatment. Other common cancer types were skin (14%), breast (13%), and gastrointestinal (10%) cancer.
We have received questions about cancer treatment for people of varying ages. Five percent of questions were regarding cancer in patients between 0 and 30 years of age. Twenty-nine percent of patients were between 30 and 50 years of age, and 53% were 50 to 70. Thirteen percent of questions were regarding patients 71 years old or older.
This analysis illuminates the diversity of people benefiting from our ASK service and will help guide our efforts to continue to improve the way cancer is treated for patients around the world.
In the PMWC 2017 discussion, Dr. Tenenbaum focused on the question: When faced with certain death, is it acceptable to accept less than 100% proven safety and efficacy? Patients with glioblastoma and certain other cancers with dire prognoses do not have the time to wait for new treatments to be fully approved by the FDA. Is it time to add ‘conditional approval’ as an additional pathway to approval for these patients? In the session, he described a plan that will be proposed by which the FDA could “conditionally approve” a treatment that has been proven safe in a clinical trial(s) with at least 25 patients, and has demonstrated biologic activity. Therefore, this treatment could not be denied by insurance as being “experimental.”
In a recent Xconomy article on cancer DNA testing, Cancer Commons medical director Kevin Knopf shares his perspective:
“To help all patients we think an open-source database has the most utility,” says Knopf. Instead of current tests that list a patient’s mutations and potential drugs to use, a report should rank therapies the way online travel sites rank best options.
Last week, Cancer Commons founder Marty Tenenbaum spoke at the Precision Medicine World Conference (PMWC) in Durham, NC. He presented a proposal to significantly accelerate patient access to promising investigational drugs, using a new pathway to approval by the U.S. Food and Drug Administration (FDA).
The proposed Conditional Approval pathway aims to help cancer patients who may have exhausted existing options access new, promising treatments.
“It’s an idea whose time has come, and the conference provided strong validation, including some personal communications from several prominent FDA officials (past and present) who were in attendance,” Marty says. “We are currently in discussions with the FDA, and hope to be able to pilot Conditional Approval in brain cancer where the prognosis is dire.”
Since the beginning of high school, Cancer Commons supporter Sheri Sobrato Brisson has been working with families facing pediatric illness. “As soon as I was 16, I started volunteering in hospitals with kids with cancer, not knowing that I would grow up one day to be one of those patients myself,” she says.
At the age of 24, Sheri faced her own diagnosis: a brain tumor. Now a long-term survivor—Sheri celebrates 30 years of survivorship on May 7—she continues to dedicate her time, energy, and resources to helping children with serious diseases and their families. Continue reading…
Cancer Commons founder Marty Tenenbaum, Ph.D., will speak at the upcoming Precision Medicine World Conference (PMWC) in Durham, NC, which runs May 24–25. Marty, who founded Cancer Commons after his own battle with melanoma, will discuss the organization’s ongoing efforts to address challenges to knowledge-sharing in precision oncology.
Read the synopsis of Marty’s presentation, entitled “Is An Additional Path to FDA Approval Possible?”:
This talk will explore the question: When faced with certain death, it is acceptable to accept less than 100% proven safety and efficacy?Patients with glioblastoma and certain other cancers with dire prognoses do not have the time to wait for new treatments to be fully approved by the FDA. Is it time to add “conditional approval” as an additional pathway to approval for these patients? In this session, a plan will be proposed by which the FDA could conditionally approve a treatment that has been proven safe in a clinical trial(s) with at least 25 patients, and has demonstrated biologic activity. Therefore, this treatment could not be denied by insurance as being “experimental”. However, the requires patients using these drugs to participate in a registry through which their physicians submit details on the treatments, side effects and outcomes. The FDA’s periodic review of the registry data would lead to a range of outcomes from full approval to the conditional approval being revoked.
Marty’s talk takes place on May 24 at 2:45 pm. For more information, visit the PMWC website.
Oncologist and Cancer Commons Medical Director Kevin Knopf, MD, will speak next month at TiEcon 2017, a technology conference in Santa Clara, CA. He’ll join three other experts to discuss the future of personalized medicine. From the program:
A new era of personalized medicine has made its way into the world of healthcare. We will discuss novel approaches for designing disease treatment and prevention that integrates with an individual’s genetic profile, environment and lifestyle.The future is here — let’s hear from industry luminaries on how digital health entrepreneurs and the healthcare industry as a whole are preparing for massive disruption.
Kevin’s presentation will take place on May 5 at 3:00 pm. For more information, visit the TiEcon website.