Powerful Patients: Highlights and Takeaways from the 2014 Personalized Medicine World Conference

Every year, scientists, doctors, and representatives from pharmaceutical, diagnostics, and technology companies gather in Silicon Valley to talk shop at the Personalized Medicine World Conference (PMWC). For 2 days, they discuss the triumphs and challenges of diagnosing and treating diseases based on patients’ distinct genetic characteristics.

This year, the PMWC status quo was interrupted by a not-so-unlikely guest: the patient. Cancer Commons joined the event’s organizers to cohost a series of informative presentations for patients and advocates, delivered by doctors and researchers, as well as patients and advocates themselves.

“I met genetic oncologists, researchers, genetic luminaries and other patients like me,” writes Stacey Tinianov, who has breast cancer, on her blog. “I asked questions, answered questions, was asked to share my story, and felt extremely valued as a participant in the conference.”

From the start of the conference, the patient voice set an urgent tone. The morning of January 27 saw Cancer Commons founder (and melanoma survivor) Marty Tenenbaum, lung cancer survivor Neil Schiffman, George Demetri of Dana-Farber Cancer Institute, Vincent Miller of Foundation Medicine, and Edgar Staren of Cancer Treatment Centers of America (and sarcoma survivor) engaged in a panel conversation. News anchor Carolyn Johnson from KGO-TV ABC News moderated. They discussed the current state of personalized medicine in oncology and how to better serve patients through innovative clinical trial redesign and improved patient engagement.

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During the post-discussion Q&A, one woman stood up and shared with over 400 people that, just a week before, her husband had passed away from glioblastoma. Her own tears moved many in the audience to tears as she asked how she could share her husband’s story and biopsy tissue for research to help other patients. A woman with metastatic breast cancer asked how to find a clinical trial that could give her a new treatment and new hope.

“Those two questions highlighted real difficulties cancer patients and their caregivers face in navigating and actively participating in the health care and research system,” says William Wong, Executive Director of Cancer Commons.

For one, no patient should have to attend a conference to get the most up-to-date information he or she needs to choose the best treatment plan. It should be easy for patients to identify the clinical trials that are relevant for their condition and that might help them. In addition, it should be easy for patients to donate information about themselves for research and in return be notified as to what was learned from their information.

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As presentations for patients progressed, other insights emerged. Time and time again speakers and attendees remarked on how difficult it is for doctors to keep up with the latest in personalized medicine, and how the burden of this learning often falls to the patient or caregiver, who is urgently trying to find a solution to a personal cancer. The power of patient advocates and navigators was also a recurring theme; personal guidance can be critical in order to ensure that a patient gets the best treatment and the right support.

“I really appreciated the track for patients,” says patient advocate Sharon Anderson, who has been treated for a rare form of cancer called leiomyosarcoma. “The speakers were informative and impressive; can’t wait to go again next year.”

 

Here are four key PMWC 2014 takeaways for patients:

1. Molecular testing, molecular testing, molecular testing! These days, more and more treatments are being developed to treat patients whose tumors have specific genetic mutations. Panel tests like FoundationOne can even pinpoint mutations that could potentially be targeted by a drug originally developed for a different cancer type. Talk to your oncologist to find out if molecular testing might be right for you; if your oncologist is not familiar with molecular testing, consider getting a second opinion.

2. Advocacy groups. Patient advocates help you navigate all aspects of cancer treatment: from choosing the right doctor to finding appropriate clinical trials. Advocacy groups that participated in PMWC 2014 include the Bonnie J. Addario Lung Cancer Foundation, Latinas Contra Cancer, and The Kimball Family Foundation. Contact us if you would like assistance in finding an advocacy group.

3. Find patients like you. For many patients, talking to people who have experienced or are currently undergoing a similar journey can provide valuable emotional and practical support. Online forums such as Patients Like Me, Smart Patients, ACOR (including the leiomyosarcoma group), the MPIP for melanoma patients, and GRACE can be a good way to start. And if you are so inclined, help us urge industry and health care providers to break down barriers that prevent patients from learning from each other’s experiences.

4. Look into the SIGNATURE clinical trial. This is a revolutionary approach for patients with advanced cancer who may have exhausted standard treatments or are looking for a better approach. In contrast to traditional trials that group patients by cancer type, SIGNATURE is grounded in highly personalized treatment based on genetic mutations, which can be shared across multiple cancer types. Each patient whose tumor has undergone molecular testing and has been shown to exhibit specific mutations is eligible for enrollment in SIGNATURE. Shortly after enrollment, a patient begins treatment with a relevant targeted therapy for his or her distinct genetic mutation(s). Treatments are quickly adapted based on the patient’s response. Stay tuned for an upcoming blog post on this series of clinical trials.