ROS1+ Cancer Patients Partner to Increase Research
May 23, 2017, by Janet Freeman-Daily, MS, Eng
Janet Freeman-Daily is a lung cancer patient advocate and blogger who has been living with ROS1+ lung cancer since 2011.
In May 2015, I met four friends in a bar near Washington, D.C., to talk about not dying of cancer.
This conversation planted a seed that has grown into The Global ROS1 Initiative,1 a patient-researcher partnership that is redefining research into ROS1-positive (ROS1+) cancer. The Initiative includes a group of over 150 patients in 19 countries; two patient-focused foundations, Bonnie J. Addario Lung Cancer Foundation (ALCF) and Addario Lung Cancer Medical Institute (ALCMI); academic cancer researchers; and industry. The Initiative includes more than twice the number of patients enrolled in any ROS1 clinical trial thus far.
How did this happen? Let’s return to the bar.
Of the more than 150 lung cancer patients attending the 2015 LUNGevity National HOPE Summit, only we five had been diagnosed with ROS1+ non-small cell lung cancer (NSCLC), lung cancer driven by a gene fusion involving the ROS1 gene. We had communicated online, but few of us had met face-to-face. We all had children waiting at home, some as young as four. We were stage IV, taking crizotinib (a highly effective targeted therapy drug still experimental for ROS1),2 and thrilled to be living relatively normal lives – some (like me) even had no evidence of disease – given that our initial prognoses said we’d be dead by now. We knew our disease was rare (found in 1-2% of NSCLC patients),3 and that most patients treated with crizotinib eventually saw their cancer recur or progress. No other drugs targeting ROS1 were available.
We wondered how we might promote potentially lifesaving research into ROS1. We left the conference agreeing to do something, without knowing what that something should be.
Coming Together as (ROS) One
Creating a community of ROS1+ cancer patients seemed a good start. Within a few months, Tori Tomalia, Lisa Goldman and I started a secret Facebook group for ROS1+ cancer in which patients and caregivers could share treatment histories, clinical trial options, and tips for managing side effects. We also created a website and a ROS1 community on Smart Patients. Stuart Grief started tracking patient info such as location, diagnosis, and treatment history. We used our online presence and blogs to reach other ROS1 patients, and shared information about the group with our oncologists (who were researchers at major academic cancer centers).
When Lisa and I attended a conference as patient advocates, we met with ROS1 researcher Dr. Ross Camidge to discuss potential ROS1 treatment options. We asked him how we might entice more researchers to study ROS1. His answer? “Organize, and find some partners.”
Lisa immediately contacted long-term lung cancer survivor Bonnie J. Addario. Bonnie is a strong advocate for patients driving research, and offered to help us start a research project. We patients, (we began calling ourselves “ROS1ders”), developed a list of research goals and shared those with ALCF in December 2015. Dr. Guneet Walia, Senior Director of Research and Medical Affairs for ALCF, began coordinating with ROS1 researchers and industry to help the us reach those goals, and The Global ROS1 Initiative was born.
Based on the collaborative philosophy of ROS1ders, the Initiative is a true partnership between patients, foundations, and researchers, and all data generated by the Initiative will be made freely available to academic researchers as quickly as possible to speed development of new treatments.
ROS1ders and ALCF agreed our first project would be studying whether the ROS1der patients had any commonalities that might suggest a cause for our ROS1 oncogene. Working with patients and experts, the Initiative developed an epidemiological survey and data analysis is underway.4
The Initiative will soon announce its second project: creating new ROS1 cancer models from fresh biopsy and surgery specimens donated by ROS1ders. This reflects the high priority we ROS1ders place on exploring ROS1 biology and finding new treatments. Only a few models of ROS1 fusion-driven cancer exist; this project will hopefully ensure models are more representative of the many known gene fusion partners and organs of origin.5 Academic researchers will have free access to models created by the Initiative.
The Initiative also plans to administer ROS1der surveys through the Lung Cancer Registry. This registry will collect patients’ electronic health records, conduct customized surveys, provide ROS1 patients and researchers with access to its data, and recommend clinical trial options for enrolled patients. ALCF will eventually adapt the registry to accommodate all ROS1+ cancer types. Surveys might examine patterns of resistance mutations and whether treatment sequence influences outcomes (several ROS1 patients who had chemo followed by crizotinib have had no evidence of disease for years).
A key element of this project is the collaborative spirit, open communication, and respect among ROS1ders, clinical oncologists, researchers, and the Addario Foundations. ROS1 clinical researchers made themselves available to select ROS1ders over email to answer treatment questions that arose. ROS1ders shared de-identified data on our brain metastases and treatment histories to help a researcher design a new trial. A pharma researcher contacted a ROS1der they’d met at a conference to answer questions about trial availability for a much-anticipated third-generation targeted therapy. ALCMI arranged a meeting between ROS1ders and a company that creates patient-derived xenograft mice to help the patients understand the science behind cancer models.
The Initiative does face barriers. Online outreach doesn’t find patients who do not use the Internet. Materials and science concepts need translation for an international lay audience with diverse cultural norms. Many NSCLC patients do not receive genomic testing despite NCCN guidelines6, or cannot access or afford targeted therapy drugs and clinical trials. Perhaps the biggest challenge is disabusing healthcare of the notion that a patient must accept whatever their healthcare provider decides without question, even if the provider is not current on the latest molecular testing, treatments, and clinical trials.
Fighting for a Better Future
The ROS1 treatment landscape has evolved since that first meeting in the bar: crizotinib is now FDA-approved for ROS1+ NSCLC,7 ROS1 is part of the NCI MATCH trial, the entrectinib trial’s basket design allows any ROS1+ solid tumor, more than a dozen clinical trials target ROS1+ cancer with some promising results,8,9 and some research hospitals now offer remote second opinions that enable patients to consult top ROS1 experts without traveling. The ROS1ders recently created the public ROS1 Cancer Research Forum to stimulate discussion and help patients stay abreast of new developments.
Despite these advances, we ROS1ders recognize the pace of research and drug development will not be fast enough to save all of us. Since April 2015, Tori has received stereotactic radiation to brain metastases three times (crizotinib does not cross the blood-brain barrier), and Stuart died before the first survey was ready, having acquired a stubborn ROS1 resistance mutation. All told, ROS1ders have lost sixteen members to cancer in less than two years.
Still, we aim to change outcomes for future ROS1+ patients. We are part of the rising tide of “epatients”: patients equipped, enabled, empowered, and engaged in their healthcare. By initiating patient-researcher partnerships, we are changing the way genomically-driven cancers are studied.