The Power Of Connection — Patients are Changing the Research Paradigm
Becoming An Informed, Self-Advocating Patient
When I was diagnosed with lung cancer years ago, my wife Missi, a nurse, told me that the first thing I needed to do was to become my own advocate—to be proactive in seeking information about my disease and my care strategy. As a healthcare provider she knew that I, as a patient could ask my doctor good questions and be more informed about decisions I would be faced with—such as what course of treatment I would select, and who would perform my surgery. Of course, this was in the early days of the internet, and before the advent of genetic testing and the era of precision medicine. Gathering information was done the old fashioned way: by going to the library and reading journals and books. And there were no tests being done to identify the specific molecular profile of my tumor. Sadly, even today, too many cancer patients die or suffer through toxic treatments and expensive hospitalizations when state of the art molecular testing could have offered better options with either approved treatments or promising clinical trials.
Most patients are not as proactive and self-advocating as they could be, and there is a need to raise this awareness about just how a newly diagnosed patient can become his/her own advocate. One way is to connect with other patients with a similar diagnosis, either online or in person.
The Power Of Connecting: The ROS1ders
More and more I am hearing about cancer patients attending medical conferences, such as Genitourinary Cancers Symposium, and even being part of panel discussions. In many cases, because of molecular testing that has identified a specific mutation, patients can meet other patients with the same genetic mutation. Some end up forming communities to share their common journey.
One example is a group with the identified non-small cell lung cancer (NSCLC) mutation called ROS1. Tori Tomalia, a two-time cancer survivor currently living with stage 4 NSCLC, helped form the group after attending the World Conference on Lung Cancer, where she made some connections with others with the same mutation. The group ultimately started a private Facebook page called “ROS1 Positive (ROS1+) Cancer,” and began connecting with other patients who shared the mutation. The group became a place to share treatment journeys, discuss clinical trials, exchange advice on symptom management and pool knowledge. As the group grew to over 100 people, they realized that they could make an impact and came up with the idea to approach a foundation about doing a custom research study. The group realized they could become their own advocates in a very big way by leveraging their numbers to hopefully move research forward. They contacted the Bonnie J. Addario Lung Cancer Foundation (ALCF) who agreed to get behind a patient-driven research initiative.
Molecular testing allowed this group of lung cancer patients to find out that they all have the ROS1 mutation. It is a rare mutation that affects only 1-2% of NSCLC diagnoses, but also one that has a currently approved treatment that targets this mutation, crizotinib (Xalkori). Xalkori was initially approved by the U.S. Food and Drug Administration (FDA) to treat patients whose non-small cell lung cancers harbor an alteration in a gene called ALK, which occurs in up to 8 percent of patients with the disease. In March, 2016 the FDA expanded the use of Xalkori to include lung cancers with a second abnormality, the ROS1 gene alteration. Because ROS1 also occurs in several cancer types including gastric cancer, ovarian cancer, glioblastoma, and melanoma, the ALCF wanted to focus on this under-studied rare molecular subset of cancer and understand what drives oncogenesis and disease progression in these tumors. So in collaboration with this group of cancer patients whose tumors have ROS1 fusions (they call them the ROS1ders), they launched a global effort to study ROS1 fusions across ALL tumor types.
This is a great example of patient empowerment and advocacy, which all began when a group of patients who met at a medical conference realized together they could make a difference. Using the power of social media, they built a community and took the initiative to approach a foundation to advance research. They hope that by providing tissue samples of their tumors, the ALCF can help translate their newfound strength in numbers into new mouse models, clinical trials and, eventually, treatments for ROS1. We’ve come so far with molecular testing—lung cancer patients now realize it’s not just one disease—and there are opportunities to connect with other patients with similar diagnoses and find targeted treatments or clinical trials for their specific mutation. I continue to advocate for more research funding because, like with these ROS1ders, we can identify more mutations, build more communities, and discover more targeted treatments.
|Dave Bjork is a lung cancer survivor who was diagnosed when he was 34 years old. He has spent the past 15 years advocating for patient education and cancer research. He connects individuals, businesses, academic institutions and other key influencers to forge strong partnerships in the fight against cancer. Learn more about Dave.|