A primary goal of the Kilimanjaro Climb is to raise awareness of cancer clinical trials to ensure that patients and their families have access to studies and can make informed decisions.
Rick Bangs, Chair of the SWOG Patient Advocate Committee, recently shared his views on advocacy in cancer research.
The Hope Foundation: What does it mean to be a patient advocate?
Rick Bangs: The work of a SWOG Patient Advocate is incredibly rewarding – we partner with the best and brightest cancer researchers to improve the quality and quantity of life of cancer survivors. We help determine if a new approach is better than what is currently available, and I cannot think of anything more exciting than that.
THF: What do SWOG Patient Advocates do?
RB: The simple answer is that we are the voice of the patient in the design, development, and delivery of safe, effective, and efficient cancer clinical trials. That simple statement can take a lot of different forms, from determining how important a trial is to the survivor community to validating the trade-offs survivors will face when participating in a treatment (such as side effects versus additional survival) to suggesting actions that will increase the number of patients who are choosing to participate in a clinical trial.
THF: Why are clinical trials important?
RB: As survivors, we are standing on the shoulders of those who came before us, the brave men and women who at some time in the past were brave enough to say “yes” when something new and different was offered to them. They have shaped today’s treatments and ensured that we have the best choices that medical science can offer us. That is their legacy to us.
But today’s options are only as good as yesterday’s knowledge – they look to the past. We must look forward and assimilate the rapidly expanding science of cancer. Without clinical trials, we will be stuck with today’s options. For many cancer survivors, this will mean poor quality of life. Some will die.
We can and must do better – we owe that to the people who have fought the good fight but have been lost to this disease and those who have yet to begin their battles. SWOG and the other members of the National Clinical Trials Network (NCTN) are dedicated to this, and constantly look for ways to apply new science to create tomorrow’s better choices. That is OUR legacy.
THF: What are some of the myths surrounding clinical trials and how do advocates dispel them?
RB: Clearly the most common myth is that clinical trials are the last desperate act of a dying cancer survivor. The fact is that clinical trials focus on prevention and every aspect of the entire cancer journey. Americans generally have low awareness of the breadth of the clinical trial spectrum and the possibilities clinical trials offer to cancer survivors. In adult cancers, this results in very low participation in clinical trials, something approximating an abysmal 3%. This contrasts with childhood cancers, where the participation rate is a clear majority.
SWOG Patient Advocates and their NCTN counterparts, along with cancer advocacy groups, are continually promoting clinical trials with the goal of every survivor being offered that choice and then making an informed decision about whether participation is right for them.
THF: What do you think of Dr. Blanke climbing Mt. Kilimanjaro to raise awareness and funding?
RB: I love it! The challenges of a decade-long decline in funding on an inflation-adjusted basis, coupled with the awareness issues, cannot be overstated. Changes are critical to maintaining momentum and are needed now. We need people to understand the impact on cancer research being done on their behalf. Dr. Blanke’s climb has great support among the SWOG and NCTN membership. There is excitement about building awareness of the incredible work that we are doing and the amazing possibilities that we can harness if we overcome our current challenges.