Nov 09, 2023
In memory of Dr. Jeff Ward, the ultimate leader, advocate, doctor, mentor, and friend to all
By 2023-2024 ASCO President-Elect Robin Zon, MD, FACP, FASCO
Patient A.J. was diagnosed with an advanced esophageal cancer when she was 61. Her insurance did not cover clinical trial participation, denied her access to a much-needed highly effective anti-nausea medication, and delayed her palliative treatments as a result of prolonged pre-authorization. Her quality of life quickly declined and she succumbed to her cancer 8 months after diagnosis.
This patient scenario is far from uncommon. Whether due to challenges in the delivery of care, research funding, or regulatory issues, I have seen this scenario countless times during my 25-plus years in clinical oncology.
I am grateful for my outstanding clinical training in medical knowledge-gathering and query as well as participating in the rigors of scientific research. I felt well prepared as I entered community medical oncology as a generalist with an independent practice. However, what I learned very quickly was that my patients desperately needed a voice to represent and fight for their needs and rights. We have all witnessed how our patients and their loved ones are overwhelmed with the forever life-changing cancer diagnosis which triggers anxieties and fears as they try to understand their disease, treatment, and prognosis. Consequently, it is not reasonable to expect patients to know how to navigate the health care system for the best chance for good quality of life and extended survival.
Although my patients considered me their doctor treating their cancer, I felt compelled to be more, to be a voice that matters.
Seven Lessons for Effective Advocacy
Thankfully, there were oncology colleagues whom I met via ASCO networking who were of similar mindset, and we turned to our Society for guidance, training, and leadership in becoming effective advocates for our patients. What I discovered is that advocacy is simply rooted in some basic principles with nuances that modify the delivery.
The following are some of my lessons learned and pearls of wisdom that may assist you in becoming an advocate for your patients and practice site:
Identify the issue for which you are advocating. Why does this matter? Advocacy strategy includes offering a remedy that may involve legislative, regulatory, or funding actions.
Identify the key stakeholders involved. Delivering your message to an interested and invested decision-maker or party that can support and sponsor your message is key to advocacy success. Be aware of where the stakeholder stands on the issue and be prepared to address their concerns.
Focus the message and be gracious in educating the designated staff. Often, legislative staff may be new and inexperienced regarding the topic at hand, thus benefitting from a better understanding of the problem and subsequent remedy. Be clear in making yourself available as a trusted resource for the staff and decision-maker, thus becoming a reliable contributor.
Advocacy strategies can apply to both federal and state constituents. Organize your message accordingly and be knowledgeable of how state and federal mandates may differ. Respect and understand how local culture, economics, geographies, and demographics may affect your advocacy and the constituents’ bias and ability to act on the subject.
Be aware of where sister societies and other constituents, even those who oppose your remedy, stand on the issue. The decision-makers will have many stakeholders advocating on a particular issue; being aligned with natural partners, especially patient groups, adds strength to your voice.
Show you care by providing real-life examples of how patients are adversely affected by the issue at hand and examples of when your proposed remedies work. Utilize your innate passion for patient care to serve as a cornerstone for sharing your vision.
Don’t give up! Advocacy for an issue and its proposed remedy adoption is a process over time. Be patient and persist without exception.
Tools for Your Advocacy Journey
Rest assured, ASCO has many resources to train and assist you as you make your advocacy journey. There are a number of digital publications informing you of pending issues and ASCO positions on various issues, including ASCO in Action and ASCO ACT Network. The ACT Network has pre-written letters on current legislative asks to send to your local representatives with just a few clicks. In addition, other resources available to you include links to information on issues related to clinical practice, health equity, federally funded research, and the ASCO Association PAC. The ASCO Government Relations Committee (GRC) is always seeking volunteers and is open to hear your concerns. The GRC also hosts an annual Advocacy Summit, where volunteers meet staff and representatives on Capitol Hill after a day of training.
You can also get engaged on state-level concerns through ASCO. The State/Regional Affiliate societies offer an opportunity for local networking and policy development pertinent to the needs of your patients and institutions in your own neighborhood. To assist in alignment and advocacy efforts, there is a State Affiliate Council that meets regularly and provides ongoing communication between the affiliates.
Why Advocacy Matters
The real question is, does advocacy make a difference? The answer is a definitive yes! For instance, as a result of united voices advocating for increased federal research funding, more new therapies have been developed, and have received FDA approval more quickly, than in the past. Consequently, some patients whose disease was once deemed incurable are now living productive lives with good quality of life.
Other examples of advocacy intervention include Drug Repository Programs led by state efforts now becoming more available to patients, which is especially important in today’s climate of increasing drug costs and financial burdens of health care. Advocacy work also continues to contend with the burdensome issues such as pharmacy benefits programs and pre-authorization.
More work needs to be done and new issues will continue to arise—so we need you and your patients need you to serve as their voice!
I started this article about Patient A.J., who was my mother. But I will end this article by sharing with you a patient’s joyful story—a woman with widespread HER2-positive breast cancer, diagnosed 24 years ago, is now nearly 90 years old, remains free of cancer, and is currently off all treatment. Her story encourages me that our patients’ future is bright.
Your role as a scientist, clinician, and advocate is imperative in this ongoing transformation of cancer to a more preventable, curable, and controllable disease. Our collective advocacy will bring this transformation into reality for our patients. I trust in your power to continue this trajectory of change and I believe that (y)our voice matters!
Dr. Zon is the 2023-2024 ASCO president-elect and will serve as 2024-2025 ASCO president. She is a physician emeritus at and former president of Michiana Hematology Oncology in Mishawaka, IN, and director of breast cancer at Cincinnati Cancer Advisors, a not-for-profit clinic. She was honored for her advocacy work with ASCO’s 2017 Advocate of the Year Award.