Fight Every Battle, Target Every Weakness
By Allison Bailey Olson, Melanoma Survivor, Diagnosed at 21
I was diagnosed with cancer at 21 and acutely aware of how fortunate I was to have quality health insurance. My first job offer was exciting and heartbreaking; my oncology team was out of network under my employer’s plan. But the Affordable Care Act made it possible for me to stay on my parent’s plan until the age of 26.
Running the numbers every time my husband and I pursue career moves, we’ve found ourselves on the Healthcare Exchange often, looking to identify the best possible coverage given the circumstances I face as an AYA cancer patient and survivor.
Over the past 7 months, hundreds of thousands of people have called and written their representatives, filled with anxiety and apprehension as we face the potential repeal and replacement of the Affordable Care Act. Much like a cancer diagnosis, we feel like we have no control and become discouraged when our advocacy efforts seem to be falling on deaf ears.
When I was asked by Critical Mass and First Descents to join them on the hill, I was excited to support, but apprehensive about the fact we would not be focusing on the health care debate. My peers and I are dependent upon the ACA for both short and long term survival. Lobbying for other issues seemed trivial. Yet, I felt compelled to understand other critical issues and was intrigued by other issues facing AYA cancer patients and survivors.
Our day was packed. I sat listening intently, learning more about the challenges faced by peers, memorizing the statistics and eager to deepen my impact and engagement. My initial apprehension was met with excitement and energy, as I looked to create a medical “home” for AYA cancer patients, who sadly fall through the gaps with providers, research and facilities geared towards pediatric or older adult cancer patients.
While there was a part of me that wished I could give staffers a piece of my mind, I recognized that given the current political landscape…
Finding common ground has never been more critical.
By advocating for specific legislation geared at improving AYA cancer patients and survivor’s financial toxicity, fertility preservation, and overall treatment options, I knew that our demographic would not be ignored. I knew that federal funding could offset private sector efforts, furthering the impact of private sector investments by reducing the burden of common denominators such as student loans, which often result in AYA cancer patients and survivors going into forbearance.
It is important as advocates that we understand all the needs of adolescent and young adult cancer patients and survivors from health care reform to infertility.
While we fight to survive, others fight many more battles that we can’t begin to comprehend. Through Critical Mass, I was directly able to raise awareness and advocate for patients and survivors who have fallen through the cracks.
When faced with trauma, every therapist will tell you to find areas in your life where you can assert control and have measurable influence. For me, that has come by exercising self-care and focusing on positive outlets like raising funds for cancer research and supporting efforts that focus on the psychosocial needs of young adults impacted by cancer.
I have found myself continuously saying, “Yes, I’m happy to help” or “I’d love to connect with those individuals to better understand their needs and ways I can support”. While not all of these initiatives are directly linked to the current debate, each of these efforts makes me feel that in some way I am moving the needle. I am creating a space where AYA cancer patients and survivors are recognized. A space where the needs of this specific demographic, whether a senior in high school, a new father, or an aspiring mother, and everything in between, are recognized and met.
We each have our own personal experiences that drive our desire to create change. Whatever our reason, we all come with stories, unique experiences, and challenges that need to be addressed. Stories of late diagnosis, limited treatment options, infertility, and lack of awareness, inaccessible healthcare, and limited research funding. Sadly, the list is long and the issues are deeply ingrained in the entire oncology field from the provider to the policymaker.
Much like an invasive tumor, we must target every weakness in the system, introducing new regimens and approaches. We must find our own control mechanisms amidst the chaos.
Your story matters, our collective story matters. I am proud to support Critical Mass and raise my voice to transform adolescent and young adult cancer care and delivery services in the United States.
Allison Olson is a Massachusetts native, currently living in Alexandria, VA with her husband and dog. Passionate about volunteering and philanthropy, she pursued a career in corporate social responsibility. She continues to utilize her experience with melanoma to create awareness, advocate and raise funds to improve cure rates and quality of life for cancer patients and their families.