Mariah Forster Olson, an ACS CAN Ambassador Constituent Team Lead (ACT Lead), traveled to Washington, D.C. this week to share her story as a childhood cancer survivor and to advocate on behalf of other patients and survivors during the 2019 Childhood Cancer Action Days.
Guest Post: Why Health Care Policy is Personal
It's my pleasure to share the following guest blog from David Weis, an ACS CAN volunteer, cancer survivor and recent graduate of Georgetown University. David currently resides in New York City where he is beginning a career in investment banking at Stifel Nicolaus Weisel. David is one of three courageous ACS CAN volunteers sharing his personal story to raise awareness about the importance of funding for research at the National Cancer Institute in our newest advertising campaign. Unless Congress acts to increase research funding, promising research could go to waste. With 1 in 2 men and 1 in 3 women diagnosed with cancer in their lifetime, and cancer costing our economy more than $216 billion this year, we can't afford any more delays. This isn't the first time David has shared his cancer journey to help improve the lives of others. In March, he joined U.S. Senators Chris Murphy (D-CT), Debbie Stabenow (D-MI), Sheldon Whitehouse (D-RI) and Angus King (I-Maine) at a Capitol Hill press conference that emphasized the importance of key provisions of the health care law for cancer patients and survivors.
I've heard it said that politics should never be personal that public debate and policy should be focused on the highest level of debate, independent of personal bias or experience, and with the broadest and most impartial horizon in order to come to an informed decision. I've been told from people who did not know my story that emotion or personal experience could make political judgment irrelevant at best and harmful at worst. I believe policy, and the political complexities that inform it, is personal. It cannot be removed from experience because, with something so personal as health care, policy directly influences the everyday experiences of millions of Americans across the country. This belief is rooted in my own story, starting on August 10, 2010. It was two days before my nineteenth birthday and just weeks before I moved into my freshman dorm to start college. By the time my primary care physician felt a small lump in my neck during a routine physical, and by the time my specialist at New York-Presbyterian Hospital ran a series of biopsies, I had a tumor several centimeters wide and deep growing inward through my neck. Out of the blue, I was diagnosed with cancer. I had surgery weeks before I began my freshman year. I underwent radiation therapy two months later during the week before Thanksgiving break so that I could be out of isolation long enough to see my family for the holiday. Without the lens of personal experience, health care policy ignores the possibility that I could have lacked insurance coverage. With my medical bills significantly beyond a quarter-million dollars I likely would not have been able to afford college without insurance, and my older brother who is now an emergency room nurse likely would have had to forego his education as well. As a nineteen year old, luckily insured through my mother's employer, I never worried about this throughout my treatment because I knew I had excellent coverage, though had I not, the months following my treatment would have looked much different. Circumstance enabled me to be cared for and instead focus on my treatment. The same cannot be said for a great number of people. Without the lens of personal experience, it is all too easy to forget the real possibility that somewhere in America a child could undergo cancer treatment uninsured and forego innumerable future plans under such a financial burden as cancer treatment. Without the lens of personal experience, it is all too easy to forget that people watch their brothers and sisters choose between lifesaving treatment and bankruptcy. Without the lens of personal experience, it is all too easy to forget the empty chairs at the dinner tables after the death of a family member due to a shortage of care, a lack of coverage, or the inadequacy of treatment due to a lack of research funding. Is health care policy personal?
My story gives me the conviction that it is. By that token, advocacy on behalf of and as a part of the cancer community is, for me, meant to bring forth that personal aspect of policy and funding. When asked to appear in ACS CAN's recent advertising campaign to increase research funding at the National Cancer Institute, I readily accepted, because I knew it would put a face to the debate it meant that I could make plain the personal nature of the cancer survivor community. By appearing in the advertisements to advocate for more research funding, I was able to make a more personal and possibly unexpected statement, particularly given my age and outward healthiness. My willingness to appear in these ads and to speak at an event with U.S. Senators earlier this year reflects my belief in the necessity of bringing a more personal nature to policy debates. The great paradox of cancer is that everybody seems to know someone with cancer a survivor, a current patient, or an untimely victim. Yet this paradox, in my eyes, should be used in order to remind our policymakers that the crusade against cancer is indeed personal. Can policy be impersonal? It can. Yet impersonal policy could all too easily ignore or even worse, forget the experiences of millions of cancer patients and survivors deeply affected by the effects of such policy. It ignores the realities of too many cancer patients with too few options in treatments, coverage, or recovery. Cancer research is important for several reasons, but most important is the pursuit of a higher standard of care, prevention, and treatment. Research is the trailblazer in the battle against cancer because it opens doors to treatments and preventative measures. Without strong funding for cancer research, the primary answer to a diagnosis is standard treatment; with increases in research and capacities for advancement, the hope for a cure - or, at a minimum, faster recoveries and cheaper, less invasive treatments - stays strong. Being an ACS CAN volunteer means advocating for the most unlikely of communities. It is a community that nobody "chooses, but instead seems to be one into which one is thrust, oftentimes through an unexpected diagnosis. The knowledge that I can, in some way, affect health care policy is important because it reflects the personal nature of the debate. In my eyes, it's not necessarily an obligation to "give back," but rather a call to "give forward" - through my involvement, it's tough to have a concrete or visible reward because it's difficult to say that my work has really reached any specific individual. Instead, advocacy through ACS CAN is directed toward the community of cancer survivors, family, and friends - those who have lived through the unfortunate circumstance of cancer but just as importantly reach those at the level of decision making on how to react and prevent future survivors and victims. The knowledge that my volunteering could encourage a family member or friend to get screened, wear just a bit more sunscreen, quit smoking, or live a bit healthier combines nicely with the knowledge that advocacy through ACS CAN reaches an even higher, policy-based approach toward systemic change. Good changes can indeed come from making policy personal.