Devon Ciampa is the Ulman Patient Navigator at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center. Join us as we sit down with her for a conversation about how her work has looked differently through the COVID-19 pandemic.
Q: How has your work as a Patient Navigator changed since the COVID-19 outbreak began?
My focus has shifted slightly to manage a higher number of financial and housing assistance requests from my patients. More patients are seeking financial help as they experience job loss and bills pile up, and many long-term patients are seeking affordable housing near Hopkins. There is an understanding that even once COVID-19 is more controlled, financial hardship will only grow for many AYA cancer patients and their families. Therefore, part of my job now is to remain in constant contact with various organizations to stay on top of what resources are or are not available to patients moving forward.
Q: What are the most significant ways COVID-19 has changed how AYA patients receive their cancer treatment/care?
Telehealth is being utilized much more and therefore, the connections and relationships AYA patients have built with each other and with the medical staff are being affected. It’s harder to sustain meaningful connection through the computer screen!
AYA patients are used to having family and friends with them during treatment, but the restricted visitor policies force them to be alone in the adult hospital and with just one adult in pediatrics. This causes more isolation for an already isolated population. Many patients are enduring treatment and procedures alone, often for the first time since their diagnosis.
The financial strain AYA patients face is greater with COVID-19 too. Some free housing options aren’t available, and some organizations that usually provide financial assistance have cut back or run out of funding. Patients also face higher wait times for SSI or unemployment assistance.
Q: In addition to those big changes, what are one or two smaller shifts that have occurred, that we might not have thought about?
Strangely, some patients who dreaded coming to the hospital before now enjoy being there because, as they state, it’s a break from their home isolation and might be their only chance to interact in-person with people other than family.
Q: What are two or three tangible things advocates/supporters can do to help cancer patients right now?
Participating in philanthropy is a great way to support this population. Patients’ financial needs are growing while financial assistance organizations are being depleted quickly of their funds, so giving to an organization that helps support these patients financially is a high need right now.
It’s difficult to support patients in person due to social distancing and hospital visitor policies, but letters, care packages, and video messages remind patients that they are being thought of and still have a support system, and help ease their boredom and feelings of isolation.The need to bring to light the issues surrounding the AYA cancer population is at an all-time high. Cancer does not stop just because there is a pandemic and AYA patients’ needs are going to be even greater as the pandemic continues. Spreading the word about this population and sharing your passion as an advocate on social media or talking with friends are great ways to keep this population on the forefront of people’s minds.
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