Throughout October, we’ll be featuring powerful advocates from the YSC community. They come from diverse backgrounds, and each have unique approaches to advocacy. There’s no one way to be an advocate; we hope these profiles will inspire you on your advocacy journey.
Name: Kate Petrides
Age at diagnosis: 25
Age now: 30
Location: Jersey City, NJ
What is your advocacy focus?
Recently, my advocacy has focused almost exclusively on ensuring the Patient Protection and Affordable Care Act’s (ACA) crucial provisions and protections remain intact, in response to actions of the Trump Administration and some lawmakers to sabotage the law at every turn. In tandem with this, I am learning to become more involved in urging our representatives to work in a bipartisan manner towards the refinement and reinforcement of the ACA, as well as to ensure continued funding of the NIH and urgently needed, novel breast cancer research via the Department of Defense’s Breast Cancer Research Program (which is, itself, one of many Congressionally Directed Medical Research Programs). The fact remains that 40,000 women and close to 500 men continue to die every year from this disease, and young women face even poorer survival outcomes. Protection of patients and funding for research, including high-risk and innovative ideas like that which led to Herceptin via the Congressionally Directed Medical Research Program, cannot happen without the support of our federal government.
Prior to the current administration taking office, I was embarking on becoming a more engaged patient advocate focused on sharing information and representing young women diagnosed with breast cancer. I have attended two international medical conferences focused on breast cancer in young women, where I have tweeted throughout using #bcsm to circulate information to other women; I have penned a few newspaper articles for the wider public on subjects about which I felt passionately; I have spoken to college students about breast cancer; and, most significantly, I applied and was accepted into YSC’s phenomenal RISE advocacy training program which teaches patients about the science of breast cancer, as well as research, advocacy and policy. Through RISE, I have attended the National Breast Cancer Coalition’s fantastic Project LEAD and Capitol Hill Lobby Day and will shortly be attending the San Antonio Breast Cancer Symposium, among other great development opportunities.
What are the biggest issues in this area for young women?
I think it is clear that, as a country, we must ensure that all residents have access to affordable and robust health care (that is free from discrimination, caps, and the potential for financial devastation). Beyond that, from my personal perspective, the biggest issues facing young women who have been diagnosed with breast cancer are the disparities/less favorable outcomes for the young women patient cohort and the incremental gains in research, which itself does not focus on young women. A 5-year survival rate is insignificant to us, and we want research that focuses on understanding the disease’s presentation in young women.
How did you first get involved with advocacy?
Like many women, advocating for myself and my own treatment was my first involvement in advocacy!
Who do you advocate for - yourself? A friend or family member? Your community? Let us know by joining our social media campaign, #ImAdvocatingFor.
Receiving my breast cancer diagnosis at the age of 25 was an emotional, physical, and mental bombshell that I approached the best way I knew how: by attempting to learn as much as I could about the disease. So, when the opportunity to attend the European School of Oncology’s first ever Breast Cancer in Young Women conference came across my radar, I immediately applied to attend via a travel grant. I was told that patients were not eligible for the travel grant and that the conference was intended for healthcare professionals. Impassioned by the disconnect between the conference’s subject matter and the population it was intended to ultimately serve, I escalated the issue and wrote the organizers to make an appeal for my attendance. It was accepted and, in the midst of chemotherapy (a testament to my medical oncologist’s support of what was important to me), I attended 2 1/2 –day meeting in Dublin.
There, I had access to information, medical professionals and patient advocates who took a keen interest in young women. Under the experienced guidance and encouragement of another patient advocate (Dikla Benzeevi, who was highlighted earlier this month by YSC), I approached doctors who presented and were involved in the conference. It was eye-opening, educational, and extremely empowering.
I returned to the United States a more informed patient, which, by that time, I realized was a crucial component for my treatment. I brought topics like ovarian suppression and bisphosphonates (all several years ahead of more widespread adoption by US clinicians) to the discussion table with my medical oncologist. These discussions had a direct impact on my decisions and treatment, and I realized that, if nothing else, I would always have to be an advocate for my own health. What’s it all worth, though, if you don’t pay it forward! So, I’ve been trying to do just that ever since.
Tell us about something you’ve accomplished or taken part in that you’re proud of.
I am proud to have fought for the ACA at home and in DC, on behalf of all Americans who were unable to join or are no longer here. I also hope to participate as a consumer reviewer in the DOD’s BCRP grant review. I would be extremely proud and honored to be able to be given the opportunity to impact breast cancer research.
What’s your advice for someone looking to get started?
Find something that speaks to you – maybe that’s social justice and healthcare inequities related to breast cancer, the need for patients’ voices and perspectives in scientific discussions and research, or improving insurance coverage. I would only add a few comments:
- There are many nonprofits and efforts already in existence/underway, and synergy can be a powerful thing!
- Try to learn about as much of the science (or the issue) as you can, to engage with researchers, government officials, the public, and your friends and family in a meaningful way about why your advocacy focus point is needed.
- Find an advocate(s) you can look up to and ask questions of.
How do you cope after a tough day?
Remaining close to this disease can, at times, take a mental and emotional toll. It’s been a learning process for me to recognize how my stress, grief and pain manifest themselves – and another learning process to know when to take a step back and practice self-care. Sometimes this means saying out loud to my fiancé or a fellow young women with breast cancer, “I’m scared,” and having it heard. Sometimes it’s guided meditation at night or mindful walks in the morning or along the Hudson River.
