A Voice for Cancer Patients: Q+A with Patient Advocate Desirée Walker
Desirée Walker is a native New Yorker who serves on the Herbert Irving Comprehensive Cancer Center’s (HICCC) Patient Advocacy Board (PAB). After receiving her first breast cancer diagnosis at the age of 38, Walker quickly threw herself into patient advocacy and has worked with organizations and agencies to address health care inequities. In recognition of Breast Cancer Awareness Month, Walker shares her story and her experience as an advocate for cancer patients.
Tell us a bit about your journey as a patient.
My journey as a breast cancer patient began at the age of 38. After my annual mammogram I was contacted to come in for additional imaging. I had two areas biopsied, and in a few days, I was told that one area was benign and the other area was malignant. Then I heard "you have breast cancer". I underwent two lumpectomies, then radiation therapy followed by hormonal therapy which sent me into medically induced menopause. What an emotional rollercoaster that was! After that I received negative mammograms for eight years, but one morning I heard a voice say check your breast. During my breast self-exam, I felt a lump. Soon after, I heard the words “you have breast cancer” for the second time, and I knew this diagnosis was more aggressive. I underwent a bi-lateral mastectomy and breast reconstruction for implants. A week after surgery, I developed a hematoma on the side of my prophylaxis mastectomy, which required emergency surgery. The surgical site on the radiated breast opened and required weeks of special care. Adjuvant therapy was delayed for a few months until the wound healed and then I had chemotherapy and targeted therapy since the cancer was HER2 positive, which grows faster than other types of breast cancer. A few months after finishing chemotherapy, I received breast implants. Although the journey has been filled with highs, lows, and collateral damage, each day I feel blessed!
Why did you decide to become a patient advocate?
I was diagnosed at a time when there were no images of young adults or people that looked like me with breast cancer. I recall public service announcements only saying that the incidence of breast cancer was high for Caucasian women. After my recovery, I began outreach in communities of African heritage to share my story. It was important to me to be a face to the disease and encourage my community to be informed about breast cancer. I also wanted to empower them to speak up for themselves and not allow doctors to be dismissive if they did not feel right physically. After completing treatment for my reoccurrence, I went to Albany, NY, for a breast cancer lobby day. Learning how much we did not know about breast cancer, especially for persons of color, grabbed my attention and sparked my interest in research and legislative advocacy. I hope to be a voice for the voiceless and make a difference in the quality of life for those who have received a cancer diagnosis.
As a patient advocate, what are some of the needs you are frequently asked to address?
Young adults are usually concerned about health insurance coverage, fertility preservation, their ability to care for young children, medically induced menopause, body image, and sexual intimacy. Post-menopausal adults are usually concerned about their families, the impact of treatment on their ability to work, disability options, finances, support systems for child/elder care, and adequate health insurance.
Due to COVID-19, there has been an increased desire to understand the needs of underserved communities and to bring quality care and supportive services to people where they live. In addition, there has been greater use of telehealth during the pandemic, which has been beneficial to many. That said, I find myself advocating that it not be considered a panacea given the digital divide in this country. There are people who do not live in settings conducive to virtual appointments and many patients have limited technological proficiency. We need to educate providers on how to assess whether telehealth is appropriate in a given situation, so the patient has an optimal experience.
What made you decide to join the HICCC’s Patient Advocacy Board (PAB)?
The president of a company I was once employed at often said, "If you are not a part of the solution, you are part of the problem," and that has become my mantra. Though I am seen as a brown woman, my Caribbean and Latin American heritage has shaped a distinct lived experience for me as a native New Yorker, and it provides me with an opportunity to share a unique perspective. My invitation to join the PAB came when it was being formed under the new leadership of Dr. Anil Rustgi, and I thought it was a good place to share my time, talent, and contribute to making a difference in the lives of those diagnosed with cancer and treated at Columbia University Irving Medical Center and NewYork-Presbyterian. One experience that sticks out from my time on the PAB was at a meeting last year, when members were invited to attend the National Cancer Institute’s site visit of the HICCC. The high-level overview of the center and past achievements that the HICCC provided have been a great foundation for me as I weigh in on discussions as a board member. Post-pandemic, I am looking forward to working in-person again with my fellow board members and building stronger connections that are challenging to replicate virtually.
Why is diversity equity and inclusion a main focus of your advocacy work?
When I was initially diagnosed, I worked for a premier global firm in the financial industry which gave me access to top ranked providers and healthcare systems. I was both thankful for my access and sad to know quality care remains a privilege, so I made it a point to give my time, talent and treasure to organizations whose mission is to meet the unmet needs of underserved communities. My lived experience also taught me that the decision makers in schools, workplaces, politics, etc. did not look like me. After my initial diagnosis, I began doing outreach in the African American and Latino communities. This gave me the chance to hear firsthand what services were lacking and whose voices were not being heard.
Given the complexities of structures and systems that currently exist, I have been keenly focused on raising awareness on the lack of diversity, equity, inclusion and belonging (DEI&B) in health care. Over the years research has its ebbs and flows, but there seems to be greater traction on DEI&B since COVID-19 took the world by storm. In my ongoing quest to see health equity for all, DEI&B will remain a focus in my advocacy work.