As the 50th anniversary of the National Cancer Act of 1971 approaches, the Livestrong Cancer Institutes’ Young Adult Advisory Board reflected on this landmark legislation during its last board meeting of the year.
The board is comprised of those impacted by cancer as young adults or under the age of 40 — including those currently in treatment for cancer, those who are in post-treatment and those who served as caregivers to a loved one with cancer.
These advisors with diverse backgrounds and diverse cancer experiences convene once a month to discuss the unique challenges that young adults face in cancer care and to codesign young adult programs and services with the Cancer Institutes.
Bringing Humanity Into Cancer Care
“Palliative care wasn’t even a thing 50 years ago,” says Liz Kapeel, a young adult cervical cancer survivor. For Kapeel, she sees the introduction of quality-of-life enhancers such as anti-nausea medication as bringing humanity into cancer care.
Sara Graff, RN, a young adult leukemia survivor, says that the benefits from cancer research extend to far beyond than just those who are impacted by cancer: “Cancer research leads to drug development for other diseases as well.”
Brittany Yelverton, M.A., a young adult breast cancer survivor, recognizes that now more than ever, cancer care incorporates a patient’s voice and quality of life. “I appreciate that considerations are now more often given to the financial impacts of cancer treatment,” says Yelverton. “Public discourse is beginning to normalize the cancer experience, particularly for young adults.”
During the meeting, the board also recognized that although incredible progress has been made in the past 50 years, cancer care in most settings is far from being fully focused on the whole person and that there is still room for improvement, particularly related to cancer disparities.
“There is still a lot of work to do in addressing the needs of underrepresented populations impacted by cancer communities of color and young adults,” says Rebecca Muñoz, MPH, a young adult breast cancer survivor and graduate of the Éxito! Latino Cancer Research Leadership Training.
Referencing her training, Muñoz shared that those in the Latinx community are notably underrepresented in federal cancer and drug studies compared to their total representation within the U.S. population. Yelverton, referencing the American Cancer Society, added that women who are Black are 40% more likely to die of breast cancer than women who are white, and are twice as likely to die if they are over age 50.
Anmol Desai, MPH, a young adult leukemia survivor, cited the American Cancer Society’s work in addressing disparities related to skin cancer, a kind of disparity that often goes unrecognized. The society’s research study found that after five years of a melanoma diagnosis, about 90 out of every 100 individuals who were white were still alive compared to about 66 out of every 100 individuals who were Black. Even when cancer was found at an early stage, on average, those who were Black did not survive as long as those who were white.
Chaitanya Muralidhara, Ph.D., who works in cancer research and was a caregiver to her husband when he experienced cancer, notes that being able to receive an accurate and timely cancer diagnosis and accessing life-saving medications can vary drastically depending on a patient’s race. “Understanding cancer disparities across racial groups has only just begun,” says Muralidhara.
The Livestrong Cancer Institutes are able to deliver whole-person cancer care and offer innovative phase I clinical trials largely because of initiatives born from the cancer act, but they also recognize that racial and other systemic barriers persist and continue to hinder even deeper progress. The Cancer Institutes are grateful to the Young Adult Advisory Board, whose tireless work helps to promote person-centered programs and aims to address cancer disparities.
If you have been impacted by cancer and have an interest in participating on a Livestrong Cancer Institutes advisory board, email the team at CaLM@austin.utexas.edu.