Breast Cancer Patient Advocates at ASCO

Medically Reviewed by Melinda Ratini, MS, DO on July 10, 2024
5 min read

By Michelle Tregear

Michelle Tregear, PhD, a 15-year breast cancer survivor, serves as the chief programs officer for the National Breast Cancer Coalition (NBCC). Before joining the NBCC, she was a project director and senior researcher at AFYA Inc. and the ECRI Institute, where she directed dozens of federal contracts largely with the Department of Health and Human Services. Tregear holds a Doctorate of Philosophy in Psychology from the University of Colorado, Boulder. She has held postdoctoral fellowships at the University of Colorado, Boulder, Harvard Medical School, and the University of Pennsylvania. Tregear attended the 2024 ASCO Annual Meeting.

Every year, researchers, oncologists, other health professionals, and industry representatives gather in Chicago in early June for the American Society of Clinical Oncology (ASCO) Annual Meeting. They go to hear about the latest research in cancer care. Attendance and participation at this and similar scientific conferences have been growing over the past 10-15 years among patient advocates. 

You might be wondering why patients go to this highly technical, science-focused meeting. To better understand, it helps to learn about breast cancer patient advocacy and how and why patient advocates were involved in this year’s ASCO meeting. 

Over the last several decades, patient involvement in cancer research has grown from simply taking part in clinical trials and raising funds to being partners. We usually call these people cancer patient advocates or cancer research advocates. The National Breast Cancer Coalition (NBCC, the patient advocacy organization I work with) and others have three ways to define a patient advocate:

  1. A person who has been personally affected by the disease (such as a cancer survivor, family member, or friend) 
  2. Someone who works with a patient-centered organization responsible for and accountable to a group of patients
  3. A person who is knowledgeable, trained, and confident in their ability to take part in the decision-making process of science and medicine 

Most 20th-century breast cancer activism involved a few core goals, including: 

  • Getting rid of the message that breast cancer is somehow shameful
  • Giving people a voice in their health care decision-making
  • Creating awareness about how widespread the disease is
  • Raising funds for research 

With the NBCC’s launch in 1991, that role shifted to include political activism. Breast cancer patient advocates now demand a seat at the table where all decisions about breast cancer research and policy are made.

As a result of the NBCC’s work, the Department of Defense Breast Cancer Research Program (DOD BCRP) was created in 1993. Since then, it has contributed more than $4 billion to the worldwide breast cancer research community. Not only did advocates successfully help launch this new congressionally funded breast cancer research program, they also ensured patient advocates would help set the research agenda and help decide how research funds are spent. 

Breast cancer advocates attend scientific conferences first and foremost to learn about the current research in the field. With the growth of breast cancer research advocacy in the mid-1990s, advocates went from just being at such meetings to more active involvement, such as serving on panels and as authors on research posters and scientific presentations. 

On panels at conferences like ASCO, cancer research advocates give real-world patient views and represent the lived patient experience with cancer and its treatments. They remind health care professionals who are at the meetings of the sense of urgency patients face, and the importance of listening to patients and engaging them in shared decision-making.

At this year’s ASCO, breast cancer survivor Sabrina Mayhew shared her perspectives in a clinical session on next-generation antibody-drug conjugates (ADCs), a relatively new class of cancer treatments that combine targeted therapy with chemotherapy aimed at lessening the side effects of traditional chemo. The colorful language and media hype around the function of ADCs – “smart bombs,” “biological targeted missiles” – can produce hope among the patient community, she said, but can also lead to unrealistic expectations. 

ADCs still come with major toxicities, Mayhew said, and side effects the research community often minimizes as “manageable” and “tolerable” are not necessarily tolerable to patients. Even low-grade and non-life-threatening side effects – like diarrhea, nausea, fatigue, and changes in the way you think – can lower a patient’s quality of life and well-being a lot. 

Mayhew urged the researchers and health care professionals at the ASCO meeting to think about this broader context when assessing new treatments for patients, always keeping in mind that the primary values for patients are treatments that improve their quality of life, and remembering that involving patient advocates in research often and early will help advance patient-centered outcomes.

Breast and liver cancer survivor Patricia Spears took part in a clinical session on the use of circulating tumor DNA to find minimal residual disease (MRD) – a term used to describe a very small number of cancer cells that stay in the body during or after treatment – and its potential for making treatment most effective. She shared what patients want to know about MRD and tests that measure it:

  • Are the results of such tests meaningful? Is it something a patient would want to know?
  • Are they relevant? Will this information help patients live longer?
  • Is it actionable? Will it change their treatment?

Doctors should be able to clearly explain the test, what it is measuring, and what a positive or negative test result means. Spears said they shouldn’t just assume patients understand. Clear communication is key. 

Breast cancer survivor and longtime patient advocate Thelma Perry Brown focused on the physical, psychosocial, and financial challenges patients with early-stage breast cancer face during and long after their treatment. She suggested steps the oncology community could take to help patients get through them.

Phuong Gallagher, a 17-year survivor of stage IV rectal cancer in active treatment, talked about the long-term complications of her treatment, the limited information she was given at the start of her treatment, and what she could expect for the rest of her life. She urged doctors to talk about those topics with patients early on so they can make the most informed decisions about their care, consistent with their values.

These and other perspectives at ASCO and the bold action of patient advocates more broadly are important for shaping future clinical research. They also help change clinical practice more quickly by influencing the thousands of oncologists who attend.