LBBC leadership volunteers come together for Patient Advocacy Summit

Making conferences more accessible to people with cancer and addressing racial disparities were the center of discussion for Living Beyond Breast Cancer's Patient Advocacy Summit, sponsored by Novartis, held virtually the evening of January 28. Over 65 registered participants and alumni from LBBC's three patient advocacy programs — the Hear My Voice Metastatic Advocacy Program, Young Advocate Program, and Breast Cancer Helpline Volunteers — joined the discussion of recent medical news and ways breast cancer advocacy is changing.

The evening opened with a panel of LBBC patient advocates speaking about their experience virtually attending the 2020 San Antonio Breast Cancer Symposium, the annual breast cancer research conference held in December each year, and closed with another panel of advocates talking about their experience as advocates over the years and the changes they have seen in that time. In between the panels, medical oncologist Pallav Mehta, MD, spoke about some of the notable findings to come out of SABCS and answered questions on how they are changing treatment.

Virtual conferences

The conversation reflected many others that have taken place in the last year, inspired by two major changes to the ways we think and interact: the move to virtual programs and renewed attention to race and racism in the U.S.

The move to virtual events was a result of the COVID-19 pandemic that made in-person gatherings dangerous for most of 2020, and today. While the ability to move events, doctors’ appointments, work, and other things online was impressive, advocates reported that virtual events weren’t able to replace every part of the in-person experience. Hear My Voice Metastatic Advocacy Program alumna Lesley Glenn, from Central Point, Oregon, talked about the challenges that advocates face in fundraising without bringing people from all over the country together in one location or being able to hold events that draw people out for an evening and raise funds for research and support.

Lesley was also one of several advocates to speak about the way in-person events are a form of support that online programs haven’t been able to capture. Meeting other people from around the country and spending an evening or weekend together is a different way of connecting, and one they hope to get back to soon.

Despite these challenges, the evening’s speakers also saw how the ability to “attend” national conferences from home allowed more people to participate. Sarah Wald, a Young Advocate from Vancouver, Washington, was one of many women who was able to attend SABCS virtually this year after organizers made it free to patient advocates.

“I feel like I gained so much from the conference being online. So many of us were able to be there because it was free registration and we didn't have to travel and the sessions were recorded, so, like, if your kid interrupted you, you could come back and watch it later,” Sarah said.

Attending conferences like SABCS helps women understand breast cancer and their treatment options and also creates opportunities to speak with researchers and funders about their experiences and priorities. Sarah says she was reminded of the importance of having advocates who have been affected by breast cancer at these major medical meetings when she heard presenters say their research was inspired by questions or pressure from patient advocates.

Racial disparities

Stephanie Walker, an alumna of the Hear My Voice Advocacy Program from Tarboro, North Carolina, discussed how virtual access to cancer education and research programs can help address the ways Black people have been left out of important conversations. Stephanie wondered whether Black women would have been able to attend Knowledge is power: Understanding Black breast cancer, an LBBC program from this past fall, if it was held in person.

“We couldn't afford to come. Who's going to watch the kids? Who's going to cook the dinners? Who's going to keep the family unit together while you are gone a couple days?” Stephanie said.

Disparities in the outcomes and experiences of Black women getting breast cancer care in the U.S. compared to white women have gotten greater attention since the summer of 2020 when the murder of George Floyd by a Minneapolis police officer sparked demonstrations against police brutality and racism. Panelists spoke about the need for more attention to be paid to these concerns by researchers, pharmaceutical companies, policy makers, and advocacy groups.

Christiann Moses, a Young Advocate from Charleston, South Carolina, shared some of her important takeaways from SABCS, which came from studies that looked into the causes and  effects of racial disparities in health care. She also spoke about how advocates can help people in treatment for breast cancer speak up. Christiann cited one study that found doctors underreported the side effects from radiation and their severity in half the people studied, with younger women and Black women most likely to have their effects not reported.

“We know the importance of communication with our providers, and having that strong patient-provider relationship,” Christiann said. “When there is a disconnect or mistrust, it's difficult to communicate what's going on with your health.”

Lots to discuss

Though race and virtual access were popular topics throughout the Patient Advocacy Summit, there were many other topics discussed, including the need for more attention for metastatic breast cancer and for more diversity in clinical trials, to more accurately reflect the breast cancer community in the U.S.

There was also discussion of notable findings from SABCS, with insights and answers from Dr. Mehta to help attendees understand how these findings affect care at cancer centers around the country.

LBBC’s Patient Advocacy Summit was a place for many people to learn about recent research and how to get involved. It was also a way for people to find community with fellow patient advocates, to share strategies and experiences that have helped them in their advocacy, and a reminder of the ability of people with breast cancer to effect change.

“The power of advocacy to change the conversations that researchers are having was in so many different panels,” Sarah said of what she saw at SABCS. “It really reminded me how much we need to be keeping ourselves part of those conversations.”

If you are interested in learning more about patient advocacy and how you can get involved, LBBC’s Leadership Volunteer programs are a great place to start.

Thank you to the Summit's sponsor: