Metastatic Breast Cancer Alliance Empowers Patients to Learn About Clinical Trials

The Metastatic Breast Cancer Alliance (MBCA) launched a campaign to bring awareness of clinical trials to more individuals with metastatic breast cancer.

The campaign was announced prior to the launch of MBC Connect 2.0, an interactive patient registry designed to empower individuals to collaborate with researchers and, with this new release, potentially match patients with clinical trials.

CURE spoke with Shirley A. Mertz, chair of the MBCA and a patient herself, about the new initiative and how her experience has inspired her advocacy work. Mertz was diagnosed with early-stage breast cancer in 1991 and underwent a double mastectomy. However, in 2003, metastatic lesions were found on her spine. Mertz has since had slow progression, but is “still standing” years later, she says.

“I decided one year after my diagnosis of metastatic breast cancer to devote myself to advocacy, using my voice and my story to reach out to other patients, to help them with information and hope that if they sought knowledge, they could have a good outcome,” Mertz said.

With that, she and the MBCA are hoping to make it possible for every patient to easily identify trials that might be a fit for them.

CURE: What are the current barriers to clinical trials now?

Mertz: Unfortunately, there are fewer than one in 20 people who participate in trials across the country in all cancers. I think an important thing to understand with metastatic breast cancer is that, at the present time, it is an incurable disease. Patients are always in treatment, and when they progress, our oncologists are challenged with selecting the next treatment for us. The only way that next treatments will exist or do exist is because of patients who decided to participate in clinical trials, which look at a standard treatment and how it might perform against a newer treatment that show promise in a smaller study. So clinical trials are the key to finding new treatments and with that in mind, we want people to consider participating in trials.

To your question, some people think, “Well, if I'm offered a trial, it means that I have no other option. I'm on my last leg.” And that is not true. In addition, patients have trouble finding the trial. Clinicaltrials.gov is an amazing website that lists all of the trials that are going on in the United States, but it is difficult to understand.

How can MBC Connect 2.0 help?

What I'm really excited that MBC Connect 2.O will be offering to patients is the opportunity to receive information that matches their disease history and takes into account what treatments they had. The trial is presented to them in a fashion where it is easy to understand what is being studied and what they will be expected to do if they participate. We think it will be a way to promote interest in trials and remove the fear that sometimes people have about them. And we hope that it would increase the number of people that participate in trials.

What would you say is your biggest piece of advice for another patient who is maybe thinking about joining a clinical trial?

One of the things on the Metastatic Breast Cancer Alliance website that we recently developed is a two-page brochure called the Patient Clinical Trial Checklist. There are 10 questions there that we suggest a patient be sure they ask (their oncologist) and understand the answer before they make a decision about joining a trial.