Rose Gerber, MS, director of patient advocacy & education at the Community Oncology Alliance, Washington, DC, spoke with the Journal of Clinical Pathways about her experience as a cancer patient advocate and shared advice for those who are interested in becoming advocates. She participated in a session titled “Stronger Together: The Power of Advocacy to Support Patients & Practices,” at the 2024 Community Oncology Conference.

Transcript:

Rose Gerber: I'm Rose Gerber. I'm the director of patient advocacy and education for the Communion College Alliance, and I'm also a 20-year cancer survivor.

Can you share with us a bit about your personal journey as a cancer survivor and how it has influenced your role as a patient advocate?

Rose Gerber: I was diagnosed 20 years ago, so I'm very happy to say that, again, I'm a 20 -year cancer survivor. And I was diagnosed under the age of 40, which is very young for breast cancer. And at that time, I had a 6-year-old and an 8-year-old. And like many cancer patients, it was extremely devastating, extremely devastating. And it was a very difficult time to go through and even though by nature I'm a very extroverted person, I became incredibly, incredibly private because I was so fearful of, you know, not living and didn't want to scare my young children and it has been quite a journey.

Having been through the cancer patient experience has been very important for me as a leader training other advocates and that's because I deeply understand the patient experience, from the time of initial diagnosis to being a 5-year survivor to now being a long-term survivor.

And I believe that having all of those insights helps me teach other advocates how to be a good advocate and to move beyond their own personal experience and helping others.

What message did you hope to convey to your audience during your talk?

Rose Gerber: Yesterday I was honored to be a panelist on a session called “The Power of Advocacy,” and my goal for that panel was to teach advocates about the many different ways of advocacy and many different forms of advocacy. There, for example, could be speaking at a conference, there could be an interview for magazine, but also there's things like writing a letter to the editor. There’s sharing information on social media, there's becoming a research advocate, there's many different forms of advocacy. There's media advocacy, there's fundraising advocacy. So I try to teach advocates to open their minds and realize that they can find a type of advocacy that fits their personality, that fits their style. Some people are very good at fundraising, maybe that's an avenue that they could take, but there's a lot of different ways that a person can become a very effective advocate.

And as a nationally recognized advocate, what do you see as the most pressing challenges facing cancer patients today? And how can advocacy play a role in addressing these challenges?

Rose Gerber: One of the biggest challenges for cancer patients is that there's so many issues that they could potentially get involved with. And I think again that the cancer patient or survivor who's new to advocacy, they need to ask themselves, "What do I see myself doing?". Many cancer survivors are best or prefer to stay within their disease state. For example, before I worked for COA, I was involved in breast cancer advocacy because I'm a breast cancer survivor. However, as my advocacy knowledge continued to grow, I wanted to expand my knowledge out of the breast cancer space and learn a lot more about health care policy.

With all the issues that advocates are faced with, one of the most basic things that advocates can do is to talk about the issues, to bring the issues to the forefront, and let other people know what some of their concerns are. So for example, with COA right now, we're doing a lot of work around any issues that impact the relationship between physicians and patients. So we're going to talk about issues like pharmacy benefit managers, prior authorization.

But again, as I mentioned earlier, if you're working on a disease specific type of advocacy, you might need to find what the hot topics are in that specific space.

How do you envision the collaboration between patients, health care providers, and advocacy organizations can improve the overall experience of outcomes for cancer patients?

Rose Gerber: I think one of the most important things when you're talking about getting the different groups together—patients, physicians—is that patients and advocates need to be brought in at the very beginning of the process. We always hear that the patient voice is the most important voice, whether you're at a conference and you're going to Capitol Hill.

However, what I know from my 20 years of advocacy experience is even though we always hear the phrase, we should be patient-centric, put the patient at the front. Oftentimes the reality is the patient is thought about at the end of the discussion. And they're like oh, we need a patient. We need to get the patient insight. Whatever you're working on, whether it's a research project, a media article, bringing the advocates in at the very beginning because they have a right to be at the table from the very beginning.

And they do have incredible insight and incredible knowledge, oftentimes not only just about their disease state but again about the greater health care policy landscape. And their knowledge is very very important to the conversation. So we want it to be bi-directional, we don’t want it just to be the physicians or the organizations, you know, running the agenda. The advocates have to come in from the beginning and that to me is the most powerful collaboration—when you're brought in as true equals at the beginning of whatever initiative you're working on.

What advice would you give to individuals who are passionate about advocating for cancer patients but may not know where to start or how to get involved?

Rose Gerber: The most important thing I think for anyone who wants to get involved in advocacy, particularly if they are a survivor, because again, not all advocates are survivors. They might be caregivers. You have to really ask yourself, are you ready to be an advocate? And one of the ways that you answer that question (are you ready to be an advocate?) is [ask yourself] can you be an advocate outside of your own personal experience? As I mentor and teach advocates, that’s oftentimes is very hard for advocates because your individual story is so important. That's what forms us as advocates.

That's why many advocates, many survivors, get involved in advocacy. But again, advocacy is not only about your personal story. So you have to say, am I really ready? Am I ready to not only tell my story, but tell other people's stories? Because the personal experience does not represent the collective experience.

And oftentimes with survivors, they think their experience is the only experience. So I say start small, make sure that you do know your own story, get educated about the broader issues, and also realize that advocacy can happen in incremental steps. It can be something very small. For example, if you want to get involved with a certain organization, go to their website. You know, start reading some of their articles.

I recommend, for example, with our Patient Advocacy Network (CPAN). Go watch our 2-minute video on PBMs or the value of community oncology. Those are all beginner steps to becoming an effective advocate because, again, to be an effective advocate, you need to understand the issues. You don't need to be a health care policy expert, but you do have to have a basic understanding so that you can be a credible voice in the advocacy community.

Advocacy can be such a fulfilling experience and I do understand that advocacy is not for everybody and that's okay. But what encourages me on a daily basis is to learn that advocates get so encouraged and inspired when they meet other advocates, and their confidence continues to grow every time they do a different type of advocacy and it really is something that patients enjoy doing because oftentimes patients want to give back. I've heard this for 20 years as I've been involved in the cancer advocacy world is, “I want to give back. What can I do?” and I just really encourage anyone who is interested in getting involved in advocacy to start by taking those little steps. Become an expert in your own disease, learn about the health care policy landscape, read, watch videos. And again, you can get a lot of joy and fulfillment out of being an advocate and if it's for you, I encourage you to do it.