Continuing the Momentum with Patient Advocacy - Elisabeth Heath

October 9, 2019

Elisabeth Heath from the Karmanos Cancer Institute joins Alicia Morgans in a passionate conversation on the importance of patient advocacy, education, and the impact advocacy has on a cancer patients' journey. What resources are out there? How do we really help patients do the best that they can? How do you find advocacy organizations in your community? and, How do you get involved? Drs. Heath and Morgans provide answers to these questions highlighting that advocacy bridges the gap between research, community efforts, statewide efforts, and the personal journey of a cancer diagnosis and pushed the barriers towards better patient care and ultimately cancer diagnosis outcomes. 


Elisabeth Heath M.D., FACP, Associate Center Director for Translational Sciences, Medical Director of the Infusion Center, Lead of the Prostate Cancer Research Team and Genitourinary Oncology Multidisciplinary Team, Karmanos Cancer Institute. She has been an active clinical and scientific member of Karmanos since 2003 and is Professor of Oncology at Wayne State University School of Medicine. Dr. Heath has a distinguished career as a prostate cancer researcher, serving as the Patricia C. and E. Jan Hartmann Endowed Chair for Prostate Cancer Research. She is also involved with the Developmental Therapeutics-Molecular Therapeutics Committee of ASCO and is the principal investigator for a Department of Defense grant in the nationally recognized Prostate Clinical Trials Cancer Consortium

Alicia Morgans, MD, MPH, Associate Professor of Medicine in the Division of Hematology/Oncology at the Northwestern University Feinberg School of Medicine in Chicago, Illinois.


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Alicia Morgans: Hi, I am thrilled to have here with me today, Dr. Elizabeth Heath, who is a Professor of Medicine at the Karmanos Cancer Institute where you lead the, the GU group, the prostate cancer group, and you've had a key role in our field, in prostate cancer, in raising awareness and partnering with the community to advocate for men and their loved ones so that they have what they need to tackle this disease, and to have the education that they need to understand what they're going through. And as I think about advocacy, and we've talked about this before, advocacy can be for oneself and making sure that one's opinions are heard and preferences are heard at a physician's visit, but advocacy can be bigger than that. We can advocate not just for ourselves but for others and for our community of prostate cancer patients. And I'm just wondering, can you tell me a little bit more about your thoughts on advocating for others, how important that is, how we do it, and how do we differentiate that from things like just being helpful in our community?

Elisabeth Heath: Absolutely. Thanks so much for this opportunity. You know how passionate we are, yourself included in this because without us advocating, not just for ourselves but for others, we'll still be in the dark ages. We have to share not just new information and education, but resources. What's out there? How do we really help patients do the best that they can? So, there is a difference though between service and advocacy.

Service is when we do good for others and many of us volunteer, whether it's at the soup kitchen, homeless shelter, or even to build a home for those that are less fortunate, those are typically one-day events that you help and you volunteer your time, so worthwhile. But as an advocate, it's a little bit more than that. There's a longterm view of that. There's the, "I'm going to impact this by changing social policy." Or, "I'm going to go out as a community and go with the greater group and really come out there with a very focused message." So, we do have a little bit of a difference in that. Both are needed. Both are wonderful, but for patients, there's so many other things we can do for helping you advocate for others.

Alicia Morgans: Great. So tell me, what can people do if they want to get involved in an advocacy type of a way to help the prostate cancer community?

Elisabeth Heath: Absolutely. So, you could start locally. Locally would mean some hospital-based organizations. There are wonderful community organizations that are out there. Sometimes, you just have to let your fingers do the walking on the web. I bet if you just type in prostate cancer advocacy or support groups, it'll be there. It'll pop up to where you are located. That's such an important first step. It is an engagement of sorts. It is a recognition that you have to in some sense share a little bit of your story. Maybe you don't want to share your whole story, but that's okay. But then there are other efforts. There are statewide efforts, and those are amazing because especially from the patient, or family standpoint, there's that beats that personal experience. So, whether the cause is to get a new bill in place, or just to get awareness about a certain resource in your community, sometimes doing a statewide effort is really terrific.

And then don't forget nationally, we want all hands on deck. There's so many organizations, so many that you and I are involved in that there are really easy steps. You go on their website, it says, "If I want to do this, click here." And, if you're not so savvy on the web, go find somebody who is. Usually, it's somebody in the younger generation, but it's all just so worthwhile.

Alicia Morgans: So, thinking about advocacy, and you mentioned a bill, I think for many of us, as we think about the legislative process, it's both overwhelming in a daunting kind of, "this is so much bigger than me" kind of a way, but also seems like it takes forever, and nothing comes out of it. But that's actually not true. You and I have both been involved in organizations that end up making a difference on a legislative level. And I think in particular, you have been involved in some of that action in Michigan. And I'd love to hear an example of that advocacy in process, and how people in Michigan and other places can think about the impact they can make in that process.

Elisabeth Heath: Well, definitely, and I'm sad to say that Michigan is one out of seven states that still doesn't have the Oral Chemotherapy Parity bill. So, that's a cancer patient who needs a pill therapy to help with their treatment, that isn't necessarily guaranteed to be covered by the insurance. Now, intravenous chemotherapy typically is covered. That's a disparity, and that leads to all sorts of things like financial toxicities, bankruptcies and so on. So, what have we done about it? Well, the advocates have come out. The community has come out. Doctors have come out, other health care providers. The importance is so great, that we all must come together and unite.

Now, most organizations will hold some sort of a day, be it Lobby Day with the American Cancer Society Cancer Action Network or other sort of similar organizations. You and a few people or a lot of people can come together and make a difference. The last time we had Lobby Day in Michigan, we were quite vocal. We were so vocal that we were noticed, and that's what we need. A voice to speak out and nothing is more powerful than the patient voice.

Alicia Morgans: Absolutely.

Elisabeth Heath: Nothing.

Alicia Morgans: Nothing is, and it's the story. And you don't have to know everything about prostate cancer to tell your personal story, and to communicate the impact that your experience has had on you and your family. And in prostate cancer, just to really emphasize to anyone listening that oral parity, which means equivalence essentially in insurance coverage for things that you take through vein, or things that you take by mouth is crucial in prostate cancer, when so many of our therapies are pills. And that's a goal of our community has been to get pills to patients to make it easier for them, and never would we think that that would actually make it harder for them potentially to get their medicines.

Elisabeth Heath: That's right. And having that as an option shouldn't be something that is decided upon based on their insurance plan. It should be what that shared decision-making is between the patient and the provider. And that in itself is so hard, but also how did they get there? Through so many clinical trials. Well, who's involved in clinical trials? Patients. That is off of the blood, sweat and tears and commitment of every patient that goes on a clinical trial. And you and I know how much work that is for everyone, and that's true commitment, and it's a gift from other patients who have been through it. We need to empower that kind of gift, and make sure everyone has that opportunity.

Alicia Morgans: I completely agree and I continue to wish you and the folks in Michigan luck. I know you're going to be having upcoming days. When is the next day that you'll be talking about this? Do you have something scheduled yet?

Elisabeth Heath: Not yet, but we do partner up with the American Cancer Society Cancer Action Network, so that's sort of their lobby arm, and if you go on their website they have all sorts of activities that's available. So, we normally pair up with them to take a trip to Lansing.

Alicia Morgans: Perfect. Now on a national level, you and I actually both are involved with ZERO—The End of Prostate Cancer, another group that advocates for prostate cancer patients in a different way, though. They really advocate for the maintenance of funding through the Department of Defense, which funds actually a lot of research that happens for prostate cancer patients getting active treatment, for survivors, for their quality of life and for therapeutic advancements. So how can people get involved with ZERO, or other national organizations that lobby for prostate cancer?

Elisabeth Heath: I think that awareness that the Prostate Cancer Research Program, which is a part of the Department of Defense, has really enabled groundbreaking discoveries. You and I have had that opportunity to work with them to collaborate with others and we're so grateful that patients have this opportunity for new treatment. With that research funding committed yearly, and that's a bunch of voices, not just doctors and researchers, but we need patients and community members to come out and say, "We will not tolerate a decrease in funding." Because that means less research. That means less options for our patients.

So, they can either go and join an organization like ZERO, actually come to Washington and support this effort, or write letters, or literally go find their local person, their representative or Senator, and they always have something in the community. Coffee hour, meet and greets. Get in there, ask these questions. What about funding? If we don't speak up, we will be overlooked, and we can't afford even one year of decreased funding. Not with all the excitement that's going through. You and I know that. We are just astounded at the scientific discoveries. We're on that cusp where something even more wonderful will happen. We can't stop the momentum.

Alicia Morgans: I agree. And it's not just the excitement, it's the need. The need is still there. So, whether you get involved on a local level, whether you get involved on a national level, whether it's an in-person experience or making sure that you send an email to your representatives with one of these organizations, it is critical that we as physicians, as community members, as people with prostate cancer and the people who love them, it is critical that we get involved and that we advocate for others.

Elisabeth Heath: Absolutely.

Alicia Morgans: So, thank you so much for sharing-

Elisabeth Heath: You're welcome.

Alicia Morgans: How we can do that.

Elisabeth Heath: Thank you.