Transcription:
Advocacy, Awareness and Support for People with Cancer

Dr. John Leonard (Host): Welcome to Weill Cornell Medicine Cancer Cast, conversations about new developments in medicine, cancer care and research. I’m your host, Dr. John Leonard. And today’s topic will be patient advocacy and support. I’m really happy today to have our guest Meghan Gutierrez who is the Chief Executive Officer of the Lymphoma Research Foundation or LRF; that nation’s largest nonprofit organization devoted to funding lymphoma research and education. The LRF’s goal is to advance both the study of new cancer therapies and to improve patient care. An expert in government relations and healthcare policy, Meghan represents the foundation before several audiences including the US Congress, the Department of Defense, the Food and Drug Administration and the National Institutes of Health. So, it’s great to have you here Meg, we’ve known each other a while. I serve on the board of LRF and really, it’s been great for me to see how much LRF does for patients in many different ways. So, thank you for joining us.

Meghan Gutierrez (Guest): Thank you for inviting us. Very glad to be here.

Dr. Leonard: Well one of the things that I think is interesting, this is a topic that we have not gotten in to depth on so far on cancer cast is really talking about how patients can advocate, or organizations can help patients advocate for their needs whether it’s education, research, patient care, etc. So, I’m interested in kind of how did you personally get into working in this field? What led you to work in this field to help patients in this fashion?

Meghan: I actually began my career on Capitol Hill working as an aid to a member of Congress. And it was really there that I both learned about healthcare policy and the implications healthcare policy has on patients, on physicians, on their family members, really on all of us. One of my observations when I worked on the Hill was that patient advocacy groups and patients themselves often didn’t have the type of representation say a corporation or larger entity might and I always wondered how we could better represent those audiences who were so in need of having their voice being heard.

Dr. Leonard: Well, that’s great and LRF has done a great deal and there are obviously many other organizations that support patients and advocate for patients. And I want to get broadly into the field of patient advocacy. The different way that patients can collaborate with organizations. But first just a minute or two, tell the audience who may not be familiar with LRF a little bit about the organization and what it does as an example of how patients can work with organizations to advance the field and their needs.

Meghan: The Lymphoma Research Foundation’s mission is to eradicate lymphoma and serve those touched by this disease. We do so in a number of ways. The Lymphoma Research Foundation has invested millions of dollars in biomedical research seeking a cure and new treatments for the various subtypes of lymphoma. In addition, we provide a number of programs and services for patients and their caregivers all across the United States. These range from live education programs, a mobile app designed specifically for people with lymphoma, teleconferences, patient literature and of course our website lymphoma.org which features all of these important patient and caregiver resources.

Dr. Leonard: So, a patient diagnosed with cancer obviously has a lot of needs. They are kind of searching for education. They want to obviously I think focus on getting better and what they need to treat their disease. How can patient advocacy organizations in a broad sense help an individual patient when they are diagnosed? If somebody in the audience is dealing with this, and they go to the website or get information from the organization specific to their disease, what would you advise them that such organizations can do for them?

Meghan: I think that type of personal advocacy for patients and their family members is the most critical and important. There are a number of patient advocacy organizations and medical institutes which provide evidence-based information to patients and their caregivers. It’s very important that when someone is diagnosed with a serious illness like cancer; that they are accessing accurate information so that they can become their own advocate. This to me has always been the most important type of patient advocacy. When a patient and their healthcare team have evidence-based and accurate information, only then can a patient really participate in shared decision making with their physician and other members of their healthcare team.

Dr. Leonard: So, what would you tell a patient who – there are lots of sources, we will talk briefly about information. There are lots of sources on the internet and out there. How do you guide patients from the standpoint of this is a reliable source like LRF or many other organizations that have a track record versus those that perhaps are less robust shall we say? What advice to you give to a patient?

Meghan: That’s a great question. So, I always think that the best first source of information is your healthcare team themselves. So, asking them which patient advocacy organizations they work with, that they support, perhaps asking your physician if they sit on a scientific advisory board for a patient advocacy organization is always a great place to start. Secondarily, going to the websites of the National Institutes of Health and National Cancer Institute are also great resources so that you can identify organizations that will have accurate and timely information related to your specific illness.

Dr. Leonard: And so, a lot of what organizations like LRF do is also raise money for research and any thoughts about guidance to patients. Most patients are not going to run in and fund a big study or fund a laboratory, but they may as part of their advocacy, or their interest in the disease want to support efforts, walks other things that people hear about. What guidance do you have there for people who want to direct some of their efforts in that direction?

Meghan: We tell people that when they are prepared to support the organization, both their time and their treasure in any capacity and in any sum can make a significant difference at the foundation and in the lives of other people. So, whether you are walking in a lymphoma walk and starting a team, becoming a member of team LRF and having your own type of event, perhaps asking people to donate to the organization in lieu of a wedding favor or a birthday gift. There are a number of creative ways people can donate to the organization that they felt have supported them and contributed to the body of research that perhaps created a new treatment that saved their lives. The other way someone can support an organization like LRF or another patient advocacy organization is by volunteering. Volunteering to serve as a peer mentor to a newly diagnosed patient or perhaps even becoming a member of a grassroots advocacy organization like the LRF advocacy program. Here, we have over 5000 members across the country who raise their voices through meetings, emails and telephone calls to members of Congress to make certain that the voice of the lymphoma community is heard. One of the wonderful things about volunteerism is whether you have time to volunteer once or many times, and no matter what the quantity of time is, you really can make a demonstrable difference in the lives of others.

Dr. Leonard: So, I think when you talk about components of a mission, education is pretty straightforward. People understand I go to this program, I read this book, I go to a website and I learn and that’s a clear benefit to me. I think people understand supportive research that’s moving the field forward developing new treatments, great. The third arm of things, the idea of patient advocacy, some of it being in Washington, some in other places; that I think to many people and I want to focus I think most of the rest of our time on educating people about that a little bit because I think for most people, that’s not either an obvious aspect of the way that they can get involved or they don’t quite see directly the benefits of that to their situation, but obviously, there are some key things that people should know about. So, how do you explain to a patient kind of why they should get involved in or at least pay attention to the advocacy part of being a patient and working with an organization?

Meghan: I think when someone’s life has been impacted by a cancer diagnosis, they become acutely aware of the impact the federal government and federal policies actually have on their healthcare. The federal government of course impacts virtually every aspect of the healthcare system in the United States and many people may not realize it until they have been impacted by a serious illness. But the federal government is actually one of the largest funders of cancer research in the world. And so, taken together, it’s quite easy to see in fact, how policy makers impact the lives of people who have been diagnosed with cancer. And the plain fact is, many of them are unaware or too be – or are in fact uneducated about cancer or the cancer experience. They may have been impacted personally by cancer, but they don’t necessarily understand each disease subtype. And that’s where really where we begin with the LRF advocacy program. We hear from many people who wonder how they could possibly impact federal cancer policy. It sounds so daunting doesn’t it, if you don’t have a background in public policy or government relations and what we explain to our advocates is that they don’t need to be experts in government relations. They needn’t be a member of Congress. What we need are people who are able to articulate their needs as cancer patients or survivors as someone who is caring for a loved one who has been impacted by cancer or lymphoma and really helping describe and to advocate for their specific needs. And that really lies at the heart of the mission of our advocacy program.

Dr. Leonard: And I know that LRF works with many, many other cancer advocacy organizations across different disease types and even outside of cancer. Can you give us a sense of kind of how that works and how different groups work together? Because some of our audience may be interested in lymphoma, but obviously people are interested in other cancers and other areas as well. How do these groups team up to deal with big issues that affect perhaps patients broadly across different diagnoses?

Meghan: There are a number of coalitions. Many of them are based in Washington. But their membership spans the entire country. Obviously, there are a number of issues that span not only cancer, but really any sort of health issue that impacts patients, physicians, and their caregivers. One coalition, our organization belongs to is the Cancer Leadership Council. This is a coalition of more than 30 organizations, all patient advocacy organizations, that focus on either funding cancer research or advocating on behalf of the patients whom they exist to serve. Monthly we meet, our representatives meet to discuss the important policy matters of the day that we believe may impact cancer patients or the people who treat them. Together, we decide on the priorities that our community is facing and then work to articulate these priorities to members of Congress, to people in the executive branch, like the Department of Health and Human Services and even other federal agencies like the National Institutes of Health or the US Food and Drug Administration.

Dr. Leonard: So, can you give us some examples of things where patient advocacy groups have made a big difference in something that kind of trickles down or maybe affects a subgroup of patients from the standpoint of, in a concrete way whether it’s about medical care or research or other policy areas?

Meghan: Absolutely. So, one perennial issue that this cancer leadership council, other coalitions and many individual advocacy groups work on each and every year is the federal appropriation for the National Institutes of Health and specifically the National Cancer Institute. For a number of years, the federal appropriation or the money that the US Congress dedicates to the National Institutes of Health didn’t maintain medical inflation. So, that is to say the budget actually decreased year after year after year. And we know in order to fund scientists like yourselves and to continue to make progress in the fight against cancer; we need to make sure that the nation’s laboratories are well-funded, and that funding cancer research specifically remains a priority. Here our groups work together to educate members of congress on the impact of the National Institutes of Health and highlight some of the great new innovations and advances that have been made in cancer care. And I’m very happy to report in the last few years, these efforts have been successful and it’s not because of necessarily the people sitting in that room, but it is a direct result of the testimony of patients. Everyday people out there who placed phone calls or wrote letters or even attended meetings with members of Congress to let them know the impact that investment was having on their daily lives.

Dr. Leonard: So, some people out there listening may say well that’s great, but and I think- but from the standpoint of an individual, what can an individual do. I get that if thousands of people do something, it may make a difference and I think the way politics has gotten regardless of your perspectives, it’s gotten more and more challenging to feel like you have a voice, but what would you tell an individual person particularly in this climate that we are in today that they could do and perhaps also if a patient calls up or a family member calls up LRF, what would you say, you could do A or B or C and those things would make a difference? What are some examples there?

Meghan: So, the first thing that I tell advocates and even some policy makers is that cancer is a nonpartisan issue. This is something that impacts us all and should be a shared priority for anyone living in this country. When an advocate or someone who is interested in becoming an advocate calls the Lymphoma Research Foundation, or other patient advocacy organizations, I think many are surprised to see how easy making your voice heard actually is. Organizations like ours facilitate letter writing campaigns, phone call campaigns to the extent that will not o9nlu educate you about a given policy issue, but will also provide you with simple steps to make it as easy as possible to identify who represents you in Congress, if that’s something you are unaware of and also to give you talking points and other information that you can then provide to your lawmakers, coupled with sharing your own personal experience. These sorts of interactions are very compelling, and one person absolutely can make a difference.

I want to share a story with you about an LRF advocate named Nick. I was on Capitol Hill not too weeks ago with Nick. He is a firefighter from Omaha, Nebraska and a diffuse large B-cell lymphoma survivor. Now Nick as you might imagine as a firefighter in the Midwest had never had the opportunity to visit Capitol Hill before. But he found himself in front of a Congressional briefing, talk about first time jitters. There, willing to talk about his experience as a lymphoma survivor. Now we had a number of physicians and myself there on the panel talking about a new innovative therapy chimeric antigen receptor or CAR- T cell therapy. Nick had been a recipient of this therapy and we were all there to explain what exactly this therapy was and how it impacted patients. Now while all the speakers were quite gifted, and quite compelling, you could have heard a needle drop when Nick approached the microphone to tell his personal story. He spoke about becoming diagnosed with lymphoma at a very young age at the peak of his physical health. He spoke about his expectant wife. He spoke about his family and friends who supported him through the first and second and third line of therapy. And when he finally accessed this CAR-T cell therapy, he achieved remission and he was there to share that personal story. Now while I mentioned all of the other speakers were incredibly gifted and compelling, I think what most of those members of Congress and staffers took away with them that day, was Nick’s personal story and the way that the innovation in this new treatment, the federal investment in research that resulted in this treatment benefitted him and patients like him. And Nick would be the first person to tell you he hadn’t undergone any special training. He certainly didn’t have a background in public policy. But what he did that day was incredibly compelling and I can guarantee you it will benefit patients for years and years to come.

Dr. Leonard: And do you find that most patients who get involved in patient advocacy really walk away with a similar sort of feeling like it’s another way to kind of empower them to make a difference?

Meghan: Without question. I would say one of the most visited items in the LRF office is a congressional resolution passed back in 2010. We had more than 7,000 lymphoma research foundation advocates working in conjunction with LLS and some other blood cancer advocacy groups petition the United States Congress to officially declare September as blood cancer awareness month. Many people were surprised even though it had informally been blood cancer awareness month for many years, that it didn’t have that official designation. And there are many advocates for whom that was the very first time they reached out to their member of Congress. And again, with no specialized experience, but armed with some talking points and an email template from the Lymphoma Research Foundation; these advocates found their voice. They reached out to the people who represented them in Congress. They wanted to be heard. And they wanted the special recognition for all of the patients and survivors whose lives have been touched by a blood cancer diagnosis. And for many of them, visiting the office and seeing that congressional resolution where it hangs now is a meaningful point of pride and for them I think a real demonstration that they were able to impact change.

Dr. Leonard: So, you touched on how advocacy groups work with each other, they work with Congress, they work with academic institutions; one of the areas that like in many aspects of medicine and research, the biotech and pharmaceutical interests are also obviously very important in contributing new treatments and research. Tell us a little bit about the interaction with pharmaceutical companies an di know that sometimes gets in the news a little bit, because of the idea of funding that comes from pharmaceutical companies to advocacy groups. How do you answer or look at that issue from your perspective of leading an organization and trying to make this progress?

Meghan: Many organizations, patient advocacy organizations included work with a wide variety of corporations to receive funding, to help underwrite programs and support the organization, including the pharmaceutical industry. The Lymphoma Research Foundation works with a number of pharmaceutical and biotechnology companies who are working to develop drugs to treat lymphoma patients. We have a very transparent policy in terms of the corporate funding that we receive. We only receive unrestricted educational funds to underwrite our programs. That means any corporation, no matter the type, doesn’t influence the content of any of our programs. We also specifically identify who sponsors all of our programs. And this isn’t unique. Many patient advocacy organizations follow the same sort of rules and levels of transparency.

Dr. Leonard: So, I want to also just kind of finish up with one aspect of how patient advocacy groups can help to support and promote two specific areas that you could perhaps comment on briefly. One is clinical trials and the idea of supporting clinical trials and patient participation in clinical trials and also perhaps unrecognized, underserved groups that I know LRF has done work with adolescent young adult groups and certainly other organizations also pick other areas that perhaps are underrecognized that need special attention and how you can kind of move those forward so that they get more support and funding.

Meghan: Absolutely. So, general education around the treatment options available to patients is really the hallmark of our patient services division at the Lymphoma Research Foundation. Our LRF help line which is available to patients and their caregivers Monday through Friday offers information on the different subtypes of lymphoma, on the treatment options available to them and the clinical trials that may be eligible to them. For many patients, it can be daunting to understand exactly what a clinical trial is and whether or not it might be an important treatment option for them to consider. When they call the LRF help line, our specialists are able to conduct a search for them based upon the criteria they give us and provide them with a list of clinical trials that they may be eligible for. We then provide them with that information so that they can return to their physician or healthcare team and discuss whether or not a clinical trial might be right for them to consider.

Dr. Leonard: Well I want to thank you for joining us today. This has been a really great discussion. Are there any other key messages you want to give to our audience as far as how to get more involved and whether they are dealing with lymphoma or otherwise?

Meghan: Absolutely. All of your listeners can absolutely find additional information on any of the live programs or mobile app or a clinical trials information service that we have discussed today by phoning the LRF help line at 1-800-500-9976 or via email at helpline@lymphoma.org. I also wanted to mention that we have created a dedicated webpage on our website that will review all of the topics we have discussed today on cancer cast. If your listeners visit www.lymphoma.org/cancercast they can find additional details and all of the programs we have discussed today.

Dr. Leonard: Well, that’s great and I think I want to thank you for all that you and LRF have done for lymphoma patients and obviously also incurred the audience that there are many other organizations if you are dealing with other cancers and other challenges that also provide very important and valuable information. They are not that hard to find. But you have to look for them and you have to know that they are out there and have things to offer and I would certainly encourage people to ask their doctors and their treatment team to put them in touch with the appropriate organizations for their specific situation. So, I’d like to also invite our listeners to download, subscribe, rate and review Cancer Cast on Apple podcasts, Google Play Music or online at www.weillcornell.org. We also encourage you to write to us at cancercast@med.cornell.edu with questions, comments and other topics you’d like to see us cover in more depth in the future. Meg, thanks for joining us today. That’s it for Cancer Cast, Conversations About New Developments in Medicine, Cancer Care and Research. I’m Dr. John Leonard. Thanks for tuning in.