CPAT Members Share Their 2016 Symposium & Hill Day Experiences

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Elisse Barnes HeadshotThe CPAT Symposium Taught Us How to Be Effective Advocates

By Elisse Wright Barnes, JD, PhD

I consider myself a lifelong learner, and the last two years have been quite a learning experience. As a caregiver to my husband who was diagnosed with stage IV chronic lymphocytic leukemia (CLL) two years ago, I have learned a lot about being a patient care advocate. I’ve learned that even medical professionals with cancer (he’s been an RN for 22 years) need someone to ensure they get the quality of care they deserve. I’ve learned that for your loved one to survive cancer, you, as a caregiver, must proactively seek solutions that may not come from your first doctor or your second. I’ve learned that you must be unrelenting in seeking the best care, even if it means firing your doctors, finding new ones, and forcing your insurance company to pay for things it doesn’t want to.

At the 2016 NCCS CPAT Symposium, I learned even more. I learned about the experiences and advocacy of cancer survivors and caregivers from California to Michigan to the Carolinas and Massachusetts. I learned that there are many types of cancer advocacy: 1) supporting those living with cancer; 2) raising public awareness; 3) fundraising; 4) supporting cancer research and clinical trials; 5) improving the quality of patient care; and 6) influencing legislative and regulatory policies that affect cancer care and research like H.R. 2846, the Planning Actively for Cancer Treatment (PACT) Act.

Elisse Barnes shares her experience during a workshop on improving doctor/patient communication.

Elisse Barnes shares her experience during a workshop on improving doctor/patient communication.

In three short days, the NCCS CPAT Symposium taught us how to be effective advocates in meetings with legislators from our home states. It enabled us to communicate why passage of the PACT Act is so important. It empowered us to explain that unlike my husband, most cancer patients will not have a JD, PhD by their side to map out a plan for their care; that they need and deserve someone on their medical team to do it. The PACT Act ensures that that road map gets drawn for all patients, starting with those on Medicare, and that another healthcare disparity will begin to close for cancer patients throughout the United States. It was a pleasure and a privilege to be a part of the 2016 NCCS CPAT Symposium. I look forward to continuing to work with NCCS to become a better advocate and caregiver.

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Sandra Finestone HeadshotMy CPAT Symposium and Hill Day Experience

By Sandra Finestone, CPAT Member

While attending this year’s NCCS CPAT Symposium, I learned that it does not matter what cancer you are diagnosed with, it does not matter what age you are when you are diagnosed, and it does not matter the color of your skin or the country in which you were born. A cancer diagnosis affects you forever. It changes who you are and how you look at life. It can have the ability to diminish you, but it can also have the ability to empower you.

The cancer survivors I met at the symposium were empowered. They were empowered to not only improve their lives, but to also make sure that the lives of those they love and the lives of those they have never met could be better. They are doing this by informing legislators about what is needed to not only fund cancer research, but to take care of those who have already been diagnosed and are living with the disease.

I found that people are good and kind and caring. I found that almost everyone has been touched by cancer in some way. I found that people are willing not only to listen, but to hear what you have to say if you say it in a direct and honest way.

Sandra Finestone asks a question during a CPAT session.

Sandra Finestone asks a question during a CPAT session.

At this meeting, I was able to connect with old friends and make new and lasting friendships. I found that everyone has a voice. Some voices are soft and small and some voices are big and loud. We need all voices to make our stories heard.

One of the highlights of my experience was meeting a group of caring, young physicians who want to learn about the patient journey. Hearing about them and what brought them to the meeting gave me hope for the future. A future where physicians listen to both the soft and loud voices, but most importantly, try to understand what they are saying.

Thank you to NCCS for allowing me to spend some time with some incredible people who care about patients.

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Betsy Glosik HeadshotSocial Studies and Civics 101 (and Why the Blisters Were Worth It)

By Betsy Glosik, Cancer Survivor and Patient Advocate

Just a few weeks ago (June 26-28, 2016 to be exact), I found myself in Washington D.C., actually taking part in the democratic process as a participant in the Cancer Policy & Advocacy Team (CPAT) symposium sponsored by the National Coalition for Cancer Survivorship (NCCS). More than 50 patient advocates from all across the country attended and brought their stories of ovarian, lung, liver, breast, brain, melanoma, and childhood cancers (oh, that’s just naming a few) AND their passion for making a difference in how we improve care and the quality of life for cancer survivors.  As patients ourselves, we are compelled by a sense of urgency to make a difference.

Programming for this event centered on the critical role of patient advocacy (social studies) and literally how to get it done with first steps (that’s where the blisters come in) when speaking to the people we pay in Washington and ask for their support of the Planning Actively for Cancer Treatment (PACT) Act (civics). This bipartisan bill is currently in the House of Representatives and will allow for Medicare to establish a service for care treatment plans. As advocates attending the symposium, our goal was to meet with our senators and representatives in Congress, to explain why this is vital to improve patient care, and to ask for their support of this legislation.

Sessions centered on current hot-button issues that intertwine with planning—such as how treatment is paid for, how patient-centered care is evolving, and the star of the show: the critical need for cancer treatment and care plans that begin at the time of diagnosis and flow through treatment and beyond. To have a written document that addresses your type of cancer, how it is/was treated, potential side effects of treatment, and what to expect in survivorship, and have it all together in one report that can be shared with other medical professionals is, quite simply, necessary. We learned as advocates (and understand as patients) that a care plan improves outcomes and can save money by not duplicating testing and can help avoid complications. It eases transition into life after treatment and addresses the long-term view of a patient’s care.

Betsy and Jill Beavers-Kirby pose with a staffer from Sen. Rob Portman's office.

Betsy and Jill Beavers-Kirby pose with a staffer from Sen. Rob Portman’s office.

After two days of meetings and discussions, we were sent packing with information and pitch skills to our elected officials’ offices. I and another advocate from Ohio, Jill Beavers-Kirby, went to speak with a staffer in Senator Sherrod Brown’s office. Christin Engelhardt from NCCS gave us another voice with valuable insight into the political process in Senator Rob Portman’s office. I then hoofed it across the Capitol lawn to Congressman Dave Joyce’s office to give our message on the House side and ask for his support.

While we do not have confirmation of support from any of these offices yet, we did generate some really good interest and questions. And yes, all that walking did generate some really big blisters from what I once thought were comfy, but smart looking dress shoes. Next time, I may just wear sneakers and carry a briefcase with the cute shoes. In the meantime, my healing heels are just fine with the thought of making a difference.

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Sarah Noonan HeadshotAll You Need is Passion, a Little Guidance, and a Willingness to Share Your Experience

By Sarah Noonan, CPAT Member

You don’t have to be a policy wonk to make a difference with your legislators!  Really, all you need is passion, a little guidance and a willingness to share your experience in order to help others.

I was first introduced to the National Coalition for Cancer Survivorship (NCCS) and the Cancer Policy & Advocacy Team (CPAT) in August of last year while attending the ESCAPE conference for cancer advocates in Tucson, AZ. Shelley Fuld Nasso, CEO of NCCS, spoke with us passionately about the organization, their resources for cancer survivors and their families, as well as, their focus on legislative advocacy and the significant impact we, as cancer survivors, could have on shaping future policy for cancer care. I was intrigued, but in all honesty, I wasn’t quite to the point of being enthusiastic about all of this policy stuff. Politics had always intimidated me and I thought my skills could be better used in other areas of advocacy.

So what brought me to the CPAT symposium in June? Well, first and foremost, it was an opportunity to reunite with some of those amazing advocates I had met in Tucson the previous year. I was also very interested in the sessions about how to effectively convey our stories and how to improve patient-doctor communication. Many of the programs in which I currently participate and develop address these very issues. But little did I know (and even less did I expect) that the experience of advocating for important legislation to improve cancer care would be such a positive and empowering experience for me.

Our primary aim during visits with our Representatives was to ask for their sponsorship of H.R. 2846, The Planning Actively for Cancer Treatment (PACT) Act. This bi-partisan legislation was originally introduced by Representative Lois Capps (D-CA), a nurse, and Representative Charles Boustany (R-CA), who is a physician.

The main goal of this legislation is to encourage the development of a personalized cancer care plan for Medicare beneficiaries diagnosed with cancer. More specifically, it will provide cancer patients with a roadmap for their treatment, it will facilitate shared and informed decision making, and it will empower patients with knowledge to actively participate in their treatment and with tools to more effectively cope with long-term survivorship.

Sarah and friend Patsy listen during a workshop at the CPAT Symposium.

Sarah and friend Patsy listen during a workshop at the CPAT Symposium.

I was grateful to be joined by Patsy, an ovarian cancer survivor and one of my very best friends, along with Jennifer, who I had met here for the first time, for our scheduled visits. We were all a little nervous, but what gave us confidence was the support of NCCS and the reminder that we are their constituents, and it is their job to listen to us! We were lucky to have a wide scope of the cancer experience represented among us: me, a long-term survivor of early stage ovarian cancer and also caregiver for my Dad who was diagnosed with colon cancer last year; Patsy, a long-term, late-stage survivor, and Jennifer, a caregiver for her mom who passed away from lung cancer five years ago. It was quite amazing how we were able to weave our own experiences into the story of the PACT Act and how this legislation could improve quality of care, quality of life, patient empowerment, continuity of care, and access to needed services. The legislative assistants were very attentive, very responsive to our stories, and listened with interest. It is our hope that they consider this important legislation and encourage our Representatives to sign on as co-sponsors!

Overall, this experience was positive, inspiring and empowering. I met many new friends and I have a new passion and interest for legislative advocacy that may improve cancer care for ALL survivors.

As I have been reflecting on this experience and my own journey with cancer, I remember this: there are so many things that happen to us that are beyond our control. When I was first diagnosed with cancer, I felt the Burden of Survivorship… the physical and emotional pain, grief and loss inflicted upon me and my family. As I began to recover and connect with other young survivors who had experienced similar losses and were still living life, I began to view my survivorship as a Privilege. And, over the last 13 years since I was diagnosed, I have lost dozens of friends to this horrible disease. I am so grateful to be healthy and cancer-free, a gift that so many of my friends never received. This experience has now helped me see my survivorship as a Responsibility… to those I’ve lost, to those that still suffer, and to those who will be diagnosed in the future. I am grateful for many programs and organizations, including NCCS and CPAT, for providing me with meaningful opportunities to carry out this responsibility.

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Gabriela Perez-Espinosa HeadshotMy Hill Visit Was a Very Positive and Empowering Experience

By Gabriela Perez-Espinosa, CPAT Member

I would first like to start off by saying thank you to NCCS for such an amazing opportunity to attend the symposium and connect with such inspiring survivors. Being that this was my first symposium, I was very nervous about what to expect. The sessions were very informative and I felt the overall flow of the symposium was great. I enjoyed the exercise where we learned to write our story with a purpose. I have shared my story verbally many, many times, but to learn to write it down with a flow and purpose was pretty neat. I also appreciated gaining insight into how other patients have had to deal with issues concerning their insurance covering certain medications and procedures. I have had Kaiser Permanente during both diagnoses and everything seems to be in house. I have never had to make additional phone calls to try and get things covered, so to learn that others deal with that, in addition to the already overwhelming process of the diagnosis, was a bit shocking.

Another segment that I found very helpful was patient and doctor communication. I have actually recently considered switching doctors as my most recent interactions have been unpleasant. Initially I just wanted to call the Member Services department and request to be reassigned without really saying anything to my doctors. I was trying to avoid any type of confrontation or awkwardness. After the session, though, I realized how important it is for me to communicate my concerns with them. I would not want them to treat someone else the way I was treated, so I will speak out. Who knows, we can probably work together and repair the relationship we currently have.

Gabriela listens during a meeting in Sen. Diane Feinstein's office.

Gabriela listens during a meeting in Sen. Diane Feinstein’s office.

The Hill visit was another amazing opportunity. I started the day feeling both nervous and excited. I really appreciated having other advocates from my home state with me when we had the Senate meetings and another advocate join me for the House meeting. Initially, I was afraid and thought it would be an intimidating experience, but it turned out to be a very positive and empowering experience. I am very grateful to have been a part of such a great symposium and I look forward to future opportunities to advocate with NCCS.

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