It was my privilege to attend the Susan G. Komen Advocacy Summit in Washington, DC, May 1-3, 2019. After spending 3 incredible days at this summit, I find it interesting that advocacy is listed in most dictionaries as a noun. In my experience, I feel this word is better described as an action verb!
Through my attendance, I realize the importance of advocacy as a means of educating our lawmakers on the necessity of legislation to help those fighting cancer. In this article I will share my experience in the hope of inspiring others to get involved in advocacy programs.
“Show up. Stand up. Speak up. For those that can’t.” These were the powerful, opening words from Susan G. Komen’s Senior Vice President, Mission, Victoria Wolodzko, and the spirit of the summit I want to share with you.
We started with a presummit training. We learned that Komen defines advocacy as the application of pressure and influence on the people and institutions that have the power to give you what you want. The “Komen Advocacy 101” education session provided attendees with the information about the group and how we can help Komen accomplish its goals.
A session entitled “Congress 101” provided a refresher on the branches of the Federal Government, how appropriation laws are made, and the structure of the 116th Congress.
Our next session, “Let’s Get Personal—Sharing Your Story” provided help to those of us telling our personal stories to get our point across more effectively and efficiently. We were also advised to always leave them with a memorable, concise phrase, which would help them to not only relate to our story, but to remember our story. As a 19-year cancer survivor, my personal ending phrase is: “I am the first person in my family to have breast cancer. If I had waited until age 50 to have my first screening mammogram, I would likely have had a much different story to tell. Or, I might not be here to tell my story at all.”
With the fundamentals out of the way, the Advocacy Summit began.
The “Welcome and Komen Advocacy Summit Overview” session provided an overview of what was to come, our objectives, and a look back at key successes from the past year.
The “Current Political Landscape” discussion provided an overview and current status of Komen’s priority issues.
Next, an “Issue Brief” was presented to help us learn more about the current matters at hand.
There are numerous advocacy issues. Komen pared its list of identified needs for breast cancer patients down to 4 “Hill Day Asks” for us to convey to our congressional leaders:
- Preserve women’s access to breast cancer screening by funding the National Breast and Cervical Cancer Early Detection Program at $275 million in the FY20 budget.
My take on this issue: I have seen many women in my line of work who have benefited from this program. This program offers breast (and cervical) cancer screening, diagnosis, and a referral to doctors who can provide treatment for their cancer. This also comes with a 45-day presumptive eligibility for Medicaid-covered treatment, so that these patients may receive treatment right away. It is a true blessing for these patients to quickly obtain the care they need.
- Make biomedical research an unwavering national priority by funding the National Institutes of Health at $41.5 billion in the FY20 budget.
My take on this issue: Komen and Sarah Cannon are both entities that fund research to help find treatments and cures for cancer. They cannot do this alone! Until we find the cures, we need treatments that can help our patients continue their fight. I met this afternoon with a 30-year-old patient who is also a single mom. She just completed chemotherapy, and before she could have surgery for her breast cancer, she had new tumors form that did not respond to her current chemotherapy. We need to offer her more; she needs a better chance for a cure. Her children need her!
- Ensure breast cancer patients can access the treatments they need to save their lives by becoming a co-sponsor of the Cancer Drug Parity Act, H.R.1730/S.741.
My take on this issue: Many new treatments for cancer are now in pill form. Some of these are chemotherapy, others are targeted therapies, immunotherapies, etc. Insurance companies have not kept up with this trend in treatments, and they do not cover these medications under the patient’s medical coverage, so that the patient would only pay a medical copay. Instead, these are covered under the patient’s prescription coverage, so the patient is charged much higher out-of-pocket costs than under the medical benefits plan. Unfortunately, these medications come at an out-of-pocket cost for these patients at upward of thousands of dollars per month. Oral parity is needed so patients may be able to afford these medications. A patient should not have to choose between fighting their cancer, leaving their family broke, or going into debt to obtain their prescribed medications.
- Co-sponsor the Access to Breast Cancer Diagnosis Act of 2019, H.R.2428, which increases access to medically necessary diagnostic breast imaging by reducing out-of-pocket costs for patients.
My take on this issue: Thankfully, breast cancer screening mammograms are covered under preventive care at no cost for most patients. If a patient is found to have an abnormal mammogram, then diagnostic imaging is needed to determine if the patient needs to have a biopsy. The cost for diagnostic imaging ranges from hundreds to more than $1000 out of pocket for insured patients. Many patients cannot afford this additional imaging, so they will wait 6 months—or more, if imaging is done at all! This can result in what could have been a stage 0 or stage 1 cancer potentially progressing to a much later stage cancer. Breast cancer survivors, such as myself, are also required to have these diagnostic tests several times per year, and those bills just keep piling up—because they have these high out-of-pocket charges, even for survivors!
Our next event was the Dinner Keynote. We were inspired by the talks from 2 leaders in the breast cancer community: Paula Schneider, President and CEO of Susan G. Komen, and Sandra Lee, breast cancer survivor, chef, and television personality.
We ended our first day by planning for our “Advocating on Capitol Hill” event. We met with our fellow state of Tennessee Advocacy Summit attendees to make our final preparations for our Komen Hill Day meetings. We were provided with information on the Komen Advocacy phone app, meeting groups, and schedules. We then had an opportunity to role-play for our upcoming meetings on “The Hill.”
Thursday morning arrived, and we had a Hill Day Kick Off prior to heading out to our meetings for the day. We were again encouraged by Victoria Wolodzko from Komen, and then received words of advice from Congressman Colin Allred, JD, regarding the importance of advocating on Capitol Hill.
My Meeting Schedule included visiting the offices of Senator Lamar Alexander, Senator Marsha Blackburn, Congressman Steve Cohen, Congressman John Rose, and Congressman Jim Cooper. It is both a humbling and empowering moment when you walk down the street to our nation’s Capitol and know that you are going there to speak for others: the ones who can’t speak for themselves.
We had a successful Hill Day by sharing our personal stories as well as the stories of our patients and families with our Representatives and Senators. We asked them to please consider helping not just breast cancer patients, but all cancer patients by supporting us in these endeavors. They now know the reasons—and faces—behind our “asks.”
Komen ended the day’s work by hosting a “Success on the Hill” reception for the Hill staff and Komen Advocacy Summit participants both to celebrate the successes of the day and to recognize the Komen congressional champions.
To continue the fight, Komen hosted a session called “Building State Advocacy Success” to take an in-depth look at state-level advocacy work and the importance of building key relationships with our elected officials.
The learning continued with “State Medicaid Programs: Next Steps,” which gave us an insider’s perspective to the current state of Medicaid proposals and waivers.
Our inspiring and heart-touching closing keynote was provided by Victoria Geib, a metastatic breast cancer patient and advocate. She and so many more like her are the reason why we do this. It is why we keep fighting, and why we keep searching for the cure.
I have always been one to take up for the underdog, to look out for others, and to befriend those in need. I have spoken up for those who could not and for those afraid to speak for themselves. The strong and the able need to continue to do this in a world where all voices must be heard. Those of us that can, should. Those of us who are able, must.
How to Get Involved
Oncology nurse and patient navigators have a unique opportunity to join forces to speak up for all patients. Interested in joining forces? Here are just a few of the many cancer advocacy groups. Find one that you are passionate about, one that speaks to you. It is easy to be an advocate when you believe in what you are advocating for!
- Addario Lung Cancer Foundation: http://lungcancerfoundation.org
- American Cancer Society: www.cancer.org
- American Lung Association: www.lung.org
- Cancer Support Community: www.cancersupportcommunity.org
- Leukemia & Lymphoma Society: www.lls.org
- Lung Cancer Alliance: www.lungcanceralliance.org/get-information
- Lung Cancer Foundation of America: www.lcfamerica.org
- LUNGevity Foundation: http://lungevity.org
- Marti Nelson Cancer Foundation: www.canceractionnow.org
- National Coalition for Cancer Survivorship: www.canceradvocacy.org/about-us/our-mission
- National Patient Advocate Foundation: www.npaf.org
- Prevent Cancer Foundation: http://preventcancer.org
- Stand Up To Cancer: www.standup2cancer.org
- Susan G. Komen for the Cure: http://ww5.komen.org