Reflections from the Susan G. Komen Advocate, Brenda Farmer

Brenda Farmer is a 20-year breast cancer survivor, formerly a breast cancer nurse navigator (now an employee of Parallon) and an ardent supporter of Komen Central Tennessee. In May 2019, she had the privilege of attending the Susan G. Komen Advocacy Summit in Washington D.C. Below is her take on her experience.

Brenda’s take: 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.

There were numerous advocacy issues that year on the Hill. 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!

 

As a 20-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.” Our voices matter, I encourage everyone to participate in advocating for the things they believe in, especially as it relates to breast cancer.  Your voice makes a difference!

Komen Advocates act as the voice of over 3 million breast cancer survivors in the U.S. For example, our Policy Advocates ensure that the fight against breast cancer remains a priority among our state and national policymakers. And our Research Advocates make certain that the perspectives of survivors and co-survivors are considered in the decisions that impact our progress toward ending breast cancer forever.

If this seems like a good role for you, get more details on how to help legislate change or how to become an Advocate in Science. Read full article here.