1. Shellnutt, Cathleen DNP, APRN, AGCNS-BC, CGRN

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In March, I had the honor of obtaining a scholarship to attend the Digestive Disease National Coalition Spring Public Policy Forum in Washington D.C. with 11 of my other SGNA colleagues. Some had attended before, and for others (like myself), it was their first time. We represented many of the East Coast states as well as my home state of Texas.

Cathleen Shellnutt, ... - Click to enlarge in new windowCathleen Shellnutt, DNP, APRN, AGCNS-BC, CGRN

Digestive Disease National Coalition (DDNC) is an advocacy organization that seeks to raise awareness of digestive diseases in Congress and the media. The Coalition has many member organizations that include professional societies like SGNA as well as patient advocacy organizations. The mission of DDNC includes improving access to quality health care for patients with digestive diseases (DDNC, 2017).


Our day began at 1pm on a Sunday. We learned about the National Institutes of Health (NIH), the Institutes' research related to digestive diseases, and the importance of federal funding. Our speakers included representatives from the National Institute of Diabetes and Digestive Diseases and the Food and Drug Administration. Next, we heard representatives from patient assistance organizations describe how pieces of legislation have affected their ability to help patients with their insurance premiums or drug costs. I was excited to learn about new resources for my patients (Table 1). Finally, industry representatives detailed their goals to help put the patient and provider's decisions first when deciding appropriate therapy.

Table 1 - Click to enlarge in new windowTABLE 1. Examples of Digestive Disease Assistance Programs for Patients

Later in the afternoon, we received a legislative overview from DDNC staff. The DDNC focuses on improving public policy in the following areas that impact treatment of digestive diseases: (1) research in digestive diseases; (2) patient access to affordable, quality healthcare; and (3) prevention and awareness of digestive diseases (DDNC, 2019). We heard a brief overview of legislation that could affect these three areas and were given talking points. The key takeaway on how to speak to our legislators was to tell them our story or a patient's story.


The following day, we met for breakfast and joined our team members to tackle the legislative visits. My team was to meet with Texas and Mississippi Senators and Representatives. We had six assigned members, five from Texas (Districts 10, 03, and 30) and one from Mississippi (District 01). The Mississippi and Texas (District 30) team members did not make it to Washington, so we were down to three. Our schedule included seven visits in the legislator's offices with their assistants.


Our first meeting of the morning was with Patrick, a staff member of Senator John Cornyn (R-TX). Patrick was engaged in our concerns about the patient-physician relationship and the barriers to care created by step therapy protocols. We discussed the Restoring the Patient's Voice Act that would establish guidelines for appealing step therapy protocols. We made Patrick aware of the Patient's Access to Treatments Act as well. This act would establish cost-sharing limits for health plans covering prescription drugs under a formulary or tiered structure. We learned about Patrick's background, his Texan roots, and shared patient and personal stories.


Later we met with Kaeley, who represented Senator Cindy Hyde-Smith (R-MS). Our Mississippi delegate was not with us, but Senator Hyde-Smith's office was gracious and met with us to hear our concerns. Senator Hyde-Smith is a newly elected Senator for Mississippi and has been in office since April 2018. She is the first woman to represent Mississippi in Congress. We discussed NIH funding, which everyone seemed to support. We also discussed the Removing Barriers to Colorectal Cancer Screening Act that would eliminate Medicare beneficiaries' cost sharing for initial and follow-up colorectal cancer screening tests. We let her know that March is Colon Cancer Awareness month (most of the legislative assistants were unaware of this).


After lunch, we moved on to meet the four House of Representatives' staff on our schedule. My favorite meeting was with Tonia, legislative assistant to Representative Eddie Bernice Johnson (D-TX-30). Representative Johnson has been serving as a Representative since 1993, when she was the first registered nurse elected to Congress. Tonia was engaged in everything my teammates and I were discussing and was willing to discuss with Representative Johnson any legislation needing her support. We spent a good amount of time discussing the previously mentioned legislation as well as the Affordable Care Act and preservation of basic patient protections it provides. At the end of our meeting, her Chief of Staff came and spoke to us and let us know that Representative Johnson is always a "nurse first."


My experience in our nation's capital opened my eyes to new ways that I can affect nursing practice and our healthcare system. My other teammates became friends and resources for future patients I will encounter. I plan to be more involved with reaching out to my lawmakers about pending legislation that will influence healthcare. All of the legislators were in their home districts on the Monday of our visit; this means they are accessible to me without a plane ride. I encourage you to get to know your US Senators ( and US Representatives (, invite them to your local SGNA meeting, write letters, and let them know what our digestive disease patients need from their government in regard to healthcare.




Digestive Disease National Coalition. (2017). About DDNC. Retrieved from DDNC:[Context Link]


Digestive Disease National Coalition. (2019). Digestive Disease National Coalition; Public Policy Agenda; 116th Congress, 1st Session. Washignton D. C. [Context Link]