Pride Month: Joanna Burgess on using advocacy to give every ostomy patient the quality care they deserve

Three years old, a cancer survivor living with a new ostomy, I did not have a voice. My parents will say they also did not have a voice. Treatment was dictated by my medical team in order to save my life. In 1965, when I received my treatment, having an ostomy was not talked about in “polite” company. There were also no ostomy nurses at Boston Children’s Hospital where I was treated, and my parents had to find their own means of learning how to care for me.

The fears, anguish and lack of support that my parents felt during my initial surgery and during my growing years still affects them today. My parents eventually received the care and guidance they needed, however not from a nurse or doctor, but from the manufacturer of my ostomy supplies.

My passion for advocacy, patient advocacy in my case, would grow from the seeds of despair planted in those early years. Love helped me to find my voice and I will be forever grateful to my husband for his support and inspiration which eventually lead to my receiving the 2011 Great Comebacks Award. In advocating for myself, I had inadvertently become a symbol of inspiration to others living with an ostomy.

In 2016, as my advocacy grew, I became a bridge connecting the voices and needs of those facing ostomy surgery with the voices and needs of their professional medical caregivers. I hoped that bridge would enable better understanding on both sides.

The visibility of my advocacy led to my election to the management board of directors of the United Ostomy Associations of America (UOAA) and subsequent appointment to chair their newly formed Advocacy Committee under the direction of Advocacy Manager, Jeanine Gleba, whose past advocacy experience included diligently working to pass legislation in New Jersey to cover the costs of hearing aids for children, a passion that came naturally as the mother of a daughter born deaf.

I am quite proud of the accomplishments of the UOAA Advocacy Committee over the past five years. I have learned that patient advocacy starts as a seed of recognition that change is needed and a belief that with passion and direction, the needed change will occur, no matter how difficult it may seem at first.

UOAA has recognized that ostomy patients today continue to be an underserved population of patients. There are between 725,000 to 1,000,000 people in the United States living with an ostomy or continent diversion, and approximately 100,000 ostomy surgeries performed each year. Many of these patients have only had limited access to a certified ostomy nurse and some have actually never had access. Many also struggle for ongoing assistance and care that often continues to be needed long after ostomy surgery.  

The most extensive project I have worked on as advocacy chair has been the revision and the raising of awareness of UOAA’s Ostomy and Continent Diversion Patient Bill of Rights (PBOR). This Bill of Rights, first created in 1977, was not well known or nor widely utilized. The language of the PBOR was updated and rewritten, and then adopted by the UOAA in 2017.

The PBOR has now become a tool to empower patients to advocate for their own care. It identifies the needs and expectations for those facing ostomy surgery and those who have already had ostomy surgery to achieve a high quality of life. Medical professionals also now use the PBOR as a tool to help them follow what are now being considered as best standards of ostomy care. 

We have a long way to go to make sure every ostomy patient is treated according to the PBOR. However, I believe the PBOR has set the foundation for the recognition of quality care for all ostomates. As a me+ clinical support nurse, I speak daily to those who are experiencing feelings of fear, confusion, despair and abandonment. It is easy to “hear” the voice of my parents on the other end of that phone, driving home to me that I need to keep that foundation strong and growing until every person living with an ostomy gets the care they need and deserve.