This was a huge week in the world of patient advocacy. Across social media airwaves, we learned that the S-codes for autologous breast reconstruction will be retained. It was a monumental accomplishment achieved because of the efforts of many organizations, surgeons, and breast cancer survivors across the United States. The title of this blog, “The Patient Voice Has Been Heard”, is a quote from someone who is a huge proponent of patient advocacy. I will reveal who the quote is from at the end of this blog.
The Centers for Medicare and Medicaid (CMS) held a public hearing on June 1 of this year after a great deal of concern regarding news that S-codes covering autologous breast reconstruction would be sunset on December 31, 2024. The time frame alone struck fear in those planning reconstruction like DIEP flap. The victory hearing this decision was reversed by the voice of many patients is well earned and worthy of celebration.
A Look Back
My presentation in June at the public hearing included this statement in my allotted five minutes.
It was one year ago I learned about the timeline of when these changes occurred. It seemed so out of the ordinary to me that coverage for the medical procedure, DIEP flap breast reconstruction, would change to limited coverage due to action taken by insurance that I did not fully understand everything I was hearing.
Terri Coutee
Over the next year I heard more and more about it. I tried to absorb the impact of this news for those coming after me making the decision to have DIEP flap and other autologous tissue reconstruction. I set the nonprofit, DiepCFoundation, up for the purpose of supporting and educating those who are considering breast reconstruction. Was this going to be a “forced retirement” for the Foundation? Those thoughts seriously crossed my mind. I anguished for those on the DiepCJourney Facebook group confused by all the news.
The Rise of Patient Voices
I saw the storm rising about the announcement to sunset the codes but at the same time I witnessed a surge in the patient voice. I will not begin to mention the large national organizations, surgical groups, and breast cancer patients who rose in unison to be heard. Why? I fear I would unintentionally leave someone out. But suffice to say it was a tsunami of patient voices and concerned people who treat those affected by breast cancer. This storm surge began in December of 2022 and continued until our patient voices were heard by CMS and the decision was overturned this week.
It was a movement. There is no other way to describe it. There were times we felt we were on sides that did not quite know how to unite our front. I am reminded of events in history when passionate groups of people moved mountains for change. One that comes to mind is the Women’s Suffrage Movement in the early 20th century. The words of a woman named Emmeline Pankhusrt resonated with me while the voices of patient advocacy rebelled against limiting full access and choice for breast reconstruction.
I come to ask you to help to win this fight. If we win it, this hardest of all fights, then, to be sure, in the future it is going to be made easier for women all over the world to win their fight when their time comes.
Emmeline Pankhurst
Using My Voice as a Patient Advocate
I voiced my concerns for the first time at the annual meeting of the American Society of Reconstructive Microsurgery in Miami, Florida in January of 2023. As I stood nervously at the microphone, I shared with the room of reconstructive microsurgeons I was here to listen to their concerns but was fully representing the voice of patients.
Like many, I signed up to present at the CMS public hearing in June. I was hesitant for two reasons. Living on the west coast and knowing the hearings took place on the east coast was a concern. I had to be camera and speaker ready at 6am. Our son’s office was my place of presentation. I was staying with my grandchildren while they were away on vacation. Instructions were given to my grandchildren, “Nanna has an important ZOOM meeting. Please do not open Daddy’s office door unless it is an emergency”.”. With work from home parents and the age of the children, they understood my request. Kudos to them and why I love them both so much. I am going to stake claim they were quietly part of this.
Were They Truly Listening?
Another concern I had, I simply had great apprehension our voices were going to have an impact to enact change. I spoke with friends before the hearing. Some of us felt CMS was holding the hearing just to soothe some ruffled feathers. Then I listened to one of the representatives from CMS at the hearing. I felt heard by this man. It felt like we all were heard and that he had genuine concern, and ultimately wanted our voices to make change happen. I do live my life full of hope. Guilty as charged but why would I do anything else in these circumstances? I had thousands of women on DiepCJourney waiting in the wings for better news.
Find Your Patient Advocate Voice Mentor
I am standing on the shoulders of giants in the breast cancer community. Patient advocates I know from around the world do not sit still long when it affects our breast cancer community. We want to be heard, have a seat at the table, and be invited to share our lived experiences. Using our voices to improve the lives of the newly diagnosed and those living with this disease is our mission. You are my guiding light when things get uncertain and dubious. There are so many of us who started this work inspired and motivated by a mentor. I was.
I will continue to let others know who my mentor is because I learn the value of educating patients and being a strong patient advocate voice from him. He is the man who performed my DIEP flap breast reconstruction in 2014 and is the voice of the quote and title of this blog.
To all those who mentor patient advocates, thank you. I leave you today with the conclusion of the quote from my mentor, Dr. Minas Chrysopoulo. Dr. C champions the voice of patient advocacy each day of his professional life. This is what he said after hearing the news that equal access to autologous breast reconstruction will remain.
This is a “huge win for patient advocacy”!
Minas Chrysopoulo, MD, FACS
As a three year survivor and next month, one year post phase1 DIEP Flap reconstructive beneficiary, I thank you Terri for keeping us informed and for advocating for all who have been through(or will go through) this terrible diagnosis. Thank you for being our voice and helping us to be heard!
Thank you kindly Satah. This means a lot to me. I am pleased to be able to share this news and will continue to support women like you, who are so keen to keep this coverage for all women who follow us.
Be well and I appreciate hearing from you.
~ Terri