Why Advocate?

Have you ever considered, "Why is health advocacy needed?"

Communicating with healthcare providers may come naturally to some such as, asking questions with ease to better understand their diagnosis and treatment plans. While others may struggle to find the words to connect with providers, or even ask the necessary questions to ensure their concerns are heard.

Many individuals with heart failure face these barriers. It can often be unintentional, and determined by a patient's state. Other times, it may be the result of longstanding systemic policies that have gone unchallenged.

Self-advocacy and heart failure

Most of us have heard the saying, "Be your own best advocate." One of the first steps to achieve this is through self-advocacy. Oxford English Dictionary defines self-advocacy as “the action of representing oneself or ones' views or interests.”

I'm reminded of a time I experienced a life-threatening misdiagnosis. I was rushed to the hospital via ambulance in excruciating leg pain early one morning, and eventually told I had pinched nerves. This did not seem right to me, as my questions would go unanswered during discharge.

My heart transplant evaluation began the following week, however I had lingering concerns about the pain in my legs, which had returned. Additional testing led to a doppler scan that would reveal the pinch nerves were actually blood clots. There were approximately seven clots in my left calf, one in each groin region, and one clot had travelled to my heart. 

Ironically, I did not have time to be upset. I was just grateful they were found, and I was still alive. Through self-advocacy my persistence had saved my legs and possibly my life.

However, there is a component of self-advocacy that is often taken for granted and that's self-care. My participation in cardiac rehab aided in recovery following open heart surgery. While being mindful of my salt consumption, understanding good fats versus bad fats, and meeting daily protein goals have been essential for me in maintaining a heart healthy lifestyle. Additionally, therapy has supported my mental health during my heart failure journey. Self-care, or being in tune with one's body both physically, mentally, emotionally, and spiritually is self-advocacy. 

This is seemingly necessary for many heart failure patients.

Patient advocacy

I was diagnosed with heart failure in 2002, prior to the great boom of social media. Being a single mother of 2 sons (8 years and 4 months old); and only twenty-eight (28) years of age myself, I didn’t know anyone with heart failure. Especially not anyone who could relate to me. I felt alone, lost, and unsure of what the future meant for my son's and I.

I suffered in silence for years before joining Facebook groups for those with heart failure, specifically postpartum cardiomyopathy and LVAD groups. Finding a community of individuals who could relate to what I was going through mattered, and helped me in immeasurable ways.

Unbeknownst to me, I would soon be approached with my first opportunity to connect with another patient and their family in a face to face meeting. My LVAD team believed I could be an asset for other heart failure patients. I felt honored they even saw me in that light. This was a great responsibility, because I knew the difference it could have made in my life during my initial diagnosis.

Since the first meet and greet, I continue to connect with other heart failure patients and their families through patient advocacy. While we each have a unique journey, I'm able to share my experiences with open heart surgery. This provides support and a sense of understanding to aid other patients prior to partaking on their own journeys.

Outside of self-advocacy, this brings me the most joy and sense of belonging. I have truly discovered part of my greater purpose.  Through patient advocacy, I have the opportunity to live my purpose daily.

Systemic advocacy

Having lived with heart failure for over twenty (20) years, I have had my share of interruptions. This has led to unplanned hospitalizations. These abrupt shifts can result in unexpected expenses that impact my entire household. As an LVAD recipient, I have been listed as a utility “Priority Customer,” and been accustomed to making payment arrangements as needed.

Following a recent move, and after facing life-threatening utility disconnections, I would soon learn all patients did not have the same protections throughout the state. Now residing in a region of Georgia (U.S.) with public owned utilities, policies are approved by the local Board of Commission. These policies are not subject to any oversight by a state authority. This would open the door to systemic advocacy. 

I attempted to meet with my utility provider. Little did I know, this simple request would turn into years of advocacy on behalf of all of their customers who relied on electricity to live.

The Disability Law Center states systemic advocacy as "...working to create public policies that positively affect the lives of people with disabilities.”  Although my local work is not complete, I have been able to bring awareness to policies that may harm individuals living with an LVAD, and other life-sustaining medical devices as a result of heart failure.¹

Legislative advocacy

My heart failure diagnosis was induced by pregnancy. Following the birth of my second son, I was diagnosed with postpartum cardiomyopathy, also known as PPCM. In recent years, new data emerged on maternal health which recognized cardiovascular disease as a leading cause of death in maternal mortality. Due to this heightened sense of awareness, many states were considering legislation to address the maternal health crisis.^1,2

In 2022, Georgia legislatures were reviewing SB338, which would expand postpartum Medicaid from 6 months to 12 months in the state. This was crucial. Recent data had shown that over 50% of maternal deaths occurred postpartum with cardiomyopathy being a leading cause. ²

Continued access to healthcare during the postpartum period could be vital to saving the lives of Georgia mothers. As a member of the Georgia American Heart Association Legislative team I was able to share my testimony. Not only putting a face to the crisis, but showing a maternal health crisis can have a lifelong impact.

I was present as SB338 passed out of both Health and Human Services subcommittees. On July 01, 2022, Senate Bill 338 became effective in the State of Georgia. Showing me, firsthand, how sharing a lived experience can impact legislation to improve health outcomes on a state level. ³

So, why advocate?

Prior to my heart failure diagnosis, I didn't consider myself an advocate. Being a patient, in a sense, forced me to become intentional about my health, and taught me how to connect and engage with my providers. As a result, I have been able to use what I’ve learned in self-advocacy to connect with, and advocate on behalf of others.

However, I’m not alone. In the face of individual health obstacles and systemic social injustices we each have a unique voice that holds value. Through advocacy we have the power to positively affect health outcomes not only for ourselves, but also others.

Which types of advocacy do you participate in?